"Back From The Brink, a Love Story," Part 1

ACK FROM THE BRINK A LOVE STORY BY HARRY G. HOYT, JR. BACK FROM THE BRINK A LOVE STORY Harry Hoyt i Copyright Circa 1990 by Harry G Hoyt, Jr. All rights reserved, including the right of reproduction in whole or in part. Printed in the USA. ii I dedicate this book to the most courageous, loving and lovable person I know, my wife, Gay. Anyone who reads this book will know why. iii ACKNOWLEDGMENTS I have learned that writing a book like this can be a very humbling experience. It's amazing how many grammatical and typographical errors one can make in the process of writing this many pages and how many sentences can be rewritten to make them clearer and easier to read. Our friend, Sandy Sohr, and Gay's cousin and friend, Judy Wilmeth, both English teachers, spent hours reviewing the text to make sure the grammar and sentence structure were correct and to catch the typos. Linda Wagner, a long time family friend, and Gay's step father, Jack Edwards, were both in positions to observe many of the events depicted in this book as they unfolded. Both were helpful in refreshing my memory and in making suggestions for improvements in the text. Dick Wagner, Linda's husband, read the manuscript and made some key suggestions for additions that were insightful and should be helpful to the reader. Gay's mother, Madeline Edwards, encouraged me to write the story and when she read the manuscript, further encouraged me to press to have it published, feeling that it could be of help to others. Jan Holland, social worker in the Adult Bone Marrow Transplant Unit at University of Iowa Hospitals and Clinics reviewed the book from her unique perspective and made several helpful suggestions. She also gave us strong support before, during and after Gay's transplant. I felt it was especially important that the medical details presented here be as accurate as possible. To ensure that accuracy, Dr. George River and Dr. Roger Gingrich, the two key doctors responsible for Gay's care, reviewed the manuscript, concentrating on the passages dealing with the medical side of the story, and made helpful comments and corrections. Gay's brother and her bone marrow donor, Dr. Thomas Isaacson and his wife, Beth, reviewed the book and made many helpful suggestions for improvement. Tom also gave me aid with my medical understanding. I would like to express particular thanks to Dr. Roger Gingrich who not only spent many hours, over the course of Gay's illness and recovery, patiently explaining the medical details connected with multiple myeloma, its treatment, bone marrow iv transplantation and the workings of the human immune system, he also encouraged me as I progressed with the writing and helped clarify sections where needed. Gay and I found Roger to be the highest form of physician; we found him to be a healer. Special thanks to my wife, Gay who read every page shortly after it was written and encouraged me all along the way. This book is a much better product because of the efforts of each of these people. I thank you all. No acknowledgment would be complete without mention of the marvelous support we have received during these past two years: cards, letters, driving Gay to doctors' appointments locally and fifty miles away in Iowa City, phone calls expressing support, running errands, meals brought to our home when our family had no time to cook and personal visits to the hospital and to our home after Gay was released, to mention just a few examples. Gay and I express our deepest thanks and gratitude to all of our friends and family and to all of the many people we have met along the way, including the fine people in the medical profession such as the doctors, nurses, technicians, clerical staff and others, who have given selflessly of their time, energy and patients to support us from the day Gay was diagnosed with multiple myeloma right up to the present. We have been helped by some mighty fine people. They made the road we traveled an easier one than it would have otherwise been. We thank you all. Harry G. Hoyt, Jr. v PREFACE This book was written in hopes that, by sharing our experience, we might help others who face trauma in their lives. It is directed to a wide range of people. For those who need or want a better understanding of multiple myeloma, its treatment, and the bone marrow transplantation process, I hope the descriptions included in these pages will be helpful. For those who must make tough decisions, I hope the passages describing the methods we used to gather and analyze information and decide the best course of action for us will be helpful. For those who are going, or have gone, through similar experiences as we have, I hope you can relate to the various events and our intellectual and emotional responses to them and in the reading, find catharsis. There are many interpersonal relationships around us that are shaky and, in many cases, broken. Perhaps our openly sharing a relationship that is truly built on trusting, loving and caring will be helpful to others. I have set down the events and conversations depicted in this book, along with Gay's and my personal reactions, feelings and thoughts, to the best of my knowledge and recollection. I have relied heavily on the extensive notes I took at the time to supplement my memory. I have quoted many different people throughout the book. Those quotations are not meant to document the exact words that were spoken, but are meant to convey the meaning of what was said in approximately the manner in which it was stated. Harry G. Hoyt, Jr. vi FOREWORD Fortunately, few of us are confronted, during our life times, with medical calamities or, at least, not until later in life. I suspect most of us feel that if confronted with such a calamity, we, along with our family, would rally to meet both the physical and the emotional challenges with energy to spare. From my experience as a physician, who has done bone marrow transplantation for ten years, I know that is not the way the script normally unfolds in reality. Life threatening illnesses, that last for months and often years, place both patients and their families under incredible stress. In these circumstances, one witnesses just how fragile, contrived and superficial relationships, that seem solid on the surface, really are when the going gets tough and the time runs long. Patients must then endure, not only the stress of their disease and its treatment, but also the stress of the disruption and unraveling of family relationships. They watch helplessly as relationships they thought they could count on in times of need, start to dissolve and, in some cases, disappear. In "Back From the Brink - A Love Story," Harry chronicles the journey taken by him and his wife, along with their family, through Gay's historically fatal illness, its diagnosis, early treatment and finally a bone marrow transplant. The story is truly a beautiful and touching love story. It witnesses to the power of things that, in this day and age, are often assigned a secondary role in restoring and maintaining health; things like faith, hope and love. It is the story of a special lady who, at forty-five, confronts malignancy head on and, with the help of a "cast of thousands," composed of family and friends, won it all. If I could only distill and bottle, for later distribution, what Gay has and what her family has given her, our medical remedies, as great and powerful as they are, would not have to work nearly so hard or so long. This story will not only warm your heart and soul, it might just provoke some preventive caring. Roger D. Gingrich, MD, Ph.D. Director, Adult Bone Marrow Transplant Program Division of Hematology-Oncology University of Iowa Hospitals and Clinics vii _________________CONTENTS _____________________ CHAPTER TITLE PAGE Inside Cover i Copyright ii Dedication iii Acknowledgments iv Preface vi Foreword by Roger D. Gingrich MD, PhD vii Contents viii Title Page x I The Diagnosis 1 II Spreading the Word 23 III The Second Day, Furthering Our Understanding 30 IV Sunday at Mercy 49 V Alternative Treatment, Understanding Bone Marrow Transplantation 56 VI The First Attempt at Treatment, Alkeran and Prednisone 76 VII The Second Attempt, V A D 104 VIII Prelude to Transplant, The Decision 122 IX Waiting for a Room 143 X University Hospitals, Getting Started 151 XI Radiation Treatment Phase 169 XII Chemotherapy Phase 201 XIII Transplant Day 214 XIV After Transplant 245 XV Out and Back In Again 246 XVI Deja Vu 258 XVII The Eyes Have It 293 XVIII Concluding Notes 298 Appendix A Table of CBC Blood Test Results 299 Appendix B Graph of SMAC Blood Test Results 302 ix BACK FROM THE BRINK A LOVE STORY BACK FROM THE BRINK A LOVE STORY CHAPTER I THE DIAGNOSIS I answered my office phone at 8:30 on Friday morning as I had hundreds of times before, expecting one of my colleagues with a question or a sales person wanting me to look at a new product his or her company had just developed. It was February 10,1989. "Harry Hoyt speaking". The voice on the other end answered, "Mr. Hoyt, this is Dr. Finan. The results of your wife's blood tests came back this morning." My wife, Gay, had gone to our regular doctor, Dr. Miller, with back pain. He ordered some blood tests and x-rays, but assumed the problem was arthritis so had referred her to Dr. Finan, a rheumatology specialist. Dr. Finan had phoned Gay with some preliminary test results the day before and she had asked him to call them to me. He had done so, saying the test could indicate the presence of a tumor and perhaps several other things. He had asked Gay to get some additional tests which she had done. The results of those tests were now back. "What do they show?" "Well, Dr. Miller had some blood tests run before he referred the case to me. The results came back, but we needed more information so I had some further blood tests done. The results came back this morning." I listened patiently, but began to fidget in my chair. I knew all of this and wanted to know the answer to the question. Dr. Finan continued, "The results lead me to believe that your wife has multiple myeloma. The results are not back on one additional test I had run, but from what I know now I'd say the diagnosis is pretty conclusive." "Multiple myeloma". I said the words for the first time out loud. "That sounds awful, like a cancer; is that what it is?" "Yes, it's a cancer of the bone marrow." 1 As he was patiently explaining the disease to me, I felt my mind going numb. I didn't want to hear the message he was giving me, but I fought to keep tracking with him. I knew I had to know, I had to understand, I had to ask questions to fill in the blanks. This was not the time to emotionally cop out. Maybe later, but not now. "The blood tests show that there is an abnormally high level of protein in her blood. The protein is being caused by a monoclonal B cell. B cells are found in different tissues of the body, but mainly in the bone marrow. They are a type of white blood cell that creates antibodies to fight disease. The antibodies are made of protein and are normally one of the good guys in our bodies. In this case, however, one of the B cells is malignant and is reproducing, or cloning, itself over and over again. Each new B cell is creating antibodies that are released into the blood stream creating the high protein level. It is a major indicator of multiple myeloma. There is one piece of good news. The kidneys seem to be functioning very well. This disease can shut them down; that hasn't happened." "I'm glad to hear about the kidneys, but tell me how these myeloma cells hurt the body?" "The number of malignant B cells grows relatively quickly in the bone marrow and crowd out normal cells so they can no longer function properly. The antibodies produced by the B cells are abnormal and not effective against infection. They also interfere with the normal production of antibodies. The ultimate result is that the body's immune system loses its effectiveness. Also, the myeloma cells pack the bone marrow and put tremendous pressure on the bone from the inside out. The cells react with bone tissue to punch small holes in the bone called lytic lesions. These lesions in time can completely penetrate the bone and weaken it to the point of breaking. We took some x-rays yesterday to see if Mrs. Hoyt had any of these holes in her bones. We found there are holes in her skull, pelvis and both arms. "Are any of her bones in danger of breaking now? "I really can't say. More x-rays will be required to make that determination." "What should our next step be?" 2 Dr. Finan had been waiting for this question and had already made arrangements for our next step. "I have referred your wife's case to Dr. River. He is one of the best oncologists in the area and works on the Iowa side of the river, so that should be convenient to your home. I spoke to him just before calling you. He would like to see your wife at the hospital this morning." "Which hospital, Mercy or St. Lukes?" "He works out of both of them so you can go either place." "We'll go to Mercy since Gay had her blood tests and x-rays done there and it's closer to our home. Will she have to be admitted?" "Yes, Dr. River will want to run a number of tests. I think you should go prepared for her to spend a few days. I don"t know how long." "Why the hospital?" "I assume that Dr. River will want to start chemotherapy right away. That could result in a lot of dead cells in the blood that the kidneys will have to flush out. That, along with the heavy load of protein already in the blood could clog the kidneys and cause renal failure. If that happens the safest place to be is in the hospital. Also, I think Dr. River will want to get a much more accurate reading on the condition of your wife's bones. If they are in bad shape she should be in the hospital until protective measures can be taken to strengthen them, like putting pins in." He paused for a moment and then added in a softer voice, "I'm very sorry to have to bring you this news. Rheumatology is my speciality, not cancer. But, I would be happy to try to answer any other questions you may have. Of course Dr. River will be able to give you much more detail when you see him." "How serious is this disease?" "It's a killer. I don't believe there is a known cure. I don't know the statistics, but I know its a bad one. Now that we know what we are dealing with we should start treatment as soon as possible." There was another short pause and then he added, "I'll call Mrs. Hoyt now and tell her." 3 "Please don't", I said. "Unless there is some code of ethics that requires you do that, I would prefer telling her myself." He agreed, relieved that he would have to deliver the message only once and he had just finished doing that. After hanging up the phone I mechanically began putting away the materials I was planning to work on that morning and started thinking about all of the things I had just been told, turning them over and over in my mind to make sense out of them. I told my secretary that I thought Gay might have to be admitted to the hospital. My boss was in a meeting so I asked her to let him know that I would be gone for the rest of the day and would be back in the office on Monday. As I pulled out of the parking lot, I pictured Gay in my mind and my thoughts turned to our twenty happy years of marriage. Gay was a beauty when I first met her and was one of those women who grew more attractive with the years. Her father's hair had turned silver at an early age and Gay's was following suit. When her long blond hair began to have silver strands weaving in among the gold, she cut it short so that now it was an unusual combination of silver and various shades of blond. She wore it in soft waves that swirled down her forehead and swept back from her face, past her ears and down to the back of her neck. Her hair nicely complimented her sparkling, light blue eyes. She stood just under five foot seven inches tall with a slender figure both men and women admired. Gay made a friend out of everyone she met and always had a ready smile. When Gay married me, she married a family. I was newly divorced when we met on a blind date in January 1967. We went to a play and had a marvelous time dancing at the cast party afterwards. I took her to meet my four children the next day. Erin was five, Matt was four, Paige two and Andy one. We fell in love and were married on a very hot August evening in 1968. The church had no air conditioning. Gay always smiled when she told the story. "No one told me I was a beautiful bride. They just told me how hot I looked." When she told Mr. Austin, the superintendent of the Rock Island school system, that she was leaving her third grade teaching job for a marriage with four kids, he called it her personal "head start" program. He was right. Shannon was born two and a half years later and shortly after that Gay adopted the older four children. She told me she wanted them to be as much hers as Shannon 4 was, including all of the loving and legal responsibilities adoption entailed. In another year and a half we got a pleasant surprise and named him Cameron. Our marriage started as a very close and loving relationship and had grown stronger with the years. We were always able to communicate easily with each other about the pleasant and the not so pleasant parts of life. My weaknesses were counter balanced by her strengths and where she was weak I was strong. She was my best friend, and I was hers. My mind then flipped back to the events that had led up to Dr. Finin's call. Last November Gay began having some pains in her back, but dismissed them as being normal and something that would pass. But, the pain intensified and began to show up in different parts of her back. She had had a mild case of pneumonia about two years before and thought it might have returned, causing the pain. She went to see our family doctor, Dr. Miller, for his opinion. He checked her and could find no signs of pneumonia. The pain became more intense over the holidays, but that was a very busy period and she felt there was no time to investigate further. One winter day in late January she started on a brisk, early morning walk around Northpark Shopping Mall with three of her close friends, Laura Rovang, Kathie Walsh and Linda Wagner. The four of them had done this same walk many times before and felt it was a relatively pleasant way to get some solid exercise...a sort of talk and walk or chat and scat. This morning was alarmingly different, however. The pain was much worse in Gay's back and had also traveled to her hips. She was unable to keep pace with the others and Laura and Kathie, who were well out in front, looked back to see that she was limping. She could no longer assume that the pain was normal and determined to see Dr. Miller again for a complete diagnosis. I was relieved when she told me this since I was becoming alarmed at this elusive and unexplained pain. So were Laura, Kathie and Linda. This visit to Dr. Miller led to tests, referral to Dr. Finan, more tests and the phone call from Finan. Yesterday Gay slept in after I departed for work. She got up as she usually did to take our two youngest children, Shannon, 18 and Cameron, 15, to school. She went into the bathroom to braid Shannon's hair, but before she could finish her back began to convulse with a series of painful spasms that left her powerless to move. Shannon helped her back into her bed. Shannon wanted to stay home to be of whatever help she could, but her mother told her to drive herself and Cameron to school. Reluctantly, the two of them departed in a state of understandable distress. After some time the spasms eased up enough for Gay to crawl from the bed to her chair in the den where she had a heating pad. After some time the heat relaxed the back muscles enough to make movement possible. While the heating pad was still 5 working its wonders, Dr. Finan called to say that the blood test results were back and asked her to come to his office so he could explain them to her. She replied that she would try. She then called our son Matt at the People's Drugstore he managed and asked him if he could take her to Dr. Finin's office. He picked up his wife Debby and then the two of them came immediately. The two of them helped Gay into the car and took her to the office. When she arrived, Dr. Finan told her that the tests showed, along with a number of other medical details, that she probably had some kind of tumor. Gay felt that, in her present state of discomfort and with the anxiety that had set in because of the morning's incident, she was not comprehending enough of what she was being told. She asked Dr. Finan to call me with the same explanation. She felt I would ask enough questions to get the message straight. He promised to do that and then asked her to go to Mercy Hospital so blood could be drawn for further tests and for a series of x-rays that would be more conclusive in the final diagnosis. Matt and Debby drove her to the hospital, stuck with her until the blood was drawn and the x rays were taken and then took her home. As I continued my way home, I silently reviewed what Dr. Finan had told me and began organizing it so it would make sense to Gay. I told myself that I should try to maintain a logical, analytical approach and not fall apart in an emotional stupor. I reasoned that if I could accomplish that much Gay could draw strength from me for whatever we had in front of us. Perhaps it would also give me strength. Hopefully, there would be time and opportunity to let down later. My travel through the Illinois Quad Cities went easily and quickly. I crossed the Mississippi River and got off of I-74 at Spruce Hills Drive and then headed the car west along Kimberly Road as I normally did. Now I was on city streets and began running into red lights. That annoyed me some, but my mind quickly moved from the mechanics of driving to a myriad of questions. What if Gay was not home? My mind began to roam over all the places she might be. Most likely at one of our friend's homes. Should I start calling them? What would I tell them? I dismissed these questions, deciding that Gay was probably home and if she wasn't I would face them then. With that set aside, I began to wonder what and how to tell our six children and others in the family. I settled on some approaches, but determined to discuss them with Gay when the time was right. She would have a very clear idea of how and when this should be accomplished. I'm not sure how long it took to drive home that morning. I assume about the 25 minutes it usually took, but my mind was so occupied, I had very little sense of the 6 passage of time. As I pulled into our lane my mind returned to the challenge of presenting this to Gay in an orderly manner that would give her the benefit of the time I had had to think about Dr. Finin's message. I entered through the garage entrance and walked through the house to the den where I found Gay sitting in her chair, talking on the phone with Linda Wagner. I could tell by the expression on her face that she was surprised to see me home at that hour, but the look faded quickly as she grasped why I was there. She told Linda that I had come home and that she would call her back later. She said nothing further, just gave me the big smile of welcome I had come to know so well. I pulled a chair up close to hers. "Dr. Finan just called the office to tell me the results of yesterday's blood test and x-rays. He would have called you, but I told him that I preferred to give you the results." She shifted slightly in her chair and patiently listened. I took both of her hands in mine and continued. "The blood tests show that you have a great deal of monoclonal protein in your blood. That leads Dr. Finan to feel you have multiple myeloma." I thought this might bring a reaction, but her face didn't change expression. After many years of being married to me she knew that I would have much more of an explanation than that and she was waiting for me to tell her the rest of what I knew. I explained what Dr. Finan had told me about the malignant, cloning B cells, the lytic lesions in her bones, the dangers of this disease and finally that there was no known cure for multiple myeloma. When I finished, we sat for a moment in the quiet of the den squeezing each others' hands. Then our tears began to flow spontaneously. Her eyes filled with water that began running down her checks. The same thing was happening to me. We made no attempt to hold back or brush the tears aside. We had never disguised our feelings from one another during our married life and this didn't seem like the time to start. As the vision of Gay's face blurred through my tears, I reached out for her and we held each other very close, letting our tears flow together as our checks gently touched. This was a very tender moment. I was not only embracing my wife, but my best friend and had just told her that she might die soon. She was holding her best friend, too and wondering how I would get along without her if the diagnosis was correct. It was a good time to share our tears. As we eased apart we began to laugh at how we looked...red eyes, puffy cheeks and wet faces. What a sight. It was a welcome release of the tension. 7 "I'm glad you came home to tell me. I wouldn't have wanted to hear it from anyone else. It may sound a little strange, but I'm glad we have the answer now and can get on with finding a cure. It's worse not knowing what's going wrong with your body." She paused and then, "When do you think we should go to the hospital?" "We can go whenever you're ready, but we probably ought to get there before noon so we can meet with Dr. River. I would like to find out more about what we're dealing with." "We need to tell the children," she said. "Have you thought about that?" "Yes, I think I should get Shannon and Cameron together late this afternoon or tonight whenever I can get a hold of them. After that I should phone the rest of the older kids and your mom and Jack and my aunt and uncle. I will also have to tell all of our friends." "I think you're right except Shannon has her college entrance exams tomorrow morning, the A.C.T.'s. If you tell her tonight, she might not be able to concentrate on the test. We can't take that chance." "You're right. I can tell them that you are going into the hospital for some tests to find out what's wrong with your back. In fact, that's true. Then I will tell them what we know on Saturday afternoon after Shannon is done with the test. I may be able to call some of the family tonight and the rest Saturday afternoon or night, whatever works the best." Gay thought for a moment and said, "I think that will work fine. We have to tell them the truth as completely as we know it, but this little delay won't hurt and they will understand why we did it this way." She then abruptly asked, "Is this keeping you from doing something you need to do at the office?" I couldn't help, but marvel at this question. After what she had just learned, she was concerned that taking her to the hospital might foul up my schedule. "No, I have no commitments." "I'm glad. What do you think I should take?" We discussed what might be needed at the hospital and what she would be most comfortable wearing. We then gathered those things together and packed them in a bag. If we forgot something it would be easy enough for me to run home to get it. 8 On the way to the hospital Gay said suddenly,"I almost forgot. Cameron has an appointment tomorrow with Dr. Bovenmeyer to check his acne. Do you think you can take him?" "Do you remember what time he has to be there?" "I think its 10:15. You can check my calendar to make sure." "Sure, I can do that while Shannon is taking her A.C.T.'s When we arrived at the hospital we went directly to admitting. They seemed to be expecting us and we assumed that Dr. Finan had called ahead. We were impressed by that and thankful. We sat with the woman at admitting, answering all of the many questions about Gay's health, current condition and, of course, our insurance. When all of the papers were filled out, she clamped a plastic identification tape to Gay's wrist and directed us to Gay's room, number 7036. We held hands and took the elevator to the seventh floor. There we checked in at the nurses' station where a nurse directed us to the proper room. It was a barren room with beige walls and a single hospital bed in the middle. There were two chairs near the door and a dresser under the window on the far side of the bed. The window had a picturesque view of the residential area stretching away from the hospital toward our home in the distance to the north. There was a small closet by the window, and a bathroom behind a brown, wooden door that slid in and out of the wall. As we were looking around our new quarters, a nurse came in to tell us that Dr. River was expecting us, but would probably not be around to see us until much later in the afternoon. Gay changed into a comfortable night gown, far preferring that to the drafty, open backed hospital gowns that rob you of your privacy and dignity. She then organized what little else she had brought into the drawers in the dresser. I hung her coat in the closet and settled down to wait for Dr. River. We talked quietly for a while. That stimulated a number of questions for Dr. River so I wrote as many as I could think of in a notebook I often carry with me. When I finished I looked up to find that Gay was waiting for me to complete my task. 9 She began, "Since we aren't going to see Dr. River for some hours would you mind going over to Rock Island to get Mom's and Jack's mail. I haven't gone over to get it in about ten days and I'm afraid there may be something important they should know about. I should call Linda back anyway. I'm sure she has guessed why you came home. She is probably worried and will have lots of questions. You would probably prefer doing that than listening to our chatter...it could go on for awhile." I thought about protesting since I wanted to stay with her, but I could see she would continue to worry about the mail until it was taken care of and the change in activity might help me to think. I kissed her good bye and gave her a long hug. She reached for the phone as I headed out the door. I drove to Mom's and Jack's home. They were spending the winter in the Phoenix area in their travel trailer as they had for several winters. Gay was in the habit of picking up their mail while they were gone and sending important pieces to them. I got the mail and returned to the hospital. Gay had finished her call with Linda and we spent the next hour talking and sorting the mail into two piles. When we finished, Gay put the pile that could wait for their return into a sack and I put the rest into a large envelope I had picked up along the way to send to them in Phoenix. Dr. River came through the door at about 5:00 that afternoon. He was a man in his fifties with graying hair and a long, strong face. His five foot ten inch frame was draped with the obligatory white coat that doctors seem condemned to wear constantly. "Hello, young lady, you must be Mrs. Hoyt. I'm Dr. River." They shook hands and I then introduced myself. He sat down in the unoccupied chair. "Dr. Finan referred your case to me. I've had a chance to review all of the records, especially the blood tests and x-rays. I have asked an orthopedic surgeon to look at the x-rays, too. I think I know in general what he is going to tell us, but I would like more detailed analysis of the x-rays than I'm able to make myself. You will find that I will tell you what I know without pulling any punches. I'll also try to answer any questions either of you have to the best of my knowledge. If you ask a question I can't answer, I'll tell you so. There is one thing I have learned in my years of practice and that is I don't know all the answers when it comes to cancer and no one else does, either. Before I tell you what I think is going wrong let me give you a quick physical to make sure there isn't something here I'm not expecting." He checked Gay's heart, listened to her lungs, thumped her on the upper back, prodded her abdomen, and asked her all of the normal questions. He ended by asking if she had any specific pain anywhere. 10 Gay reported, " I've had a good deal of pain in the middle of my back. It does move around my back some, but it's usually about in the middle. I can't really tell if the pain is coming from my bones or muscles. It's been getting a lot worse recently and, at times, is excruciating. When it really gets bad, my back muscles go into spasms and the pain just locks me up so I can't move. That happened yesterday morning and my daughter had to help me to my bed. Also, I've had increasing pain in my ribs under my right breast. I have had some on the left side too, but mostly on the right. When I walk I get a pain in my hips. That started coming on hard about a month ago." "What have you been doing for the pain?" "Dr. Miller prescribed Tylenol 3 and I take that when it gets bad. It cuts the edge off the pain, but doesn't really take it away. I have found that an electric heating pad helps my back as much as anything else." She thought as she said this and then added, "I probably should have brought one from home, but I didn't think about it." "Dr. River quickly replied, "We have a heating pad here at the hospital that works with hot water. It's called an Aqua K-Pad. I suspect if the one you have at home was helpful, this one will be even better. I'll see that you get one. You can continue with the Tylenol 3. That has codeine in it and should give at least some relief. I'll prescribe some before I leave. You can take it as you need it, but no more than one to two pills every four hours. "I will want to run several more tests and get some more x-rays to build a baseline of data to measure our progress against the disease as we move ahead with the treatment. In that process I'll order x-rays of each of the areas you just mentioned to see if we can identify the cause of the pain." "When we finish this conversation I will take some bone marrow from your sternum, that's the breast bone, for analysis to nail down the diagnosis, but from the information we have now it is all, but certain that you have multiple myeloma. This is not a very common cancer, but it is a nasty one." He then told us many of the same things that Dr. Finan had explained. I was glad to hear it repeated, however, since I wasn't sure I had absorbed it all the first time through and passed it on to Gay accurately. Dr. River continued, "There are three types of antibodies produced in the body. Well, actually five, but only three of them are major players in our body's defense, 11 IgA, IgM and IgG. Any one of these three types of protein could become elevated as a result of the multiple myeloma. Your IgG is well above normal. That's the least problematical of the three." "What does IgG, etc, stand for," I asked. "The Ig means 'immunoglobulin,' which is a big word for antibodies. The A, M and G designate the type of antibody." "That helps,"I said, "Thank you." He paused for a minute, collecting his thoughts, and then went on. "We should start treatment right away. As I said earlier, I will want to take additional x-rays and run some more blood and urine tests to form a baseline. These tests will also further confirm the diagnosis, but I'm sure enough of it at this point to recommend we start a regimen of chemotherapy beginning tomorrow morning." "What kind of chemo is best for fighting multiple myeloma?" I asked. "There are several different combinations we could try, but I think we should start with two drugs, Melphalan and Prednisone. The trade name for Melphalan is Alkeran. You will hear it referred to both ways. This combination is relatively mild. Don't get me wrong. All chemos are deadly rough, but these are less harmful than some others that we could use. Some doctors would put you on the M2 protocol, for example. That has horrible side effects for most people and in this case I'm not convinced it would be any better. If we don't find that the Alkeran and Prednisone are working, we may have to consider some other alternatives." "What can I expect to be the side effects?", asked Gay. "The first thing to understand about the side effects of any of these drugs is that they affect different people differently. I can't predict with great certainty just how your body will react. The range could be from barely noticeable to mental disorientation. Lets take the Alkeran first. It can cause you to feel nauseous or get sick to your stomach. I can give you something to relieve that, probably Compazine would work best. You could also get a skin rash and you could lose some hair. Chills and fever can also occur. There are some other, less likely, side effects, but they are very serious when they happen. One of them is the possibility of contracting leukemia from prolonged use. I don't think that's a very big risk, but it's one we will have to take if we are to have a chance at slowing the multiple myeloma. Prednisone can cause nausea, vomiting and skin rash as well. It can also 12 cause menstrual problems, facial puffiness, weak muscles and unusual fatigue. You may experience back or rib pain and sometimes depression will set in. Some patients feel nervous and have trouble sleeping. Compazine can also cause some problems. It can make you jittery and slow both mental and physical processes. You shouldn't drive when taking it. It won't be a picnic, but it is the best attack we have. I'll see that you get some pamphlets that explain this in more detail. You both can look them over and if you have questions I'll do my best to answer them. This is a lot to absorb all in one sitting. "How will the chemicals work in Gay's body?" I asked. Chemotherapy targets the most rapidly dividing cells in the body. The malignant B cells divide rapidly so they will be killed by the Alkeran. The Alkeran attaches to the D N A strands on the chromosomes of the cells and welds the strands together so that when the cell tries to divide, it will be unable to do so and will die. Unfortunately all other white cells are also rapid dividers so the chemical also kills a mess of the good guys. The concept is that the healthy white cells can replenish themselves faster than the malignant ones so over a period the malignant cells will be killed off and the normal white cells will hold on and come back. Unfortunately the cells of the hair and the G I (gastrointestinal) tract also reproduce quickly so the chemo inadvertently picks them off, too. That's why hair loss and nausea sometimes occur." "What about the Prednisone?" "Prednisone is a steroid. Its function, as we will use it, is to build up the strength of the bone marrow so it can continue to successfully produce white cells, red cells and platelets. The white cells are the defenders of the body. They attack foreign tissues or cells that come into the body. The hemoglobin in the red cells carries the oxygen around to all the cells of the body from the lungs and takes the carbon dioxide from the cells back to the lungs to be exhaled. The platelets clot the blood when you get cut. Without platelets the blood would seep through the vessels and cause internal bleeding." "What are the downside risks we are dealing with?" "That's a good question. The constant challenge in giving chemotherapy is to kill off the malignancy without damaging the immune system to the point where other diseases can easily invade the body and kill the patient. You will take the Alkeran and Prednisone over a six day period and then be off for about four to six weeks, then another six days of chemotherapy. We will do a blood test every week to 13 check all the blood levels, but we will be particularly interested in the white count. Those are the cells that protect the body from disease and infection and are most negatively affected by the chemo. If we can keep them above a certain level, we will continue the chemo on schedule. If they fall below that level we will delay chemo until the white cells recover enough. There are two dangers here. One is that the chemotherapy kills so many white cells that another disease or infection takes hold that the body can't fight off. The other is that the malignant cells grow an immunity to the chemo and continue to reproduce and the tumor load continues to grow out of control. Either result can be fatal to the patient." "When I think of a tumor," I said, "I think of a load of cells all in one place in the body, some malignant and some not. You used the term 'tumor load', but I sense that you mean something a little different." "Yes," he replied, "in multiple myeloma the tumor is not all in one place. It is throughout the bone marrow. Tumor load refers to the total of all malignant myeloma cells in the body, mostly bone marrow." While we are on that subject, I want to caution you to stay away from people who have colds and to avoid crowds where you may run a chance of picking up germs. Kids are particularly dangerous. They are like walking sewers with all of the germs they carry around. Don't pick up babies." "That's going to be hard on you, Gay," I said. I turned to Dr. River. "Gay loves her grandkids. It will be tough for her to keep from playing with them." "Well, just don't do it," he said. "You are going to have to be selfish and think about what is good for you. If friends come to your house with colds or infection, send them home. If that isn't possible go to another room and stay away from them. When people want to visit you, find out first if they have a cold. If they do, ask them to wait until they're over it before coming. I suspect, Mr. Hoyt, you will have to be gatekeeper. Keep people away from your wife who could pass germs to her. Remember, once you start on the chemo, your ability to fight off disease and infection will be greatly impaired. Viruses and bacteria that your body has routinely fought off in the past could become lethal once your white count begins to drop. And that will happen with the Alkeran, or any other chemo for that matter. You could become particularly vulnerable to pneumonia. I have ordered a vaccination called Pneumovax that will help fight off pneumonia if it comes calling. The nurse will give that to you later today." 14 "What are Gay's chances of surviving this?" "Another good question, but harder than the last. The record books will tell you that one third of all multiple myeloma patients respond to chemo and the cancer goes into remission. One third remain about the same...they don't get better or worse for a period. The last third get worse regardless of treatment. The truly insidious thing about this particular cancer is that even if you can get it into remission, it always comes out of remission. Sometimes we can get it back in remission, but it pops out again. Medical science has not found a cure that we know will work. We are fighting a delaying action. We will be trying to prolong life and at the same time be sensitive to the quality of that life. If the disease does not respond to the medication, Mrs. Hoyt, your bones will get weaker and that will cause more pain. Your body will become less able to fight off diseases of all kinds. In this case death will probably come from something other than multiple myeloma, like pneumonia. I know, Mrs. Hoyt, that I have the drugs and knowledge to keep you reasonably comfortable if things get rough. I won't know if I can put this thing in remission until we try." "What kind of life span can we expect?" "Again, I'll give you the statistics, but will then want to follow up with the good side. The average life span from the time of diagnosis to the time of death is about two years. That includes the people in all three categories I just mentioned. It also includes all of the people whose chances are much worse than yours. "You have a good chance at a life span that is longer than the average. You have a number of things going for you. First of all you are only forty- five. This disease is fairly rare in anyone, but very few people as young as you get it. Most are in their sixties, seventies or eighties. Secondly, it appears that you are in good health other than this. Also your kidneys are functioning very well. Renal failure can come with multiple myeloma, but so far yours are holding up very well. You are not releasing calcium into the blood. If you were, we would be concerned that the disease was attacking the bone to the point of leaching calcium out of the bone into the blood. That would indicate rapid bone deterioration. You do have bone loss that I'm concerned about, but not to that degree. I think we have a reasonable chance of getting this in remission, but we won't know for sure until we see how you respond to medication." "How long do you think I will have to take the chemo before we see results?" 15 "You may be on it for as long as a year, but it's hard to predict with any accuracy." "What are the chances that the cancer could move to another part of Gay's body?" "I've never seen multiple myeloma metastasize. That doesn't mean it couldn't, but the chances are very slim." "Can you tell us more about what is happening to Gay's bones? How serious are the holes that are showing up on x-ray and will they repair themselves?" "I can tell you more after I look at more x-rays. I also want a orthopedic surgeon to give me his opinion, hopefully sometime tomorrow. I can tell you that I don't want you to put any undue weight on your bones or twist your limbs. If they are weak we don't want to tempt fate. The bone can heal itself, but it will take a long time to accomplish. At the least, your looking a year after the disease is in remission, maybe longer. If you have bones that are in danger of breaking we may need to reinforce them with pins. If you have any bones that are particularly painful or damaged we may wish to radiate just those areas to stop the disease. We should know more in a day or so." "Assuming we get the disease in remission, what do we do then to keep it there for as long as possible?" "We have some time before we get to that point. Between now and then I will have to give that a good deal of thought and will be consulting with others. There is a fairly new drug on the market now that we may want to try. Its called Interferon. It's only been in use for about three years and its effectiveness has not been proven. By the time we have to make a decision we may have enough additional information to lead us to want to try it. Things are happening pretty fast in this field and within a year there could be another way to go that we are not aware of today. "There is another finding in the blood tests that is a little unusual and may or may not be important. You have a cryoprecipitate. That means that the protein in your blood comes out of solution after it has been allowed to sit for awhile and the blood gets cold. I want to ask some of my colleagues in other hospitals what they think the significance of this may be. I'll probably start with the University of Iowa Hospital. 16 I want to add one more thing. You might be embarrassed to ask. I encourage my patients to get a second opinion. We are dealing with a very serious matter and second opinions won't hurt my feelings a bit." "I appreciate you raising that point," I said. "I'm sure we will want to talk with others in the field to both increase our knowledge and to better understand our options as we progress down the road. Where would be the best places to consider?" "Mayo Clinic, Sloan Kettering, M. D. Anderson, Seattle and Iowa City are all good. I plan to be in contact with colleagues in Iowa City about your case between now and tomorrow, in fact. I have consulted there many times with a man whose opinion I think highly of. His name is Roger Gingrich. In fact I have tried several times to get him to join me in practice here in the Quad Cities, but he is more interested in what he can do in the way of research and practical application at a place like Iowa City. Have you any more questions?" "No," said Gay, "you have told us a lot already." I added, "It will take us a bit of time to absorb all the information you have given us this afternoon. We very much appreciate your patience with all of our questions, thank you." "You're both quite welcome. As we go forward you will undoubtedly have more questions. Please don't hesitate to ask them. Well, let's take a look at that bone marrow. Some doctors take bone marrow from the back of the hip, but I've found that, at least the first time, it is less painful to go after it in the sternum. The bone is not as thick there so I don't have to drill as far. I'm going to numb the area first. After it's numb, I'll use a special aspiration needle to drill through the bone to the marrow. Then I'll aspirate a small amount of marrow from the center of the sternal bone." He called for a nurse to assist him and one soon appeared in the room carrying a tray of the instruments and materials that would be needed for the procedure. Gay lay back on the bed and I crossed to the far side by her head and offered her my hand. She took it with a firm grip to let me know she was okay. Dr. River began the procedure just as he had described it and explained what he was doing as he went along. Having the explanation gave Gay assurance that he was not going to do something that might cause her discomfort without warning her ahead of time. 17 That assurance helped her to be more relaxed during the procedure than she otherwise might have been. I appreciated it too because I wanted to understand what he was going to do to my wife and would have felt uncomfortable asking him questions while he was concentrating on his work. "I'm going to disinfect the area with an iodine solution called Betadine," he said. "It's not very pretty, but it works." With that he swabbed the area with a brown liquid and then removed it with alcohol. "You'll feel a little prick, now. I'm going to deaden the skin with a some lidocaine. It's an anesthetic like novocaine." He then injected the lidocaine into Gay's skin at the point he had selected for making the passage to the bone marrow. After waiting a few moments for the anesthetic to take effect, he inserted the needle in the same place and eased it straight down to the top of the bone. "I'm putting some of the stuff right on top of the bone to deaden that, too. You shouldn't be feeling this." "I"m not," said Gay with a note of pleasure in her voice. Dr. River then selected the special aspiration needle from the tray the nurse had provided. This was a short, sturdy needle with a cutting edge on one end and a strong plastic handle on the other that formed a tee with the top of the needle. "I'm going to insert the tip of this needle through the outer layer of the breast bone and into the cavity where the bone marrow is located. You shouldn't feel any pain. If you do, please let me know right away. You will feel pressure on your chest as I drill downward with the needle." He placed the sharp end of the needle in the hole he had just made to inject the lidocaine and began slowly turning the instrument back and forth and pushing it down at the same time. He expressed satisfaction when he felt the tip of the needle cut through the outer layer of bone and enter the marrow cavity. "Ahh, we're through the bone." As he said this, he removed the cap from the top of the hollow stem of the needle and screwed a syringe on in its place. "Now I'm going to aspirate some of the liquid bone marrow. That's a combination of marrow mixed in with blood. Patients have told me that it feels like I'm trying to pull their whole chest inside out when I do this, but its not that bad. I'm only going to take a little bit of material out. You will feel a strong pulling sensation when I suck the marrow and blood up, but it will last only a few seconds." With that he pulled firmly up on the plunger in the syringe. Gay gave my hand a hard squeeze as 18 the red mixture of marrow and blood flowed into the syringe and then relaxed to a normal grip. "You certainly were right about that," she said. He unscrewed the syringe and began spreading the marrow and blood onto several slides. As he did this he remarked with some pride and in an attempt to break the tension, "I make some of the prettiest slides in the business, real works of art." Gay and I smiled at his humor and watched his showmanship as he carefully prepared each slide. We couldn't tell if the slides were works of art or not, but we were both glad to have this much of the procedure behind us. "I have enough for the tests we need to run," he said. "That's all there is to it." He put a small dressing over the hole. The nurse then departed with the tray she had brought in, the slides, and what was left of the sample of marrow and blood. Dr. River said he would see us in the morning and departed, leaving Gay and me alone in that hospital room with more information about multiple myeloma than we ever dreamt of needing. Shortly after Dr. River left, a nurse brought in Gay's dinner tray. We hadn't thought about dinner up until then, but a look at my watch indicated we should be hungry and Shannon and Cameron probably were, too. I went over to the phone on the bedside table while Gay began to test the food. She indicated I should have some of the food on the tray as I pushed the buttons on the phone. Shannon answered. I confirmed that we were at the hospital and asked her if she and Cameron had read the note we had left that afternoon. She said they both had and wanted to know how Mom was. I told her that we had seen Dr. River and that he had drawn blood and taken some bone marrow to run tests and that she would have x-rays taken the next day. I suggested that they go ahead with their dinner and that I would be home within a couple of hours. I placed the phone back in its cradle and came over to sit on the edge of the hospital bed next to Gay. Between us we finished most of the food. The tray was on one of those hospital tables that rolls up to the bed so the patient can eat from it while sitting up in bed. I pushed the table out of the way so there was nothing between us and returned to my perch on the side of the bed. 19 20 We talked quietly for a little over an hour about what Dr. River had told us. We repeated what we thought we had heard and asked each other questions about those points neither of us understood. One thing was quite clear, however. We were dealing with a very deadly disease; one that historically had been fatal for all of those who had contracted it. Gay lay back on the bed and closed her eyes, lost in her own thoughts. I took that opportunity to complete the notes I had started while Dr. River was going through his explanation and then made a table to summarize the treatment he had prescribed. I thought it would help both of us understand our direction. GAY'S TREATMENT FOR MULTIPLE MYELOMA Objective Medication Approx. Time Comments Stop further Alkeran 1 year Will breakdown body's production of Prednisone immune system. May myeloma cells. cause nausea, hair loss, disorientation and other side effects. Kill all malignant Same Same Same cells and flush from body. Put disease in remission. Rebuild bone to Gay's natural At least 1 year normal level. healing after the disease is in remission. Prevent further Unknown, Unknown. Vital goal. Need further production of perhaps study to find proper malignant cells interferon action. without harming or something the immune else. system. When I finished the table I looked up to see if Gay was interested in looking at it and checking my memory. She was still resting so I wrote down the questions we wanted to ask Dr. River the next day. I then made a list of all the people I should call and tried to put them in an approximate order, with the children and Gay's parents and my aunt and uncle coming first and paying attention to the different time zones since some people on the list were east and others west of us. When Gay opened her eyes again, I checked the list with her. She confirmed that the names I had put on the list were the same people she had in mind. Then she said, "Why don't you add Ivy Baird to the list? You know, she started having back pain about the same time I did. We have traded stories about our back problems several times over the last few months and each time I have wondered at how much her pain sounded like what I have been going through." "My gosh, Gay, do you think she has multiple myeloma? With as rare as this disease is supposed to be, it would be quite a coincidence to have two women from the same church congregation coming down with it at the same time. " "I don't know. I certainly hope not, but the similarities are sure there. She has been to her doctor, but last time I talked to her she didn't have a firm diagnosis. Her doctor has her doing physical therapy." "If she does have what you have, physical therapy could be very dangerous. She might break some bones if they have been weakened by the disease." "That's just what has been going through my head, so I think she should be told." "Say no more, my dear; she's on the list." We agreed I would begin calling that night until it got too late and then finish on Saturday. When that was finished we instinctively knew that we could now take some time for each other. We began to talk about what our lives together had meant to each of us. This seemed to be of the highest importance to us on this particular early evening. It had always been easy for us to talk of our feelings for one another especially about how important each was to the other. That night those feelings 21 were very strong and right on the surface, but we had difficulty expressing them with the depth and intensity we both felt. The English language just didn't have the words to clearly identify how we felt...not about the disease or what we had facing us in the months and, hopefully, years ahead or what we had to do in the next few hours and days...those things we could express easily...but about how strongly and deeply we had always felt about each other. It seemed important at that moment that we be able to communicate those feelings so after a few attempts that seemed far too shallow, we just sat quietly in the sterility of that hospital room, holding each other and weeping quietly together. We both understood. At about eight o'clock I headed for home. 22 CHAPTER II SPREADING THE WORD When I arrived I found Shannon and her boyfriend, Tom Traylor, studying for her A.C.T.'s in the solarium. They told me that Cameron had gone to a friend's house to watch a video. After a few minutes of small talk, I excused myself and went back to the den to begin making phone calls. I decided I would go down the list starting at the top. If a person wasn't home I would go on to the next person and come back to the first later. I thought there might be some politics in who I called first or who I called tonight versus tomorrow, but decided I couldn't worry about that. I made a short outline of Gay's diagnosis and what we had been told about multiple myeloma and its treatment. I included a warning that Gay could not be around anyone who had a cold or any kind of infection. This phone call seemed like the most natural time to put everyone on notice that Gay was entering a period of high vulnerability. I wanted to make sure I covered all the points I meant to with everyone that I called. I knew that with this many calls the chances of forgetting something somewhere along the line were fairly good. The outline would help. The first person I reached was Gay's mother, Madeline Edwards, Mom to us. She is the nicest person I could have for a mother-in-law. She and Gay have always had an especially close and loving relationship. It seemed to me to be a little unique for a mother and daughter to be such friends in the 1980's. I often thought that one of the nicest things I could wish for our daughters is that they could have a relationship like it with Gay. I did sometimes wonder at how they could spend an entire afternoon together and still find worthy things to talk about for an additional hour on the phone that night. But, then, there are a lot of things in this world that I don't completely understand. Gay's father, Willard Isaacson, had died about 10 years before of a heart attack while waiting for a movie to start in a local theater. That had been a blow to the entire family, but especially to Mom and Gay. We were all very concerned about how Mom would get along, but she did quite well. After a short while Jack Edwards began making small talk with her at the church they both attended and then asked her out for dinner. Jack's wife had recently passed away of cancer. Naturally the whole family was a buzz with this new romance. About a year later they were married. We decided they both knew a good deal when they saw one. 23 For the past several years they had taken their trailer to the Phoenix area where they spent a good part of each winter. The winter weather there was more pleasant for Jack and better for Mom's heart condition. I dialed the Phoenix number and waited. Jack answered. "Hi, Jack, this is Demi." Demi is a nickname my mother gave me when I was a baby and it has stuck with the family and a few others ever since. "Is Mom there? I would like to talk to you both at the same time." "Hi, Demi. She's right here. I'll get her." I told them of Gay's diagnosis and explained the disease to the best of my understanding of it. They both listened and then asked questions about how Gay was feeling, about how I was holding up and how the kids were taking it. I responded to each question. Mom then said that Grandfather Isaacson, Gay's fraternal grandfather, had died of multiple myeloma and his death certificate stated as much. This was news to me and I wondered if Gay knew it. I jotted down a note to tell her the next day. Mom then asked if they should return home. Gay and I had expected that question and had discussed that the cold weather could be hard on Mom's heart. We agreed that if I could persuade them to remain in Phoenix for the time being I should do so. I told her just that and added that I thought Gay would worry about her health if she came back and that that should be avoided. I was hoping if she wouldn't do it for herself then she might do it for Gay. She reluctantly agreed, but added that if she were needed she would be home immediately. I knew it was only a matter of time until she would decide she was needed more here than there and come home. I could only hope that by that time the weather would be more hospitable than it is during most winters around here. Then Mom asked if it would be helpful if she called Gay's two brothers and their wives David and Janie, and Tom and Beth along with other members of the family. David was an engineer by education, but had been in the concrete contracting business ever since graduation. He was now in the process of buying his own business in Bloomington, Illinois. Janie was working with him in the business. They had two children, Holly who was a junior in high school and Todd who had just married and was attending Illinois State University in Bloomington while working for his Dad. David was the oldest of the three. He and Gay had always had a close relationship and Janie had been a close friend from the time she and David started dating. 24 Tom was the youngest and also had enjoyed a loving relationship with Gay. He had completed medical School at the University of Illinois and then married Beth. He was now in his second year as a resident in internal medicine at University of Iowa Hospitals and Clinics in Iowa City, Iowa. I saw that Mom's offer to call David and Tom would be very helpful and immediately accepted. I next called my aunt and uncle, George and Caroline French. Also, a pair of very nice and extraordinary people. I had lived with my uncle from the time I was a freshman in college until I joined the Navy. He and Caroline married a year after that. He grew to be more like a father to me than an uncle and Caroline more like a mother than an aunt. Our children have always, quite naturally, regarded them as grandparents. They are Dad and Mom to Gay and Me and Grannie and Grandfather to the kids. Both of them have always been very fond of Gay so I knew this call would be as tough as the last one. They also lived in the Phoenix area and were home when I called. They also listened closely, asked questions about how we were all holding up and wanted to know what they could do to help. I next swung my attention to our children who lived in the eastern time zone in hopes of reaching both of them before it got too much later. I tried Andrew, our number four child, but got his answering machine. I left a message for him to call. I then rang Paige, our third child. She met Kevin while attending Iowa State University and married him right after his graduation. He went to work as a construction engineer for Pepper Southern and started on the project management end of renovating a major shopping center in Orlando, Florida. Paige became pregnant and as her due date approached she decided to come home to have the baby. They thought that Kevin was going to be transferred any day and wanted to make sure they would not have to go to an unknown doctor and strange hospital in a new town for the delivery. Paige phoned Kevin and Gay called me as soon as she had a hint of labor. Kevin immediately got on a north bound plane and I headed for the hospital. My trip was a lot shorter than his. He arrived just in time for the delivery. Paige asked Gay and me to join her and Kevin in the delivery room. It was a unique and wonderful experience for us to see our grandchild coming into this world. They were transferred to Jupiter on the east coast of Florida shortly after that where Kevin began work on the renovation of another shopping center. 25 Paige answered. Kevin had returned to the center to take care of a second shift emergency and Paige had just managed to put baby Bryce down for what she hoped would be the balance of the night. I told her of her mother's diagnosis. She tried to ask a few questions, but gave into the inevitable tears. We cried together for some minutes. It seemed like a particularly good use for Ma Bell's long distance lines at that moment. I told her I would keep her posted on progress and gave her Gay's telephone number as I had done with the others. It made her feel a little better to know that she could talk to her mom. She said she would call as soon as she felt she could keep from breaking up. She didn't think it would help matters if she did that. I told her that her mom would understand and not to worry about it. It was getting late, but I thought I would try Andy one more time. I half way expected to get his answering machine again. Andy had graduated from the University of Iowa in Iowa City the previous June and had immediately become gainfully employed. His mother and I were most pleased about that. He joined W.H. Brady as a sales representative working out of Richmond, Virginia and was enjoying this new challenge of being on his own and making some real money. Andy had always exhibited a unique combination of being extremely sensitive to the feelings of others one minute and having an absent minded disregard for them the next. He was the type that could give you an affectionate bear hug and step on your toe at the same time...but always lovable. Andy was still enjoying the life of a bachelor, but we were not sure how long this might last. I did get the answering machine, but Andy picked up the phone before the end of the recorded message. When I was about half way through my explanation the magnitude of what I was telling him hit home and he broke down. This let me clearly know that he understood. Like Paige, he wanted to talk with his mother as soon as he could. He said he would call early the next morning. I knew he would. I then turned my attention to back to the Quad Cities and tried Matt our second to the oldest child and oldest son. After school Matt had joined People's Drugs and worked his way up to becoming a store manager in the Quad Cities. He met his wife, Debra at a company meeting out of town and found that she also managed a store in Davenport. The short version of the story from that point is that they returned home to the Quad cities, fell in love and were married. Deb had two children by a previous marriage, Miranda and Courtney. We dubbed this Matt's "head start" program. Deb was now pregnant with what was soon to become a real chunk of a baby boy named Channing. Gay loved all of her grandchildren, but when a new one came along, like Channing or Bryce, she particularly enjoyed holding and playing with the baby until about the time when he or she began an 26 unstoppable whale or needed changing. Then she would gladly hand him back to his mother or father, whichever was closest, saying that she had already paid her dues. Matt answered on the first ring. I suggested he ask Deb to join in on a second phone. I went through the same explanation I had in the previous two calls. They were extremely concerned and found it hard to believe that Gay could be that sick. She had always been so healthy. This just didn't seem possible. We were all close to tears by the end of the conversation. They both had to work the next day, but said they would be over to see Mom as soon as they could after that. I had not called any of our friends since I felt it was important to reach the family first, but I felt I had time for one more call. I tried Laura and Phil Rovang. Laura was not only a very close friend of Gay's, but also was very well acquainted with her back pain from the early morning mall walks they were in the habit of taking. Laura answered and immediately intuited that the news would be about Gay and that it would not be good. She listened to my explanation without interruption, then asked a few questions on points she didn't understand. She suggested that she might be able to help by making some of the phone calls for me. Together we listed a good many friends who would want to be informed. The list included Phil and Ivy Beard, who Gay particularly wanted called because of Ivy's heretofore unexplained back pain. Laura said she would begin calling the next morning. I felt relieved at that. Each call during this evening had taken about thirty minutes and I knew I would not be able to reach all of the people I should and still have any time left the next two days for Gay and the younger two children. I knew Laura would do exactly as she said. When I hung up the phone it was nearly midnight and I felt it was too late to make any further calls. Besides I was running out of energy. I found both the kids in the playroom watching television. Shannon had finished studying for her A.C.T.'s and Tom had just left. Cameron was back from his friend's house and the three of us talked for about fifteen minutes. Shannon said she was planning to come home for lunch right after the test and Cameron and I would be returning from Dr. Bovenmeyer's at about that same time so I didn't have to worry about getting the two of them together to tell them about their mom's condition. I suggested we all have lunch together. They thought that was a good idea and we headed for bed. As I got ready for bed my mind darted back and forth to various parts of the last sixteen hours. The day had been filled with an amazing mixture of events that stretched both the mental and emotional fabric. There had been periods of the 27 mental gymnastics that go with intense learning, rapid analysis of detail, formulation of questions and interpretation and assimilation of the answers all interspersed with the deep-seated emotional response that goes with understanding and accepting the reality of what you have just learned. Mixed in with that were moments of incredible tenderness that can only be experienced by two people deeply in love when their world together is suddenly threatened. I couldn't help but wonder at the versatility and capacity of the human being. It seemed strange to climb into bed without Gay. I told myself that it was because it took the two of us to balance and level our waterbed. I chuckled to myself as this thought passed through my mind. I knew that wasn't why I missed her. Despite mental and physical exhaustion, my mind kept running over all that had happened during the day. I then began to think of the children. The older four were already out of the nest and would need very little from me. But, Shannon and Cameron still needed the support and guidance of both a father and a mother. Would I have to play both roles? If so, how would I do that? I calculated how many years the two youngest had already had under their mother's guidance. I then estimated how long they would remain at home both counting on support from me and giving that support back to me. My mind then went out to the grandchildren we had and the ones yet to come. They might come to know of their grandmother only through the words of others and might never have the opportunity to learn from her. They could be deprived of a marvelous role model and friend. That would truly be a loss. My mind then turned to our home. It had always been a happy and secure place. A few years ago close friends of ours, Judy and Loren Benson, had given us a sign to name the house. The sign said "SANCTUARY" and that's the way I had come to feel about it. Would the house become an unfriendly environment if I should lose Gay? I had heard of surviving spouses moving out of their homes because they found it too difficult to cope with all of the memories they found in each room. Would that happen? Probably not, I thought. After awhile my mind began to let go of this mental review, only to have it gradually replaced by a deep seated sense of loneliness as my emotional being began to take over and simulate what life would be like without Gay. I didn't try to fight or discard these feelings even though they were very disquieting. They seemed quite real and did an excellent job of showing me how much she meant to me. I had only occasionally contemplated what it would be like and how I would cope if Gay were to die before me. After all, she was seven years younger than I, 28 and a man's life expectancy is three to four years less than a woman's. I had always assumed that I would go first. Our wills, life insurance and other planning had all been structured on that most logical assumption. Now, for the first time I was faced with the real possibility that the natural order of things could be reversed. Coping with loneliness was not my strong suit. I knew I could do it since I had survived lonely periods in high school, college, in the Navy and more recently on long overseas business trips without Gay. But, those periods told me that I didn't like it one bit. Also, I was much more vulnerable now than I had ever been in my life. Until I had met Gay, I had always guarded my emotions very carefully. I had never allowed anyone to come inside my being where they could hurt me if they left. That seemed to me to be a very dangerous thing to do unless it was with someone you not only loved very much, but thoroughly trusted. It had happened with Gay. I had long since completely lowered my emotional defenses with her. It had not been a conscious decision, but had happened over time in a very natural sort of way and, I should add, to my great delight. She was now an integral part of my emotional fabric. We had grown to a closeness that I could never adequately articulate. I wasn't sure how I would cope with losing Gay. I would, I told myself, but it would be the most difficult emotional challenge I had ever faced. These thoughts finally let go and I drifted in and out of sleep for the remaining hours of the night. 29 CHAPTER III THE SECOND DAY FURTHERING OUR UNDERSTANDING In the early morning, just before light, I began to waken slowly, my mind rehearsing a mini speech filled with all the things I wanted to say to Gay. The phrases and sentences of the speech were being formed somewhere between my conscious and subconscious. I completely woke up with the sun and was happy to have the night behind me and happy words running in my mind. I got up, dressed and went to the kitchen for a bowl of cereal and a half cup of yogurt. I brought a piece of paper and pen to the table with me so I could make notes of the phrases that had come to me in my half sleep. I intended to only make an outline so I would not forget the more important things I wanted to tell her. Often, however, when I start an outline, it turns into a series of full sentences and paragraphs almost immediately. That's exactly what happened on this early morning. After I had written a couple of paragraphs I decided to turn it into a letter. I had to stop writing several times because the feelings I was trying to express on the paper choked me up, not with sadness, but with love. I was composed and the letter was finished by the time Shannon came out for breakfast. As usual she had time for only a couple of pieces of toast and a glass of orange juice. I gave her a hug before she breezed out the door and wished her good luck on the test. Then she was off, promising to return home when she finished. Cameron was still in bed when I was ready to return to the hospital, but he knew that that was where he could find me if he needed me. He also knew I would be back around 9:45 to take him to Dr. Bovenmeyer's office. We would both be back home by 11:00 when we expected Shannon to return from her test. When I reached the hospital Gay was up and glad to see me. I went over to the bed and gave her a good morning kiss. As I took a step back, I noticed a small blue hose running from the table to the bed and under the covers. It was attached to a creamed colored plastic box perched on the table. "What in the world is that," I asked. Gay's face broke into a smile and she shifted to sit up straight in the bed and tossed back the covers as she said, "Oh, that's my new heating pad. The nurse brought it in last night after you left. That's a pump on the table. The nurse poured water in the top of it. The water is then heated to whatever temperature you set, and pumped 30 31 through the hose and into this pad." She pointed to a fairly large light blue pad that was under her on the bed. "The pad is big enough to give heat to my whole back at once. It does relieve my back and helped me sleep last night. The really nice thing about it is that we could use one of these on our water bed at home since there isn't any electricity running through the pad itself. It would be much safer than an electric pad. I have used the electric pad we have at home only in the chair for that reason." "Well, while we're here let's ask where we can buy one," I said. "That's a good idea, but the nurse told me they are pretty expensive so we may want to see about leasing. After all, if this medication works I may not have need for its services for very long." I then reported on how the kids were and gave her a quick synopsis on the phone calls I had made the night before. When I finished I said, "Early this morning I thought of some things I want to tell you. They are about you and me, but mostly about you. I started to write them down in note form when I got up so I could make a little speech to you this morning, but the notes turned into a letter. I think a letter is better anyway. I would like to read it to you first and then I'll give it to you to read for yourself. Is that okay? She sat straight up in bed with a big smile on her face and a brand new sparkle in her eyes and said, "Read on, I'm all ears. I think I'm going to like this." It was fun for me to see. I sat close to her on the bed and took her right hand in my left and started to read. 12 February 1989 Gay, What you mean to me: You are the source of much of my inner strength. When I forget, you remember. You turn our house into our home. Without you it would just be a lonely dwelling place. A major source of my ambition, my drive and my motivation comes from my wanting you to be proud of me. You give meaning to the things I choose to do and even to the thoughts I choose to think. The words blurred on the page as the tears filled my eyes. As I waited for the water to clear I said, "This may take awhile for me to get through, but I'll make it." The tears had come not because I was sad, but because I realized how truly fortunate I was to have someone to write these words to. I continued. You are the source of my sensitivity toward others. I have developed much of what I have through watching and listening to you and, more importantly, from feeling you with me. You taught me to love...the importance of giving myself to others, but especially to you. I could not do that well before you entered my life. This is probably the greatest gift you have given me. It comes so completely naturally to you. I have marveled at how honestly and completely you feel for your world and how easily you communicate those feeling to others. I had to stop again as I thought of how exceptional was Gay's personality that she could give so freely to others. Few had that ability and fewer still practiced it. This time Gay's eyes also filled and we hugged each other and laughed at how silly we must look...reading a letter, laughing and crying all at the same time. That made us laugh harder. I was finally able to return to my reading. I have tried many times over the years to imagine life without you and find it a scary, lonely prospect. It is possible and doable, yes, but you are an irreplaceable quality in my life. You are my window to the past, hope for the wonders of the future. We have so many loving, funny, sad ironic, etc. memories we share together. Your presence recalls for me how wonderful life has been for the last twenty some years with you. What I don't remember on my own you help me to recall. With you those memories are meaningful and fulfilling. There may come a time when you will have to make choices that in there effect will be choices between the length and the quality of your life. I will help you make them in so far as you would like me to and 32 in so far as I am able. The choices you ultimately make may not be the ones I would like for my own selfish reasons. Nevertheless, I will do my very best to understand them, accept them and to support you in them. You are the most important thing that has ever happened to me and I love you as no other. Love, Demi In summary, My Love, we are a fantastically successful team. Love, Demi I had to slow down on the last couple of paragraphs, but managed to finish without having to stop again. My eyes were filled with tears as I looked up at Gay to catch her expression. She was also manufacturing a lot of eye water and we began to laugh again. She finally said, "That's the most beautiful love letter I have ever heard. I'm so happy you meant it for me. I know it was not easy to write, especially the last part. I will cherish it always and it will give me strength to meet the future. Thank you for your love and understanding. It has always been terribly important to me, but no more so than at this moment." We sat facing each other in the quiet for a long time before our solitude was abruptly interrupted by a nurse entering the room with a stethoscope and thermometer in her hand. "It's time to take Gay's vitals," she said in a cheery voice. About thirty minutes later Dr. River came through the door. After the normal exchange of greetings Dr River began, "I had a chance to take a second look at your x-rays this morning. It looks like you have had a fair amount of bone loss. As I told you yesterday, you have holes in your skull, arms and pelvis. Also, there is a very faint line on the film that looks like it may be a crack in the front of your pelvis. I can't be sure. I contacted Dr. Richard Kreiter and asked him to look at the x-rays and then talk to you about them. I have worked with Dr. Kreiter many times before. He is a very good orthopedic surgeon. Before he reviews your case we will want to get some additional film on your lower back to see if there is any damage 33 there. We will get those x-rays taken today and he should see you before the end of the week end. I want him to give you a more accurate opinion of the condition of your bones and to explain any restrictions you may have to follow to protect them from breaking. We don't want you to break a bone, but not just because it would cause you pain, but because, with the condition of your bones, a break might not heal properly and the process would take a long time." "I went to school with a Dick Kreiter. I haven't seen him in years and have completely lost tract of what he is doing. Do you suppose it could be the same person?" I asked. "When I mentioned your name, he made the same comment. I suspect he is the same guy." "What kind of restriction are we talking about?" Gay asked. "Well, you certainly should not be putting any weight on any of your limbs. You should not carry things or put a strain on any of your bones. Even a small amount of weight can place a lot of strain on the arm or leg bones, especially if it is held away from the body. The length of the arms and legs can create a lot of leverage. That leverage combined with even a moderately heavy object can break a weakened bone. Also, you should not take long walks until we know more about your condition." "What kind of measure will we consider if Gay's bones are severely weakened?", I asked. "Dr. Kreiter will review that with you in detail if he feels something needs to be done. If there is a break in one of your bones or if there is danger of having a break, he may recommend placing a pin in the bone to hold the two pieces together. We will know more after he has viewed the x-rays." Gay then told Dr. River that she had had a hot flash during the night and had had one in January. Dr. River said that she might experience more of them in the future and that they could be menopausal in nature or could be caused by the disease. He concluded by saying, "Please let me know the next time you have one. I may want you to see a gynecologist. Who is your gynecologist?" Gay replied, "Johanna Whalen." 34 "Okay. Our first order of business is to get you started on the chemotherapy, then check on the bones. You may wish to see Dr. Whalen after that." That led nicely into another question Gay and I had. "Could you tell us more about the chemo that Gay will be on? What kind of schedule will she be on and what are the dosages?" "Sure, this would be a good time to do that. Both the Alkeran and Prednisone are in pill form. We will start you out, Mrs. Hoyt, on three pills of Prednisone and five of Alkeran every morning for six days. The Alkeran pills are two milligrams each for a total of ten milligrams a day. The Prednisone pills are twenty milligrams each for a total of sixty milligrams. We will start that regimen today. After the sixth day we will stop for a period of four to six weeks mainly to give the white cells a chance to recover and then start the pills for another six days. I think I mentioned yesterday that we will monitor your progress with weekly blood tests and may adjust the schedule depending on the results. You may experience some nausea from the medication so I think it would be wise for you to take some Compazine. I think we'll start on ten milligrams twice a day and see if that keeps your tummy happy. That's what I've ordered starting this morning." "How do we get the blood tests done and what will they show us?" I asked. "We'll do a blood test every week. If Monday morning is convenient for you, Mrs. Hoyt, we can do it then. Just come to my office any time on Monday mornings and Jackie will get a little blood from one of your fingers, with just a little prick of the finger. We have a machine in the office that will analyze the blood sample right away and give the results while you wait. The test is simply called Complete Blood Count, or CBC for short. The report gives us a read out on the levels of a number of different elements that are present in the blood, but we're primarily interested in the white blood cells, the hemoglobin in the red blood cells, and the platelets. The chemotherapy will mash these counts down and we will be looking to your bone marrow to rally and produce more of each to protect the body." "I remember some of this from high school biology, but it would help if you could give us a refresher on the importance of each of these cells." "The white cells are the soldiers that fight off the diseases and infections that invade the body. Some white cells do the fighting directly and others produce antibodies that attack the invading cells. When the white count gets too low, viruses and bacteria that the body normally holds in check, can easily get out of control and 35 damage one or more of its organs. That can cause death. We'll be watching your white count very closely. The normal range for the white cells is from roughly 5,000 to 10,000 cells per microliter. If the count goes below 3,000, we will delay giving you further chemo until it goes above that level. That's why I said we would take a four to six week rest between the six day doses of the Alkeran and Prednisone. If the white count is high we will start the chemo again after four weeks and if it's low we will wait until it comes up. That may take another one or two weeks. The best way for you to get white cells is by producing them in your own bone marrow. So, if the count is low we will just have to wait. We haven't found a good way to give you white cells by transfusion. "Next is hemoglobin. Most people use the terms red blood cells and hemoglobin pretty much interchangeably. Actually hemoglobin is the coloring matter, or pigment, found in the red cells. It carries oxygen to the cells of the body and carbon dioxide from them. It is obviously important, but less of a concern to us now than the white cells. It is not depleted as fast by the chemotherapy and when cells do get low we can give you some by transfusion. The normal range for hemoglobin is from 12.5 to 14.5 grams per deciliter. If the count falls below about 8.0 we will consider transfusion. "The platelets clot the blood when you get a cut and keep you from bleeding to death. If you didn't have these little guys, blood would seep through the tissues of the veins and you would bleed to death. One sign that your platelets are getting low is if you start to bruise more easily than normal or if bruises stay around longer than usual. The normal platelet range is from 150,000 to 450,000 per microliter. We will also be watching these closely and, if they get too low, we will give you more by transfusion." "How will we know if we are making progress against the disease? How will we measure it?" I asked. "Another good question. We will do a series of tests that range from ones that will give us a general and fairly rough approximation of the tumor load, or the magnitude of the disease, to more sophisticated and specific tests that will give us more precise measurements. We have already done these tests both to measure the severity of the disease as it stands today and to give us a baseline against which to compare the readings we will get on later tests. "The first test is called a SMAC blood test. It shows the level of a number of elements in the blood, but we will be particularly watching the Total Protein and the 36 Globulin. The normal range for Total Protein is between 6.0 and 8.5 grams per deciliter. Your reading from a test done on 28 January was 12.5 and, on the test we just completed, it was 12.8. Globulin is another name for antibody and is a type of protein. We look at its count separately, but it's also a part of the Total Protein count. While we're at it, I might as well give you a few more numbers. The normal range for the globulin is between 2.0 and 3.5 grams per deciliter. Your test on the 28th showed 9.0 and on the one just done it was 9.9. These readings are very high and indicate that the malignant B cells we talked about yesterday are and producing antibodies at a great clip. Those antibodies are spilling into the blood stream and showing up in our tests as a high level of Total Protein and Globulin. This gives us a rough estimate of the tumor load that is present throughout the body, but especially in the bone marrow. We'll do this test about once a month to see how effectively the Alkeran and Prednisone are combating the disease and reducing the tumor. Our aim will be to get these readings into their normal ranges. "Assuming we are successful in doing that we will repeat a second more specific test called a serum protein electrophoresis. This is a more sensitive test that detects the various types of protein present in the blood and determines the approximate amount of each. In your case, we are especially interested in the levels of the three proteins called immunoglobulins we discussed yesterday. These are IgA, IgM and IgG. It doesn't give us specific numbers to define the quantities, but gives us a graph showing the relative amount of each globulin that's present. If there is an abnormal amount of one of the proteins it will show up as a spike on the graph. Here, let me show you what Mrs. Hoyt's test looks like. That will give you a better idea of what I'm talking about, if I can find it in all these other papers in your file." "You seem to have a substantial file on me already and I just got here yesterday," Gay said. "I do indeed. That's because I have all of the information from Dr. Finan, Dr. Miller and tests I had run yesterday. This file is the road map we use to determine what's gone wrong in your body and what action we need to take. Ah, here it is." He handed me a white piece of paper with a gray graph on it that had obviously been printed by a computer. I held it so that Gay and I could see it at the same time. The gray shaded portion of the graph stretched for about three inches along the bottom of the page with only minor up and down variations and then rose sharply, well above the rest of the graph, then settled back down to the lower level of the graph again. 37 "Do you see the spike in the graph?" asked Dr. River. "That represents the abnormally high amount of IgG protein you have in your blood. That's the same protein that is being produced by the monoclonal B cells we talked about earlier that have run amuck. "There is a companion test we do from a sample of urine taken over a 24 hour period. Dr. Finan had you start to collect urine for this test yesterday morning before you came to the hospital. That reminds me, did you finish the collection of that this morning?" "Yes, the nurse picked up the sample and said it would be delivered to the lab. I never realized so much liquid went through my body in one day's time. I know I drink a lot of water, but even so, I was amazed." "I'm glad to hear that. It means your system is being well flushed out. Well, back to the tests. That test is called a urine protein electrophoresis. It also measures spiking of protein, but in the urine rather than in the blood. These tests are quicker and cheaper to run than the next ones I'm going to tell you about. We use them as screenings test to give us a fast visualization of any abnormally high levels of the various protein. If there is a spike, as in your case, we go to the next level of testing. There is another indicator for multiple myeloma we look for in the urine tests. That's a protein called Bence Jones protein. I expect we will find it in your urine tests, Mrs. Hoyt. The next two tests are done on the blood and are run in conjunction with one another. These tests are aimed at the immunoglobulins. The first one is an immunoelectrophoresis test. This one identifies which of the three immunoglobulins is elevated and which are not. The second one is an immunoglobulin study that tells us in numerical terms the amount of each immunoglobulin that is present. Dr. Finan had these tests performed last Tuesday. I have a copy of the results somewhere in this file. Here it is. As you can see, it shows the levels of each protein. The normal ranges are printed on the report for reference. The IgA and IgM are below the normal range. As I told you yesterday, the IgG is substantially above normal." I took the report as he handed it to me and again held it so Gay and I could view it together. He stopped talking to give us a chance to read it and gain a better understanding of what he was telling us. When I thought I understood it, I said, 38 "This indicates that the normal range for IgG is from 564 to 1765 milligrams per deciliter and Gay's reading is way above that at 6434." "That's right. That reading is all part of the diagnosis of multiple myeloma and we will use it as a basis for comparison later to help confirm that we have or have not been successful in getting the disease into remission. If all of these tests produce normal results, it will be time to do a bone marrow biopsy, where we take a core sample of the bone marrow. If we are unable to find any malignant cells in the core sample, we will say the disease is in remission. That is several months down the road, however. Our main test for now will be the SMAC 24 to determine the Total Protein and Globulin levels." In a lower tone, he then added what he had told us the day before, "What is so insidious about multiple myeloma is that it never stays in remission. We doctors and scientists have not found a way to rid the body of this disease once it takes hold." "You said yesterday this could take a year to go into remission if its going to cooperate?" asked Gay. "Yes, but everyone reacts differently. I would say you shouldn't look for quick results. I would count on a year. In fact, I like to see the disease take a slow steady course into remission rather than a fast one. Cancers that respond very rapidly to chemotherapy often come back very quickly as well. "At some point you may begin to wonder how much pain there will be if we are not able to get this under control. Well, I told you before that I don't like to mislead my patients. Dying of cancer is not pleasant and this one can be particularly painful. You will hear that somewhere if not from me and I want you to know that I will be able to keep you reasonably comfortable if and when we arrive at that point. "One other thing. This is not necessarily in line with medicine, but it is realistic and you may find it useful. While you are still feeling fairly strong, Mrs. Hoyt, you may wish to consider making a will if you don't already have one. Perhaps as important, you should consider what decision you want your husband to make for you if there should come a time when there is little or no hope of further life for you except through life support systems and you are not able to make the decision for yourself. When you know what you would want him to do in such a situation, don't keep it a secret. Make sure he knows, the children know, and your family on both sides. If you don't, the chances are very good that someone in the family will blame 39 him for making what they consider to be the wrong decision, even if it is exactly what you told him to do. That kind of second guessing can go on for years and is most unfortunate in a family. I would suggest that when you are emotionally able to discuss this and reach a conclusion, you may wish to put it in the form of a living will. If you do that, make sure I get a copy and anyone else you think might need one." He paused for a moment and then said," If you don't have any more questions, I'll be off." I looked at Gay and she nodded to me to indicate that she had nothing more. "I guess that's all we have for now," I said. "Once again you have given us a lot to think about. We appreciate your patience on an early Saturday morning." "That's okay. You're trying to absorb an awful lot in a short period. Most of my patients don't attempt to understand their disease to the degree you two are. I think you are smart to approach it the way you are. I'm glad to be of help. Well, I'll see you again tomorrow morning." With that he turned and strode out the door, leaving us alone again. I got up from my chair and went to the window for no very good reason except I'd been sitting too long and wanted to stretch. Gay broke the silence first. "I have been thinking about making a living will for some time , but have never gotten around to it. It's time to quit procrastinating and do it. I certainly do not want you to keep me alive on a machine if there is no realistic chance that I will live. I know I have told you this before, but Dr. River is right; it should be in writing." I turned from the window, "I agree with you," I said. "I don't know just what such a document should say, but I think we need to be sure it says what you want it to with as much precision as we can. I probably ought to make a living will for myself while we're at it." "I'm content to leave the words to you. I don't know how precise I can be. I just know that I don't want to be in a coma and kept alive with tubes sticking out all over me and a bunch of machines pumping my fluids around if there is no chance for me to live without that support. Maybe you can figure out a way to put that into words that will make sense to us and hold up wherever it has to." 40 "Okay, I'll give it a try. Obviously we aren't the first to want to do this so I'm sure there is a model somewhere we can follow. I'll call Don Sitz and ask his advice." Don had been our attorney for years and a friend. Gay shifted her position in the bed and gave me a big smile as if she had just thought of something important she wanted to do and said, "You know, for some years I've been meaning to talk to each one of the kids about which pieces of my jewelry each would like after I'm gone. You have given me some beautiful rings and earrings and I have some lovely pieces from my mother and grandmother. I don't mean just the girls. The boys have all admired different things at one time or another and I think they should have something they particularly like for their wives if they want. Well, it's time to do something about that now." "You may have some tough decisions," I said, "if two of them want the same thing or if one or two shy away from the question and don't give you an answer. Whatever you decide, please write it down and let me know where the list is. Now that you mention it, we have thought the same thing about some of the other things in the house, like the pictures. I suppose we could cover all the ground at the same time." We fell silent for a few minutes and then I switched to a concern that had been turning in my head since the day before. "As Dr. River expressed, you and I have had to absorb quite a bit in the last twenty-four hours. I'm sure we haven't understood it all, but one thing seems clear. Dr. River has left us with a clear message that the most we can expect is to buy some time to extend your life for as many months as possible, mainly through the use of chemotherapy. I don't know how you feel...well, actually I think I do...but I'm not ready to accept that as the final word. You've started the Alkeran and Prednisone this morning and I think that's the right thing to do. There is little doubt in my mind, however, that we should seek a second opinion from the best source we can find. Probably should do that within the next two to three weeks. What do you think, Love?" "I agree. I wonder if the doctor in Iowa City that Dr. River consulted yesterday wouldn't be a good place to start. We probably ought to search out some other good places too." "Let's ask Dr. River to be more specific in his suggestions and I can do some investigation on my own." "What time is it?", asked Gay. 41 "About 9:30." "You'd better leave pretty soon to take Cameron for his appointment at Dr. Bovenmeyer's. Are you ready to talk to the kids after that?" "Yes, I know what I'm going to say. I'm going to approach it just as we discussed. Shannon is coming home right after her test. By that time I should have Cameron back home too. I'm sure they will both want to come up to see you right after I tell them what's going on. Will you be all right if I go now?" "Oh, sure; go on. By the way, I agree with what you said a while ago. In the words of somebody I can't remember now, 'we've just begun to fight.'" She gave me another big smile. I walked to the head of the bed and gave Gay a long hug and a kiss. "I sure do love you, Gay." I picked up the letter I had written to her from the table and handed it to her. "This only begins to express how much." She gave my hand a squeeze and then let me go. As I headed for the door she said, "I'm going to read it now for myself and see if it sounds as good the second time." I headed the car north up Division Street toward home and got there just in time to pick up Cameron and drive him to Dr. Bovenmeyer's office. His appointment went well and he came out with a new prescription for his acne and high hopes that it would work the wonders that the last one had not. He asked me how Mom was. I told him that she was in good spirits this morning and that we could go see her after Shannon came home if he would like. He said he wanted to do that and hoped that Shannon would be there when we arrived so we wouldn't have to wait. We pulled into our garage about 11:20. We didn't have to wait long before Shannon came through the door from the garage into the kitchen with her friend Cheryl following close behind. I wasn't expecting Shannon to bring anyone home with her, but then, she had no way of knowing that I needed to talk to her and Cameron in private. I turned to Shannon and said,"Hi, Dear. Hello, Cheryl. Shannon, would you please take Cheryl home and then come back. We have some family business we need to discuss. I'm sorry to be so inhospitable, Cheryl. Shannon can call you later." 42 Shannon started to protest, but when she looked up at the serious expression on my face, she simply turned to Cheryl and said, "I'll take you home and call you later." They both departed. I turned to Cameron and told him that I wanted to explain to them what I had learned about their mother's condition, but wanted to wait until Shannon returned. He understood and went to the refrigerator in search of some lunch. Shannon returned in about ten minutes. She looked very serious and was anxious about what I might have to tell them. I suggested we sit in the solarium. I told them that their mother had a very serious form of cancer called multiple myeloma. I explained what I had learned about the disease and what we were told would be their mom's chances for putting it into remission. I also told them that there was no known cure and that historically this disease had been fatal for those who contracted it. We wept softly together at several points in my explanation. Our two young adults understood the seriousness of what I was telling them and reluctantly began the process of accepting its reality. Toward the end of the conversation Shannon commented through her tears, "This is all so complicated, Dad. I don't know how you can keep it all straight and explain it to us so we can understand it." I'm not sure where I got the analogy, but it struck me as being appropriate. I said, "It's a little like sorting the laundry. When you do the laundry you start out with a bunch of dirty clothes on the floor in a jumble. You first sort them into a pile of whites and another of colored. You wash them so that they are clean and then dry them, but they are still in a twisted mess. You then separate them, fold them, put them in piles and put them away in their own compartments. When I run into something complicated like this where I get a bunch of facts that don't seem to clearly connect with one another, I do the laundry. My mind consciously and subconsciously sorts through the information and discards what doesn't seem to fit...sort of cleans up the facts. It then sorts and folds what's left until the facts are in some sort of order and make sense to me. I can then put the issue away and, if my memory serves me well, the facts will still be in order when I need them later. Well, I have been sorting a lot of laundry in the past twenty-four hours and that's why I can make some sense of it for you. The same analogy can be used for the process of sorting out emotions at a time like this. I know that you both will be sorting your own laundry over the next day or two. In fact, you've already started." 43 We ended with a group hug and broke with a laugh as we looked at each other's dreary, teary faces. Our youngest two children had done a lot of growing up in the past hour and I knew they would do a lot more in the months to come. They needed me right then and I was prepared to give them whatever support was called for. I also realized that I needed them and could count on them both to be a solid part of the support system for both Gay and me. We would move forward as a family, leaning on one another as need be. Cameron fixed a sandwich for each of us and Shannon gathered some things together she thought her mom might need. I took that opportunity to call Erin, our oldest daughter. Erin had fallen in love with Wayne Kelly, Jr. and married at a young age. A couple of years later she presented us with our first grandchild, Wayne III and two more after that, Jacob and Cambri. Over time she became very active in her church and now divided her time between the church and her family. She also had a late evening job so I knew I would not be able to catch her when I made the other calls the night before. She answered the phone and, after the normal greeting, I gave her my best understanding of Gay's diagnosis and of the prognosis as I had done with the others. She asked a few questions for clarification and said, "Can I see her?" "You sure can." "Wayne and I will be there as soon as I can get a baby sitter. They are not easy to come by on short notice, but we will be there. Until then, tell Mom I love her. I don't want anything to happen to her. I love you too, Dad. Thanks for calling." By the time I was finished talking to Erin, Shannon and Cameron had eaten their sandwiches and were ready to go. I didn't want to take the time to eat mine and wasn't very hungry anyway. My sandwich did not go to waste, however. Food rarely does in our house with two teenagers. We headed out the door and to the hospital. When we arrived, Shannon bounded through the door with a smile and gave her mom a big hug. Cameron politely hung back with me, waiting his turn. It came soon enough and he did the same. Gay's beaming face filled the room. She had heard from her mother and Jack, David and Janie, Tom and Beth, George and Caroline, Erin, Matt and some of her friends. She had been a very busy lady during the four hours I was gone and she was showing the signs of all the encouragement 44 they had given her. Her two brothers told her they had cleared the day to drive their families to the Quad Cities to see her. And now she had her two youngest children and her husband surrounding her. Things had clearly brightened up. We had been in the room only a short time when David and Janie arrived. Right behind them through the door came their daughter, Holly, who was about a year younger than Shannon, and their son Todd with his wife Cathy. Cathy was pregnant with what later turned out to be a baby girl they named Kelsey. After giving everyone a short update on what we had learned from Dr. River that morning, we fell into much more pleasant and upbeat conversation. The next three hours flew by quickly and by about five o'clock Shannon, Cameron and I were getting pretty hungry. We opted to go home for a quick bite since Molly, our Boston Terrier would certainly be wanting out and probably also getting hungry. On the way Shannon confided in us that she was feeling very selfish. "I want us to have Mom all to ourselves. It's hard sharing her right now, even with the rest of the family." She then gave us a broad smile and conceded, "It is neat to see Mom so radiant with all of her loved ones around her. I know it's good for her, but it's hard on me." Cameron chimed in his agreement with her point of view and I could certainly understand their feelings. I simply said, "Others will come and go. They all have their own lives and some live too far for frequent visits. Let's enjoy them while we can. We will be with Mom from the beginning through the end of this ordeal. There will be plenty of time for us to have her to ourselves." Shortly after we got home, Tom Traylor arrived to see Shannon. She had called him earlier and now sat with him in the playroom to explain what had gone on during the day. He could empathize with Shannon since his grandmother had died of cancer a couple of years earlier. They talked for awhile and then joined Cam and me for a make-shift dinner. After eating, we returned to the seventh floor and room 7036. We found that the group had grown with the addition of Tom and Beth who had driven in from Iowa City. After some small talk, Tom motioned me aside to say, "Mom called us last night with the news. I assumed you would want a second opinion and I wanted to come up to speed on multiple myeloma myself so I went looking for help. I was able to catch Dr. Roger Gingrich at the hospital this morning. I have met Roger several times over the past two years of my residency and have a very high opinion of his work. Roger specializes in bone marrow so I thought he would be a good one to talk to about Gay's problem and would be able to refer me to who ever would be the best person at the University of Iowa Hospitals for you to talk to. He said he 45 would be happy to talk to you, but felt you would be best off contacting Dr. Patrick Burns initially. Dr. Burns is the head of the Hematology Department at the Hospital. I think their work is top quality." "Gay and I have discussed second opinions and definitely want to get at least one. Dr. Burns may be just the place to start. Do you think he would need to take a whole new set of tests or will what we have be good enough?" I asked. "He may want some additional test, but I would take all of Gay's x-rays, slides and test results with you to avoid as much retesting as possible. If you decide on Burns, I would get him in on the case early. There is probably little doubt that Gay has multiple myeloma and the treatment Dr. River is starting her on sounds pretty standard from what Roger told me. There may be some decisions down the road, however, where you will want other expert advice and it will be helpful to have that expert well familiar with Gay's situation when that happens." Tom and I spent the next thirty minutes or so comparing notes on what we had each learned about the disease and its treatment. He was able to fill in some of the missing pieces for me. I was grateful for that and felt Tom would be an excellent resource as we moved into the future. I thought to myself as we parted, "How fortunate that Tom is a doctor in residency in Iowa City. That could turn out to be a great help." I noticed that Shannon took up a position next to her mom on the bed right after we returned from dinner. She was still there now. No one else was really in the room as far as she was concerned. She was focused on her mom and her mom's needs. She was there exclusively for her. Cameron was circulating with "our guests" and trying to make people feel comfortable, especially the younger ones. I was mighty proud of them both. About this time Erin and Wayne joined the group followed by Matt and Debbie. That little room had gotten crowded and the sounds from 7036 were growing louder and louder. I was getting nervous that we might disturb others on the floor and attempted to quiet people down a few times. That helped some and since the nurses didn't come in to scold us, I decided we were not getting too far out of hand. Gay certainly was having a good time. She sparkled and beamed in the light of her family. And, as Shannon had said earlier, that certainly was wonderful to see. In the middle of all of this, Andy called from Richmond. Both Gay and I talked to him. He had been trying to get through on the phone all day, but found the line 46 busy each time. He wanted to know everything we had learned from the doctor that morning. Andy is the type of person who likes to know all the facts. Several times, through tears he expressed how hard it was for him to be so many miles away and unable to help in what he felt was a meaningful way. He couldn't accept that his heartfelt caring and love was enough for us. At about 9:00 everyone reluctantly departed. Gay's brothers and families had a long drive home and it was well past visiting hours. Shannon, Cameron and I stayed for another hour with Gay. We talked quietly of how nice the last several hours had been and then Gay gave us all orders about things that needed tending to at home. Her main concerns were that we feed Molly and that the kids not neglect their homework. With these words of practicality ringing in our ears, we each gave Gay a hug and headed for home. The first thing we did after we pulled into our garage and walked into the house was to see to Molly's needs. I let her out while Shannon filled her dish with her normal, but uninteresting, dry dog food and Cameron filled her water bowl. She did her duty and immediately returned to the door. I opened it, expecting she would head for her dinner, but she wasn't interested in the food. She sensed something was wrong since Gay had not been home the night before and didn't seem to be with us now. She quickly made the circuit of each room in the house looking for her. When she was sure Gay was nowhere in the house, she returned to the kitchen and looked up at each of us in turn with her oversized black terrier eyes as if to say, "Where's Mom? Why isn't she here?" I wished I could communicate what was happening, but I couldn't. So, I sat down on the kitchen floor followed by the two kids. We played with her for several minutes before she decided that the three of us were the extent of the family for that night and slowly retreated into the laundry room to see about her food. We could hear her crunching the dry dog food, which she had never particularly cared for and lapping at her water. At that point we were all weary from the long day, but none of us felt like going to bed. There was too much nervous tension in our bodies and our own private thoughts were spinning in our minds. We all remembered Gay's parting words and, without saying very much about it, we began picking up the house. That was at least a practical way to use the nervous energy even if the clean up effort was not particularly well organized. I made several trips from Shannon's bedroom to Cameron's and back again. These visits would have ordinarily been unnecessary. I did want to make sure they knew 47 my plans for going to the hospital the next morning and coordinate the timing with them. But, the underlying reason was to see how they were handling things, to give them a chance to ask me questions and express their feelings if they wished and, at least as importantly, because I wanted their company. We finally called it quits at about midnight and went to bed. The bed was just as lonely as it had been the night before. My mind roamed over the day's events. I thought about how well Gay and all of our children were reacting. I concluded they were all doing rather well under the circumstances. I thought about everyone who had come to see Gay that day. What a wonderful show of support. I wondered how Gay's mother was doing. I knew she felt very uncomfortable being so far away and mused at how long she would remain in Arizona. Even if the midwestern weather did represent a risk to her health, I suspected that she and Jack would be home much earlier than planned. Our attempts to keep her safe in the southwest would ultimately fail. My mind stopped for a moment on all the other members of our extended family and on the many friends who had already begun to form a support system. I knew that support would be extremely important as a part of Gay's treatment. I then pondered the many things that Dr. River had told us. He had been very honest and straightforward with us and had patiently answered our many questions. I very much appreciated that. It is much easier to deal with a situation you know and understand than one you don't. I was very disturbed about the death sentence we had heard, however, and felt myself unwilling to accept that as the final word. Gay and I would have to talk extensively to other experts in the field and seek out other opinions, not so much about the diagnosis as about the treatment. I knew Gay felt the same. We would have to discuss it more in the morning. With that as my last conscious thought, I gave way to a restless sleep. 48 CHAPTER IV SUNDAY AT MERCY I woke on Sunday morning, once again happy for the day to be here. I expected that Shannon and Cameron were still in bed. They were, so I got dressed and had breakfast, my usual bowl of cereal and yogurt with fruit on the bottom. When I finished I went into Shannon's room to let her know I was going to the hospital and that she and Cameron could follow whenever they wished. She was just waking and sleepily acknowledged my message. We spoke briefly about the night before and then I asked her how she was doing, could I do anything to help her cope. She gave me one of her big smiles and as she shifted up to her one elbow in a half sitting position she said, "I'm okay, Dad. I've been sorting my laundry, too." She then settled back down under the covers still smiling at me. I gave her a ready smile back to let her know I understood. As I left I could tell that her waking state would not last long. I drove to the hospital and took the elevator to the seventh floor. I greeted a single nurse holding down the nurses' station as I passed by and went to Gay's room. I found her just finishing her breakfast and ready to take her second day's chemotherapy. I went over to the bed to give her a hug. She flashed a broad smile and happily returned my hug. Since I hadn't seen her take the pills the day before, she gave me an explanation. "Sure are a lot of pills, aren't there." I looked at the cup she was pointing to and agreed, automatically beginning to count. She saved me the trouble. "These three little peach colored ones are Prednisone and these five little white pills are Alkeran. I've forgotten the name of this black and speckled capsule, but it's for my stomach." I went to my briefcase for the notes I had taken the day before. I wanted to look up the name of the stomach medication. Gay continued her explanation as I scanned the pages. "I have to take them all after I've eaten something. That's to decrease the irritation to my stomach." With that she popped the pills into her mouth and swallowed them with a sizable drink of water from a glass on her breakfast tray. 49 "Compazine", I said. "The name of that pill must be Compazine." "That's right, thanks." "You didn't seem to have any side effects from the chemo yesterday. But, how did last night go?" "No problems, I've gotten through the first day without any ill effects." "That's super," I exclaimed in a burst of enthusiasm. "That's a marvelous beginning." I paused for a moment to change the subject. "Let's talk for a minute about second opinions. We agreed yesterday that we would seek out at least one, but didn't discuss how far we wanted to go with this." "I think," Gay replied, "that we should go to Iowa City or someplace like that and see what they have to say. Iowa City is close and sure has a good reputation. I know I don't want to go all over the world like some people do looking for a miracle cure. I would like to talk to experts in this country until we are satisfied we have a full understanding of this disease and the treatments that make the most sense. If there is a reasonable chance for a cure, I want to know about it. If there isn't, I want to spend the time I have remaining with you and the kids and the rest of our family and with my friends." "I understand and agree," I said, but before I could elaborate a man walked through the door saying, "Good morning, I'm Dick Kreiter." Many years had passed since our school days, but I did recognize him as an old classmate and he knew me. After we exchanged greetings of recognition, I introduced Gay. We each gave a quick synopsis of what we had been doing since we last saw one another and then Dick got down to the business at hand. "Gay, Dr. River asked me to look at your x-rays and give him and you my opinion." We both acknowledged that we knew this. He continued, "I checked the films this morning, but, before I get into that, could you tell me about what pain you have been having?" Gay described the pain in her back, hips and ribs as she had for Dr. River. 50 When Gay was finished Dick continued. "Your pain seems to match up well with what I can see on the x-rays. The disease has made lytic lesions, or small holes, in your skull, both arms and pelvis. There is one small hole in the right humerus, that's the upper arm, that is about half way through the bone. I think it's safe for now, but don't put any unusual weight on it. We'll watch it. There is also what appears to be a hair line crack in the front of your pelvis, on the left side. The bone on either side of the crack has not moved and I don't think this will cause any problems in the future unless what I think is a crack widens. It also looks like there may be another tiny crack in your sixth rib on the right side. That probably accounts for the pain in that area. I don't see any lesions in the spine, but the lower spine shows several small areas of decreased density in the bone. That has probably been caused by the multiple myeloma. I would not recommend we put pins anywhere at this point. Unless the pain gets worse, I would not recommend we radiate any of the bones either. Let's see if the chemotherapy will relieve the pain." Gay asked, "What about my back? Is there anything you can suggest to relieve the pain there?" "I've been giving that some thought and think you may want to try a soft lumbosacral belt." "What's that?" Gay asked. "It's a wide belt you wear around your waist to help support the back. Some belts are very wide and cover about half the back. They hold the back fairly rigid and are not very comfortable, but they do help quite a few people. The one I think would work for you would be a smaller one made out of a non-stretch fabric. You pull the belt as tight as you need it and then fasten it with velcro straps. It will restrict the movement of your back, but will not hold it rigid. These belts are a little bulky under clothes and will expand your waistline, so some alteration in your wardrobe may be needed. In spite of all this, I suggest we give one a try. If it gives you some relief, it will be worth the effort and inconvenience. Also, you don't have to wear it all the time. You may wish to use it only when you are away from home or you know you will have to be on your feet longer than you would like." "I'm certainly willing to give it a try. How do I get one?" "There are different styles and sizes to choose from. I think you should look at several and try a few on before you make a final selection. That will give you an idea of the support versus the comfort of each type and size." 51 "That sounds like a good idea." "Okay,well, you can see a variety of belts in most full service drug stores or, if you'd like, I can have someone stop up tomorrow with a selection for you to try." "Please have someone stop by. That will be easiest for me if it's not too inconvenient for the other person." "I'll make arrangements for that first thing in the morning." He then asked if we had any questions. We asked him about the healing process for the bones and he told us the same thing that Dr. River had said. We made a little more small talk about the good old days and he departed. Soon after that Dr. River arrived. We reviewed many of the things we had discussed during his visits of the last two days. We had learned a lot about a type of cancer neither of us were sure we had ever heard of before and found this review helpful. As Dr. River was about to leave Gay asked, "when do I get to go home? The people in this hospital are all very nice, but it can't compare to my own home." He gave a chuckle and replied, "Your doing quite well on the medication. Assuming that continues, you should be out of here by tomorrow afternoon." "I'll look forward to that," she said and then after a pause she turned pensive and observed, "For the past two days I have been listening and talking about the cancer that's in my body, but I still can't quite believe that this is actually happening." "That's not surprising, Mrs. Hoyt. I think you are doing remarkably well in spite of that." With that he departed, leaving us alone. About an hour later Shannon and Cameron came bounding into the room with smiles and greetings for their mother. I don't know if they were faking it, but it sure was better than two glum teenage faces. We had all agreed the night before that we would join Gay for the hospital's TV church service that was scheduled to begin at 11:00. The kids had timed their arrival to be in plenty of time for that. We turned on the TV so we would know when the service began, but left the sound down so we could chat while we waited. Punctually at 11:00 the service began. 52 We all took up positions in chairs and on Gay's bed to watch. Within a few minutes I had an uncontrollable urge to close my eyes. Some time later I became aware that I had been dozing through most of the service. I sheepishly looked around the room to see if anyone had noticed this and found that both kids and Gay were also asleep. Within about five minutes they awoke, one by one, and we had a good laugh at ourselves. We concluded rather easily that the minister doing the TV service was no where near as stimulating as Allen Wirtz, our regular minister at First Presbyterian Church. Otherwise we certainly would not have dropped off. Having thus absolved ourselves of responsibility, we turned off the TV and talked for awhile about how much fun it had been to see the family the night before. The conversation eventually revolved around to Gay's condition and the treatment. Much of this was repeating what I had told the kids the morning before, but it gave them another chance to express their feelings and gave Gay her first opportunity to tell them how she felt. One of the new things we talked about was the concept of a living will. It was not an easy discussion for the children, but Gay and I had clearly agreed that one or both of us would make her feelings known to each member of the family and to our closer friends. I began by saying, "Your mother is planning to make out a living will. I think I will do the same." Before I could go further Shannon asked, "What's that, Dad?" "You know there are machines that, in some circumstances, can keep a person alive even though they are not conscious and have little or no hope for life without the life support system. In your mother's case, a living will would be a legal document she can use to tell us what she wants done if this disease leaves her in a condition like that." Gay then clarified her personal feelings. "I don't want to be in a position where I am no good to anyone; where I'm just lying around, not knowing what's going on, and being artificially kept alive by some machine. I would much rather die naturally. If it comes to that, your Dad may have to make a decision to put me on a life support system or not and, if I'm already on one, to make a decision to take me off. I want you two to know that the decision won't really be your father's. It will be mine. He will have to talk to the doctors and make a judgment on when the time has come, but the decision to not go on living under those conditions is mine." 53 I knew her feelings very well, but hearing her say the words to her two youngest brought tears to my eyes. The tears came with a mixture of two powerful feelings. First, it hurt to think that at some point I might have to decide it was time to let Gay go, and second, I had an immediate and overwhelming feeling of fierce pride in my wife for the strength she was showing in her convictions. I wasn't sure I would be able to make such a decision so clearly under the same circumstances. Wouldn't it be easier to let someone else decide? But, that wasn't Gay's way. As I looked around the room, I saw Shannon sitting quietly with tears running down her face. She was on the bed beside her mom. After a few moments she turned to give her a hug and said, "I understand what you just said and I think I understand how you feel. If the time comes, we'll help Dad." She couldn't say any more at the moment, but we understood what she meant. I appreciated the sentiment. Cameron nodded his agreement. "I'll help, too, Mom." His face looked like a storm cloud had just burst open. We continued our conversation in a lighter vein until about 2:00 when Gay indicated she was tired and thought a nap would be helpful. Shannon, Cameron and I had things we each needed to do at home. We all gave Gay a hug at the same time and promised to return by early evening. When we arrived home we let Molly out and then finished the house pick up we had started the night before. Also the laundry and the dishes had to be done. I started working with the kids, but they ended up doing the lion's share. I began worrying about the people I had not yet contacted. and gave up the house chores in favor of continuing the phone calls where I had left off the night before. I went to the den with my list and began to call. I was surprised to find that most of our friends I wanted to contact were home on this Sunday afternoon. I also reached the people I worked with at Deere, both those I reported to and the people who reported to me. I didn't want to use the office to tell my colleagues of Gay's condition. Somehow I felt it was too personal and private a matter for that. The telephone wasn't perfect either, but it was better. Each person was very supportive and offered help in any way they could give it. That was very reassuring to me. At around 6:00 I hung up the phone from the last call and the kids were done with what was going to get done on the house. Tom Traylor had arrived an hour before to help Shannon with her math. When they reached a breaking point, we all headed for the hospital, but on the way picked up some burgers, fries and shakes to stop our tummies from rumbling. We got some for Gay, too, so she would have an alternative to the hospital food. As it turned out, she appreciated that. After food 54 and small talk, our students settled down to doing homework, I pulled out some reading from the office and Gay continued on a book she had started about a week before. The kids left for home about 8:00 and Gay and I talked quietly for about another hour before I departed. She would call me the next morning to confirm that she would be able to come home that day and what time she wanted me to pick her up. I was anxious to have her back home and she wanted to be there. Sleep came easier that night. We still had a lot of things to learn and many decisions to make, but we had made some real progress in understanding what we were up against, several issues had been resolved and no one had fallen apart. 55 CHAPTER V ALTERNATIVE TREATMENT UNDERSTANDING BONE MARROW TRANSPLANTATION Gay was released from the hospital on Monday afternoon as Dr. River had predicted. I went to pick her up at about 4:00 and we happily drove home. Shannon and Cameron were waiting anxiously for our arrival. When we came through the door from the garage, Molly came briskly out to see who had come into her domain, as she usually did. When she saw it was Gay her short little tail began to wag so urgently that I thought she might throw her hips out of joint. The four of us and Molly had a little celebration dinner to mark the homecoming. After we cleared the table I asked Gay what she wanted to do. She replied that she just wanted to be with us all and do what we normally might do on a Monday night. Her normal daily routine had become far more important to her than it had been only three days earlier. "We have had a very pleasant life and I, for one, have taken it for granted. I won't be doing that any more." I had been having very similar reflections and said, "I know exactly what you mean. I won't either." That night we fell asleep in one another's arms. That was a little out of the normal routine, but seemed appropriate anyway. After Gay had been home about a week, she told me that she was having a hard time sitting in the chairs we had in the house. The more upright she had to sit the more pain she felt from her back. She thought that the only chairs that would give her any relief would be a recliner type that would allow her to put her feet up and push the back to a lower angle. The back of the chair would then take the weight of her back and relieve those bones and muscles. After she told me this, she decided to take a nap and soon was asleep. This was on a Saturday. Cameron was gone with his friends, but Shannon was home. I explained her mother's theory about the chairs and asked her if she would like to join me in a project to find a chair that would be right. It would have to be the right size and have a mechanism that Gay could easily work. Her back would not allow her to fight with a recliner back to get it into position. It would also be helpful if it fit the color scheme of our solarium. Gay enjoyed the bright sun shinny atmosphere of that room and that's where the chair would undoubtedly find its new 56 home. Shannon immediately stopped what she was doing and readily agreed to go. We left a note for Gay in case she woke to wonder where we had gone and made Northpark Shopping Center our first stop in this hunt. We tried several stores there and found two possible chairs. They fit Shannon, who is about Gay's size. We were hoping to do a little better, however, so we went over to Brady Street and into Huebotter's Furniture Store. We found the recliners on the lower level and began testing one after the other. After about fifteen minutes of this, Shannon called out, "Hey, Dad, try this one. It fits me and I think Mom would like it." I tried the chair and agreed. It was comfortable, the mechanism worked easily, the colors would fit and it was on sale. Shannon and I returned home to find Gay up from her nap and refreshed. We told her what we had been up to and asked if she felt strong enough to go to the store to try the chair for herself. She did and I found that we were all a little excited at the prospect of finding something that might actually work. We returned to the store and Gay thoroughly tested the chair and pronounced it to be just right. An interesting thing happened then. While we were waiting for the order to be written up, Gay sat in a large red leather chair and found that it was also a recliner. That fact was not readily apparent from just looking at the chair. She tilted the back and propped her feet up. After sitting there a few minutes she said, "Try this chair, Dear. It's really comfortable. It fits me, but I'll bet it's big enough to fit you too." I sat in it and agreed it was a very nice chair. I also had to agree that it would fit very well in our den. Our luck was holding with us because this chair was also on sale. We ended up purchasing them both and feeling very lucky that we had found just what we wanted and for the two rooms where Gay spent the most sitting time. A few days later, I called Dr. River to discuss who he would suggest we see for a second opinion and how we should go about setting it up. My phone at the office is capable of adding a third party to any conversation so I was able to connect Gay in with us for a three-way conversation. Dr. River reviewed several competent sources. We discussed the relative merits of each and, in the end, decided on Dr. Burns at the University Hospitals in Iowa City. He was head of the Hematology Department which we thought to be a good set of credentials for Gay's disease. This was also the route Tom had suggested. We knew the the University Hospital to be an outstanding facility and it was close. Also, both Tom and Dr. River had expressed confidence in Dr. Gingrich. We reasoned that we might be able to see him in the same visit or a subsequent one. Dr. River said he would set up the appointment and call us back with the details. 57 About a week after that Dr. River's receptionist, Marsha Lorio, called Gay. We had known the Lorios for some years because their son, Brian was in the same class with Cameron and we rooted together for the hometown football team when we went to watch our two sons play for North High School. Marsha called to say that we had a meeting with Dr. Burns set up for 10:00 AM, March 7 in the Internal Medicine and Hematology Clinic at the University of Iowa Hospitals and Clinics in Iowa City. It was better known simply as Clinic B. That night after dinner I went back to the den and sat down at my desk to make a list of the questions we wanted to cover with Dr. Burns when we saw him. Gay came back to join me when I was about half way through the list and took up her now familiar position in the new red recliner. She picked up a magazine article she had begun earlier in the day while she waited for me to finish. When I had written as many questions as I could think, of I handed the list to her. She read it carefully and suggested one or two additions. I added them to the bottom of the list and filed it away to be retrieved on the 6th of March for review prior to our visit on the 7th. We rose early on that Tuesday morning. We were anxious to get to Iowa City to learn more about multiple myeloma and what courses of treatment might be open to us that we had not yet considered. We had picked up Gay's x-rays from the hospital and made copies of all of her medical records the day before. Our hope was that they would be helpful to Dr. Burns and avoid the need for a whole new battery of x-rays and tests once we got there. That would be both expensive and delay the answers to our questions as they applied specifically to Gay's case. It was about 8:30 when we left home. The skies were clear with the promise of a sunny pre-spring day as we pulled out of our lane and headed the car north on Division Street toward the Northwest Davenport interchange of Interstate 80. We merged easily from the on ramp into the westward flow of traffic. We had only about fifty miles to travel on this coast to coast super highway, but for us, that was a very important fifty miles. This portion of I-80 passes through the steep hills of the Mississippi River valley and runs west through the rolling hill country of eastern Iowa. In the summer it is lined on both sides with lush green fields of corn and beans. Pasture land pops up in between the fields where the hills are too steep for growing crops. On this day the fields lay dormant waiting for the planting of spring. Farmers would be back in the fields in about a month if the weather cooperated. About fifty minutes after leaving home we pulled off the highway at Exit 242 where a large green interstate sign signals the traveler to take this exit to reach the 58 University Hospitals and sports facilities. We turned south on First Avenue and drove past gas stations, fast food places and motels, then left past the University Golf Course and then right onto Hawkins Drive. This lead us up a picturesque winding hill through a part of the campus. At the top of the hill we stopped for a red light. The football stadium was straight through the light, to the right and our destination was to the left. When the light changed, I swung the car left and followed Gay's direction to the parking garage. She knew her way around the hospital and its grounds from the several times she had brought a friend of ours here for treatment of breast cancer the year before. We passed by the large circular fountain in front of the main entrance. The water was rushing out of the top and cascading down on all sides making a shimmering display as the sunlight played off the tumbling streams of water. A drive runs around the fountain past the front door of the hospital. I asked Gay if she wanted me to let her off at the door or if she felt strong enough to walk. She said she would prefer to walk with me. We parked in the parking building and took the elevator back to the first floor. Gay directed us out of the building and across the street to a side door to the hospital. From there we walked down a long hall and took a left down a second long hall. After another right and two lefts we were in the waiting room of the Hematology Clinic facing the reception desk. I thought to myself as we entered that if I had tried to find this place without Gay beside me giving directions, it would have taken another ten or twenty minutes, in spite of all the guiding signs. This was not a reflection on the hospital. I just don't have a very good sense of direction. Gay and I decided long ago that we would split the duties of travel. Gay would navigate and I would do most of the driving. It is an arrangement that has worked out very well over the years and is clearly understood by all of our children. The receptionist keyed Gay's name into her computer, waited for a moment and then looked up at us with a smile and acknowledged that Dr. Burns was expecting us. She asked us if we would have a seat in the waiting area. Shortly after that, a nurse called Gay's name and lead her into a small room at the far end of the waiting room to take her height and weight and draw some blood before seeing the doctor. After another short wait, a second nurse ushered us into one of several examining rooms. It was a small room. The first thing we noticed as we entered was an examining table positioned with its head toward the far wall. There was just enough room for a person to stand between the head of the table and the wall and for another person to stand between the side of the table and the wall to the right. There was a chair at the foot of the table just inside the door facing into the room. A sink was attached to the wall on the left, also just inside the door. Next to it ,a 59 writing table jutted out into the room from the wall. A stool was pushed under the table and a second chair was on the far side of the table with its back against the wall. The rest of the wall held cabinets and medical equipment. Another cabinet was above and below the sink. The nurse motioned Gay and me to the two chairs and she wheeled the stool out from under the writing table and sat on it. After we were seated she began asking a raft of questions and filling in the blanks on a multi page form with the answers we supplied. When she was finished she departed with a smile saying that the doctor would be in shortly. I stood up and crossed to Gay's left side to rub her shoulders and upper back. "How're ya doin, Love?" I asked. "I'm doing okay. I took two pain pills this morning and they're helping. You just ask lots of questions and take good notes so we know what we've got when we leave. Don't worry about me. I'll be fine." About ten minutes later a slender man of medium height wearing a white coat opened the door and stepped into the room. "Good morning, I'm Dr. Burns." he said as he closed the door behind him. "I hope you haven't been waiting too long." I introduced Gay and myself as we shook hands and Gay assured him that we had been kept quite busy since our arrival. He chuckled his understanding of that comment and took up a position on the stool the nurse had just vacated. After a short period of getting-acquainted small talk Dr. Burns said, "I appreciate your bringing the x-rays and test results with you. That should save us a lot of time. There are one or two tests that I don't see in the group that we generally like to have. Those are being run now from the blood drawn a few minutes ago. It is clear from the results I do have that you have multiple myeloma, Mrs. Hoyt. Your blood tests show an elevated beta 2 microglobulin level along with high levels of Total Protein and IgG immunoglobulin. IgG myeloma is the most common form. The urine test also indicates an IgG spike and the presence of Bence Jones protein. All of these are markers for multiple myeloma." "Dr. River explained the Total Protein and IgG to us," I said, "but what are Bence Jones proteins and beta 2 mincroglobulins?" "Let's take the Bence Jones protein first. As you might expect, it was named after the man who discovered it. This protein is a fragment of the abnormal antibody produced by the malignant B cells. I'll explain that a little further. The antibodies 60 are composed of light and heavy molecular chains. The Bence Jones protein is the light chain found in the abnormal antibody molecule. "Since we're on the subject of light chains, I might tell you that there are two types of light chains, kappa and lambda. Everyone has predominately one or the other. You have the lambda light chain, Mrs. Hoyt. That is the least problematical of the two. "A beta 2 microglobulin is a very small protein as the name implies. It is also a marker for multiple myeloma and its level in your blood can be used to predict the size of the tumor mass you have. Your beta 2 level is 1.8 milligram per liter. From that reading, my calculations indicate your tumor mass is relatively low at this point. That could be very helpful as we try to put this disease in remission. "A more complete description of your diagnosis, Mrs. Hoyt is multiple myeloma, IgG, lambda, Stage II-A." He then went on to describe the damage that the disease had already done to Gay's bones. He confirmed that, "If we are successful in pushing the disease into remission, the bones should repair themselves in time." He went on to say, "There is no known cure for multiple myeloma, Mrs. Hoyt. Chemotherapy can extend your life to five or six times longer than would be the case without it, but we don't know of a cure that has been proven. If successful, the drugs should also make you feel better than you do now, at least for some period." We now had heard the death sentence from two doctors, but it was more compelling this second time because it was a confirmation of the first. Our early morning hopes of learning something positive in this visit were fast fading away. I glanced at Gay. Her gaze was steady and fixed on Dr. Burns as he spoke. He continued, "I think the present protocol of Alkeran and Prednisone is the appropriate treatment for now. I have done some checking with my colleagues in other hospitals to see if they have found another protocol that would work better by taking advantage of your relatively young age, but none of them have. If it works, it will be the easiest on your body. If it doesn't, we will have to consider something stronger." At this point there was a knock on the door and in came Gay's brother, Tom. He introduced himself to Dr. Burns, whom he knew only by reputation. Dr. Burns said he had been expecting him and greeted him as a colleague. Tom left momentarily to find another chair and carried it into the room and put it next to Gay's. We spent 61 a few minutes bringing Tom up to date on the conversation thus far and then Gay brought us back to the main track of the discussion with a question. "What can we expect the Alkeran and Prednisone to do, Dr. Burns?" she asked. Dr. Burns replied, "I can't make a firm prediction since each case is so different from the next. I can tell you some things, however. The two drugs work independently from one another and each has its own effect on the cells that make up the immune system and on the myeloma cells. On one end of the spectrum, I think you're aware, this combination of drugs may not work at all. It could destroy a good portion of your immune system and have very little effect on the malignant cells. If that happens, your bones will deteriorate and the pain you have been feeling will get much worse. That would also leave you nearly defenseless from other diseases and infections. When this happens, the patient usually dies of another disease like pneumonia. "The combination could give you a second result. It could be very effective in killing malignant cells for awhile and then lose its effectiveness as the malignant cells develop an immunity to the drugs. This result would also be fatal if not reversed. On the positive side, it could destroy malignant cells. We know that in doing so the drugs will also destroy red and white blood cells and platelets, but these cells could recover faster than the malignant ones when you're off the medication. That's what we would like to see. We should be able to tell what kind of progress is being made within the next three months or so by the amount of protein in your blood. If we get a 50% to 75% reduction in the number of tumor cells, we will say that you have a 'response' from the drugs. That much of a reaction should reduce the pain you have been experiencing by a considerable amount and leave you feeling generally pretty good for a period. If we get the disease to the point where the pathologist is unable to find any malignant cells in the bone marrow, we will say the disease is in 'remission'. With many cancers that can be the same as having a cure, but with multiple myeloma, experience tells us that malignant cells are present somewhere even though we can't find them. The disease always returns. We can only claim a cure when all of the malignant cells are truly gone. Generally speaking, if we can't find malignant cells for a period of five years, we claim a cure. But, that's just a statistical guide and each individual is different. "You have a number of things that are definitely in your favor, however. You are young for someone contracting this disease. That could give you six to twelve months more time to live than otherwise, but the timing is very hard to predict. 62 Most people who get this disease are much older and have a harder time fighting it off. Second, your kidneys are not involved. We have detected Bence-Jones protein in your urine which means that they could become involved, but they haven't at this point. Third, you appear to be in good health except for this. I should mention one other positive point that I think can be very important. From what Dr. River tells me and from what I have seen in this meeting, you and your husband have a very strong desire to understand all you can about this disease and its treatment. You also have a very positive attitude about the future. That's extremely important in my book. All of these things argue in your favor for buying more time to live than the averages would indicate and to have most of that be quality time." "My grandfather died of multiple myeloma," said Gay. "Is there a chance that this is hereditary? I'd like to know if we should be on the lookout for it in our children." "I noticed that in your records. Some people are suspicious that there is an hereditary connection. All I can say is there is no evidence that heredity has any part to play in whether or not you get the disease." "Dr. River mentioned that interferon could be useful in the future treatment in Gay's case. Is this something we should be learning about and considering?" I asked. "Well, there is no proof that it is effective for treating multiple myeloma and there could be some unpleasant side effects from using it. I wouldn't completely rule it out in case more study shows a positive result can be achieved. From what I know now, however, I don't think it would be useful, and could be harmful." "Dr. River said there was a protein that settled out of samples of Gay's blood when it got cold. He wasn't sure if this had any special meaning for this case. What do you think?" I asked. "I noticed that in the results of the blood tests. I don't think it is either a plus or a minus for us. I do think, Mrs. Hoyt, that you should be careful not to get too cold, especially in your fingers and toes, so that settling doesn't happen in your body. I don't think it has any bearing on how we treat the disease." During the interview we asked a good many question, most of which affirmed information we had already learned. We now came to the main question we had really come to ask. I voiced it. "Everyone seems to feel that the Alkeran and Prednisone that Gay is now on is the best treatment for now. We know, however, 63 that the most we can hope for from this protocol is to put the disease into remission; we can't expect a cure. We have also learned that if these two drugs don't work there are other combinations we can consider. Assuming we are successful in bringing the disease under control by one set of drugs or another, is there some other action we should be thinking about taking to keep it there?" "Yes, you may wish to consider a bone marrow transplant. It has been used successfully as a cure for some other forms of cancer, such as Hodgkin's Disease and leukemia, but has not been proven to be a cure for multiple myeloma. Most people who have your disease are too old to withstand a bone marrow transplant so it hasn't been performed very often for multiple myeloma. Most of the transplants that have been done were completed only within the last few years and there hasn't been enough time to see if the disease will return. There is one study that was done in Europe of fourteen people who had a transplant for multiple myeloma. Ten out of the fourteen were still alive when the study was written up. I'm afraid that's not very conclusive one way or the other." "Have you a copy of that study we could take with us?" I asked. "Sure, I'll make sure you have a copy when you leave. "Since I thought that bone marrow transplant was something you would want to know more about, I have asked Dr. Gingrich to stand by to talk to you when we are finished. He is the Director of the Adult Bone Marrow Transplant Program here at the hospital. That is a division of Hematology-Oncology. If you have no further questions of me, I'll ask him to step in here to explain what bone marrow transplant is all about." We said we had no further questions, but would be very interested in speaking with Dr. Gingrich. Dr. Burns departed closing the door behind him. We had to wait for only a short period before the door opened again and in walked Dr. Gingrich. He was about five foot six with a medium to slender build. He had light brown hair and wore a broad smile on a very pleasant face. I judged him to be in his late thirties or early forties. "Good morning", he said, "I'm Roger Gingrich." I introduced Gay and myself. He already knew Tom. It was clear from early in the conversation that he was going to be very comfortable on a first name basis. The less formal style fit Gay and me better than using Dr., Mr. and Mrs. So, we were pleased by the change. 64 "I feel like I know you both from what Tom and Dr. River have told me. I'm glad to meet you in person. I have spoken to Dr. River several times about your case, Gay, and I have now had a chance to look at the records you brought with you so I know something of the details. I understand you would like to know about bone marrow transplantation. I would be more than happy to fill you in, but let me ask first if either of you know anything about the process. I don't want to tell you things you already know." "I think it's safe to say that Gay and I know almost nothing about it. Please assume we are pretty dumb about this whole area. You won't be far off." He chuckled at this and continued. "Okay. The first bone marrow transplant was performed about fifteen years ago and quite a few have been done since to attack a number of diseases. There have been relatively few transplants for multiple myeloma, however. The reason is that the procedure is risky and pretty rough on the body. I'm sure you already know that most people who get this disease are much older than you are, Gay. The process of going through a transplant would be more than their bodies could take. So, the fact that there haven't been many bone marrow transplants for multiple myeloma isn't because it might not make sense to treat the disease with a transplant. It's because there are very few people who have it who would be reasonable candidates for the procedure. Every hospital has its own rules governing the upper age limit for a transplant. Here, we don't usually do an autologous transplant above age sixty and an allogeneic above forty five." "What do autologous and allogeneic mean?" I asked. "Sorry, I'm getting ahead of myself. There are three types of transplants. One is an autologous transplant. In this procedure we first must put the disease into remission to the point where there are no further malignant cells in the bone marrow. Then we take about a pint to a pint and a half of bone marrow from the patient and freeze it until we're ready to use it in the transplant. The patient then goes through three days of total body radiation followed by five days of very heavy doses of chemotherapy. It's about ten to thirty times as strong as what you are taking now. The objective is to kill any malignant cells that may be left in the body. The patient's bone marrow will be completely killed in the process. After that has been accomplished, we give the patient his or her own bone marrow back. "In the allogeneic transplant we go through very much the same procedure, but we don't take bone marrow from the patient. We take it from a donor who has marrow that is a close match for the patient's own marrow. In this case, the patient 65 undergoes the same three days of radiation and five days of intensive chemotherapy. But, at the end of that time, we take bone marrow from the donor and transplant it into the patient. One of the obvious difficulties here is that we must have a willing donor who has bone marrow that is a close match. This is not always an easy thing to do. The best source is from a sibling. Potential donors must be tested to see if they are a good match. The chances of finding a donor outside your own brothers and sisters is about one in twenty thousand. It's also very expensive if you have to test a lot of people for a match. You may have seen accounts on the news recently telling of people who have died while searching for a donor. I know that you have one brother in Tom. Do you have any other brothers or sisters?" "Yes, I have one older brother besides Tom." "That means you don't have an identical twin so we won't be concerned with the third type. That's a syngeneic transplant where the donor is an identical twin. In such cases, we are assured of a perfect match. "The fact that you have two brothers could be very helpful if you decide you want to go in this direction." Tom chimed in at that point. "If you want some of my bone marrow, Sister, I would be glad to make a contribution." Tom sometimes called Gay 'Sister' when he wanted to make a point with special emphasis. This seemed like a good place for emphasis. Gay gave him an appreciative smile and turned her attention back to Roger who had paused to see if his audience was keeping up with him. I took advantage of the pause to ask,"Could you explain the advantages and disadvantages of these two different processes?" "Sure. The autologous is the safer of the two. Since the patient is taking back his or her own bone marrow there is no chance for rejection. The bone marrow should slip into place and begin generating red blood cells and platelets within a relatively short time. It should also produce white cells that will see the patient's body as friendly and not attack it. A major problem could arise with this type of transplant, however, if the patient's bone marrow had some malignant cells in it when it was taken out of the body originally. In this case, we would be putting diseased bone marrow back into the patient's body. Obviously, that would be counterproductive. 66 "We sidestep that problem with the allogeneic transplant because we are pretty sure that the donor's bone marrow is disease free. The problem arises when the new marrow begins to produce white cells. These white cells are used to the donor's body and see the tissues in the patient's body as being foreign. Their whole mission in life is to seek out and destroy foreign cells. They assume the foreign cells are harmful to the body and they attack. The most vulnerable places to be hit by this attack are the skin, G I tract and liver. It can also involve the lungs with pneumonia. We call this Graft Versus Host Disease or GVH for short. In most cases we can control it with medication. Where we can't, the patient dies. That seems like a harsh way to put it, but that is the reality. "There is a major risk with both procedures which can also be fatal. After the total body radiation and the heavy chemotherapy, the patient's body is completely without an immune system and is unable to fight off even a mild virus, bacteria or fungus. We begin to administer a regimen of broad spectrum antibiotics at the point of transplant and continue until we feel the bone marrow is producing a white count that is within the normal range. That could take up to about a month. That doesn't mean that the immune system is back up to par, but it does signal that it has a fighting chance of holding a harmful bug at bay, if one comes along, until we can determine what it is and provide medication against it. In about 15% of the cases across the country, the patient is lost to a disease or infection that can't be controlled with medication." While Roger was catching his breath, I asked, "What are the side effects of the radiation and the heavy chemotherapy the patient has to go through at the beginning of the process?" "Some people go through with very few side effects, but that's not the case with most people. The most common side effects are vomiting, diarrhea and hair loss. We can usually suppress the vomiting and diarrhea by giving the drugs at night while you sleep, giving you drugs to relax the stomach and administering sedatives. It doesn't prevent it all, but it helps a good deal." "How does the transplant itself work?" I asked. "I picture a transplant as opening up a person and putting in one organ to replace another. This sounds like it is much different than that." "It is. This is really the easiest part of the whole procedure and is the same regardless of whether the bone marrow has come originally from the patient or another donor. When the bone marrow is originally taken from the body it is pretty 67 thick, something like a paste. It doesn't flow very easily. So, the first thing we have to do is thin this material down so it can run through a tube and then place it in a plastic bag. The bag is hung on an IV stand and runs into a vein in the patient's body almost the same as we would do a blood transfusion. The most amazing part of this process is that the bone marrow knows where its home is and within about thirty minutes it has all left the blood stream and has found its way into the bone marrow cavities throughout the body's skeletal system. Once it's there, if all goes well, it begins to reproduce itself until it has filled all of the bone marrow cavities in the body. I estimate, Gay, that you have about five to six pounds of bone marrow in your body. The pint or so of new bone marrow we would put into your body would grow until there was that much again. That would take about a month." "Now we have new bone marrow going in, but what happens to all of the old bone marrow that was killed by the radiation and chemotherapy?" I asked. "A couple of things happen. Bone marrow is made of a number of different kinds of protein. The body breaks down the protein cells into their various elements and reuses the elements that are still good as building blocks in other parts of the body. Where this is the case, other cells come into the bone marrow cavity and carry these elements to where ever they are needed. The elements of the cells that are no longer useful are carried off by the scavengers of the body and are flushed out as waste. That makes room for the new bone marrow to take up residency where the old marrow used to be." "You said something awhile ago that led me to believe that it takes more than just a normal number of white blood cells to make a fully functioning and effective immune system. How does the immune system come up to full strength and how long does it normally take to get there?" I asked. "That's a good point. There are many different parts to the immune system and they must all work together as a team before the system is completely back to normal. It's a little like a football team that has eleven competent players on the field. The team doesn't begin to play nearly up to its potential until all the players communicate well with one another and the plays are run smoothly. In our experience it takes at least six months for this teamwork to gel and often nine to twelve." "What are the chances that either Tom or Gay's older brother, Dave, would be a good match for Gay?" 68 "There is a 25% chance that one sibling will be a match for another." "That means that there would be a 50% chance that one of Gay's brothers would be a match," I said. "That's right." "If Gay went in for a transplant, how long would you expect her to have to stay in the hospital?" "The whole process takes about eight weeks. Sometimes patients have to return to the hospital for treatment after they are released. We have also had patients leave earlier than that, but I would count on at least eight weeks." "What about after she leaves the hospital?" "The total post discharge recovery takes from several months to a year. That's the time for the immune system to come up to full speed as we discussed earlier. Patients often feel like they are stronger than they really are after about four months and want to do things out in the community that would put them in danger. You feel strong, but the immune system is still lagging behind. In the case of an autologous transplant, you should stay out of the main stream for about six months to make sure you don't pick up something from someone else that you can't fight off. That time should be nine to twelve months for an allogeneic transplant." Gay cleared her throat, leaned forward in her chair and asked, "What does a bone marrow transplant usually cost, Roger?" "An exact figure is difficult to predict since there are so many variables to the process. In your case I suspect it would run between $100,000 and $150,000." I made a note of the information while Gay asked another question. "If Tom or Dave gave me some of their bone marrow, what would they have to go through?" "The procedure is fairly simple. Didn't Dr. River take some bone marrow from you when you first saw him?" "Yes, he took some from my sternum." 69 "Okay, this is done much the same way except that we take it from the back side of the pelvis where the supply is most plentiful and we take more of it. Whichever brother it was would come in as an outpatient. We would have him lie on a table on his stomach and would then administer a local anesthetic that would take out his feeling from about the waist down. We would then bore a small hole in one side of the pelvis and pull out as much material as we could. We would then use the same hole in the skin, but move to another spot on the surface of the bone to make a second hole into the bone marrow cavity and take out what marrow was in that area. We would make several more holes in the bone until we had gotten what we could from that side of the pelvis. We would then do the same to the other side. The entire procedure takes about forty minutes. For a few hours after the anesthetic wears off your brother would feel like someone hit him with a bat on the back side. Then he would feel stiff for a few days. The holes in the skin and bone heal fairly fast and the bone marrow reproduces itself very quickly. Within about a week to ten days he would be feeling close to normal." "Roger, check me on this, please," I said. "We may be able to put this disease into remission, but we know that historically it doesn't stay there. That must mean there are some malignant cells always around. If we took some of Gay's bone marrow when we thought the disease was in remission, wouldn't there be a very high probability that we would be giving her back diseased marrow when we fed it back into her body?" "I think you understand the issue very well. In my opinion, that is a distinct possibility and perhaps a probability. You and Gay will have to think about that if you want to pursue a transplant." I glanced at my watch. The time was a little after noon. We had been at it for quite awhile and I could tell that Gay was getting tired. I was about to draw the discussion to a close when Gay asked a question that had the effect of doing the same thing. "What do you think we should do now?" "I think you should continue on the Alkeran and Prednisone for now and see what kind of a result you get. If you are successful in putting the disease into remission, we can think about the advisability of having a bone marrow transplant. If you don't get a good result, we should think about trying another protocol." Everyone nodded their heads in agreement that this made good sense. A silence followed and I sensed that we had gotten what we came for. I leaned forward in my chair as if to get up and said, "Roger, we very much appreciate the time you have 70 spent with us this morning. We have learned a good deal from this visit and we thank you for your patience in answering our endless stream of questions." "I'm happy I could be of some help, Harry, I hope I see you and Gay again," replied Roger as he rose from his stool. Gay also rose and said, "I thank you, too, Roger. You have given us a lot to think about." "You're entirely welcome, Gay. I hope things go well with you. By the way, I will be sending a report to Dr. River with a summary of this visit." "We would appreciate it if you would send us a copy," I said. I took a lot of notes, but I know I missed some things. Your letter would be helpful." "Sure, I'd be happy to do that." Tom also expressed his appreciation to Roger and Roger left the room. "Can you join us for some lunch, Tom?" I asked. Tom checked his watch and said, "I have just enough time for a quick bite if you don't mind eating in the hospital cafeteria. The food is okay if you know what to get and we should be able to get in fairly fast this far after noon." Over lunch we brought Tom up to date on things our children were doing and then he told us about his busy schedule as a resident at the hospital. We also had time for a brief review of the morning's meeting. Then it was time for Tom to get back to his duties and for us to head for home. Gay and I walked to the parking garage. She was moving slowly and I could tell that her back was giving her a good deal of pain. She had taken two Tylenol 3 toward the end of lunch, but they hadn't yet taken full effect. At best, they took the edge off the pain, they didn't really eliminate it. As I steered the car down the ramp to the cashier's booth, Gay experimented with different positions of her seat. She seemed to get the best relief for her back when the seat was tilted back so that the weight of her upper body was taken by the seat and not her back. We retraced our route down the hill through the campus and back to Interstate 80. When we reached the highway, I set the cruise control to help ensure that I didn't 71 inadvertently press the accelerator too hard and get a ticket on the way home. For the first several miles we exchanged thoughts on what we had heard from the two doctors to make sure we both understood the key points the same way. Over the years we had fallen into the habit of doing this after every important meeting we attended. For that matter, we had also done this after gatherings that were of no particular consequence. After we were both satisfied we had heard things the same way I said, "Parts of these two meetings were a real downer. Its depressing to be told that there is no way out." "Well, it wasn't any fun to hear, once again, that there is no cure for multiple myeloma if that's what you're referring to." "That's it. But, it seems to me that we also heard some hope, at least more than we have heard up to now. I think there is some real logic to the concept behind the bone marrow transplant. If you could manage to actually kill all of the malignant cells and then successfully rebuild your immune system, there just might be the basis for a cure. Of course, you have to survive the process itself. I don't like the risks involved in the whole transplant procedure; killing off the immune system and the possibility of rejection if you take someone else's bone marrow. It's a high risk, high gain decision." "I agree, we owe this possibility a lot of thought. I can't help but think, though, that if I got this beast into remission and started to feel like my old self, it would be very difficult to give that up and subject myself to the process we heard about today. It sounds risky, as you say, and also mighty uncomfortable. I should probably say painful." "The problem," I said, "or at least one of them, is that the doctors can't even guess as to how long you might keep the disease in remission assuming you were fortunate enough to get it there in the first place. So, you don't know what the trade off is. You wouldn't know how much time you had left to trade off against the risk of the transplant. To make the decision to have the transplant, you would have to firmly believe that you could not hold the disease in remission for very long." "I think," Gay added, "you would also have to believe you could get a cure from the transplant. I don't think it would be worth going through that if all you expected to gain was to buy a little time, and again not know how much. If I get this thing in remission, this will be a very difficult decision." 72 "Even if you decide you wanted to go for a transplant, we would have to determine which kind made the most sense." "I know, and I don't feel I know enough about the pros and cons of each to make that decision today. You seemed to have a better understanding of that than I did in the meeting. Would you run through it for me?" "I'm not sure I did, Gay, but let me give it a try. I think it boils down to a trade off between making sure you get bone marrow that is clean of disease by taking it from a donor, but running the risk that the cells produced by the new marrow will attack your body, and reusing your own marrow to ensure there is no chance of rejection, but take the chance that it may still contain malignant cells. That's a heck of a choice, but we may be glad to have it, especially if the chemo doesn't work as well as we hope. I can't shake the feeling that for people with multiple myeloma, using your own bone marrow would be counterproductive. If we understand the nature of this disease correctly, there is a very high probability that there would still be some myeloma cells in the marrow when it went back into your body. If that's the case, I'm not sure what you buy except more trouble. I may be jumping to a conclusion too quickly, though. We have just started to learn about bone marrow transplants today. I suspect we need to know a good deal more before reaching any hard conclusions." Gay thought about what I had said for a moment and said, "That helps. I think I understand the trade off a little better now. You're right, we do need to learn more. I think the library may have some articles and Tom should be able to find some information in that computer he has at home. He told me about a year ago that he joined a service that can find articles on specific subjects and send them by phone lines to his computer. I'll call him this weekend to ask." Then Gay shifted in her seat and abruptly changed the subject. "Bone marrow transplants certainly are expensive. That's an awful lot for us to come up with. It would be a lot for anyone for that matter." I quickly replied, "If we determine that this is the best road to travel, then we will find a way to pay the bill. You need to concentrate your energies on whether a transplant is right for you and let me worry about the finances." "I appreciate your saying that," rejoined Gay. "That makes me feel better. But, I have a nagging feeling. It makes no sense for me to spend a ton of money and then 73 end up dying. My family would be broke and I'd be dead. You read about this happening and I've always thought it was an unfortunate waste." "I can agree with you from an overall sociological stand point, but when it comes to you, I have quite a different feeling about the value of money and where it should be spent. That's a side of me that may not be totally logical. "I wonder if Deere's insurance would cover it," said Gay. "I don't know, but I'll call next week to find out. It would be wonderful if they would." Gay started to speak and then paused for a long moment as if working through a puzzle. "Do you suppose there would be any merit in taking some of my bone marrow out, assuming remission, and freezing it, but not using it right away. Let's say the disease goes into remission and I start to feel pretty good. Take the bone marrow out and freeze it. Then see how long it stays in remission. If it started to come out of remission, do you think I could opt to have the transplant done at that time?" "That is a very interesting thought, my Dear. From what we learned today, I would guess that its a viable alternative. To carry the thought a step further, would it make sense to freeze some of your bone marrow even if you decided on an allogeneic transplant? If the new marrow didn't settle in properly, could you then replace it with your own?" I paused to ponder these two new thoughts and I could tell Gay was doing the same. I then added, "I can see two possible drawbacks. First, we would still have the question of whether your bone marrow was still diseased and second, would the body be strong enough to withstand two transplants in a row. That could result in too much radiation and chemotherapy. If we could satisfy ourselves on these two points this could be a safety net to protect against a bad result with the first attempt at transplant." "Better start a new set of questions," Gay said with a smile. "I think we have an appointment with Dr. River next week. If he doesn't know, we can ask Roger next time we see him." "I think we should find out if you even have a viable option between the two types of transplants. At this point we don't know if either Tom's or David's bone marrow would be a match with yours. Tom certainly seemed willing, even anxious, to give you his bone marrow if it does match. It's clear to me that David would feel the 74 same way. If both of them went in for a blood test, we would know if either one is a match. If neither one is, then there's little sense in wondering about the difference between the two types. If that's the case, we will just concentrate on the autologous transplant. If one of them is a match, we can celebrate because you will have a choice." "That's a good idea. Perhaps Tom can arrange the test through the hospital. Perhaps we can also discuss that with Tom this week. After talking to Tom, we can call Dave. We should tell him and Janie about our visit today anyway." "Speaking of that, would you like me to give your mom and Jack a call when we get home?" "I would appreciate that. I think they want to know and it would be easier on me if you explained it. You're better at that than I am anyway. You give me the phone when you're done and I can talk to Mom about more fun things." With that, Gay reclined the passenger's seat a little further back and gave me a little wink as if to say, "I'm going to check out for a while. Wake me when we get home." She eased her head back against the head rest and closed her eyes. It had been a long and intense day, taxing both the intellectual and emotional fiber. She was asleep within minutes. Normally I feel sorry for myself if Gay goes to sleep during a long ride, but today I was happy to see her getting some rest. I was alone with my own thoughts for the rest of the ride home. That was fine with me. I had plenty of them to sort through. It would take more than the ride home to complete the job. 75 CHAPTER VI THE FIRST ATTEMPT AT TREATMENT ALKERAN AND PREDNISONE At the point of our visit to Iowa City, Gay had been on the Alkeran and Prednisone for about a month. During the visit Dr. Burns confirmed how deadly an adversary we were up against, and Roger gave us an introduction to what could be a risky alternative treatment. Now, on this medication, we entered an eight-month period of watching and waiting; a period where patience would have been a real asset, had we had some. A period of trying to read what was happening to the disease and Gay's immune system from numbers on charts representing results from blood and urine tests and from the occasional x-ray. And a period of trying to read meaning into the varying levels of pain Gay felt in her back bones and ribs from day to day. It was a time for some intense learning, too. We collected material from the hospitals, the doctors, American Cancer Society, U.S. Department of Health and Human Services, local libraries and friends. We devoured articles, pamphlets and books on multiple myeloma and bone marrow transplantation. Unfortunately most of the material we found that was written for the layperson was fairly general. Nearly all of the articles that had enough detail for our purposes were written for medical practitioners and were difficult for us to fully understand. We managed to get some help out of each of them, however. We also talked to people who had had some experience with either multiple myeloma or the transplantation process. This was a time for confirming what we already knew, for correcting misimpressions, for adjusting previous understandings with the addition of new details, and for adding fresh information. It was a time of many questions and depressingly few clear-cut answers. In hind sight, it is clear that all this served to reinforce and refine our understanding. At this point we had the base information that we would need in making the critical decisions of the future. As much as anything else, this period gave us the time to absorb what we had heard and read, to become comfortable with what was fact and what was theory, what was clearly understood and what was only conjecture, what could be confidently predicted and what was unknown. It was also a time to adjust the priorities of our lives, both day-to-day and long term. It was a time to organize all of the material we were accumulating. We set up a number of separate files: Doctor's Correspondence, SMAC Tests, Weekly CBC 76 Tests, Articles, Drugs, Bills, Bone Marrow Transplant, Multiple Myeloma and Harry's Notes. This little home-made system really helped us keep tract of all the different pieces of paper and to find things when we needed them. It was also time to find out if Heritage National Health Plan, Deere's wholly-owned HMO (health maintenance organization), would cover a bone marrow transplant. I was delighted to find that there was no question about it, they would. I was pleased for two important reasons. The first one is obvious. It would relieve us of a substantial financial burden. The second is perhaps not so obvious. Gay had been very concerned about the potential impact on her family if we had to pay for a transplant. I sensed that her worry over the cost was preventing her from fully focusing on the important issues of the risk versus potential gain of having a transplant. Now she would be free to refocus her energies on both the thinking and feeling levels and reach a conclusion on whether or not to have a transplant for the right reasons. Most importantly, it was a time for Gay and me to deepen an already wonderful union, to tighten the bonds that held us fast, and to continue forging a solid alliance to repel the enemy. There were two major aspects that came into play in Gay's treatment. The one that is more commonly thought of in connection with treatment is the medical side. That involved the detective work it takes to determine what is going wrong and correcting it through drugs designed to fight off the disease and build up the body. It also involved bed-rest, but only when needed, and keeping energy up by taking in fluids and nutrition. The other aspect is not usually thought of as being medical, but had an important influence in the treatment of the disease in Gay's case. This aspect had three critical parts: ordering our own lives so we could be most effective in fighting the disease, welcoming the active support of others, and most importantly, maintaining a positive personal attitude. Gay had already begun the process of reordering her priorities without fully realizing it. It was now time to make conscious decisions about what things were truly important and what could be allowed to slide. Each member of the family instinctively did the same thing to accommodate the changes Gay was having to make. She had traditionally been the manager of our home. In our family that goes far beyond buying groceries, preparing meals, and running countless errands. It means doing whatever is required to ensure that the home and the family run smoothly. That's a constant job and a big one with a set of complexities all its own. Gay could no longer take on all of those responsibilities. What she couldn't or 77 shouldn't do fell to Shannon, Cameron and me. Interestingly, this transition took place without very much discussion. As we each saw something that we could do, we did it. It might not have been done very well or very efficiently, but it seemed to work. Over the years Gay had become more and more involved in community activities as the children required less of her attention and time. This wasn't a conscious effort, but rather a natural evolution. We were a little surprised as we counted up all of the activities. She was treasurer of one of the local chapters of P.E.O., an international philanthropic women's organization. She was an Elder at First Presbyterian Church, a member of the church Session and the Finance Committee, and visited the home-bound members of the church as regularly as she could. She was also a part of a small group that was instrumental in implementing an in-depth Bible study course that ultimately involved hundreds of church members and had been a course teacher for several years. She was entering her second year as treasurer for COOL, a volunteer organization that sponsored a party kids could go to after the North High School prom and was a member of a school committee with a long name, the Multicultural Nonsexist Advisory Board of the Davenport Community School System. Gay now had to develop a strategy for backing off on some of these commitments, both for her own safety and to bring them into line with her diminished level of energy. Her focus and strength had to turn heavily toward fighting the multiple myeloma and keeping herself as safe as was reasonable from catching anything else while her immune system was functioning at less than full strength. There was a delicate balance that had to be struck, however. She couldn't maintain her previous pace, yet didn't want to cut everything and everybody off, either. That would have been a very unpleasant alternative for Gay and probably counterproductive to recovery. She is a very social person. She loves people and we intuited, that interaction with others would be beneficial. She would draw strength and motivation from them. So, choices had to be made. She decided to continue the two treasurer jobs for the remainder of her term, but function in them differently than before. She could work on the books at home to fulfill her responsibilities and would not have to go to the organization meetings where she could come in contact with unwanted germs. She continued in her church duties, but at a reduced level of activity. The Finance Committee and Session meetings were smaller with a reduced chance of infection and a greater chance of spotting someone who might be a carrier. She could also skip meetings if she wasn't feeling up to attending and, in the early part of treatment, she did just 78 that. As the medication began to have a positive effect over the first three months or so and her strength started to return, she found she could go to more of the meetings and contribute. She would usually take two Tylenol 3 to relieve the pain before leaving the house and if the meeting went on too long, as often happens in volunteer organizations, she would excuse herself and come home. The other members understood. This informal system of managing seemed to work out quite well. It was hard for her to keep from volunteering for new assignments. She would see things that needed to be done and knew that she had the expertise to accomplish them. She also knew that she didn't have the strength. Her friends and fellow committee members also knew that and didn't ask her to take on extra responsibilities. Our friends instinctively knew that Gay's activity level must be reduced so instead of asking her to come to their house or meet at a restaurant, they would come to our house for short visits and perhaps to bring a lunch to share with Gay. These short visits were very beneficial. As the chemotherapy took effect, Gay regained some of her normal energy and we were able to go to other people's homes for visits. The visits were generally shorter than they would otherwise have been, but nonetheless, very enjoyable and, at the same time, therapeutic. Over the years Gay had touched a lot of people within and outside the scope of her community activities. Those people now circled around our family, and Gay in particular, to form a large and very effective support system. The support was both formal and informal. The formal support came from organizations where she was or had been a member. Gay made an impact in any group she joined and other members genuinely liked her for what she contributed to the organization and to them as individuals. The informal support came from our many friends. These people came forward with their words of encouragement and genuine concern. We found that many of them were excellent cooks, too. At a time like this, it seems that fixing dinner is a chore that no one in the family wants to take on. Many people gave real help in this regard by bringing over dinner for the family or joining Gay at our home for lunch with them bringing the lunch. A very generous and meaningful way to show they cared and were concerned. At one point when Gay was feeling up to it, the people from my department at Deere and their spouses joined us at our home for dinner. They suggested we make it a pot luck and they brought the food and helped clean up afterwards. That help made the get together possible. Everyone left early so as not to tire Gay and we all had a delightful time. 79 All the concern and caring that was shown really boils down to a simple truth. Gay had touched a lot of people over the years. She was well loved and they wanted to touch her back. They did. It may sound natural enough for people to show concern for the person who is ill, but many surprised and delighted me when they asked how the children and I were holding up. Many offered their help in directly supporting us along with Gay. This was particularly true for the kids with their friends at school and for me with my colleagues at the office. The initial support for our family began during this period and grew stronger as the need for it grew over the following months. The nucleus of support for Gay came from within the family and from a few very close friends. Shannon, Cameron and I had a chance to be attentive on a daily basis and we took advantage of that opportunity. Paige and Andy arranged their lives so they could come back home for a visit within a short time after learning of their mom's diagnosis. They both wanted to see how Mom was doing first hand. During this period Matt and Debra moved their family to Charlotte, North Carolina, but returned for visits. Matt was our third child to move out of town. The telephone was put to good use. Paige, Andy and Matt called every few days to chat with their mom and to find out from me just how she was doing. I don't think they always trusted her to tell them the truth. Erin lived only a few blocks away and could stop by the house more easily. Gay's mother and Jack came home from Phoenix in early March, quite a bit earlier than originally planned. They immediately and naturally became a central part of our nucleus. They made frequent visits to the house to see if Gay had any needs and just to keep her company. Mom phoned every day, even if she had been to the house. She was never very far away in case she was needed. On one occasion when I thanked her for all her help, she said she thought that sometimes I could use some mothering too and that she was happy when she could provide it. I agreed. I had a business meeting in San Diego shortly after our visit with Roger Gingrich. That gave me a perfect opportunity to stop off in Phoenix on my way home to personally bring my aunt and uncle up to date on the intricacies of multiple myeloma, the strategy for treatment and Gay's progress. The two of them were as supportive of us as they had always been in every other facet of our lives. They both called us often and wrote newsy letters that were also full of encouragement. They were able to arrange their time to visit us in late April. 80 Gay's cousin, Judy Wilmeth, was very supportive throughout. She also lives far away, in Providence, Rhode Island, but was in frequent contact with long phone calls and delightful letters. She is a witty, bright and very practical woman who has the capacity to make you laugh with the recounting of incidents in everyday life. She came for a long visit in July and kept us chuckling the whole time with her stories. Linda Wagner, Laura Rovang and Penne Duncan were also a part of this nucleus of support. All three had formed a strong friendship with Gay that dated back many years. Each now stepped forward in her own way to provide help and encouragement to our family in countless ways. They were there whenever they were needed and also when they were not, just in case. Tom Isaacson was also a major player. He had been an influence in our seeing Roger Gingrich and now consulted with Gay and me on the nature of the disease and was a sounding board on future action. He was also able to help others in the family understand what we were dealing with, mainly Mom and Jack, and David and Janie. He often confirmed and clarified what Gay and I had told them and sometimes expanded upon it. Tom's most important contribution in this early stage was to take charge of having the necessary tests run to determine if either he or David would be a match for Gay's tissue. Everyone was in agreement that all three should have blood drawn and analyzed to see if there was a match, but because of busy schedules it wasn't getting done. By late April I was anxious to have the tests behind us so we would know if an allogeneic transplant was even an option. If it was, we needed to find out more about it and give our minds time to absorb and get comfortable with the information. If it wasn't, we needed to concentrate on the autologous alternative. One evening I decided to quit stewing about this alone and called Tom to express my frustration and see if he had any solutions. I found that he was feeling the same concern and was ready to move into action. He said he would arrange for the testing to be done at the University Hospital and would also see that blood samples from David and Gay would get to the lab in a timely fashion along with his own. He gave himself two weeks to accomplish this feat. If either David or Gay could not meet that schedule he would come to them, draw their blood and take it to Iowa City. Satisfied and pleased, I thanked him and hung up the phone content to leave it to Tom. 81 He performed as promised. David was working long hours and seven days a week and was unable to get away, so Tom drove to Bloomington on Sunday, May 7, drew the required amount of blood from David, and delivered it to the lab on Monday morning. He had his own blood drawn when he took David's in. Linda Wagner drove Gay to Iowa City on that same Monday morning to have her blood drawn. The impossible had been accomplished and I was relieved. Now all we needed were the results. We knew that there was a fifty-fifty chance that one of the two brothers would be a match for Gay. We also knew, from a conversation with Dr. River, that the blood test compared six elements on one chromosome in Gay's cells with the same six elements on the same chromosome in the cells of her two brothers. The best match for a bone marrow transplant was to have these six elements in Gay's cells be identical to the six elements in one of her brother's cells. Matching on all six would still not guarantee success. In fact unless the donor was an identical twin the recipient was almost sure of experiencing some rejection. Matching on any less than all six, however, increased the chance for failure substantially. About a week later Gay called me at the office with excitement in her voice, "Guess what." But, before I could answer she rushed on, "Tom just called and told me that he is a match for me. He said we matched on all six elements. I thought if anyone would be a match, it would be David, but it's Tom. What do you think of that?" "I think that's absolutely marvelous. I guess we don't know yet if you want a transplant, but if you do, you have a choice. I think that's great. Good for Tom. I'm very glad he came along even if he was a surprise for your mom and dad." There was one last element to the non medical side of Gay's treatment, her unshakable positive attitude: "I'm here and you're here. Let's go forward together and lick this disease. I know we will do it together." It was an attitude that affected everyone who came in contact with her. She wasn't loud or extroverted about it. It was just a quiet, pleasant insistence that we were going to win. It wasn't superhuman either, but a healthy combination of good old-fashioned determination and faith. Gay was as much a support for me as I was for her, a real partnership. She was also an inspiration for others to the extent that people would go out of their way to comment to me about how wonderful it was. While all of this was going on, the drama of the medical charts was playing itself out. Dr. River cautioned us to not make too much out of changes in test results or in Gay's pain level. He pointed out that this would be a long process and that only 82 sustained readings over time could be viewed as significant. Gay was much better than I at heeding the advise. I reminded myself of Dr. River's words each time I looked at a new set of test results and then immediately and automatically set to analyzing the figures to fit them into a pattern and make sense of them. Regardless of this variation in how we approached the test results, Gay and I both felt strongly that we needed to identify, as nearly as we could, what effect the Alkeran and Prednisone were having on the tumor load. We also wanted to keep very close tabs on the effect the medication was having on Gay's ability to ward off other diseases and infections. Gay began taking the Alkeran and Prednisone while she was still in the hospital, on February 11. The model cycle was for her to take this combination for six days and then stop for four weeks. If her blood counts were high enough after the four weeks, she would begin another cycle. If they were too low she wouldn't start a new cycle until the counts came up to acceptable levels. Gay went into Dr. River's office every Monday morning for a CBC blood test to check the counts. This test took only a few minutes. Each time she went in, Jackie, the technician in his office, took a blood sample by pricking the end of one of Gay's fingers and processed it through a machine in the office. The machine analyzed the sample and produced a report that indicated the levels of several elements in Gay's blood. We tracked only the readings on the white blood cells, the hemoglobin and the platelets. These readings gave us vital information on the effect the chemotherapy was having on Gay's body. The white count gave us an indication of the body's ability to fight off disease and infection. Dr. river considered the normal white count to be, in round numbers, between 5,000 and 10,000 cells per microliter of blood. He told us that when Gay's count fell below 3,000 per microliter, he would delay prescribing another round of Alkeran and Prednisone until it rose above that level. In practice, he didn't start Gay back on the drugs until her count returned to around 5,000. The count was usually at its highest level during the week she was actually taking the chemotherapy. The Alkeran would then take a heavy toll on the white cells during the first week after she finished taking the drug and leave the counts at the lowest level in the cycle at the beginning of the following week. The white cells would usually begin to build back up again after that. In a later conversation with Roger, he confirmed this cycle. He indicated that each pill of Alkeran generally had its highest impact on the white cells and the malignancy within seven to ten days after taking it. Gay's energy level also coincided with this cycle. It was 83 helpful to understand this so Gay could forecast her reaction to the drug and schedule her activities around it. The hemoglobin carries oxygen to the body's cells. Oxygen is obviously a major component for producing energy for the body and we could often tell when Gay's hemoglobin was down by how peppy or dragged out she felt. It may not have been a very precise measurement, but her energy level and hemoglobin level seemed to correlate fairly well. Her hemoglobin levels before and after chemotherapy followed a pattern that was very similar to that of the white cells. The normal count is between 12.5 and 14.5 grams per deciliter. Dr. River told us that if the count fell below 8.0 he might have to replenish her red cells through a transfusion. The level of platelets is also adversely affected by chemotherapy and we watched this level closely as well. The normal range for them is between 150,000 and 450,000 platelets per microliter. We expected that if Gay's count dropped below 20,000 she would need a transfusion of platelets. We found that Gay's count would be at its highest level during the week immediately following her last dose of drugs. It usually hit its lowest level four weeks after the last dose. Happily Gay didn't require a transfusion of red cells or platelets during this period. Of the three readings, Gay and I were most interested in the white counts for two reasons. They were our best window into the condition of the immune system and because the white counts governed whether she could go back on the chemotherapy on schedule. If the hemoglobin or the platelets were dangerously low, Gay could get more through transfusion and the next regimen of drugs could be taken on schedule. The white cells could not be transfused, however. If the white counts were not up to acceptable levels, we would have to wait for them to recover before resuming the chemo. That delay would give the malignant cells more time to rebound as well. So, we paid close attention to the white count. After we had gotten several weeks worth of readings, we found that it was pretty cumbersome to ruffle through the several sheets of paper to see if there were any trends we could identify. To make that job easier I pulled off all of the counts onto a single chart that showed the readings from each Monday. After another few weeks we decided that to make any meaningful sense out of the numbers, we would have to correlate the counts with the dates Gay took each cycle of chemotherapy. This time it was Gay's turn to be a chart maker. She laid out the data so we could see each cycle separately and as they related to one another. This gave us a view of the blood counts for the weeks immediately following each regimen of drugs that 84 she took. In this way we could track the destructive effect the chemotherapy had on the immune system after each regimen and how long it took for the counts to rebound into an acceptable range. A copy of the chart is in Appendix A. To get a rough view of what progress the chemotherapy was making against the disease, samples of Gay's blood were run through a SMAC test. She had one of these tests just before entering the hospital on January 28 and a second one while there on February 11. She then had one every two months until August 1989 when the interval was shortened to once a month. The two main measurements we followed from this test were of the Total Protein and the Globulin. Globulin is another word for antibodies. It's a type of protein and its level tends to confirm the reading obtained on the Total Protein. The two counts together gave us some idea of the amount of tumor load there was in Gay's bone marrow. I pulled these two counts off of each new set of test results and penciled them in on a home-made chart and then entered the data onto a graph so we could quickly see how the readings from the most recent test compared to the levels in each of the previous tests. By comparing the latest readings with previous ones, we could get a feel for whether the myeloma was gaining ground or the drugs were successfully killing off the malignant cells. A copy of the graph is in Appendix B. The normal range for Total Protein is from 6.0 to 8.5 grams per deciliter and for globulin is 2.0 to 3.5 grams per deciliter. The objective was to get Gay's levels down into the normal ranges. At the least this would signal a significant decrease in the tumor and perhaps mean that the disease was in remission. If the readings fell to normal it would be time to have more specific tests run, ending with another bone marrow biopsy to confirm or deny remission. Gay was able to hold to a cycle of six days of chemotherapy and twenty-one to twenty-four days drug free for the first three cycles. This was a little shorter than the four to six weeks drug-free that Dr. River had predicted. This took us out to early May. Toward the end of this period her face began to puff up from the Prednisone. To counteract this side effect, Dr. River reduced the Prednisone by changing the regimen from five Alkeran pills and three Prednisone for six days to six Alkeran and three Prednisone for five days. During this same time her back and rib pains decreased significantly and she was able to move around with much more ease than she had experienced since the beginning of the year. She stopped using the heating pad at night and we took it back to the place where we had leased it. We were able to have some of our friends over, one or two at a time, but she stayed away from crowds and kept away from 85 anyone who might pass germs to her. She carefully and thankfully began taking up some of her normal activities again. We began to feel some relief. The drugs seemed to be having the desired effect. This presumption appeared to be confirmed by the first SMAC test taken after Gay's release from the hospital. The test was done on April 20 and showed that the Total Protein level had dropped from 12.8 on February 11 to 9.7. The globulin also dropped. It went from 9.8 to 5.8. Both of these readings were still well above the normal range, but they were heading in the right direction. Dr. River told us in our next consultation with him that he considered this a significant movement, but then reminded us that this might not be altogether the best news since a malignancy that goes into remission fast may also come out fast. Now we didn't know whether to be happy, sad or neutral about what the test showed. It was one of many emotional roller coaster rides that Gay and I took together. We found ourselves instinctively taking the optimistic view, however. So, we were guardedly pleased about the direction of both Gay's comfort level and the protein levels, but we were beginning to have concerns about her white counts. They fluctuated within each of the first three cycles, but a clear trend was developing of lower readings at the end of each cycle. We interpreted this to mean that the immune system was taking a beating right along with the malignant cells. It would now be a question of whether the white cells could recover quickly enough to allow another dose of killer drugs to be released into the body to beat the myeloma back further or whether there would have to be a delay. There was always a second question in the back of our minds that we couldn't answer from our charts. Would the malignant cells develop an immunity to the chemotherapy? We really didn't want to think about that. We got our answer to the first question pretty fast. The white cells were not going to recover quickly enough to sustain the desired schedule of chemotherapy. In the fourth and fifth cycles it took six weeks for the white blood cells to rejuvenate enough for Gay to resume the chemotherapy. This took us out to the end of July. On June 20 she had the next SMAC test. It showed both protein readings to be higher. The Total Protein had climbed to 11.2 and the globulin to 7.3. Gay continued to feel comparatively peppy, but the white count and the protein levels were now both going in the wrong direction. The direction of the protein readings reversed themselves, however, in the next SMAC test on August 7. This time the Total Protein decreased to 9.8 and the globulin to 6.2. 86 Gay's recovery time on the sixth round of chemotherapy had run a little over two weeks at the point Gay and I were preparing questions for our regular meeting with Dr. River on August 22. Gay's white count stood at 3,900, the lowest level it had ever reached, and had been trending down for the last three weekly readings. From this it appeared there would be a considerable delay before the chemotherapy could be resumed. We found this alarming and decided to discuss the situation with Dr. River during the meeting. I took the charts we were keeping on the two tests to the meeting and asked him about how he viewed Gay's progress in view of the trends we were seeing. He pointed out that Gay was feeling relatively strong and that the disease wasn't getting any worse. It seemed to still be in a manageable range. We asked if there was another protocol we should be considering that might be more effective. He said that it could take quite awhile for the Alkeran and Prednisone to bring the disease under control, if it was going to do so, and that it was a little early to conclude that this combination was not going to work. He also indicated that other protocols were much harsher and would leave Gay feeling considerably worse than the one she was on. He counseled us to remain on this course for another couple of cycles and then review the progress. We also discussed the bone marrow transplantation procedure. He pointed out that it was a very risky process to go through and that we should carefully assess the risks of failure against the chances of reaching a reasonable objective through transplantation. He pointed out that a reasonable objective with this disease would be to maintain a quality standard of life for as long as possible. At this point he was making it possible for Gay to reach that objective with this protocol. The record books would tell us that cure is not a reasonable expectation with this disease. It hasn't been shown that bone marrow transplantation will change that reality. Gay and I agreed this was a reasonable objective for this disease, but weren't sure it was the right objective for us. This discussion started us thinking seriously about what the objective of treatment really ought to be. What could realistically be accomplished and what risk were we willing to take to reach the goal? This question is easily answered with most illnesses, but not with this one. We had discussed what our objective should be several times during the last several months, but those discussions were really hypothetical because the treatment choice was the same regardless of the objective. Alkeran and Prednisone seemed to be the initial step whether our objective was to hold the disease at its present level, to put it in remission or even if we had the audacity to hope for a cure. But, now if we didn't see some progress against the disease, the treatment modality might have to change and that change would be dictated by our treatment objective. We had to come to grips with this issue. We had to do some clear thinking with our heads, listen carefully to our hearts, and communicate our feelings to one another as honestly 87 and clearly as we knew how. To have the best chance at success we would have to move forward together with a single purpose. The meeting had been very helpful in showing us that in order to make the right decisions from here forward we had to be very clear on what our objective was. Another SMAC test was conducted on September 12 and it showed the Total Protein up again to 10.6 and the globulin following suit at 7.4. At this point Gay's white count had still not recovered from the sixth regimen of chemotherapy completed five weeks earlier and, in fact, had hit a new low of 3,300. A few months earlier we thought there was a good chance that the disease would go slowly into remission. Now we could see that there hadn't been any real progress against the tumor load since the test done on April 20 and that the trend in the readings was slightly up instead of down. Combined with this was the fact that the recovery time for the white blood cells was getting longer. With this background we decided it was time to review the charts with Roger Gingrich and further our discussions about the feasibility of a bone marrow transplant. Gay and I called Dr. River together to review our concerns about the latest test results and to ask if he would set up an appointment. He agreed that would be a wise discussion to have and that he would welcome Roger's input. The meeting was set for 10:00 in the morning on Friday, September 15. We arrived at the Hematology Clinic about 9:50 and found that we were expected. After a few minutes, a nurse showed us to an examining room. We had barely gotten comfortable when a knock came at the door and Tom cautiously stuck his head in the door, not completely sure he had come to the right examining room. His eyes showed definite sign of relief when he saw us and realized he had not broken into the middle of an examination of some stranger. "Hi Sister, Hi Demi, it's good to see you both." We took the next ten minutes to bring him up to date on the latest test results and some of the questions we wanted to ask Roger. Shortly after that Roger came through the door with the same pleasant face and smile we had seen on our earlier visit. "Good morning, Gay. Hello Harry, Tom. I hope I haven't kept you waiting long. Things have been pretty hectic around here already this morning." "Good morning, Roger," Gay and I both said in unison and then chuckled at our little duet. As we all three shook hands with Roger, I continued, "Not at all, we just arrived a few minutes ago." We all took seats very much as we had the first time. Roger pulled the stool out from under the table. This time there were three chairs in 88 the room beside the stool. We figured the last consultation in that room must have had four people so we didn't have to scurry around for another chair as on our first visit. Roger opened the conversation. "Well, Tom it looks like you're the lucky one. Then he stopped and turned to us and said, "You know that Tom is a match for you, don't you, Gay?" "Oh, yes, Tom called me right after he got the results. I think that's wonderful." "It's really very exciting. If you are a candidate for a bone marrow transplant and you decide to do it, you now have a choice between using your own or using Tom's. That's very fortunate. Many people have a very difficult time finding a suitable donor." "That brings to mind a question I've been wondering about ever since our last visit," I said. "How do we know that one person's tissue will match another's, that Tom's is a match for Gay's in this case?" "The first thing to know is that the patient will nearly always experience graft versus host disease or, GVH, when taking someone else's bone marrow. You remember we discussed GVH during your last visit. That's when the immune system produced by the new bone marrow attacks the patient's tissues. Our job is to control the GVH with drugs. The better the match, the better chance we have of being successful. In determining if there is a match, we look at cells from a sample of your blood and zero in on chromosome number six. This region of the cell is known as the Major Histocompatibility Complex or MHC. We try to match the six major elements on this chromosome. If we can match all six we have a perfect match at the MHC. This means that the major elements are a match and, with that degree of compatibility, we have a very good chance of controlling graft versus host disease through medication. If we can match on only five elements we have a lower probability of successfully controlling GVH. If we had a lesser match, we would probably not be able to suppress GVH and we would lose the patient." "So," I said, "Tom and Gay are a match on the six major elements on one chromosome. Are there minor elements of compatibility that might not be a match and give us trouble, or other chromosomes that might not match?" "There are minor elements on the chromosome and of course there are other chromosomes, but we can't test for all of them. We have found from experience, 89 however, that if we can get a match on the major elements on number six we will have the least amount of trouble controlling the GVH." "That helps me get a sense for the risk involved, Roger, thank you." "Sure," he said and then continued as he shifted his position on the stool. "There is another thing we have going for us. We tested both you and Tom for CMV. This is a virus with a long name, Cytomegalovirus. It can cause pneumonia, among other things. Between 60% and 70% of the population carries the virus and the body's natural defenses hold it in check. These people have developed antibodies against it. If a person is going to have a bone marrow transplant, we want to know if they carry it or not. If they don't, then we shouldn't match them with a donor who is a carrier because the virus may spread to the patient when the patient has no natural defenses. We would also have to be sure any blood given that patient didn't have CMV. The good news, Gay, is that Tom doesn't carry CMV and would be a good donor for you." Tom instinctively straightened in his chair, threw out his chest just a little bit and said, "Well, Sister, I'm glad to hear that because I really would like to contribute to your cause if transplant is the route to go." Roger turned his attention toward Gay and asked, "How have you been tolerating the Alkeran and Prednisone, Gay?" "When I first started taking them I had very little reaction, but as time went on I started having some spells of heartburn, headache and diarrhea. I threw up once, but I think that was because I forgot and took the pills before breakfast. Not having any food in my stomach before the medicine got there really upset my stomach. As you can see, I still have lots of hair. I've lost a little, but most of it has stuck with me. I've also gotten a couple of hot flashes at night. All in all, not nearly as bad as we understand it could be. The pain in my back and ribs is much less harsh than it was the last time I saw you, but I still have to take the pain pills for a trip like this. Although I'm feeling better than I was, Harry and I are beginning to wonder if the medication is really making any progress." She then looked over to me to pick up the theme. "Have you been getting copies of Gay's blood test, Roger?" I asked. "I know we have received several, but I don't know if I have the latest ones." 90 I took copies of the charts Gay and I had made from my briefcase as we spoke. "We have charted the results of both the CBC and SMAC blood test and made a graph of the SMAC. Since we're not used to looking at these tests, the charts help us see what's happening. I brought along an extra copy for you." I walked over to Roger and handed the copies to him. "The CBC chart is on top. If you look at the fourth week in each cycle where Gay is drug free you can see the white counts are lower in each fourth week than they were the cycle before. You can also see that lately we have had to lengthen the cycles to give the white count a chance to replenish." As I spoke I pointed to the numbers on the chart so Roger could more quickly see what I was referring to. He studied the CBC chart for a moment longer and said in a low tone, "I see what you mean. What about the protein?" "That's on the next sheet." He turned to the graph of the results of the SMAC test. "This graph shows the Total Protein and Globulin readings from the first one in late January to the last one on September 12. You can see the April 20 results show a substantial response from the previous readings in February. From April to now there has been up and down movement, but the overall trend is now slightly upward. If this is a reasonable indicator of the tumor load it would appear that it has been increasing somewhat since April. That really leads us to a number of critical questions, but let's take them one at a time. The first one is, can we reasonably expect the Alkeran and Prednisone to reduce the tumor load any further than it has now or at least hold it at its present level for an extended period?" "Let me just take a second to spot check the numbers on your charts with the ones I have in Gay's file," Roger said. "I want to make sure the data are the same." He quickly compared the test results in the file he had in front of him with the figures on the two charts and the graph and then said with satisfaction, "It looks like the data you've been using is the same as I've been getting from Dr. River, except I don't have the results from the very latest tests. That's not unusual. It takes a few days for them to get here and in the file." He turned his attention back to the charts and graph, looking at one and then the other with a good deal of care. "First of all," Roger said as he turned back to us, "the charts are a very helpful way to view progress. From what I see here, I would say there is good reason to believe that this protocol is not going to be any more effective in the future than it has been the last few months. The tumor load may very well be doing just what the graph suggests, 91 that is, slowly growing. There is obviously room for interpretation here and others might see it differently, but that's the way I view it." "Are there some alternative protocols that we should be considering?" I asked. "Yes," replied Roger, "I think it's time to be looking elsewhere. Our objective is to reduce the tumor load regardless of whether or not you decide to go for a transplant. I would suggest the next logical step would be to go to VAD." "What's VAD?" asked Gay. "Vincristine, Adriamycin and Dexamethasone, also called Decadron. These are three very powerful drugs. When they are used in combination they can be effective in reducing the tumor load in multiple myeloma where other drugs have failed. The drawback is that they are more likely to give you unpleasant side effects than what your taking now." "What should I expect?" "Many of the same things you could look for with Alkeran and Prednisone except that you're more likely to experience them with VAD. You may have nausea, diarrhea and vomiting from any one of the three. Dexamethasone is a form of Prednisone, a much stronger form. You could have added side effects with this such as blurred vision, depression, swelling of the face, feet or legs, nervousness, sore throat, fever, unusual tiredness and mood changes. Vincristine can cause many of the same things, but also can cause numbness in fingers and toes, joint pain, agitation, mental confusion, hallucinations, skin rash, bloating and chills. Adriamycin can cause reddish urine which some people mistake for bleeding, along with a number of things I've already mentioned. The last two drugs can also cause skin rash and itching, shortness of breath, hair loss, irregular heart beat and burning of the skin if either one drips out of the IV onto the skin." "Wow," exclaimed Gay. "It would be hard for anyone to knowingly subject themselves to all of that, wouldn't it?" "Well, when you list all of the things that could happen it makes it sound worse than it is from a practical point of view. Most people don't have all these effects, but you could run into some of them. For example, older people sometimes have hallucinations and nervous system disorders, but people your age, Gay, generally don't. Also, in a way, you have already been tested with the Alkeran and 92 Prednisone and tolerated the drugs well. From that I would say you will have more trouble with VAD than you're having now, but within reasonable limits." "Why would the Alkeran and Prednisone be so effective in the first two months and then flatten out after that? Could it be because we are having to wait too long for the white blood count to recover before giving the next dose of the drugs or is it likely that the malignant cells are becoming immune to the drugs? Sorry, that was three questions in one." "That's okay. I think you've hit on the two most likely answers. It could be either of those two things or a combination of both. Certainly it's not helpful to have to wait so long before administering another round of the chemotherapy. That does give the malignant cells a better chance to recover. At the same time the cells may be developing an immunity to these drugs." "How do the cells become immune?" I asked. "Alkylating drugs like Alkeran chemically weld the two DNA strands of the malignant cell together with alkaline so they are unable to reproduce through cell division. When the cell tries to divide, it fails and dies in the attempt. The malignant cell has a defense mechanism, however. It will try to secrete a chemical, or repair agent, to release the weld and unlock the DNA strands. If this is successful, the cell can divide normally again. During the time that Gay has been taking Alkeran the malignant cells may have developed a chemical that will do the unlocking." I followed up. "Let me try another tack just to make sure there isn't something there that could make some sense. Is there a way to shorten the wait time before administering another round of Alkeran and Prednisone? We apparently can give Gay transfusions of red blood cells and platelets if either of them get dangerously low, so a slow recovery of them would not have to hold up starting a new cycle of drugs. That leaves the white cells. If we could build them up through transfusion or in some other way, couldn't we cut out the delay in giving the chemotherapy? We have been told that this isn't feasible. I'm asking the question because I don't want to carelessly leave a logical stone unturned." "Your logic is right on track, Harry. Unfortunately, we have not been successful in transfusing white blood cells in high enough numbers to maintain normal levels in the body. One of the reasons is that they have a very short life span. It's about four 93 to six hours. I wish we could find a way to do it. It might open up some new possibilities for treatment." "Let's go back to the immunity possibility then for a minute. If the myeloma cells have, in deed, developed an immunity to Alkeran would that immunity carry over to VAD? Or, a slightly different question; is there reason to think that since it developed an immunity against one drug, it could just as easily do it against another?" "Alkeran and VAD work very differently against the myeloma cells so if the cells have developed an immunity to Alkeran," it would not carry over automatically to VAD. The fact that the malignancy has not succumbed to one combination of drugs does show us that we aren't dealing with a pushover. We would calculate our chances for success with VAD to be less than if we were trying it without this advance knowledge of the disease's strength." "What do you think the chances are for success?" "VAD is often used as a secondary treatment, following the use of some other protocol. In cases where it is used after Alkeran and Prednisone have already been tried and are no longer effective, as in your case, Gay, there is about a 60% chance that we could get at least a 25% reduction in the tumor. There is only about a 10% to 15% chance that we would get a complete response and put the disease in remission." "How much of a reduction in the tumor would you be looking for before you would feel that the risk of a bone marrow transplant would make sense for Gay?" The study of the fourteen multiple myeloma patients in Europe who had bone marrow transplants indicated that some had the transplants while they still had an active tumor. I assumed from the study that it might be feasible to perform the procedure for Gay even if she was not able to get the disease all the way into remission. I asked this question with a good deal of anticipation, however, because the answer would give us the minimum goal we would have to achieve if Gay wanted to have a transplant. It would also give us a better understanding of how difficult it might be to be successful." Roger thought for a moment and responded. "I would like to see at least a 50% reduction from where we are today. It appears that the tumor is now building up and although the VAD may be the right protocol to use we don't want to let the 94 tumor get any bigger than it is right now so I would suggest moving to the new protocol as soon as we can. "We can do a bone marrow transplant even if there is some tumor load. We would hope that the high doses of chemotherapy and radiation we give just before transplant would kill all of the malignant cells that are left. The more cells there are, however, the harder it is to accomplish that very important task. Getting the tumor to as small a size as possible will be the goal." "Are there other protocols we can go to if the VAD doesn't work?" I asked. "From a practical stand point there may be no other chemical treatment after VAD. There are other things we can try, but if VAD doesn't work we may have run out of reasonable chemical options. You won't be any worse off than you are today if you give VAD a try and it doesn't work because you can always return to the Alkeran and Prednisone." "If we did that, or just stayed on the Alkeran and Prednisone without trying the VAD, how long do you think we would be successful in maintaining the current level of the tumor?" "That's a tough one to answer with any degree of certainty. I would guess two to three years" "I know that's not an easy question and I appreciate your reaching for that answer. You are in a better position than we are to estimate it and it is important for us to have an order of magnitude in judging the trade offs involved in the decision of whether to go for a transplant." Roger then reviewed the bone marrow transplant process again to make sure we understood it. We thanked him once again for his patience with all of our questions and departed. Tom was not able to have lunch with us so Gay and I had a quick bite and headed the car eastward for home. As we pulled onto I-80, Gay adjusted her seat to give her back maximum support and then asked, "What do you think of all that?" "I think the decision of whether to go on VAD or stay with Alkeran and Prednisone comes down to a more straightforward set of trade offs than I thought it might. This may be an over simplification, but it looks like it is a trade between going on VAD with its greater chance of reducing the tumor load, but accepting the 95 possibility of harsher side effects than you have been experiencing, balanced against staying with Alkeran and Prednisone with the lesser side effects, but accepting that the tumor may stay the same in the short run, but will probably grow over time. Whether it stays the same or it grows, it would eliminate the option of having a bone marrow transplant." Gay added quickly, "I agree, and since I'm leaning toward having the transplant, I have to keep that option open. So, I should switch to the VAD. Is that where you were headed before I interrupted you?" "Yes it was, but I'm glad you said it first. I think switching makes the most sense. I probably wouldn't feel this way if you were twenty years older and might not be able to tolerate the VAD as well and would not be a candidate for a bone marrow transplant. But, your case is quite different. I think you have shown you can handle the Alkeran and Prednisone fairly well and, although I don't expect the VAD to be a picnic, I would guess you will do relatively well there, too. If that proves not to be the case then you can always stop at any time and go back to where you are today." "I believe that's what Roger thinks, too," added Gay. I don't know if Dr. River will feel the same way. One of us should call him and tell him what we've decided. I guess that should be me. We should be back early enough this afternoon. I'll call him as soon as we get home." "The nice part about this decision," I said, "is that it makes sense whether you want to have a bone marrow transplant or not. We don't have to commit to a specific treatment objective to make this decision. It works either way. Assuming that the VAD reduces the tumor load by at least 50%, the next decision will be pro or anti transplant. That decision will take a commitment to a specific objective." "The last time we were in Iowa City and learned all the risks that go with a bone marrow transplant, I said I thought it would be very difficult to choose a transplant if the multiple myeloma went easily into remission. Well, it didn't do that, so we have to think some more." "I think the disease is telling us, in a not so subtle way, that it is pretty tough and all we have heard about it coming out of remission every time it goes in is undoubtedly true. That's a very useful message for us to understand." 96 Gay rejoined quickly, "It certainly is and that's probably the major reason I find myself leaning toward a transplant whereas before I wasn't." "If we go for transplant it should be because we are going for a cure and that we are willing to risk a shorter life span for you if the transplant doesn't work. That makes for a tough decision. It has to be weighed against the best guess of how long you will live just using the chemotherapy. From all that we have heard, do you have a feel for how long that might be? No one wants to be pinned down on that one, but Roger did give us a range." "I've been thinking four years at the most," Gay said. "The way this is going, however, I'm more inclined to agree with Roger that it could be three to four. What do you think?" "This is one of those cases where I try to reason out an answer and failing to arrive at any solid figure, I let my mind wander over the information subconsciously to see if it has any better luck without my help. It often does. From all we've read and heard, my analysis gets me no closer than a, range of two-to-six years. I don't feel either extreme is a good number. My gut feeling is that three is probably what we should be using for making decisions, but I wouldn't quarrel with four. We've heard anecdotes about different people surviving eight years, ten years, and so on, but we really don't know enough about any of the cases to judge how close their situation comes to yours. Besides, they aren't statistics, they're one case here and another there. I must admit I tend to discount them for anything, but wishing and praying. It looks like we have hit within the same range." "I had a feeling we would," Gay said, " but go on with your thought. I want to hear the rest of it." "To boil it down, I think it is a balance between the chance for a cure, with the shortened life expectancy the transplant process might bring, against possibly three or four years of life at about the level of quality you've had the last few months, but diminishing toward the end of that time." I had to stop talking for a moment. The reality of what I was saying hit me on the feeling level and quick wave of emotion swept over me and then subsided. I took a deep breath and continued. "There are two other things that we need to know to complete the equation. Which type of transplant you would want and what the chances are of your surviving it. I think we probably have enough information on the question of which kind to make a preliminary choice and we can ask Roger the answer to the second question." 97 "Why do you say preliminary choice on the type of transplant?" asked Gay. "What do we need to know that we don't know now?" "Well, I was only thinking that Roger might tell us that the allogeneic is much more risky than the autologous. If we had opted for taking Tom's bone marrow that might force us to rethink the decision. That's all." "I think that's true," said Gay, "but do you think we are going to find out there is a big difference?" "Now that I think about it, I suspect the main difference is in the fact that there is a strong chance you will be hit with graft versus host disease if you take Tom's marrow. If you take your own bone marrow, that risk vanishes, but there is a definite chance that the multiple myeloma will come back into your body with your marrow." I turned to Gay and gave her a sheepish smile and then continued. "I'm glad you asked me that question. I think we already have a pretty good understanding of the answer. Roger seemed pretty confident that he could control the GVH with drugs as long as Tom is a match on all six elements, and he is. On the other hand, we haven't heard or read anything that convinces me that you wouldn't be giving yourself the disease all over again if you used your own marrow." "So, what your saying is that it makes more sense to go with Tom's marrow. That's interesting because ever since Tom told me he was a match, I have simply assumed that I would use his bone marrow if I did a transplant at all." "Now that you mention it, I think I have too," I said. "Well, now we have a little logic to back up the intuition. It's nice when both give you the same answer." That leaves us with only one question for Roger, then. What are my chances of surviving a transplant with Tom as the donor?" "I think that says it, Gay. I'm content to leave the question of the treatment objective to another time since the decision to move to the VAD doesn't depend on where we come out on that. I think I know what you're thinking already. I'm coming to that point of view too, but I could use a little more incubation time." Gay had already closed her eyes and it was apparent that she had settled things in her mind for now. We were pretty close to our turn off at the Northwest Davenport 98 ramp, so she had very little time to rest. As I took the ramp I realized that the last hour had gone by very quickly. As soon as we arrived home, Gay phoned Dr. River's office. He had been called out of the office, but would ring her back the next day if it was important, otherwise on Monday. Gay said she didn't want to bother him on the weekend and that it could wait until Monday. When I returned home from the office on Monday night, Gay was waiting for me. "Is that you, Dear?" she called out as I walked back into the den. Just in those few words I could tell that something was bothering her, perhaps something that had happened during the day. "It sure is", I responded as I rounded the corner from the hall. "How did your day go?" I said as I set my briefcase down in its usual place beside the desk and crossed to her chair to give her a kiss. Gay answered, "Dr. River called me back today as promised and I told him about our visit with Roger. I also told him that you and I thought it would be best for me to change over to VAD." "How did he respond?" "He thought that would be a mistake. He feels strongly that we are controlling the disease with what we're doing now and that I should turn to VAD only at the point when the disease goes out of control. He told me that VAD could give me a lot of violent, awful side effects. He pointed out that the Alkeran and Prednisone had been pretty gentle to me, but that I couldn't expect anything like that from the VAD. They are much stronger drugs. He also said there was still a good chance that the Alkeran and Prednisone would bring the tumor load down, it might simply take more time. He just feels we're on the right course now." "I guess that's not surprising. That is much the same position he took with us the last time we saw him. It sounds as if he came on pretty strong with you, even so. How are you leaning?" "I've been thinking about it all afternoon waiting for you to come home. He was quite convincing over the phone. I also thought of Ivy. Dr. River gave her VAD the last time she was in the hospital. It gave her hallucinations. She was badly disoriented. She didn't feel she was in control of her mind or her body and she hated that. She didn't know people who came to see her. Besides that, it made her 99 very sick. Ivy is fifteen years older than I am so I don't know that all of that would happen to me, but it does strengthen Dr. River's argument. If the Alkeran and Prednisone could work with a little added time it would be a more humane way to travel." "Do you know what you want to do or would you like to talk about it some more, or just sleep on it a few nights?" "This is difficult. I've been running it through my head all afternoon. I thought I knew what I wanted before the conversation with Dr. River. Now I feel it may make sense to give this protocol one more chance to be a hero. I think there will still be time to change to VAD if it doesn't work. I'm leaning toward going back on the Alkeran and Prednisone for one more try, but I truly haven't completely made up my mind. "After I finished talking to Dr. River, I just sat here for a long while thinking about what he had said and trying to match it up with what Roger said. Then I remembered the notes you took last Friday and reread those. I was afraid you might still have them in your briefcase, but I found them in the file with all the rest of your notes. Roger gave us a pretty good run down on what the drugs might do to me and reading your notes on that part of the conversation made me shudder a bit. I interrupted. "He ran through the side effects pretty fast and I'm not sure I got all he told us." "From what I remember, I think you got most of it. Anyway, after I read your notes I pulled out that book we got that describes all the different cancer-killing drugs and read about the three drugs that make up VAD. As you would expect, the book is more complete in listing the side effects than either of the two doctors. Frankly, if they had run down everything the book says can happen to you when you take these drugs, there wouldn't be time to talk about anything else. Well, the book lists more terrible things than your notes which made me shudder again. But, the trouble with what the doctors tell you and what you read is that you don't know just how the drug will affect you. If you really thought that you were going to have all of the side effects they list, you would never let one of those pills pass through your mouth. Well, I sat here awhile longer almost in tears trying to sort out how I felt about it and decided to call Roger and talk to him about it. What a surprise to find him in his office. 100 "What did he say? Was he able to give you any help?" I asked. "He said just about the same thing he told us on Friday. In fact, it's all in your notes. He said that many people experience the most common side effects like nausea, diarrhea, vomiting and hair loss, but relatively few have the really awful ones like hallucinations and mental problems. Older people are more vulnerable to those problems. He also reminded me that I had done well on the Alkeran and Prednisone and he felt this was a good sign that I would tolerate the VAD. It would probably be rougher than now, but I would handle it okay." "Did that help put the issue in better balance for you?" "It really did, but I still find that I'm very apprehensive about trying the VAD. The confidence I felt over the weekend, that VAD was the way to go, has slipped." Gay paused for a minute and then looked up at me. She was as pretty as ever, sitting in her favorite chair, but her usual smile was absent and her brow was furrowed. It was hard for me to watch her fighting through this decision. She broke the short silence, "I've been doing a lot of talking. What do you think of this dilemma?" I thought for a minute about how I should respond. She knew all of the arguments for and against going on VAD as well as I did so there was no sense in my trotting all of them out for us to review. She had also been the one to have the conversation with Dr. River and was in a much better position than I to make the judgment. I expressed those feelings. "You know the pros and cons as well as I do and you had the advantage of the conversation with Dr. River. The protein in your blood has been running a fairly flat, zigzag course since April. Dr. River argues that it may very well improve on the next cycle if you keep going as you are, or at least it won't get worse. I'm not confident it will get better. I'm also not convinced that it will get terribly worse with another round of Alkeran and Prednisone. It could hold to the same course it's been on. After having said all that, I think it's more important that you are comfortable and positive about making the switch to VAD than it is to avoid the delay of another cycle." I was still standing by her chair and she reached up and gave my hand a squeeze. "I knew you would understand." 101 That brought a smile to my face. Then I remembered her morning blood test. "What were the results of your CBC test this morning? Are your white counts high enough to go on any chemotherapy now?" I asked. Gay shifted in her chair and pointed me toward the pile of papers on her side of our partner's desk a few feet away. "The results are on the desk. I think the counts are okay for me to go ahead with the chemo. It's important to make the right decision. I think I'll give myself another week and live with it for awhile. If I made the decision today, I would have to force it and I don't think that's smart. I'll know in a week. In any case, if we don't see improvement in the next cycle I will switch to the VAD. One more week won't kill me." Then she looked at me with a mischievous grin and said with emphasis, "I hope." The CBC test done the following Monday morning showed Gay's white count to be up in the normal range for the second week. She had listened to her feeling all week and now decided to give the Alkeran and Prednisone one more try, but told Dr. River if there was no improvement she wanted to change to VAD. He said he thought that was a reasonable strategy even though we suspected he didn't fullY agree with it. So, Gay started the next cycle of chemotherapy on September 26. On October 16 she had another SMAC test. The Total Protein had dropped to 9.9 and the globulin to 6.5. These results were somewhat encouraging because the readings were in the right direction. We couldn't get too excited about them, however, since the results could be read as no more than a continuation of the up and down pattern already set. It certainly wasn't evidence that the decision to stay on the Alkeran and Prednisone was clearly the right one, but it wasn't a disaster either. Progress on the white count was another story. The count had dropped over the three weeks since she took the last chemotherapy and stood at a low 3,400 on this same day. The counts had never been so low at this point in the cycle and we were very concerned that the pattern of lower counts and longer delays in getting back on the chemotherapy was continuing. By this time Gay had had another four weeks to let the question of switching to VAD settle in her mind. She found herself becoming less afraid of the possible side effects of VAD. At the same time she was getting more comfortable with the thought of having a bone marrow transplant. The results of the blood tests were showing us that even if the Alkeran and Prednisone might, in time, be effective against the malignancy this combination of drugs was giving the white cells such a battering that it was becoming obvious to us that a change was needed if Gay was to keep the option of a transplant open. 102 If the myeloma cells were becoming immune to the Alkeran, the only recourse was to try something different or give up the thought of a transplant and accept the reality of an early death. Even if we assumed that the myeloma cells were not becoming immune to the Alkeran, the delay time between doses of chemotherapy was just getting too long. We felt the malignancy was having time to recover right along with the white cells. Again the answer seemed to be to switch. Now Gay's feelings and my logic were telling us the same thing. It was time for a change. 103 CHAPTER VII THE SECOND ATTEMPT V A D Gay once again called Dr. River and explained our feelings. This time it appeared he felt Gay fully understood the possible consequences of this decision and he agreed it was a reasonable course to take. Marsha put us down for an appointment at 3:30 on October 24 so he could explain what had to be done before she could begin the VAD. Gay and I drove into the parking lot of the medical office building where Dr. River had his office nearly at the same time. She was coming from home and I from the office. We crossed to the building, up the elevator to the Third floor and left to his office. Marsha greeted us with her normal, good, natured smile. When she smiles her whole face lights up so you feel she is really glad to see you; a good asset to have greeting people in a doctor's office. You can't help smiling back. We chatted with her about Cameron and her son, Brian and how they were doing on the North High football team this season. Then Dr. River motioned to us from the inner door that he was ready to see us. We followed him down the hall to his office. They had just recently moved into these quarters and were still deciding on some of the decorations, like curtains. One thing had been settled by his staff, however. They were going to hang some of Dr. River's artistic photographs on the walls. Photography was his favorite hobby and he had some very well-done shots of a variety of subjects. I thought they deserved to be shown off. We stopped to admire a couple of them that were on the floor leaning up against the wall waiting to be hung. Dr. River retraced his steps to explain where and how they were taken and what he had in mind at the time. I found this of particular interest because over the years I had enjoyed photography and had taken a lot of pictures documenting our lives as the kids were growing up. After admiring his work we continued into his office and all took seats. Dr. River started the conversation. "Well, Mrs. Hoyt, you've decided to go on VAD. I'm convinced you've thought this out carefully and understand the possible side effects. If I weren't, I'd still try to talk you out of it. As I told you on the phone, these drugs are a lot rougher than what you're taking now, but you know that, so I'm ready to agree we should give it a try and hope to knock this thing in the teeth. Before we 104 get to the process we have to use to give you the VAD, do you have any questions about the drug?" "No," said Gay, "I think between what you and Dr. Gingrich have told us and from what we've read, I'm ready to go." "That's fine. Let me give you a little advice, though, and I want you to remember it. You have probably never been really selfish in your life, but while you're on these drugs you must put yourself first. I have known you long enough to realize that will be difficult to do. It runs counter to your nature, but you are going to have to do what is right for you and ask others to accommodate." He paused and took a hard look at Gay to emphasize his point. She nodded her understanding and he continued. "You may know something about how we administer VAD, but I'll go through the process from the beginning to make sure you have it all. You can take the Dexamethasone in pill form, so that's nothing new. The other two drugs, Vincristine and Adriamycin, have to be taken intravenously. These chemicals can break down the tissues in the veins if they are run in too fast or in a concentrated form so we pump them in gradually and, in your case, we'll do it over a four day period. You'll take the pills over the same four days you're on the pump. Then stop the pills for three days and on again for four more days, then off for three and on for four. Then off the pills until you start the other two drugs again with the pump. Don't worry about trying to remember all of that. I'll have it written down for you when the time comes. "We have found the easiest way to administer the two intravenous drugs is through an Infuse-a-port. Do you know what that is?" "I don't think I do," answered Gay. I knew I didn't and shook my head as Gay shook hers. "It's a small ridged plastic disc about the size of a half dollar. You may not even remember what a half dollar looks like any more, now that I think of it. It's been a long time since I've seen one. Anyway, the disc is hollow and has a slightly raised center port made of a self-sealing rubber material. The material can be punctured many times with needles and reseal every time. This disc is placed completely under the skin of your chest so it is hidden from view and so that it is less likely to become infected than one that sticks out through the skin. There is a narrow flexible tube attached to the base of the disc. That tube is fed into a vein that leads 105 to the heart. When the Infuse-a-port is in place, the chemicals can be injected into the disc through the port. From there they run through the tube, into the vein and on to the heart. From the heart they're quickly disbursed throughout the body. The cancer Center has a good booklet put out by the manufacturer that will give you more information. I suggest you pick that up." "What's involved in having the Infuse-a-port put in?" I asked. He acknowledged the question and then turned to Gay and said, "A surgeon will first give you a local anesthetic and then make an incision about two inches long, probably on the right side of your chest just above the breast. He will then make an opening under the skin just large enough to hold the port. He fishes the tube into a vein and places the disc in the space he has made for it and then sews up the incision. The whole process will take about twenty minutes. The incision will be a little tender for awhile, but it will heal pretty fast." "After I get the port, how do I get the chemotherapy?" asked Gay. "You can have it done across the street at St. Lukes Hospital as an outpatient." The mention of St. Lukes jogged my memory. "You've recently been appointed as head of Oncology at the hospital, haven't you? Congratulations. That's quite an honor, but I suspect a lot of extra work as well." "Yes, I have, and thank you. It does mean a few extra hours, but I'm enjoying the challenge." He paused for a moment to remember where he was in his explanation and then continued. "Go to the Cancer Center in the basement and ask for Sue or Ronda. I'll tell them to expect you. Either of them can set you up with a schedule that is convenient for you and will fit in with the Center's routine. They will give you a small pump with a narrow tube attached that will carry the drugs from the pump to the port. They will also give you a belt. Most people just wear the pump on the belt around their waist during the day and put it on the bedside table at night. You can wear the pump under your clothes if they are loose enough, otherwise on the outside. You can do whatever works best for you. "They will fill the pump with the chemotherapy and set the pump speed control to run the liquid into the port over twenty-four hours. They will place a needle through your skin and into the port and then attach the tube to the needle. The needle will be fastened in place with tape so it won't come out of the port. You will then come back to the Cancer Center each day at about the same time to have the 106 pump refilled for another twenty- four hours. You'll do that for four days. You might want to start the cycle sometime on Monday morning and end it the same time on the following Friday. After the four days Sue or Ronda will remove the needle from the port and take the pump until you need it for the next cycle." "How much wait time is there in between times of being hooked up to the pump?" I asked. "You'll be on the pump four days. The wait time will be the three days remaining in that week plus three full weeks, so about three and a half weeks in between taking the intravenous drugs." "When should I start this new regimen?" Gay asked. "I looked at your CBC test from yesterday just awhile ago and it shows the white count are still quite low. We can start as soon as that comes up to a safer level. We'll continue the CBC test every week while your on the VAD, Mrs. Hoyt." "How should I make arrangements to have the Infuse-a-port put in?" asked Gay. "Marsha can set up a time and give you a call. If you have some preferences, why don't you let her know on the way out or give her a call." We chatted for a short while longer about some of the photographs Dr. River had in his private office, then thanked him for his thorough explanation and went to the outer office to discuss a time to have the Infuse-a-port put in place with Marsha. The next stop was home. The decision to go to the VAD was now confirmed and the wheels were in motion to make it happen. Both Gay and I were relieved to have that behind us. We now had to wait for her white count to recover from the last round of Alkeran and Prednisone. That night Dr. Burns called. We had phoned him two days earlier to get his opinion on our direction and strategy. Changing medication was certainly an important step to take, but having a bone marrow transplant was a decision with a lot more riding on it. We wanted to be sure when we finally arrived at the juncture where a decision had to be made that we had all of the facts and expert opinions we needed to come up with the answer that was right for Gay. Dr. Burns had been out of town and was now returning our call. I answered the phone and indicated to Gay who it was. She sat down at the desk and picked up the extension phone. Together we reviewed the results of Gay's blood tests while on the Alkeran and Prednisone and 107 the decision to begin taking VAD. We then told him that one of the main reasons for switching to VAD was to try to reduce the tumor enough for Gay to have a bone marrow transplant, if she chose to take that route. We also indicated we understood there were substantial risks involved, but wanted his opinion on what gains might reasonably be achieved. He first said he thought the VAD decision was sound. He also discussed some of the aspects of transplantation, both to add to our knowledge and to see how much we had absorbed since our meeting with him. Then he made what we considered to be a very significant statement. "You basically have two ways to go. You can stay on the Alkeran and Prednisone and be reasonably comfortable for some period or you can try to reduce the tumor as much as you can and have a bone marrow transplant. As you know, we don't know of a cure for multiple myeloma, but, in terms of today's technology, if there is a cure, it's a bone marrow transplant." Gay and I had come to the same conclusion, but this was the first time we could remember hearing it from someone in the field. The next SMAC test came on November 9. Gay had a CBC test done that same day. The SMAC test showed a sharp increase in the protein levels. The Total Protein was at 11.4 and the Globulin at 8.0. These levels were close to the ones we saw in the first SMAC test run in January. Gay's white count was 4,300, still too low to consider further chemotherapy. Marsha arranged an appointment for the Infuse-a-port to be installed on November 14. I drove Gay to the outpatient surgical facility that morning. I was able to stay with her while she checked in, answered the endless stream of questions that nurses are required by some hallowed laws to ask and document on a multi-paged form on a clip board, changed into a hospital gown and stretched out on a table in a small staging room. Linda Wagner arrived at about this time to keep Gay company and to drive her home when she was finished. We knew I was not going to be able to stay with Gay during the procedure because of a longstanding conflict in my schedule. I was very concerned about that and had suggested that the appointment be changed to a time when I could be with her the entire time, but she assured me that this was not going to be a troublesome procedure for her. As I reluctantly departed, Gay and Linda began a chat that I suspect easily lasted until the doctor arrived. That evening, in the quiet of our den, she explained to me how it went. "After you left, Linda and I talked about the kids, but we barely got started when the surgeon came in the room. His name was Dr. Vitello. I don't think you have met him. He explained the procedure to me before we began. It was the same thing Dr. River told us during our last visit. Then a nurse came in and gave me a shot of Valium. By the time they wheeled me into the operating room I was very sleepy, but I 108 remember the doctor telling me he was giving me a local anesthetic. I fell asleep after that and have no recollection of anything until I woke up in the room where you left me and found Linda patiently waiting for me to rejoin the world." She chuckled a little and said, "Having the Infuse-a-port put in while I was asleep suited me just fine. Shannon joined us at the hospital after her morning classes and we all went out for a bite of lunch. I really didn't eat much, but they sure did." Because of the high protein readings on November 9, another SMAC test was run two weeks later with worse results. The Total Protein had climbed to 12.8 and the Globulin to 9.6. These essentially equaled the highest readings we had experienced so far. If the test was to be trusted and if the protein level was truly indicative of the size of the tumor, the tumor load was growing aggressively. This made us even more certain that the decision to switch to the VAD was the right one. The Infuse a-port was in place and Gay was mentally and emotionally ready for the next step. Gay's white count wasn't as ready as she was, however. It remained below the normal mark for another two weeks. On November 22 it rose to 5,900 and she started the VAD the following Monday. Gay and I drove over to St. Lukes around 11:00 that Monday morning. Gay had gone over to the Cancer Center two weeks before to meet Sue and Ronda and took an instant liking to both of them. She had a positive attitude about this new mechanism for delivering the drugs to her body and these two reinforced it. They showed her one of the pumps she would use and gave her an excellent explanation of how it and the Infuse-a-port worked. They also agreed that the best schedule would be for her to take the drugs using the pump starting around noon on Mondays and finishing around noon the following Friday. That would mean she would be off the pump for the week ends. When we arrived, both Sue and Ronda were there and greeted us as we came in. Gay introduced me. Sue had everything ready to go and asked Gay to sit in a large recliner-type chair and invited me to sit on one side of her while she worked on the other. Gay opened the top of her blouse far enough to expose the Infuse-a-port. Sue disinfected the area and then inserted a needle into the port and bent it over until it lay flush with the skin. She then taped the needle in place. The needle already had a narrow tube connected to it which Gay fished under her blouse and handed the end back to Sue. She took the end and fastened it to the top of the pump. She took a plastic reservoir that was already filled with the right amount of the two drugs and connected it to the bottom of the pump. Then she showed us how she programed the pump so that it would be finished running the drugs into Gay's vein by the next day at this same time. She showed Gay how to shut the pump off if 109 anything went wrong and to close the tube to keep blood from backing out of the Infuse-a-port if she did have to turn off the pump. The pump had a window with a digital readout that indicated how much liquid was left in the reservoir at any time. Sue instructed Gay to return to the Cancer Center the next day at the same time, but to make sure she was on her way by the time the pump's readout got to three. The pump would automatically turn itself off when the liquid ran out, but to be on the safe side Sue wanted Gay to be back in the Center before the pump ran dry. She said that when Gay came in the next day, she would just put another reservoir on the pump filled with a fresh batch of the drugs. Sue placed the pump into a vinyl case, attached the case to a belt and handed the assembled packet to Gay. Gay slipped the belt around her waist, buttoned her blouse and we were ready to go. The entire process took only about ten minutes. As we left the hospital, we felt we were now traveling down a new road with new promise and we were excited at the prospect. We understood that it could be a much less comfortable way, but it held hope for the future and that made it worth pursuing. The question of whether Gay should go on the VAD had occupied a good deal of our mental and emotional capacity for some time, but there was a secondary concern playing in the background. One of our ultimate objectives in our overall approach was to fill in the lytic holes left in Gay's bones by the disease and to bring them back to their former strength. We knew from various articles on osteoporosis that women's bones could weaken when they reached menopause and the production of female hormones, particularly estrogen, stopped. We also knew that, under some circumstances, estrogen was prescribed to slow bone loss. The early doses of Alkeran and Prednisone had stopped her menstrual cycle long since and that lead us to question if Gay was still producing estrogen and if not should she be starting estrogen replacement therapy. Gay had asked the three oncology doctors about this, but none of them had an answer. They were understandably more concerned with treating the disease itself. So were we, but if there was a way to bolster the bone replacement process early on we wanted to get started with it. With all this in mind Gay made an appointment with her gynecologist, Dr. Johanna Whalen, the day after starting the VAD. In preparation for the meeting she had blood drawn for tests to determine the condition of her ovaries. When Gay arrived for the appointment, Dr. Whalen told her that the tests showed her ovaries had completely shut down her hormone production, throwing her into an early menopause. This was probably caused by the chemotherapy, but the drugs may have just hastened what nature was bringing on naturally. Whatever the cause, 110 there was no estrogen production. Gay told her that she had had migraine headaches most of her life, but that they had gone away shortly after starting the chemotherapy. The two of them felt the headaches were probably indirectly caused by the hormones and when the production of hormones stopped so did the headaches. Gay knew this had happened with other women when they began menopause and was concerned that, while estrogen replacement therapy might help her bones it might also bring back the headaches. Dr. Whalen agreed this might be the result, but recommended Gay try a low dosage of estrogen replacement to see how it went. It might help the bones and if it brought on the headaches, she could stop. Gay agreed and started a regimen that day. It consisted of taking twenty milligrams of estrogen in tablet form for the first fifteen days of the month and then taking estrogen with progestin for the following ten days, then drug free for the rest of the month. Progestin is a synthetic form of progesterone, another female hormone. Gay was very pleased that night as she told me of her discussion with Dr. Whalen. We were now on our way to addressing a question we had wondered about for nearly nine months. The first three days of Gay's taking VAD went well. There were no side effects that were any worse than the Alkeran and Prednisone. On Thursday night, her last night on the VAD, I woke up around 2:00 in the morning and found that Gay was not in bed. I called out softly for her and heard her answer from her chair in the den. I walked the few feet into the den and asked, "Are you all right, Dear?" "Oh," she said, "I started having one of the worst cases of heartburn I've ever experienced about an hour ago. Acid came up in my throat and really burned. I thought I was going to be sick. Sitting up helps, but it doesn't completely get rid of it. I haven't been able to get back to sleep, either." "Would taking some kind of antacid calm it down?" I asked. "I'll get you some if you think it would." "I took some when I got up, but I could take some more. The bottle is on the sink. I'm not sure it helped, but it didn't hurt either. Anything is worth a try." I got the bottle and Gay took a drink from it. She didn't bother with a spoon. "Go back to bed, Honey. You have a big day tomorrow and there's no sense in both of us losing sleep." This was the first of many nights that Gay would be up with gastric juices rising in her throat during the period she was taking VAD. The next night she went to bed 111 with two pillows propping her up in a half sitting position. We were hoping that gravity would work in her favor by keeping the juices down in her stomach instead of in her throat. It helped some, but not enough to allow for any degree of comfort or sleep. Many nights she would have to get out of bed and sit in her chair. The only positive outcome we could find out of this was that she finished a number of good books. To add a bit more spice to her life, diarrhea was also an unwanted companion during this time. After six straight days of this we put in a call to Roger. He called back that night. We brought him up to date on starting the VAD and estrogen and then told him about the heart burn and diarrhea. Also told him that Gay had been feeling progressively more dragged out from the time she started on the VAD." "Are you doing anything to relieve the diarrhea?" he asked Gay replied, "I've been taking lomotil and that has been helping, but not putting me back to normal." "I'm not sure we can or should try to stop it altogether or we may end up making you terribly constipated. I'd keep taking the lomotil as long as its working reasonably well. "The diarrhea and the heartburn is probably being caused by the Dexamethasone, the steroid. The first thing I would suggest for the heartburn," he said, "is to prop your upper body up to about a fifteen degree angle when you go to bed. That should help keep the acid down." "Gay has been doing that. It has given only marginal help," I replied. "Have you taken any antacid for the heart burn?" "Yes," answered Gay, "a ton of it. I've tried both Maalox and Mylanta. They gives me only a little relief. Earlier in the week I was discussing this with my brother Tom and he prescribed Carafate. I have taken that, too. It was of some help, but the heartburn is still very much there." "The Carafate works by coating the stomach and esophagus. The other two should also help coat the stomach and neutralize the acid. I would suggest you continue with those, but there are two other medications we can try. One is Zantac and the other is Tagamet." He was silent for a moment trying to decide between the two 112 and then continued. "I think we should start with Zantac. It works by reducing the production of acid that comes into the stomach rather than neutralizing what's already there. It should give you some help. If you'd like I'll suggest to Dr. River that he prescribe some for you tomorrow. If that doesn't work, please let me know." "Yes, please," Gay said, "I would appreciate your calling Dr. River." We took advantage of having Roger on the phone to ask some other questions unrelated to the heartburn. "After Gay goes through the four days on the pump taking the VAD, how long should it take to have its maximum effect on the immune system and on the myeloma cells?" I asked. "It should have its peak effect against the immune system in about fourteen days after Gay stops taking the drug. The maximum impact against the malignancy should come after about thirty days." "You gave us that same information about Alkeran and Prednisone, and it helped us explain why Gay was feeling the way she did at different points in the cycle. I expect it will help in the same way with VAD. It may allow us to forecast the heartburn and give some time to guard against it or at least schedule activities around it." "One nice thing we have found about VAD," Roger offered, "is that in spite of all of the not-so-nice things it can do to the body, it usually results in less destruction to the immune system and a higher impact on the malignant cells." "How long do you think it will be before we can tell if these drugs are going to be effective, Roger?" I asked. "I'd say we should give them two cycles and then review what Gay's response has been. If the response is good, we'll just keep going. If its not so good, that will be the time to consider other alternatives based on just what your reaction has been." "One more question, Roger," said Gay. "I've been wondering if I should get a flu shot. With my inability to fight off bugs that might come along, would it give me a bit more protection? What do you think?" "That's an interesting question. Some would argue that the chemotherapy would blunt much of the effect of the shot, but I think it would still be worth doing. I'd 113 suggest you wait until next week when you're feeling stronger, but I would say to go ahead." We thanked Roger once again for his help and hung up the phone with a plan for the heart burn. The Zantac did give Gay more relief than anything she had tried and she was able to get some rest at night. The heartburn still persisted, but in a milder form. There was no question, however, that the VAD was an energy thief. The lack of sleep and the effect of the drugs kept Gay feeling very tired most of the period she was on the drugs. In her words she "sat around a lot." The pattern of Gay's white count from week to week on the VAD was quite different than under the Alkeran and Prednisone. The first reading was taken three days after she started the VAD. It showed a count of 7300 and the next week it was 7,000. This was the highest the white count had risen since mid-April, with the exception of one reading in September. We figured the Dexamethasone was doing its job of supporting the bone marrow production quite well. The Vincristine and Adriamycin took their toll of the white cells during the following two weeks when the count dropped to 5,900 and 5,200. All readings were in the normal range, however, and Gay was able to start the next round of VAD on schedule, the day after Christmas. That was a relief for us after the disappointing inability of the white cells to recover under the last protocol. On that same day she had blood drawn for another SMAC test to measure the protein level and from that, progress against the disease. This second regimen of VAD left her more tired out than the first, along with the recurring heartburn and diarrhea. She was also beginning to lose some of her hair. It still looked very presentable, but it was thinning. Her face was puffing up well beyond its normal size from the Dexamethasone. This bloating had its own side effects that no one warned us about and that the literature we read was silent on. Gay had always been a very attractive slender woman. Now, when she looked in the mirror she no longer saw herself looking back. She saw what her eyes perceived as a much less attractive woman who looked like she should go on a diet. She never complained about this, but I knew it bothered her. By this time the Dexamethasone was also causing Gay to have some depression. I came home one night and found her in the solarium. She wasn't asleep, but she was tilted back in her chair with her eyes closed. She greeted me when I came in and we talked for about fifteen minutes. Then I noticed that tears had started down both cheeks. There was no apparent cause. "What's wrong?" I asked as I crossed to her side. 114 "I don't know. I'm just weepy. I've been like this off and on for a good part of the day. This happened a couple of times last week, too. I didn't tell you because I thought it was just a passing thing. Nothing particular is wrong. I think it's just this strong steroid getting to me. It will pass." These spells didn't come often, but they did come occasionally for the rest of the time she was on VAD. The white counts during this second cycle were encouraging, however. They reached a record high level of 14,300 on the reading taken five days after she stopped taking the drugs, then dropped for the following two weeks as they had in the first cycle, and ended up in the normal range. As Gay began losing some hair and with the prospect of a possible bone marrow transplant where she would most probably lose more, Gay began to think seriously about various types of head covers. There were three main types to consider: head scarves, turbans that fit snugly to the head and wigs. Gay had some scarves in her wardrobe, but had not used them very often for her head. But, now the head scarf brought on a whole new dimension in dress for her to think about. At this point scarves were the "in" thing to wear as an accessory so they were plentiful in the stores and in catalogs. There were also pamphlets and in-store videos showing you the many different ways there were to tie them to achieve whatever effect you wanted. I went shopping for them a couple of times, with Gay, once with Shannon and by myself. I was amazed at the large variety of colors, sizes and designs. Gay soon had a substantial education in scarves and had a good time getting it. The turbans were not so plentiful, but she managed to find some that she liked. They have a distinct advantage in that they are easier and faster to put on and they don't come untied when you least want them to. We had the most fun with the wigs. One evening Gay told me that she had been thinking about getting a wig and wondered what I thought of the idea. I said I thought she would be uncomfortable wearing one to fool people into thinking it was her hair, but she might want to get one for fun. That concept hit a responsive cord and since we were in the Christmas holiday season I would have time to join her in her search. We decided we would start looking in the morning. I looked forward to it. When the morning came it was bright and crisp with a little snow on the ground. We first went out for breakfast, which we enjoyed doing from time to time, and 115 then drove just a short way down the street to Betty's Wig Boutique. There were three sales ladies in the store who greeted us as we entered the shop. At that point there weren't any other customers. Gay explained to all three that she really wasn't interested in trying to match her own hair, but wanted something that would change her appearance, something that she and her friends could laugh over and have fun with. They all smiled as each of them sized Gay up and mentally made a selection of one or two wigs they felt would fill the bill. One of them went to the several shelves of boxes and pulled one down. This was the first of many wigs Gay would try on that morning. Some of them were truly outrageous and made all of us laugh. Others were just ugly on Gay and they were quickly discarded. Other customers came in during our visit and joined in on the fun. Gay sorted through the several that had been left on the counter as possible candidates and made her selections. She has worn the wigs occasionally and has had fun with them each time. While we were enjoying the hunt for head covers and seriously watching Gay's CBC blood counts we were also wondering what the protein levels were doing. It should have taken only a week to get a report back to us on the SMAC test Gay took right after Christmas, but the results didn't arrive for two and a half weeks. They were extremely encouraging when they did come. They showed that Gay's Total Protein was within the normal range. They also showed, however, that the IgG was a little high, but well down from the baseline readings taken the previous February. We were elated, until we read the report more closely to find that none of the readings were to be trusted. The blood samples had apparently sat around too long in the lab before the tests were performed and the elements of the blood were too unstable to give meaningful results. The blood was drawn on December 26, arrived at the lab on the 29th and not processed until January 9. We decided that medical labs were staffed with ordinary human beings like the rest of us, and that the Holidays had gotten in the way of normal processing. We felt this delay was most unfortunate, however, because if we could have counted on the results, Gay might have gone on to the next step without taking a third cycle of VAD. Since they weren't trustworthy, there was little choice, but for her to return to St. Lukes, hook up the pump and start the third round. I believe Dr. River would have encouraged the third round anyway because he didn't believe the tumor load could have decreased that quickly. The point is, we didn't have a choice. During this period some of Gay's blood had been processed by local labs and some at University Hospitals in Iowa City. It was clear we needed to have another SMAC test to replace the last inconclusive one. In discussion with Dr. River we decided to have this one done in Iowa City. On January 19 Linda drove Gay to Iowa City to have the blood drawn for the test to avoid any possibility of having the 116 sample delayed in transit. Three days later Gay started the next cycle of VAD and on January 24, Dr. River called to say he had the results of the SMAC test from Iowa City and could discuss them with us that afternoon. Gay and I arrived at his office at 3:30, anxious to know what the results showed. We chatted with Marsha for a few minutes while waiting and then Dr. River was ready to see us. We went back to his private offices. The photographs that had been on the hall floor waiting for a new home now had one on the walls. As I walked by, I thought to myself they looked much better there. After preliminary greetings, Dr. River handed me a piece of paper and then turned to Gay. "That is a copy of the test results I received from Iowa City this morning. They show that your Total Protein is down to 7.0, Mrs. Hoyt, and your Globulin is at 2.4." As he spoke I picked the numbers off the lab report and then leaned over toward Gay and pointed them out to her. A feeling of genuine excitement swept over me as I began to grasp the potential magnitude of what he had just told us. " Those are both well within the normal range," I blurted out, failing to mask my delight with the figures. "That's not necessarily good news," Dr. River warned. A little puzzled, Gay asked, "Why?" "In the first place, I don't believe the results. These tests are not foolproof and sometimes you can get bad readings. This is a very short time for the tumor to come down this much. Secondly, do you remember when I first met you I said that I liked to see these tumors come down nice and slow, and ease into remission because when they do it that way there is a chance that they will stay there for awhile?" We both nodded our heads. He continued, "If this tumor load has really deceased this quickly then chances are it will come back just as fast." "You know, we've been thinking I might have a bone marrow transplant if the figures ever got this low," said Gay. "If the lab report is right, what would you think about that.? 117 "I think that's a very serious decision to make. A bone marrow transplant is a life threatening procedure. It's very risky and very painful. If the tumor really is at a low level or in remission we could switch you back to the Alkeran and Prednisone for a period to see if that controls the disease. If it comes back, we could return to the VAD and see if we could get it down again. The Alkeran and Prednisone had a relatively mild effect on how you felt and we might be able to continue your life at a fairly high quality for some time into the future. "If you try for a bone marrow transplant, you could end it in a short period and much of the time between now and then will be anything, but high quality. I have had very little personal experience with transplantation. That's their business in Iowa City. But, I do know that there is no known cure for multiple myeloma and I also know that I can keep you comfortable with a fairly high quality of life for some time to come." Gay and I sat silently listening to this rush of reality. Dr. River also fell silent now, giving time for the full impact of his words to sink in. I finally spoke, "Have you a way of knowing how long this might stay in remission, assuming it's there now?" "No, each case is so individual, there is really no way to forecast that." "Have you any experience with this disease that would suggest whether we could get it back in remission when it comes out and how many times we might be successful at doing that?" "No, I'm afraid I can't tell you that either. I wish I could. It would make decisions like this a lot easier." "Dr. River," I asked, "would this be the time to run the more specific tests to see if Gay still has a protein spike? I think you indicated early on that if the Total Protein test came in normal we would confirm those results with progressively more sophisticated tests." "You're exactly right, and now that I have given you my little speech, I think that's the next step. We will want to do a serum protein electrophoresis and get a twenty four hour urine sample to do a urine protein electrophoresis. These will give a graphic picture to tell us if the IgG is still spiking. We will also want an immunoelectrophoresis and an immunoglobulin study to tell us the level of the IgG more precisely. I would suggest you go to Iowa City for the tests since I assume 118 you would like to consult with Dr. Gingrich a little more about bone marrow transplants." "Yes, we want to do that," Gay answered. "Okay, I'll call him and set up the test and an appointment. It would probably be best to see him after the results are back. The discussion could be more specific and have more meaning that way." We started to say our good-bys when Gay remembered a question. "How do I get a twenty-four hour urine sample to Iowa City?" "Good question, I should have explained that. First you will have to decide when you are going to turn in the sample to the lab in Iowa City. Then time the catch so you finish the last part of the sample after you arrive at the hospital. St. Lukes will give you a plastic container like you've used before to hold the urine. When you're ready to go to Iowa City, put the container in some sort of carrying case filled with ice to keep it cool." "Okay, I can do that." Dr. River called Gay a few days later to say the appointment was set up for February 8 and she should go to the hospital at least a week before with the urine sample and to have blood drawn for the tests. While this was going on, we were still very interested in the progress Gay's white count was making during this cycle of VAD. The weekly CBC tests were showing the same pattern of readings on this third round as on the first two. The counts were staying in the normal range. Gay made arrangements for Linda to drive her to Iowa City to have the tests done. They picked out a day that would allow the lab plenty of time to complete their work before the appointment with Roger. Gay picked up a urine container from St Lukes and started the collection just twenty-four hours before she planned to turn the sample over to the lab, as Dr. River had instructed. When I got home from the office on the day Gay and Linda went to Iowa City, I found the two of them back in the den chuckling over the day's events. 119 "How did your day go, ladies?" I asked as I came into the den and put my briefcase down. "It sounds as if at least part of it was humorous." "One part was funny," Linda said with a bit of a laugh. "You should have seen your wife carrying her big bottle of urine through the hospital." "People must see that all the time in a hospital," I said. "Probably, but Gay has her own way of being noticed. I tried to walk a few steps behind so people wouldn't think I was with her." The two of them looked at each other and laughed again. I was getting more curious to hear the rest of the story. Linda looked back at me and continued with a smile. "You know you have to keep the urine cold? Well, when I got to the house to pick Gay up she was just figuring out how to do that. She put one plastic grocery sacks inside another and filled it with ice. Then she put that big urine container inside the double sack. The container is so big that a good part of it stuck out of the top of the sack. That seemed like a sensible way to carry it anyway, but when we got to the hospital the ice had partially melted. That would have been all right except the bags had a couple of holes in them we didn't know about. We found out about the holes when water started coming out and dripping on the floor of the hospital. I first saw what was happening when I held the door for Gay as we entered the hospital. I spotted the water dipping out as she came past me through the door. The sight struck me as funny and I started to laugh. When Gay saw what I was chuckling about she started laughing, too. We got some very strange looks as we paraded through the lobby and down that long hall to the clinic. We were just sure everyone thought Gay was carrying a leaking urine container and dripping it on the carpet as we walked along. What a sight. These two ladies walking down the hall, dripping 'urine' on the carpet and laughing about it as they went. This bit of humor was a nice relief from the tension we had all been feeling. You didn't know it was there until you laughed and could feel the difference. We were at a crucial point and subconsciously we could sense it. All of the ground work had been laid and we were rapidly closing in on the most important decision we had ever faced together. This was a decision that would drastically alter both of our lives. For Gay it was in terms of length and quality. For me, certainly the quality. Everything we had done over the past several month 120 had been designed to earn the right to have a choice: to take the high risk, high gain route of a bone marrow transplant or to concentrate what time was left on enjoying the relatively high quality of life Gay was now experiencing. We had gathered and studied just about all of the information we were going to get on the transplant option. Our coming visit with Roger would supply the last pieces. Our information left many important questions unanswered, but we felt we had what was available. We also had a very real example, in Ivy Beard, of a person who had clearly chosen to accept that the disease would eventually take her and was determined to live out her remaining time enjoying her family and friends to the utmost. Where there was a decision between being aggressive with drugs to try to prolong life or remaining lucid and mentally alert to interact with those she loved, she chose the latter. We understood the options she had and fully respected and agreed with the choices she made. They were right for her. The decision for Gay could just as logically be a different one. We obviously had been leaning strongly toward the more aggressive approach, but all of our actions up to now had been designed to allow us to move in either direction. We were now approaching a point where an irrevocable decision had to be made. We were now in a window of opportunity that could close without much warning. The disease was either in remission or at least at a low enough level to allow a transplant. That happy circumstance could change suddenly if the tumor came roaring back. The history of this disease clearly showed it would do that at some point given the normal treatment therapy. The transplant option would then vanish. We were bearing down on a vital decision juncture. It was not a time for fuzzy thinking or hazy feelings. It was a time to identify our objectives with great clarity. 121 CHAPTER VIII PRELUDE TO TRANSPLANT THE DECISION We rose early on the morning we had our appointment with Roger even though it wasn't until 1:00 PM. We were anxious to learn the results of the more specific tests Gay had done in Iowa City and to get Roger's opinion on whether a transplant was, at this point, a viable option for Gay. We discussed our hopes for what we would find over breakfast. When Shannon found out the importance of the trip a few days before, she asked to go along with us. She had just had arthroscopic surgery on her knee and was in some discomfort and on crutches, but wanted to go anyway. Gay and I treated ourselves to an early lunch at Riefe's, a family-owned restaurant we enjoyed, and then picked up Shannon after her morning classes at St. Ambrose University, only a few blocks from the restaurant. I then guided the car north to I-80 and turned west for the University Hospitals. Shannon had her leg stretched out on the back seat and Gay was in her usual navigator's position. We arrived at about 12:30. That was thirty minutes ahead of our appointment, but we wanted to make sure we were on time. We took a seat in the waiting room and I pulled my list of questions out of my briefcase for a quick review. Gay thumbed through a magazine that was on the table next to her chair. Tom was apparently anxious, too, because he joined us shortly after our arrival. We then heard Gay's name being called and were shown to one of the examining rooms like the ones we had been in before. Again we were lucky. There were four chairs and the stool so we didn't have to look for extra seats. Roger came in a few minutes later with what I thought was an air of excitement. We greeted him and introduced Shannon. Roger then took up his accustomed position on the stool and got right to the point. "The results of the tests run on you last week, Gay, are very encouraging. Your calcium level is normal which is a good sign for your bones. The potassium is a little low, but that's probably due to the amount of antacid you have been taking. The exciting news is there is only a very slight monoclonal spike in the urine protein electrophoresis. The other tests show no evidence of the disease." I could feel the adrenalin begin to flow as I absorbed the magnitude of Roger's words. I instinctively looked over at Gay as he was speaking. A broad smile came across her face as she took a deep breath and looked at me. The air in that room 122 was electric with the hope that flashed between us. "That's marvelous news," she exclaimed. "It certainly is," I heartily agreed, "but is that all there is to it?" "No, it really isn't. The protein is in or near the normal range, but that could be for one of two reasons. Either the disease has gone into remission or the malignant B cells have stopped producing the antibodies that have accounted for the high levels of protein we have been seeing up until now. Sometimes that happens and our protein marker goes away, but the malignancy is still there." I looked at Gay again. Her smile had faded along with mine. We would have to temper our optimism, at least for the moment. "How do we find out which is happening in Gay's case?" I asked. "Before you leave we will do another bone marrow biopsy so we can look directly at the bone marrow to see if there are any myeloma cells left. Even with that direct method we could miss some if a very low percentage of the cells are malignant. We know that's true with multiple myeloma, when we think the disease is gone only to find it coming back some time later. The cells were probably there all along, we just couldn't find them. That's the best measurement we have, however, and really quite good. When we did the biopsy on you last February we found that 35% of the cells in your bone marrow were malignant. We will clearly be able to tell if there has been a marked drop from that level." "I've been curious about something for sometime, Roger. If the tumor has indeed come down, it has done it very rapidly." "Yes, it has," Roger agreed. "Dr. River has indicated to us a number of times that if the tumor decreases rapidly that it is very likely to come back fast. Why is that?" "You know that chemotherapy acts against cells as they try to divide. An aggressive tumor is made up of cells that divide often. That results in a larger tumor load. If you have cells that are dividing often, there is a greater chance of catching a large number of them in the process of cell division during the period that the chemotherapy is active in the body. The result is the drugs kill a higher 123 percentage of malignant cells than usual and the tumor comes down faster than normal." I now understood and completed the explanation. "But, the fact that the tumor decreased rapidly in the first place means it is aggressive and when it does come back it will probably still be aggressive and come back fast." "That's the concept," said Roger with a smile. "I should have figured that out for myself, thanks. "Would another round of chemo make our chances for a successful transplant any better?" I asked. "I can tell you better after we look at the biopsy. There is a formula we go through to compare the results of the last biopsy with this one. That will give us the best reading." Gay shifted in her chair and then said, "You told us on our first meeting that you normally didn't do allogeneic transplants on people over forty-five. When we started our conversations, I was forty-five, but now I'm forty-six. Does that mean I can't have one if I want one?" "No," replied Roger with a grin, "we started with you before the cut-off age, but more importantly, you are in good physical shape other than the disease and I feel your body is strong enough to withstand the transplant procedure. You're a young forty-six. "Would you like me to run through the highlights of the transplantation procedure as a refresher?" Gay and I both indicated we would appreciate that. "It will be easier to explain if we assume you have already decided to have the transplant. When you first arrive at the hospital, go directly to the Transplant Unit on the seventh floor. You won't have to go through Admitting." If you have time, we can visit the floor today before you leave. Gay interrupted, "We have time and would like to see it." 124 "Okay, that's very good. We can go up right after we take out some bone marrow. Jan Holland is the social worker on the floor and I told her you might be coming up. I think, besides seeing the facility, you might like to talk to Jan about what goes on in the Unit." He paused for a moment to switch back to the transplant process. "You'll go through three days of total body radiation. That will be two hundred rads, two times each day. We will give your lungs less radiation than the rest of the body since they can be damaged more easily. Bone marrow is more susceptible to radiation than other organs of the body. That's what allows us to kill the bone marrow and still have the rest of the body survive. That doesn't mean that damage isn't done, but most is repairable. The eyes can take a beating, however. You can be pretty sure that at some point in your life after the radiation you will get cataracts. I don't know when, but our experience is that it does happen. "The radiation will be followed by five days of heavy chemotherapy. We will do our best to keep you comfortable through this period. You will probably sleep a lot. "The radiation treatment will most likely dry up your salivary glands and tear ducts, so your mouth and eyes will be uncomfortably dry. This can last for quite awhile after you leave the hospital. You will get sores on your tongue and inside your mouth. Your taste buds will make food taste bad. You may also feel some nausea and may vomit from the radiation and drugs. The combination of these things can make eating a chore. This usually lasts for two to three weeks. "Your blood counts will start dropping shortly after you begin the radiation and chemotherapy and there will be very little left of your immune system by the day you get your new bone marrow. The white counts will be very near zero. We will put you on antibiotics then, but it will be very important to keep you away from germs. Any visitors who have colds, etc. will be stopped by the nurses from going into your room. If they don't stop them, you should, for your own protection. It's best to tell this to people you think might visit before you check into the hospital so everyone understands." "We have been practicing that kind of precaution since the beginning," I said, "so all of our friends are well aware of the need for caution," I said. Gay chuckled, "Harry has everyone so concerned they may give me something that our most healthy friends are afraid to visit me." 125 "I'm glad that your friends know to be cautious," Roger said. "Having visitors is usually good therapy for the patients and I encourage it. But, it's important that they're healthy. Roger paused to see if we had another question and then continued, "We will wait one day after the last dose of chemotherapy before doing the transplant. On the morning of the transplant, we will bring Tom in, take out about 5% of his bone marrow and give it to you that afternoon. "Before giving you his marrow, though, we will screen out all of Tom's T cells. If they remained at full strength they would attack the cells of your body, Gay, with a good deal of force and could bring on a serious case of graft versus host disease, or GVH for short. We have learned through studies we have done here at the hospital, however, that we have less chance of the disease coming back if we add a certain number of T cells back into the marrow before we give it to you. We calculate the number to add back based on your body weight. These killer cells will cause some GVH, but they will also kill malignant cells that may still be left in the body. We're willing to allow a little GVH at this point if we can improve the chances of the disease not returning. That's the theory we work under. We will also give you chemotherapy for the first twenty days after transplant to help control the T cells. "Graft versus host disease could become an important factor in your recovery, Gay, so let me spend a little more time on it. About 70% of the people who have an allogeneic transplant get GVH. In about 20% of those cases it's chronic. By removing most of the T cells from the marrow before giving it to you, that 20% figure is reduced quite a bit. "The most common time to get GVH is between days twenty-one and seventy-five after transplant." "If you are going to get GVH it will probably be in one of three organs. It most commonly attacks the skin. It usually appears in the fairly mild form of a light rash and some itching over a part of the skin, but it can come in the much more serious form of a burn that covers large areas. There are, of course, all gradations in between. The second most common place for GVH to strike is the GI tract and most usually results in diarrhea, but can become more serious. It can also hit the liver where it can show up as hepatitis. A fourth organ, the lungs, can also be affected resulting in pneumonia. That can be very serious." 126 Roger paused. I took advantage of the lull. "Roger," I said, "a moment ago you mentioned a couple of days by number. Would you explain that?" "Sure, we start counting days from the day of the transplant. The transplant day is zero and the day after is Day One. "At about Day Twenty-one your counts should start coming back up. The white counts bounce back first, followed by the red cells. The platelets are the last to return to normal. It could take a matter of months for them to come back to full strength. We will give you platelets by transfusion until the bone marrow is able to maintain them at a safe level. "We will do a bone marrow biopsy on about Day Twenty-eight to see how well the marrow is engrafting and to check its ability to produce good counts. The marrow will also be checked to see if there are any myeloma cells that can be found. If all goes well with the counts and the biopsy, you can start spending time outside the confines of your room. That's generally an event worth celebrating. "You should count on being here about two months, Gay. As you get stronger toward the end of that period, we will try to let you go home for a day or a weekend to help you phase back into your home environment. You would be surprised; some people become very dependent on the Unit staff after being here for six to eight weeks. Going back into the outside world can be scary for some. The day passes can help the transition." "If you need treatment after transplant, you will probably come in to Clinic B two or three times a week as an outpatient." "If all goes well, Gay, you should be feeling quite good within about six months and your immune system should be functioning well in about a year." "How long is it generally before you know that the transplant has been successful?" I asked. "We should know if the bone marrow has taken to its new surroundings well and is producing red and white cells and platelets as it should in about six months. We will be watching for a recurrence of the disease for much longer than that, probably for the rest of your life, Gay." 127 "You've indicated to us before that this would be the first bone marrow transplant you've done here at the Hospital for multiple myeloma," I said. "Do you feel that would put Gay at any type of disadvantage if she had it done here or would another place that has done the procedure for this disease be better?" "That's a fair question and I've given it some thought. I think the answer is that she would not be at any disadvantage. The procedure is the same regardless of the disease and we would follow our proven steps. I have checked with colleagues in other hospitals and can't find anything they would do that we aren't aware of and don't do as well." Then he paused a moment and continued with a little smile, "or perhaps, a little better." Gay added, "We would certainly prefer to have it done in here. We know you and you know us. It's close to home so my family and friends could be here with me often. If I were some place far away like Seattle, it would be difficult. The kids probably would not be able to see me at all and there is a limit to how much time Harry could spend with me. I suspect their support is going to be very important to me." "I think it is. Their support, along with the very positive attitude I know you already have, will go a long way toward turning a tough experience like this into a success. I've seen how beneficial a positive attitude and strong support from family and friends can be and I'm a believer. It should be a part of the prescription right along with the medication. There's another point along this line that is worth making. We will want to see you routinely after you are initially released following the transplant. Also, you may have to be readmitted to the hospital one or two times after the transplant. Most people have something go wrong after the first time they go home. The point is, you may have to do some traveling back and forth." "Roger," I said, "this may be a difficult question, but it certainly fits into the equation as we make the decision on whether to have the transplant so I'll ask it. How long would you estimate it will take for the disease to come back without a transplant?" "Well, it is a hard question, but also an important one. I would guess the disease would return in six to twelve months. I think Gay would be alive in a year, but it's hard to predict after that. 128 "What are Gay's chances of surviving the transplant procedure itself?" I asked. "Statistically they are between 60% and 70%." "Do you have capacity in the bone marrow unit to take Gay if that's our direction?" I asked. "We don't right now, but should within a few weeks. We are in the process of installing Laminar Air-Flow units in eight of the fourteen rooms we have in the Adult Bone Marrow Transplant Unit. We have completed two rooms and they're in use. We are working on two more right now. You would probably get one of those when they're finished." "What are Laminar Air-Flow units?" asked Gay. "It's one-way flow of air pushed by a fan through a filter and past the patient into the rest of the room. It is designed to keep any air-borne fungi, bacteria and viruses away from the patient. This is particularly important for transplant patients during the time their immune system is not up to full strength. We will take a look at one when we go upstairs." With that our little group fell silent. It seemed most of the questions had been answered, at least for now. Roger broke the silence. "Well, Gay, shall we take some more of your bone marrow and see if we can find any myeloma cells?" "I'm ready," said Gay as she stiffly raised herself from the chair. "My back is ready for another position and flat on my stomach is as good as any. Let's do it." Tom excused himself, saying he had to get back to his ward. He said he would try to join us in the Transplant Unit, but couldn't promise. Roger led Gay and me to another examining room to do the biopsy. Gay lay on the examining table on her stomach as a lab technician came in with a tray of instruments to be used in the procedure. Roger exposed the back of Gay's pelvis and disinfected it with Betadine and alcohol. He then placed a green towel the nurse handed him over the spot where he would be working. The towel had a round hole in it right where he would be entering the bone. He told us each step before he took it, so we would know what was going to happen. We found that very 129 reassuring. He deadened the skin and then the top of the bone with lidocaine just as Dr. River had done when he aspirated bone marrow from Gay's sternum. He then cut down through the outer layer of the pelvic bone with an aspiration needle and into the bone marrow cavity. As he did this he kept checking with Gay to see if she was feeling any discomfort. She felt pressure when he pushed on the cutting instrument, but no pain. Roger then screwed a syringe to the needle and said, "I'm going to pull up some blood and marrow from around the bone marrow. You'll feel a sharp pain as I do it. Are you ready, Gay?" Gay took a deep breath and took a extra firm grip on my hand and replied, "Yes, go ahead." Roger pulled back on the plunger of the syringe and aspirated blood and bone marrow up into it. Gay winced and gave my hand a hard squeeze, then eased her grip as the pain subsided. Roger then unscrewed the syringe from the needle and quickly prepared a set of slides from the liquid. When he completed the last slide he turned back toward Gay with the cutting needle and said, "I'm going to twist this hollow biopsy needle into the bone marrow, itself, and take a core sample of the marrow. Then we'll be done." He fastened his hand around the handle forming a tee at the top of the needle and twisted and pushed the instrument slowly, but firmly into the marrow. When he sensed he had gone far enough for a large enough sample he said with some satisfaction, "I think that should do it. Let's take a look. I'm going to come out now." He reversed his motion and turned and pulled the needle out. He then inserted a small rod into the hollow opening of the needle and pushed the bone marrow out of the other end onto a piece of gauze held by the lab technician. He looked down at the dark brown core of bone marrow. It had taken the cylindrical shape of the inside of the needle it had just come out of and was fairly solid in consistency, but gritty, like so many granules of sand packed together. "We have a good sample, Gay. That's all we need," said Roger. He put a dressing on the incision in Gay's skin. He folded the green towel and gave it back to the technician. She picked up the instrument tray with the slides and bone marrow sample and departed. I helped Gay sit up on the edge of the table. When she was ready, we rejoined Shannon and followed Roger through the hospital corridors to Carver Hall and up on elevator D to the seventh floor. We stepped off and made two quick left turns and through a large double door. The large sign on 130 the wall announced that we were entering the Adult Bone Marrow Transplant Unit. We walked down a wide hall to a reception area. Roger pulled a hand full of blue paper booties from a box on the counter and handed a pair to each of us. As he did he explained, "These are the fashion up here. We used them to keep the Unit as free of outside contamination as we can. Just slip them on over your shoes." We all did. Roger then gave us a quick tour. The Unit was in the shape of a letter "H". Two wide halls ran the full length of the Unit with a short space connecting them approximately half way, where we had put on the booties. Patients' rooms lined the outside of both long halls along with one room that served as a lounge for patients' families and friends and a staff lounge. There was a double door at the lower end of both halls exiting to the outer hospital corridor. The space between the two lower halls housed a small kitchen, a medication preparation room where all of the tubes required for giving medication intravenously were connected together before being taken to the patient's room, a linen room, a room with a large bath tub for those patients who wanted to use it or who couldn't use a shower, Jan Holland's office, the head nurse's office, a large equipment room and the nurses locker room. In the center of the Unit, where the two legs of the "H" connected, was the reception and administrative area. Here is where the Unit clerks kept all of the administrative records and handled the phones, a computer terminal and the intercom to patients' rooms. Just beyond this area, in the space between the two upper halls, was an all-purpose nurses' room. It had work stations set up on the counter that stretched along three of the room's walls. The nurses used this room for writing reports, eating meals and now and again for relaxing between duties or calls from patients. Next to it was a room used by the doctors to analyze patient data, consult with one another, to develop treatment strategies and sometimes to wonder if the diagnosis was correct, if the treatment would work and if not what the next step should be. Beyond this was the physicians' assistants' office, a utility room that was used for storing more equipment and an examining room. Both of the upper halls ended in double doors that lead to the Pediatric Bone Marrow Transplant Unit. We ended the tour just outside Jan Holland's office. The door was open and she stepped into the hall to meet us. Roger excused himself to get back to some other matters and Jan suggested we use the lounge right across from her office to talk. There was no one else in there and we all pulled chairs up to the table in the center of the room. 131 After we were seated Jan asked, "Are you coming in for a transplant, Gay, or just thinking about it at this point?" "We are giving it very serious thought," Gay replied. "We won't know for sure if I'm even ready for one until the results of the bone marrow biopsy come back." "That's fine. I'll just give you an idea of what to expect if you do decide on a transplant. First of all I'm the social worker for the Unit. I counsel with patients, family members and friends whenever it might be helpful. Having a disease like cancer can be very stressful and going through a procedure like transplantation can add substantially to that stress. There are times when the patient and often those close to the patient come under a lot of tension. I'm here to help them through those times. "There are five staff doctors who work in the Unit and in Clinic B, the Hematology clinic. Each doctor is a specialist in bone marrow transplantation and is usually responsible for the Transplant Unit for one month at a time. Then another doctor takes over for the next month. You may ask why only one month. I think one of the major reason is that this work is so stressful that one month is all that is reasonable. Also, there are other important duties to be accomplished. In the months the doctors are not in the Unit they work in Clinic B and do research in this field. During the month each doctor is in the Unit, he or she is in charge of the care of all patients on the floor and is the head of the medical team effort. "There are several other members of the team. We have one or two physicians' assistants in the Unit. We also have a resident and a fellow physician on the team. The resident is specializing in internal medicine and is here at the hospital for three years of general training. The fellow has gone through his residency training and is specializing in bone marrow transplantation." She paused for a moment and then added, "I'm probably telling you something you already know. I understand, Gay, that your brother is a resident here now." "That's right" said Gay. "He would be here with us, but he had to go back to his floor." "Well, I'll look forward to meeting him." She paused again to remember where she was in her explanation and then continued. "The person you will come in contact with the most will be your nurse. 132 There is a head nurse, an assistant head nurse and sixteen to twenty nurses on the staff, depending on the patient load. If you enter the Unit for a transplant you will have a primary and a secondary nurse assigned to you. We try to pick nurses that will be compatible with the patient. If you find you don't get along with the nurses chosen, we can make a change." "What does being primary and secondary mean?" asked Shannon. "It means that when your primary nurse is on duty that's the person who will be caring for you. Otherwise it will be the secondary nurse. There will be times when neither your primary or secondary nurse is on duty. In those cases one of the other nurses will be assigned to you." "Roger told us about the Laminar Air-Flow rooms," I said. "Is there one open we could see?" "Yes there is. We need a little stretch anyway. Let's step across the hall and look at one." Shannon hopped up on her crutches and we all followed Jan across the hall. She pushed on a large door and held it for us as we each walked through it. We were standing in an irregularly shaped room that I judged to be about twenty feet long and a little less than that wide. It was split down the middle by a partition that was solid on the bottom and transparent plexiglass on top. We were standing just inside the door leading from the hall into the visitor's section of the room. The patient's area was on the far side of the plexiglass to our right. The partition went from the floor to the ceiling and was about seven feet long. It ended at a three to four foot opening about three quarters of the way down the length of the room. The opening lead into the inner room. I walked to the end of the plexiglass partition and stood in the opening facing the inner room. Jan suggested we not enter that area because it had already been disinfected, otherwise I would have gone inside. The door to the bathroom was immediately to my left and the patient's living area was to the right. This space had a hospital bed positioned just about in the middle of it with a bed side table fit tightly between the plexiglass and the bed. There was a window making up most of the wall on the far side of the bed with a chair set snugly between the window and the head of the bed. Approximately two feet from the foot of the bed was the bathroom wall. There was a triangular cabinet that fit into the corner formed by the window and the bathroom wall, with just enough room for a person to walk 133 between it and the foot of the bed. It had a TV on top and storage space underneath. There was a blue bulletin board on the wall behind the TV. A series of light switches and a thermostat were on the wall at the head of the bed just above the bedside table. The intercom was just below the switches and there was a cable leading from the wall to a remote control that lay next to a telephone on the table. I couldn't tell what the remote did from where I was standing, but Jan explained that it allowed the patient to control the lights, intercom and TV. It could also be used to control a motor-driven curtain that could be drawn over the transparent partition so the patient could have some privacy from visitors in the outer room. The controls to put the bed in different positions was clamped to the head rail of the bed. I stepped backwards out of the opening and turned to my left to face a large window that extended across the entire outside wall at the far end of the visitors' area. The patient's bathroom was now to my right. A plaster wall, painted light blue, separated the bathroom from the outer room. The wall extended from the opening to the window. The patient's bathroom was on the other side of the wall and a TV was perched on a shelf mounted to our side of the wall, about seven feet off the floor. There was also a phone on the wall under the TV, and another light blue bulletin board with thumb tacks stuck in it. A small table was up against the wall under the TV with a small chair pushed underneath it. The window at the far end had a blue vinyl-covered, high backed chair and matching stool in front of it. As I faced the window, the other side wall of the room was on my left. It was also painted light blue and stretched from the window to the door leading to the hall. Along the wall, close to the door, was a sink followed by a counter about five feet long with cabinets built in above and below it, and a two-foot wide closet between the counter and the window. Everyone had been silent as we each took in our surroundings. When Jan thought we were satisfied with what the room looked like, she explained the air system. "The entire wall behind the head of the bed is made of porous material so air can easily pass through it. The air is filtered and purified before it enters the room. Large fans are installed behind the wall. The fans run constantly and create an air current that flows from the head of the bed to the foot and out into this outer room." As she talked she walked over to the narrow wall between the plexiglass partition and the hall door. "There are exhaust fans built into this wall that pull the air out of the room. The objective is to keep any viruses, bacteria and funguses that might be carried into the room always blowing away from the patient. The fans are on low 134 speed now. Even on low, you can hear they make a bit of a background noise. They have a high speed too that's used whenever there is anyone else in the room with the patient." Jan flipped two toggle switches on the wall panel to the up position. The fans quickly came to high speed. The noise level and air movement in the room immediately increased substantially. We could talk over the noise, but it was much more of an effort. After a few seconds Jan pushed the switches back to low. If Gay was to have a transplant, this would be home for quite awhile. I caught her eye as I turned back toward the door. I could tell she was evaluating the space with that same thought in mind. The room was bright and very clean. The two sections combined made a pretty good sized room. Those things were positive, but Gay was wondering how she would do in the confines on the other side of the plexiglass partition where there was barely room for the bed and accompanying furniture. It was a fair concern. Gay let out a low moan as her eyes left mine to look around the room once more. She verbalized her feelings and mine. "Would I have to be on the other side of that glass wall while I was here?" "Yes, until your blood counts came up into the normal range. That could take about the first month." "That's an awfully small room to be confined in for a month," said Gay in a low pensive voice as she tried to picture herself on the other side of the wall. "You're right," Jan replied, "it's not very big, but you'd be much safer over there," as she motioned to the inner room, "than on this side once your immune system stops functioning. Bring things from home to make the room more like your own place. Bring a bed spread, a table lamp, a radio and pictures for the walls and pictures of the family. If you like music, bring your tapes or whatever. Music can be good. Some people have a hard time concentrating on a book or anything heavy when they're on some of these drugs, so they listen to music. Bring things you like to do. Some women have brought their sewing machines. You wouldn't feel like using a sewing machine for awhile, but eventually you would." "Could I use water colors?" inquired Gay with a hopeful note in her voice. "Sure you could" 135 "I've always wanted to try water colors and this might be the time." "Why don't we go back to the lounge where we can sit and be more comfortable," Jan suggested. She glanced at Shannon on her crutches as she spoke. We followed Jan back across the hall and took up our original seats around the square table. "Let me just give you some quick suggestions," Jan began. "I won't spend a lot of time on any one of them, but if you have questions please stop me so we can concentrate on what you're interested in." "Some days you will feel like seeing people and being active, others you won't. It would be good to ask visitors to call before they come so they don't catch you when you're not up to seeing them. If people do come at a bad time, I can be helpful in explaining to them why they can't see you. They'll understand. "Make it a point to get up in the mornings and get dressed in regular clothes. You won't always be able to do that, but when you can it will give you a psychological lift. Another thing that will give you a lift is exercise. We have two stationary bikes you can use. Either of them can be wheeled right into your room. When you're in bed or confined in that small room for a period, your muscles get very weak unless you exercise. "Give yourself a lot of short-term goals and then follow them with rewards. It's best not to continually focus on those objectives that are still over the horizon. It's more uplifting for most people to have a bunch of little victories along the way and then celebrate every one. Also, celebrate the same things you would if you were at home, like birthdays and holidays. It may seem like a little thing, but small gifts from others can also give you a boost. "No fresh flowers or fruit." Gay interrupted putting on an exaggerated expression of disappointment, "But, I like both of those things." "I know, most people do. Silk flowers are okay, but real fruit and flowers can carry fungi and fungal infection can be very hard to medicate against, especially when you have no immune system. Sometime visitors who don't know the rules bring them and we just put them out by the nurses' station." "I like that idea," said Gay with a smile. 136 "I don't know if you smoke or not, Gay," Jan continued, "but here is one very important thing to remember. Absolutely no smoking. Even secondary smoke will be very dangerous for you. Stay away from it." Jan paused for emphasis and then continued. "Most people lose their hair from the strong chemotherapy. Quite a few people see the inevitable coming and just have it shaved off. That saves them from having to deal with hair falling out and getting into their food and everything else. Some people bring wigs and scarves, but end up not wearing them very often. Bald is fashionable up here. Most of our patients are right in style and no one thinks twice about it." At this point Roger stuck his head in the door. He had a smile that made his face beam with delight. "I just looked at the slides of your bone marrow, Gay. I can't find any myeloma cells on any of them." The same electricity of hope that sparked between Gay and me two hours before in Clinic B instantly returned. This meant the disease was in remission, at least for the moment, and Gay now had a choice. Gay reached for my hand and gave it a long, hard squeeze. I was quickly reminded of how strong her grip could be. Roger continued, "In fact, I embarrassed myself. There were some residents downstairs in the clinic when I started to look at the slides. I called them over so they could see some myeloma cells. You know, the disease is not that common and they had never seen it before. After I searched every one of the slides I had to tell them it was a false alarm. I couldn't find a single malignant cell to show them. I was quite pleased to be embarrassed. "The analysis of the bone marrow itself will take several more days, but I doubt we will see anything different there." "Does that mean I can have a transplant, Roger?" Gay asked with a smile on her face and excitement in her voice. "It sure does, Gay." "Roger, those rooms are so small," Gay blurted out with a good deal of vehemence. "How does anyone stand to be cooped up in one for two months? I'd hate that." 137 Roger's smile faded and his face got serious. Gay was attacking the rooms he had personally worked so hard to have installed. "Those are new rooms, but I understand they are a little small. If you would feel better in one of the regular rooms, Gay, we can put you in one." "No," Gay immediately replied with a smile, "if I have a transplant I want every advantage I can get. I think that means being in a Laminar Air-Flow room. I'm just registering an early complaint." "Okay, but if you later think that you wouldn't be able to stand one of those rooms we can change to the old style rooms. But, you're right, the Laminar Air-Flow is a safer way to do it. In either case we'll have to schedule a room, so please let me know if you want to have a transplant as soon as you've decided." "Harry and I will discuss it, probably on the way home in the car, and give you a call. Thanks very much, Roger." I got up and thanked him too as I shook his hand. Then he was gone as quickly as he had come. Jan reached over and gave Gay's arm a pat. "That's wonderful news. I'm happy for you. Jan paused to review her mental check list to see if she had covered everything. "I think we hit nearly all of the points I wanted to tell you before Roger came in with his good news. There is one other piece of information you may find of interest, however, and then I'll let you go. I'm sure your anxious to be on your way. There is a support group that meets every Tuesday afternoon between 3:00 and 4:00 in Two Carver East. We have both pre-and post-transplant patients attend along with family members and sometimes a friend or two. Some of the nurses from the Unit also sit in. You are all welcome to attend if you like." "I think I might do that," Gay said. "I would think that people would benefit from that." "Yes," replied Jan, "many report back to me that they find solid support from the group; they are more able to cope." She paused and looked at each of us as she said, "Do you have any questions?" 138 I looked at Gay and Shannon. They both shook their heads. "I don't either," I said. "You have given us a lot of your time this afternoon and with it a lot of very helpful information. I'm not sure I could write any more on this tablet. It's pretty full. We certainly thank you." Gay and Shannon added their thanks as we all stood and did a little stretch after the long sitting spell. "If you have any questions later just call. My number is on this card." She handed each of us a business card as she spoke. "Let's go over to my office for a moment before you go. I want to give you a write-up on the transplant process. A couple of years ago the physicians' assistant at the time and I felt there was a need for an explanation people could take with them, so we worked together to write this up." By this time she was at her desk and we were standing in her office door. She pick up a stapled set of papers and handed it to me, then came out of the office to say good-by. We thanked her again and retraced our steps to elevator D, then down to the first floor, out the front door and to our waiting car in the parking building. Within about ten minutes we were headed east on I-80 toward home. We hadn't heard a peep out of Shannon since leaving our parking spot. I glanced into the back seat to find her sound asleep. She looked like she would probably stay that way for the whole ride home. We had had a most eventful day and I wanted to know what Gay was thinking at this point. She was ready for a discussion, too. "My gosh," she started, "each time we go there we learn a bunch, but today we really got a lot of information." "I sure agree with that. Roger has always been very helpful so that isn't unusual, but I didn't expect to get so much more when we went up on the floor. I thought we would just look around and little else, but Jan filled us in on a lot of useful things that we haven't heard before. I particularly appreciate her telling us what you can expect if you become a patient and how to prepare for it." I stopped talking for a moment and then asked, "Do you have any more questions about the process or the risks involved before making a decision? "No," replied Gay, "I think I understand it pretty well. How about you?" 139 "No, I think we have all we're going to get. There don't seem to be clear answers to the questions I have left. What are you thinking at this point?" "You go first," Gay said with a playful smile. "That's not fair," I shot back. "I never intended to be fair. I want to know what you think." "Okay, I'll try to sum it up in less than the time we have from here to home. First of all, I haven't heard or read anything to change my thinking on the type of transplant. If you go for it, I think you ought to take Tom's bone marrow so you know your getting good material put back into your body. I understand that if you use your own marrow, you will avoid graft versus host disease. I also understand that GVH could be tough to fight through, but it sounds like it is usually not life threatening. I'm afraid if you put your own marrow back in your body you will give yourself the multiple myeloma right back with it. If that happens it is sure to take your life." "Whether or not to have the transplant is the rougher decision. Roger gave us a number today that we were missing the last time we rode home from Iowa City. He gave you a 60% to 70% chance of surviving the transplant process. We now have another estimate that is also useful. He judged that if you continued as you are, and didn't have a transplant, the disease would come back within six months to a year; that you would be alive in a year, but all bets were off after that. Last time we were here, we estimated three to four years. That might have been a little strong in view of today's conversation. Now we have a somewhat shorter range to work with, maybe one to three years. " "We have no way of knowing what the odds are that the disease will not come back even if the transplant is successful. If the transplant does no more than buy us that same one to three years, then we will have gone through a lot of agony for little gain." It stands to reason though that all of the radiation and chemotherapy given before transplant should do a lot more damage to the malignancy than doing nothing or going back on Alkeran and Prednisone even if it doesn't completely rid you of it. That should buy more time. If it did, it would probably be worth the hardship of transplant. 140 "There is a second unknown. We don't know what long-term damage the high radiation and chemotherapy might do to the organs of your body. The damage could repair itself or it could lead to a shorter life expectancy. No one can answer that one for us." "If the concept of transplant works, however, you will be rid of the myeloma cells. That would be worth the trauma of the transplant." "The question still is, should our objective be to go for the cure and take the risks?" "My logic tells me the odds are not nearly as good as I would like them to be, but with what we know, I think they favor transplant." "That's as far as my logic will take me. I have an answer from the emotional, the feeling side of me, too, but let me stop here and get your reaction." "Please tell me that side, too. I know what I want to do, but I want to make sure I know your feelings before I make a final decision. So, please go on." I glanced over at her face and could see she was quite serious so I continued. "The first thing I feel is that the decision you're comfortable with is the right one regardless of what I say now or what anyone else feels. I love you very much, Gay, and I'm going to work with you to get the fullest advantage out of whatever decision you make." I was able to keep my emotions under control as long as I was weaving the logic of my analysis, but now that I had entered the feeling side of my being the gravity and magnitude of this decision was getting to me and tears rolled down my checks. I didn't bother to wipe them away. I just kept on driving while I tried to express my feelings so Gay would clearly understand how deeply I felt. I continued. "One or two years is not very long and the thought of losing you in that time when there might be a reasonable alternative is very difficult for me to accept. I want you with me, Gay, and I think a transplant could give us a lot more time together. My gut feel and my logic bring me to the same conclusion. I think you would survive a transplant and it would probably be successful." I paused for a moment and then added, "Now it's your turn." She had been looking at me while I was speaking in order to get the full meaning of what I was saying. She didn't want to misunderstand any part of it. "Thanks for 141 doing that. I know you didn't want to influence me by telling me your feelings first, but I'm glad you did." "I think there is a real possibility that a transplant could give me a cure. I just have the feeling that the radiation and chemotherapy will kill off the bad guys and leave me free of the disease. That will certainly not happen if I continue doing what everyone else has done. They're dead. I also think I'm strong enough to survive the transplant. I love you very much and I want to continue being with you for a long time to come. I'm not ready to give that up. I am willing to take the risk of an earlier death for that." She rested her head back against the seat and smiled as she let out a long breath. "I'll call Roger tomorrow morning. I'll also call Dr. River." She suddenly sat upright and leaned toward me for emphasis. "I'm ready to go. I hope we can get a room quickly. I don't want to wait around now that we have made up our minds." After that energetic outburst she eased her head back to the head rest again and said with a coy smile, "That felt kinda good. I should do that more often." I thought about what she had said for a moment and then added, "I think you have a real point about getting on with it. I think you're due to go on the next round of VAD in a little over a week aren't you?" "I think it would be Monday after next." "Why don't you mention that to Roger when you talk to him. I don't want you to have to go through another cycle of VAD if we can avoid it. I would think it would be smart for you to be as physically and mentally strong as possible before starting the transplant. But, if you can't get a room very soon it may be smart to do it." "I'll ask him about it," Gay promised. We were almost home by this time. Shannon was still asleep as we hit the off ramp at the Northwest Davenport exit. The hour's ride had gone by like a shot. We had a decision and clear direction. 142 143 CHAPTER IX WAITING FOR A ROOM The next morning was Friday. I awoke a little earlier than usual. As I came out of my sleep, I found a series of thoughts I wanted to express to Gay running through my head. I looked over to the other side of the bed and found she was sound asleep. I could have expressed the most profound worldly concept to her at that point and it would have made very little impact. I decided to write Gay a letter. I got up quietly, dressed and went to the kitchen. Over my usual cereal and yogurt I put my thoughts on paper. My Dearest Gay, I know now that we are going to make it. The road may be difficult, but the obstacles will be easier to overcome if we continually focus on how marvelous it will be to return to the wonderful way of life we have taken for granted all these beautiful years we have spent together. When things get rough, try to remember how very much in love with you I am and how dearly you are loved by every member of our family; how central you have always been to the uniquely loving and caring relationships that we all share with you and with each other. You are loved and you are vitally important to us all, but especially to me. Love, Demi Gay called me at the office about an hour after I arrived. She sounded as if she had been crying. "What's wrong, Love?" I asked somewhat startled. "Nothing is wrong. I just read your letter and it made me so happy I cried, and now I'm going to do it again. Your strength and your love are so important to me. They give me the courage to fight on." "Those thoughts came to me as I was waking up," I interjected. "I almost woke you to tell you, but you were sleeping so soundly I decided a letter might be more humane." "I love the letter, but I would have been thrilled to be awakened to hear you say the words." I wasn't convinced that was true. Gay does like to sleep in the mornings. Later that morning Gay called Dr. River to tell him of our decision and the reasons for it. She found him very supportive and wished her every success. He told her she was in very capable hands for the transplant and with her attitude she had a good chance for success. He also said he would make arrangements for the referral and inform Heritage National for the insurance coverage. She then called Roger to tell him she was ready to go any time. Gay told me later she could hear his smile over the telephone. He again offered to put her in a regular room if she didn't like the Laminar Air-Flow set up. She declined saying she wanted every advantage she could get and would do just fine in the small space. He repeated that two rooms were under construction and that she could have the first one completed. That would be a few weeks and he would let her know when he had a firm date. She asked if she should do another cycle of VAD. He didn't feel that would be necessary. The next call was to Tom. She caught him that night at home. She invited me to join her in the conversation on an extension phone. He greeted the news with a great deal of enthusiasm and excitement. He had felt that transplant was the right option and was delighted at the important part he would play. He told his sister, "Gay, your not only going to get some of the finest bone marrow around, but you'll get a bonus, too. Your sex drive should greatly improve after the transplant." We all laughed at this outrageous boast and have recalled it several times since then, when we want a chuckle. Tom also said, in a more practical vein, that he and Beth wanted me to stay at their house any time I wanted and for as long as I wanted so I could be closer to Gay during the transplant. I thought that was a very generous offer and said I hadn't really thought about my own logistics, but would probably take advantage of their offer. Gay was feeling better than she had in well over a year. The VAD had done its job well and she was gaining strength almost daily. If there was ever a time for her to think back on her sentiments after Roger first told us about the transplant procedure 144 it was now. That was the day, on the way home in the car, she told me if she ever got this disease in remission and started to feel like herself again, it would be very difficult to give that up and go for a transplant. I don't know if she ever thought about those feelings, but I do know she never wavered from her decision. She was in high spirits, but it was a time for reflection as well. One Saturday morning I walked into our bathroom and found her staring into the mirror. She wasn't really looking at her reflection, but was turning a thought in her head. As I came in she turned slowly toward me and said, "You know it really is difficult to keep optimistic and at the same time emotionally prepare for the worst that can happen." I was strangely relieved to hear her say this. The same thought had struck me over the past several months, but I had not expressed it because I didn't want Gay to have any doubts about where I stood in my support for her and what she wanted to do. I felt this must be a fairly common conflict for anyone facing the possible loss of someone important in their lives. I responded. "I know exactly what you are feeling. I feel it's very important that we have a genuinely positive attitude about the outcome of the transplant. I'm convinced that will swing the odds more heavily in our favor. But, I can't do that and at the same time emotionally prepare myself for the possibility of your leaving me." "If you did that you would have to distance yourself from me so when the time came you wouldn't feel the loss as much." "You've hit it exactly. I'm simply not willing to do that. If the transplant fails and you die, I will have a difficult time adjusting, much more difficult than if I, as you said, distanced myself. Well, so be it." Gay's eyes watered and she covered the two steps between us and gave me a long loving hug. As we parted I observed pensively, "You know, Gay, the very opposite has been happening. I might have said before last February that our relationship couldn't be much better. This past year would have proved me wrong. I feel closer to you now than I ever have." "I feel the same way," she said as she began arranging things by the sink that didn't really need arranging. "Sometimes it's as if we were two halves of the same person. I have always counted on your love and been so thankful to have it, ever since we 145 first met. I feel very lucky to have you. This last year would have been a nightmare without you with me." Now it was my turn to hug her. As things turned out we were quite busy during the period before going in for the transplant. Since Gay continued to be more comfortable with me being chief communicator, I made a call around during the next two days to tell family and friends of the decision. I started with the children, Gay's mom and Jack, and my aunt and uncle. Gay made it a point to talk to each of them over the following week, not to inform them of the decision, but to let each know that the decision was hers and that regardless of how it came out it was what she wanted to do. She explained to me that she didn't want anyone blaming me, or the doctors, or anyone else if the transplant didn't work. We spent the weekend, following our trip to Iowa City, in Bloomington, Illinois visiting David and Janie. The trip was set up before the transplant decision was made and it gave us an excellent opportunity to explain our direction in person. David had been quite disappointed that he was not a match for Gay. He thought he would be and wanted to be Gay's donor. These were two important people in our lives and we wanted to make sure they understood the decision and why it was made. It was also a chance for a marvelous visit. We went to a large supper market that sold a lot more things than groceries. While Gay and Janie were in another part of the store I found two sweatshirts I thought would be perfect to give her after the first couple of days in the hospital. I bought them and sneaked them out to the car without her knowing. By this time Gay had decided she would learn something about painting with water colors while in the hospital. Both David and Janie had done water colors in the past and spent some time showing her some of their techniques. They then assembled some brushes, paints and other material she could use to get started. Gay and I headed back home late Sunday afternoon in wonderful spirits. Gay's cousin, Judy, had planned to fly in from Providence later in the month for a visit, but when she heard about the pending transplant and the uncertainty of timing she immediately changed her reservations to come earlier. She arrived on the tenth and was able to stay for a week. She was a delight to have around. It would have been difficult to feel down in the dumps while she was there. 146 During that week, Gay, Judy and Linda went to Iowa City to join in on the regular Tuesday afternoon support group meeting. Gay had gone the previous Tuesday as well so this was her second visit. That evening over dinner Gay and Judy told me about what they had experienced. A few days later Linda gave me her impressions of it. There was one person who felt her only chance at life was to have a transplant. She had no brothers or sisters to call on to be a donor so she was waiting to find a match in the general public. It made us realize how lucky we were that Tom was a match for Gay. There was a second woman who had decided to have a transplant, but was visibly shaken by the prospect. She was unable to view it in any other terms, but terrifying. This stood out in stark contrast to the way Gay was approaching the same procedure. Linda and Judy both expressed their feelings to the group. They explained how close they each felt to Gay and the emotions they had experienced during the past year. They both choked up while they were speaking. Those in the room understood very well and quietly waited for each to finish. Gay had met some of the nurses from the transplant floor in her last visit. A male nurse named Steve was there again that day and visited with the three after the meeting. He was apparently impressed with Gay because he told her he would request to be her primary nurse when she was admitted. Gay thought he seemed both very nice and very competent. I asked her if she would be uncomfortable with a man taking care of her. She said she had thought about that and really wasn't. She had had male doctors all her life and that didn't bother her. What she wanted most was a good nurse. A person who knew what he or she was doing. All three women were glad they went to the meeting, but Gay wasn't sure it would be all that helpful to attend regularly. Just before Judy returned to Providence, Roger called to say there would be a room ready for Gay on Monday, the fifth of March. That was in about ten days. Now we had a date and the planning could have a more specific focus. I called Gay's mom and Jack in Phoenix to give them the date. We had no thought of convincing Mom to stay in Arizona a little longer as we had the previous year. Gay wanted to have some private time with her before she went into the hospital. 147 She didn't want to miss that chance and neither did Mom. As soon as I announced the date, Mom said they would hook up the trailer and leave in the morning. Jack was on the extension phone and quickly interrupted, "Wait a minute, Dear. I don't think we can get this rig buttoned up quite that fast." "How long will it take, Jack?" Mom asked. She obviously wanted to get moving and wasn't going to have much patience for delay. I could almost hear Jack mentally running down all the things that would have to be accomplished before they could depart and then rechecking to find short cuts that would reduce the time. After a few seconds he responded. "We can be out of here by day after tomorrow in the morning, if we start now." And they were, arriving home five days later. I arranged to take two weeks of vacation starting on the fifth. Mert Hornbuckle, my boss, and Dick Van Bell, his boss, both told me to take the time I needed and not to worry about the office. Needless to say, that kind of support at work was very helpful. All of the people in my immediate group were wonderful. They had all shown a good deal of concern for Gay and me over the past year and their support was even stronger now. I thought two weeks would allow me to be with Gay during the toughest part of the process, the radiation, the chemotherapy and the transplant itself. I hadn't taken any vacation in the year up to now so I would have plenty in reserve if I needed it. If it turned out that two weeks wasn't enough, I was confident I could work more time in. Shannon came up to me one day and asked if I had thought about getting Mom a bedspread. I told her that Gay and I had discussed it and she didn't really feel it was necessary. Shannon thought the right spread would add a bright touch to the room and asked if I would go shopping for one with her. We found that Cameron wanted to go, too. The three of us searched a number of stores that afternoon and came up empty. We came home and paged through countless catalogs and still couldn't find what we wanted. Shannon was very disappointed and even more convinced than ever that her mom should have a bedspread and told her this several times over several days. A few days later Gay visited Ivy at her home to personally tell her of the decision to have a transplant. Ivy was genuinely pleased at the news. She felt there was good reason for hope in Gay's case, even though she had concluded long ago that a transplant would not be right in her own situation. Ivy felt the disease was too far along and had weakened her body too much to survive such an ordeal. She also felt that at sixty she was too old for the procedure. 148 In the course of the visit their conversation ranged over several topics and at one point when Gay was telling Ivy about all the things the kids were doing she mentioned Shannon's concern about a bedspread. Ivy lit up and said she had just gotten a new one she had ordered and liked it so much she had ordered another one so she could use them on twin beds. She brought it out and said she would consider it a favor if Gay would take it to use in the hospital. Gay resisted, but Ivy insisted that another one was on its way and she could order a second one easily enough. She reasoned that Gay would not have time to get one before checking in. Finally she just looked at Gay and said, "I would like you to have something from me when you go into the hospital." Gay saw that Ivy wasn't just being generous, she really wanted her to take the quilt. Gay did manage to write her a check for the cost, but at first Ivy wasn't even going to let her do that. The quilt was lovely and when Shannon saw it she hugged her mother and said it was just what she had pictured. It was perfect. Like Shannon, I had some thoughts about what might be useful to Gay in that little room. I remembered Jan's suggestion about music. Gay liked music and we often listened to tapes, CD's and now and again one of the old records that used to be her dad's. We had the material to play, but nothing suitable to play it on in the hospital. After leaving the office late one afternoon about a week before the hospital date, I went shopping for a boom box, one of those large portable radio and tape players with a speaker on either end. After about three hours of looking and comparing, I found one I thought would do the job nicely. Besides having a radio and tape player, it would also play CD's. Gay was pleased and over the next several days she recorded many of her father's records on tape so she could listen to them in the hospital. She also gathered up the tapes she particularly liked and asked me to pick out some CD's. Andy was able to join us for a short visit the weekend before the fifth following a business meeting in Milwaukee. We enjoyed his company even if it was only brief. The phone rang a lot during this period. Our children continued calling as they had been. So did Gay's mom and Jack, my aunt and uncle, and our close friends. Added to these more normal calls were acquaintances who wanted to wish Gay well. Gay felt very good about having so many people pulling for her. So did I. 149 As the date grew closer Gay began to gather things she wanted to take as she would think of them and put them in one place, between the bedroom and the den. This made packing a relatively easy job. She also began to tell me things she wanted to make sure I remembered, like where things were in the house that I rarely dealt with. In this same spirit she wrote out several pages of things she knew and did as part of her routine of running the house that the kids and I would now have to tend to. Finally she wrote reminders in big letters on 3x5 cards and put them on the door to the garage so we would see them whenever we went anywhere. The reminders were to let the dogs out and make sure they had food and water; be sure all the doors were locked and the answering machine was turned on when leaving; and, DON'T COME TO IOWA CITY IF THE WEATHER IS BAD. She wanted to make sure that all three of us understood the last message in particular. She had no intention of losing any of us while she was trying to get rid of her cancer.

Continue with Part 2, Chapter X