"Back From The Brink, a Love Story," Part 2

CHAPTER X UNIVERSITY HOSPITALS

GETTING STARTED

We were scheduled to check into the hospital by around 9:00 so Gay and I were up plenty early on that Monday morning. There was very little we had to do before leaving. Cameron and I had loaded the two large laundry baskets of clothes, books, water colors, tapes, etc. into the car along with the boom box just before going to bed. Mom and Jack had joined us for dinner the night before and Mom had asked me what I thought about them going to Iowa City with us. I couldn't tell if she wanted to come or was uncomfortable about it so I told her what I thought might make sense. I suggested that Gay and I go alone this first day and get a better idea of what level of visitation would be permitted and what would be discouraged. It turned out she felt the same, but wanted to be on hand if we felt she might be helpful in any way. I had accepted Tom's and Beth's invitation to use their house as a base of operation and had my bag packed for a two-week stay. Beth had sent me a key for the front door and a map to show how to get there. I needed a map for two reasons. The first was, I wouldn't have Gay with me to help navigate. Secondly, I hadn't been to their house since helping them move in two and a half years before. I had little reason to return because Tom and Beth always came to the Quad Cities for family get togethers. I had the key in my pocket and the map in the car. We talked about what the day might bring over some cereal and yogurt. We both had the feeling we were embarking on one of the most important journeys of our lives. We were eager to get started and yet apprehensive at the same time. The adrenalin was flowing just a little, but we were calmer than I had anticipated. When we left the house we both knew there was a chance I might return without her. We might also return together, with much more time to spend in partnership. We backed the car out of the garage about 7:45 and headed it in the direction of Iowa City. When we pulled off I-80 at Iowa City, Gay suggested we drop my suitcase off at Tom's and Beth's house before going to the hospital. This would give me a chance to see the way during daylight since I would probably be with her at the hospital until after dark that night. 151 When we arrived at the hospital, I pulled around the circle drive and stopped at the front entrance. I got out after pulling the trunk release and explained to the security guard that Gay was checking in and asked if there was some sort of wheeled cart we could use to transport her belongings to the seventh floor. He turned and grabbed the handles of the first wheel chair in a line and pushed it in my direction. I positioned the chair by the trunk and started unloading the things onto the seat and arms of the chair. When that one was full, I took a second off the same line and loaded it, too. I got permission to leave the car at the curb long enough to take Gay's belongings to her room and started pushing the heavier chair toward the entrance. Gay started pushing the other chair. I suggested that she could leave hers and I would come back for it, but she said it rolled easily and it would be fun to see people's reaction to our little two-person parade. We did get a few stares from onlookers as we rumbled these two loaded wheel chairs through the lobby. It gave us a chuckle. We got to the Transplant Unit and were directed to room 7083. We wheeled the chairs inside and unloaded them so I could take them back to the entrance and park the car. The room was very similar to the one Jan had shown us a month earlier. When I returned from that chore, Gay was sitting in a chair in the outer room looking first at all of her stuff and then at the room to decide where to put everything. About that time a nurse came in. She was shorter and more vivacious than average. She introduced herself, "I'm Kate Engle." We introduced ourselves, then she explained, " I'm going to check you in, Gay, and will be your nurse for the rest of the day." She sat down with a set of admitting forms and the questions began. She made the exercise humorous and it went fast. She explained some of the rules for visitation and reviewed Gay's schedule as she knew it for the following few days. "Okay," said Kate with some relief, "that takes care of the paper work. Now let me tell you some of the rules we need to keep in mind, Gay, for your safety, especially when your immune system loses its effectiveness." She turned to me and asked, "Are you going to be with Gay for the next few days, Harry?" "I'm planning to be here all the time for the next two weeks and then each day from late in the afternoon if all is going well at that point." 152 "That will be helpful. The patients who have good support like that seem to do better than the ones who don't. That's not from a scientific study, it's just what I've observed. You can also help us control the visitation. I think you will make a good gatekeeper. There are only a few rules to follow. Visitation is from 10:00 AM to 10:00 PM." She turned to me again and added, "You can come earlier and stay later, but those are the hours we ask others to observe. "You can have one person at a time in the inner room with you, Gay, but for only thirty minutes out of every two hours. If anyone goes in they must put on one of these white gowns like I have on. If they wear the gown outside the room they should put on a clean one before going back in. Also, the fans must be on high the whole time anyone is inside. No one sitting on your bed and anyone who is in with you should always be downwind from where you are. This goes for the staff as well as visitors. We want all germs always moving away from you. "No more than three visitors in this room at once, including anyone who might be in with you. No one should be in here or anywhere near you who might have a cold or any kind of infection. Anyone who comes in the Unit should put on the blue foot covers and wear them the whole time they're here. If they leave the Unit and come back they should get a new set of covers. We want to keep as much of the outside dirt out of here. "Any time visitors come in the room the first thing they should do is wash their hands using the soap at the sink. Anytime you leave the room, Harry, even if it's just to get something someplace else in the Unit, wash your hands when you come back in. Hands touch all kinds of things and they get very germy. You will probably get chapped hands before too long so you may want to use a hand cream often. You'll see the doctors and nurses make their first stop the sink before they do anything else in the room." "Has anyone explained the Laminar Air-Flow system to you?" "Yes," said Gay, "Jan showed us how it works when we were here last month." "That's great," she said with a chuckle, "then I won't bore you with that again unless you have some questions." "I don't think we do at this point," I said. 153 Gay got out of her chair and walked to the opening of the inner room. "Can I go inside?" she said, turning back to Kate. "Not unless your ready to stay in there. That room has been disinfected and once you go in, the only way you can come out is if we put you in a wheel chair with a protective plastic tent over the top." Gay quickly retraced her steps to her chair and sat down. "No, thanks, I'll stay out as long as I can." "I think your scheduled to go to surgery at noon today to have a Hickman catheter put in. Do you know what that is?" "Only in general terms," replied Gay. "It's a tube used for getting blood out of your body for testing and for putting medication in. The surgeons will make an incision just above your breast and feed a narrow tube under the skin to your collar bone. They make another incision there and feed the tube into a vein that leads directly to your heart. Most of the Hickmans we see have a single tube that comes out of the incision in the chest with two lines coming off that single tube. We draw blood out of either of those lines and also use them to give you medication and liquids." "I already have an Infuse-a-port," said Gay. "For what we have to do here the Hickman works much better. We will be drawing blood and giving medication and fluids several times a day for several weeks. We would wear out the skin that covers your Infuse-a-port with all the needles we have to stick you with if we used it. I think you'll be happier with the Hickman." "They will give you a local anesthetic to put it in. The process should take only about half an hour, if they are running on schedule. Harry, you may want to get some lunch at that point and meet Gay back here after she's done. All you could do otherwise is wait in the surgical waiting room." I acknowledged the suggestion with a nod and Kate continued. "When you start the radiation and the chemotherapy, your blood counts will decrease rapidly. We will draw blood twice a day to keep track of where those counts are. At the point when you're ready to have the transplant, your immune 154 system will no longer be effective. If it were, your white cells would attack the new marrow and that would never do. Your white counts will be very close to zero. After the transplant we will be measuring your counts and watching them come back up. Your nurse will make a chart and pin it to your bulletin board and then put your counts on the chart every day so you can see what they're doing. That will be the score card. The chart will have four columns to show the white cell, hemoglobin, platelets and the segs." "I think we know what all of those things are except the segs," I said. "The segs are segmented neutrophils. They are a type of white blood cells that pick up debris in the body and fight off disease." "Thanks, that helps." "We can't transfuse the white cells in great enough numbers to maintain normal levels, but we can the red cells and the platelets. We'll give you more red cells when your hemoglobin drops under 10.0 and platelets when they go below 20,000. We shorten those numbers to ten and twenty. That's the way you'll see them on the chart and the way you'll hear the doctors and nurses refer to them. The red cells have a fairly long half-life; they stick around for awhile so we don't have to give you those so often. The platelets have a very short half-life and we have to transfuse those more often." "Your mouth will take a beating from the radiation and the chemotherapy. The radiation will dry up your mouth and you will probably get sores on your tongue and inside your mouth from a combination of the two. I'm sure you know the mouth can be a very germy place. Since your immune system won't be helping us much we need to do everything we can to keep infection to a minimum. We have a whole series of things for you to do for mouth care. You'll probably start that tomorrow so let's wait until then for more detail. I can show you the actual mouth washes and medications we use. "When you go into your bathroom, you're going to find two plastic containers fitted into the top of the stool. We call them hats because that's what they look like, turned upside down. Don't take them out. We want to catch all your waste products from today until you leave. You may find them a little awkward at first, but it's important to use them rather than the stool. In fact you may not flush a toilet the whole time you're with us." 155 We chuckled a little at that remark and then Gay asked, "Why do you want to do that?" "Most people wonder about that, Gay. There are three main reasons. One is to check for infection. If your temperature hits 38.5 degrees, we will send a sample to the lab to see if they can grow a culture. That 38.5 degrees is in Centigrade. It's 101.3 in Fahrenheit. If you have an infection, it will often show up in a culture and the lab can identify it for us. Then the doctors can be much more specific in the medication they order to fight it. We have a far better chance of killing infection fast if we know what kind it is." "The second reason has to do with how well you are able to eat. We don't want you to lose any body weight during treatment. That could weaken you and you will need all of your strength. There will be times when you won't be able to eat or at least not enough to maintain your weight. There may be other times when you can eat, but can't keep it all down. During those periods we will feed you intravenously through your Hickman. To do this accurately our dietitian has to know how much is going in and how much is coming out. So, we measure the amount of liquids and solids your body is discarding. If you get sick to your stomach, you should catch the vomit in one of those yellow plastic pans stacked up over there on your table. We will measure that, too. Your natural tendency will be to get rid of it. Don't do that. Call the nurse to take care of it for you." "The third reason for catching waste is so we can check for anything out of the ordinary that may suggest something going on inside of you we should know about. The nurse will come in several times during the shift to check the hats. We first make a visual check of the color of your urine and the consistency of your stools. If you're having diarrhea, we want to know how severe it is. We also check for obvious signs of problems like blood or any other suspicious elements that shouldn't be there. We then use a chemically treated stick, we call it a dip stick, to perform a general test to see if the PH balance and the sugar and protein levels are within their normal ranges. If any are not, the doctors will check further to determine why. The dip stick can also tell us if there are traces of blood that we can't detect visually. Its similar to a litmus test. "Since we're on the subject of what goes in and what comes out, let me explain the input side. Each day you will get a form with food choices for the following day for each meal. You fill out the form to tell the dietitian what you want to eat. That gets the food to you. But, there's a second part to this. After each meal you use another form to mark down what items you actually ate and how much. Also mark 156 down anything you had to eat in between meals. The dietitian can determine from that form how many calories you put into your body and calculates how many more calories you need to maintain your body weight. "As a part of this process we will weigh you every morning. Your weight on the scales should be pretty close to the dietitian's calculations. If it's not, we know that between you and the nurses we aren't recording every thing we should. Then we have to tighten up our accuracy. Gay shifted in her seat as she tried to absorb it all. Neither of us realized how completely Gay would be monitored, and maintained when necessary, during this procedure. Knowing this detail was helpful to both of us. It let us know what to expect and gave us confidence that we were in the right place, that the staff was fully competent to pull off their end of the transplant procedure. We knew this from the hospital's reputation, but it was reassuring to start seeing evidence of it first hand. Gay expressed it. "I don't think I've been inspected so closely in my life. You will know a lot more about me than I will. I'm impressed," then she added with a twinkle, "but I'm not sure about going in a hat." That gave us a bit of a laugh. "Kate," I said, " you've given us a tremendous amount of information in a short period of time. I think we're beginning to understand just how thorough this procedure is going to be. What else is Gay supposed to do today besides the Hickman?" "The schedule had you down for x-ray, but they haven't given us a time yet. They can be sort of independent some times. I think you will also get a physical examination. That will be done by one of the doctors here on the floor. A pulmonary function test is scheduled for later this afternoon. That's where you blow hard into a tube connected to a machine that measures your lung capacity. That reminds me," she said as she reached behind her and picked up a box from the counter. She opened it and took out a transparent cylinder with a bluish tinge to it. It was about eight or nine inches tall with a white base and a flexible plastic tube connected to the bottom. The cylinder had a blue plastic disc sitting in the bottom of it and white numbers printed up the side that measured the cylinder in cubic centimeters. Kate put the apparatus on the table in front of Gay. She continued. "After you have been inactive for a time because of being in bed or just being confined in your small room, you tend to take very few deep breaths. 157 Your lungs aren't filled with air and exercised nearly as much as usual. When this happens, parts of your lungs can get weak and sometimes fill with fluid. Infection is possible after that and can be very dangerous. This contraption can help guard against it. "Give it a try, Gay. Just put the mouth piece in your mouth and suck in as hard as you can for as long as you can. Let's see how high you can make the disc rise in the cylinder." Gay pulled on the mouth piece and the disc moved up to the 2000 mark. All the time she was doing it, Kate was encouraging her to pull harder and hold it longer. Gay's face turned a light shade of red. She finally ran out of breath and the disc fell back to the bottom of the cylinder. "That was really good," said Kate. "You should use that at least three times a day. You don't have to set new records each time you use it, but try to get up to where you did just now and hold it for a count of ten. No fair counting by two." We all laughed. "I was explaining your schedule. I think that's it for today. Dr. Gingrich will be up later this afternoon and I'm sure he will be able to give you more information on what will happen in the next few days." She checked her watch and stood up saying, "I have to check on some other patients now, but I'll be back a little later." With that she swished out the door. "Well, if all of the staff is as energetic and as knowledgeable as she is I think you will be well taken care of." "I think so, too," agreed Gay. "I am a little surprised they would allow any visitors in with you at all. I suspect you are going to have a lot of visitors who will want to come in and give you a big hug if they can. That will be harder to control if we let people into your inner room. It seems that would be taking more risk than we should. If your not in violent disagreement, I suggest we not let anyone in with you, including me. There may be some exceptions we will want to make, but as a general rule, what do you think?" "I'm not happy at the prospect of bring cooped up in that room for a month, but I don't think it would help my psyche any more to have people in there than out here. I certainly don't want to catch anything without an immune system. So, I agree, but 158 I'm sure there will be times when you will do me much more good in close to me than out here. When those times come, I want you in, not out. Maybe that's one of the exceptions." At that point a woman we hadn't met came through the door. She was medium height and had a broad smile on her face. She was wearing those loose-fitting green hospital tops and pants that clearly identified her as a member of the staff. She stuck out her hand in greeting to both of us and introduced herself. "I'm Paula McCue, the head nurse for the Unit. I just dropped by to say hello and see if there was anything you needed." I introduced Gay and myself and thanked her for coming over. We chatted for a short time, then she left saying, "My office is just on the other side of the Unit, but I'm usually somewhere on the floor. If I can ever be of help or answer any questions, please let me know." Shortly after she left we heard a knock at the open door. We looked up to see Sue Howes, an associate pastor at our church. "Can I come in or is this a bad time?" "No, it's a good time," said Gay as she crossed to the door to greet Sue. "Please come in and have a seat," I added and pointed to the chair Kate had just vacated. Sue was here to see some other church members who were in the hospital and stopped by on the chance that we might have checked in by this time. We chatted for awhile, then Kate showed up at the door. "They're ready for you in surgery to put your Hickman in. Do you want to walk or take a ride in a wheel chair?" "Oh, goodness, I'll walk," Gay replied. Since it was nearly noon, Gay suggested that Sue and I get some lunch and meet her in the room afterwards. I was apprehensive about leaving her, especially since she was going to surgery. The thought of someone cutting into my wife did make me a little nervous, but Kate assured me that there would be nothing I could do to be helpful so I might as well have lunch. I asked her how Gay was going to get lunch. 159 She told us that she would order a meal from the kitchen so Gay would have something when she got back. With that Kate showed Gay the way to the surgical clinic and Sue and I headed for the cafeteria. After lunch Sue excused herself to make her visitations and I went back to the seventh floor. I put on a fresh pair of blue booties at the reception area and crossed the hall to Gay's room. About thirty minutes later Kate wheeled Gay up to the door in a wheel chair. "I thought I would treat her to a ride after that," referring to the surgery. "I think she deserves it, don't you?" I agreed as Gay got out of the chair and came into the room. She thanked Kate for the ride and sat down. "How did it go?" I asked. "Well, I got it put in. Ya wanna see?" She unbuttoned the top button on her blouse and pulled it down far enough for me to see a small tube extending from under a white dressing on her upper chest. She had a second bandage on her neck. "How do you feel?" "They gave me a local anesthetic. I just feel numb where the tube comes out and on my neck. I'll tell you more when the anesthetic wears off." "One funny thing happened, though. There were two surgeons and a nurse in there with me. Before they started doing anything they draped a green towel between my face and the rest of my body so I couldn't see what they were doing, but I could hear everything they said. As far as I could tell they were working away on my chest when one of them said, 'She sure does have some big ones.' Well that got my attention. I didn't know whether to be flattered or insulted so I said, 'I've got big what?' 'Big veins, you've got nice big veins, he said.'" That gave us both a good laugh and I was happy for it. "Were you disappointed at the answer?" "I don't know. I'll have to think about it a little. Anyway, I think surgeons ought to be careful about what they say when their operating on someone. A part of the time I was in there they were talking about some woman who had an operation that 160 didn't go well. I found that a little scary. I couldn't figure out exactly what had gone wrong, but I found myself wondering if the same thing could happen to me. Seems to me it wouldn't help to have a nervous patient under you. Besides, I might have known the woman." I certainly had to agree with Gay, but I thought the criticism applied to all of us. How easy it is to become callous and careless in our daily living and insensitive to the needs of those around us. But, those thoughts were too deep for my head at the moment so I tilted my head back against the back of the chair and Gay and I talked quietly for about an hour while we both rested. She ate some of the food from the tray Kate brought, but she wasn't very hungry. Roger knocked on the door and came in to greet us with a smile. He sat down and I told him what had been accomplished up to that point. He seemed pleased with our progress and then gave us a summary that covered some of the same information Kate had given us in the morning. We didn't mind hearing it again as a good review. Then he went over Gay's schedule for the next several days with an explanation of what was going to happen. "Some time today or tomorrow a dentist will stop by to examine your mouth. It's possible for you to have a small cut or infection in your mouth and not know about it. Before we start giving you radiation and chemotherapy, we want to know if there is anything there to be careful about. The radiation will dry up your salivary glands. The decrease in saliva will make your teeth more susceptible to decay. To make up for the loss we will give you fluoride to put on your teeth with an applicator as a part of your mouth care. You should continue doing it after you get home. You'll have to see a dentist more often than you have been to keep a close track on your teeth. "I have also asked a physical therapist to stop by to give you some tips on exercising. You can exercise in your room and you can also ride one of the stationary bikes. There will be days when you can't do either, but it's important to exercise when you can." "Now let me tell you about the radiation therapy. Tomorrow morning you are scheduled to go down to the cobalt machine in Radiology to be measured for lung shields. I think the time is 9:00. We want to radiate your whole body, but the lungs are more susceptible to damage than many of the other organs so we want to shield them from the radiation we give you on the first day. Your total body radiation will be done on the cobalt machine, but that machine can also give us a 161 regular x-ray that will show us exactly where your lungs are when you're lying under the machine. Lead blocks will then be made from the x-ray to the shape and size of your lungs for use the next day when you come back for the actual treatment. It will take the rest of Tuesday to make the lead shields so the rest of that day should be fairly quiet. We'll finish doing anything we don't get done today. "Bright and early at 8:00 on Wednesday morning you'll go back down to the cobalt machine for total body radiation on your front. The lung shields will be placed between you and the cobalt in the proper position to protect the lungs. In shielding the lungs we also shield the tissue between the lungs and your chest and between your lungs and your back. We want that area to receive the same amount of radiation as the rest of your body. "We need to use a different machine to do that. It's called a linear accelerator. This machine can be controlled to radiate to a given depth in the body and no further. It can radiate down to the lungs in the same area shielded by the lead and go no further. All we need to know is the distance from the skin on your chest to the front of your lungs and from your back to your lungs." "We will use a C.T. machine to make that measurement." "Is that like a Cat Scan?" I asked. "Yes, it can measure the depth of tissues in the body. The C.T. is right across the hall from the cobalt machine so as soon as your finished with the radiation you will go to the C.T. to get those measurements. "In the afternoon at 2:00 you're scheduled back at the cobalt machine for a second total body radiation, only this time it will be from the back with the lung shields in place. As soon as you're finished there, you can go to the linear accelerator where they will radiate the areas that were shielded above and below your lungs. The operator will set the machine to the proper depth using the measurements from the C.T. machine. "That will be the end of your first day of radiation. It will be a long day and of the three days of radiation it will probably be the roughest on you. "On Thursday morning at 8:00 you'll go back to the cobalt machine for total body radiation on both the front and the back sides without the lung shields in place. At 162 2:00 in the afternoon you'll go through the same routine. Friday will be a repeat of Thursday. Then you will be completely done with the radiation. "We'll start the four days of heavy chemotherapy on Saturday, followed by a day of rest and then the next day you get Tom's bone marrow. I'll give you more details on that when we get a little closer. "The radiation will dry up your salivary glands and probably make the glands on either side of your face swell up. You may have diarrhea and could experience nausea and vomiting. Most people lose their hair in the first week or so. In six to eight weeks after radiation you could get radiation pneumonitis. That's an inflammation of the lungs. We could also see infection of the lungs and even cancer. We will be watching closely for signs of any of these things. "It's almost a sure thing that you will get cataracts in your eyes, usually within one to three years. "The radiation will also send you into menopause, Gay." "That certainly isn't a problem, Roger. I think I've been there since we started treatment with the Alkeran and Prednisone." "I don't like the last two things you mention, about the cataracts and the lungs," I said with concern. "I don't either. We haven't found a way of avoiding these risks, but we can lessen them. The cataracts can be repaired with artificial lenses. It's a much easier job than it used to be. We will be listening to Gay's lungs several time each day to detect anything that might be going wrong. We will also take x-rays for a closer check. We continually check for signs of infection in blood samples and the waste you eliminate. If we see something that looks suspicious, we jump right on it with medication. We tend to act more quickly than some other areas of medicine because everyone up here has a poorly functioning immune system and we have to count on medication to do nearly the whole job of protection. We can't afford to let an infection get ahead of us. Have you any questions?" "Not a question," responded Gay, "just some information. You recall, I started on estrogen replacement on the first of December. Well, it gave me some terrific migraine headaches so I discontinued the pills in February. I didn't want to deal 163 with those headaches while going through a transplant. I thought you might want to know that in planning any medication for me while I'm here. "Yes, that is helpful to know, thanks." "Roger, Jan told us that the staff doctors are on the floor for a month and then off. Are you on now?" I asked. "Yes, I'll be on the month of March. After that I'll be following Gay closely through reports and weekly staff meetings we have. Actually we often have them more than weekly. I'll also be on the floor quite often so I won't be far away if needed. "There are two other doctors on the floor with me this month. Dr. Nasir Maloo is a third year resident. Perhaps you can tell from his name that his nationality is Indian. The other is Dr. Choon Lee from Korea. Dr. Lee is doing his fellowship here, specializing in bone marrow transplantation. They will be with me when we do morning and evening rounds and both take part in diagnosing problems and developing treatment strategies. They should both be on the floor now. If they are I will bring them in to meet you both." Roger left the room at a medium gait and returned within a few minutes with the other two doctors in tow. He introduced us and we exchanged the normal pleasantries. Roger then gave a quick summary of Gay's case, but before we could do much more than that, Kate stuck her head in the door to tell us that Gay was wanted for her pulmonary function test. Roger said he felt we had covered enough for one day and that the timing was very good. Kate gave us directions and Gay and I headed out to find the area where the test would be given. We were both suffering from information overload and the walk was doing us some good. We found the spot and Gay went through a group of tests that took about forty-five minutes. When we arrived back in Gay's room, we found two hungry kids impatiently waiting for us. "Where have you two been?" asked Shannon. "We've been here about an hour. We thought you must be lost." Before we could answer Cameron joined in. "Besides we're hungry. Is there a place around here we can have dinner?" 164 Gay and I momentarily ignored all of this and gave them both a hug. I found Kate and asked her if we would be fouling anyone up if we went to dinner. She said she thought x-ray would have called by then, but maybe had decided to do Gay in the morning, so we might as well go. We then headed for the cafeteria to fill their stomachs and ours. I found I was hungry and, since Gay ate very little lunch, she was, too. We recounted our busy day to the kids over dinner and then decided to look around the hospital a little. Gay suggested we try the eighth floor in our wing. She had seen some very nice art work up there when she attended one of the support groups and thought it might be of interest. We took elevator D to the eighth floor and found there was indeed some very interesting art work. We also found a medical museum and a library, both of which were closed by this time. We sat in the large lounge area for awhile and then returned to Gay's room. We took turns explaining the process Gay would be going through so both of them would be sure to understand what was going to happen. Then it was time for them to start the hour long drive back. They departed and Gay and I flopped back in our chairs. We didn't have a long time to sit before Dr. Maloo came in the room and asked Gay if she was too tired for him to give her a physical examination. She said she wasn't and Dr. Maloo suggested they do it in her inner room. She told him she wasn't going in there until she had to. He thought for a minute and said we could go to an examining room at the other end of the Unit. We followed him past the reception area, the nurses' room and the doctors' room to a cubicle on the left side just short of the Pediatric Unit. He gave Gay a normal physical and found her to be in good physical condition except for the disease that brought her there. The physical gave us a chance to chat with Dr. Maloo and get to know him a little better. When we finished, a little less than an hour later, Gay and I walked back to her room and once again resumed our seats for a little relaxation. I think the bed in the inner room was beginning to look good to Gay, but she was determined not to enter until she had to. As I gazed around the room, I realized we had been kept so busy since our arrival that we hadn't given a thought as to where Gay's things should be put or how we were going to organize ourselves for the next couple of months. It was clear that there was not enough storage space in the inner room for all of Gay's clothes, the boom box, books, etc. I pulled out the several pages of telephone numbers and set them aside for Gay to take into her room. This reminded her that she didn't have 165 the access number for our long distance company. She would need that to make long distance calls. I wrote it down and put it with the phone numbers. I then went to attack the first laundry basket. The bedspread Gay had gotten from Ivy was on top. I took it over to the entrance to the inner room and gave it a little toss. It landed at the foot of the bed. The clothes were next. It seemed clear that the easiest way to handle them was to store most of them in the outer room. Gay could tell me each night what she wanted for the next day and I could pull it out and give it to her. With this decided, I hung her pants in the closet and put her tops and underwear on the shelf. The clothing she selected for her stay was very practical. Over the past months the steroids had swelled her normally small waist beyond what the waistbands on her usual street clothes would tolerate so elastic waists worked the best. Also, Gay tended to get chilly easily so warm clothing was also called for. The obvious answer for comfort and warmth was a number of sweat suits. The boom box was the next challenge. We discussed squeezing into the inner room, but thought that if she wasn't feeling very well over the next several days she would not want to be fooling with it, but might want some music. The answer was to put it on one of those narrow hospital tables with the base that rolls under the bed and the top that comes over the top of the bed. There was an extra one in the outer room so we used it. It could be rolled into the opening between the two rooms so that Gay and her guest could hear it at the same time. It was also in a place where I could keep it fed with tapes or C.D.s. That emptied all, but one of the laundry baskets and part of the next. That was enough for one night. I settled down to relax when a nurse we hadn't met yet came in the room. Her name was Pam. She said she would be Gay's night nurse and then announced that x-ray was ready for us. This came as a little of a surprise. It was about 8:00 and we had assumed they would not take Gay until the morning. We were wrong. Pam gave us directions and went down to third floor to the x-ray department where we sat in the waiting room for about fifteen minutes. Then a technician escorted Gay into a room and took the pictures. It was a little after nine when we got back to the room. Pam met us on the way into the Unit and said she would be in soon to look at Gay's dressing. She thought it might be best to put on a clean one. She also wanted to take Gay's vitals and draw blood. The time had come for Gay to enter the space she would occupy for the next 166 two months. We instinctively came together for a close embrace and then she stepped across the threshold with a dramatic flair. She changed into her pajamas and tossed her first set of dirty clothes out for me to do something with. I converted a plastic bag I got from the nurses station into a laundry bag and stored it in the bottom of the closet. When it got full or Gay ran out of clothes, I would take it home and do some washing. Pam came in wearing a white gown and turned the fans on high, then entered Gay's space. She first took Gay's temperature and checked her blood pressure and pulse. She then took a stethoscope from a hook at the end of the partition and listened to her heart and lungs. When she was finished, she announced that Gay's vitals were all normal. She then changed the dressing on Gay's neck and chest and said both wounds looked clean with no sign of infection. The next job was to draw blood. She twisted the end of a syringe on to the connector at the end of one of Gay's two Hickman lines. She drew back on the plunger, but no blood came out of the line. She asked Gay to raise one arm and then the other. That didn't work either. She suggested Gay roll on her right side. With this movement, the blood flowed slowly into the syringe. "I hope we don't have this kind of trouble the next time," Pam commented. "Sometimes these Hickmans can be touchy and we have to coax them along. In a few cases they don't work at all and we have to replace them." On this sober thought Pam breezed out of the room. I stepped over to the Laminar control panel and cut the fans back to low. By this time it was after 10:00 and we were both ready for bed. In a lull somewhere in the evening I had called Mom and Jack to tell them of our progress and give them Gay's phone number. They said they would be up the next day. I had other people to call, too, but thought I could do that on Tuesday when it sounded like things would be less active. I kissed Gay good-by at the entrance to her room and watched her climb into bed. She had the bed spread in place. I smiled and headed out the door on my first of many trips down elevator D at the end of a long day, and out across a darkened drive to the parking garage. I felt alone. I opened the map that Beth had prepared for me and gave it a quick study while I still had the lights of the garage, then laid it on the seat next to me. It wasn't as good as my regular navigator, but it would have to do until she was back. I arrived at Tom's and Beth's house after only missing one turn. They were both in Minneapolis looking for a place to live when they moved up there in June for Tom's 167 fellowship. Aslan, their black, one hundred ten pound Rottweiler was at a friend's house while they were away. They would all be back the next day. In fact it would soon be the next day and I needed to get some sleep, but I was not sleepy yet. There were too many things going in my head. I had brought a briefcase full of reading I never have time to do at the office. I selected a piece I thought would be particularly boring, got a bottle of beer from the refrigerator and climbed into a warm bath. It worked. I got sleepy in about fifteen minutes and headed for the bed. 168 CHAPTER XI RADIATION TREATMENT PHASE I woke very early. The house was quiet and the traffic hadn't started outside in the street yet. I missed Gay, but thought she might not appreciate my barging into her room at 4:00 in the morning just for her company, so I lay in bed thinking about what the next few days would bring. There was no way to forecast how well Gay would tolerate the radiation. Over the years we had heard scary tales about what terrible things it could do to your body. But, the world is full of both good and bad information. The trick is to know which was which. Now we were going to find out for ourselves. Finally at about 5:30 I got up, dressed in a comfortable shirt, jeans and sneakers and selected another piece from my briefcase for reading over breakfast. I had brought a cereal I liked, but found to my delight, from what was in the refrigerator and on the kitchen shelves, that Tom and Beth liked the same breakfast food I did. At about 7:15 I headed the car toward the hospital, at least I thought the hospital was in the direction I turned. After two blocks I discovered I would have to reverse course unless I wanted to end up in the next town. The rest of the drive went easily. When I got to Route 6 at the bottom of the hill, I found the traffic running smoothly and merged left into it, turned right at Hawkins Drive and up the hill to the hospital. Not too bad, I thought, but I would have done better with my navigator. I said good morning to Rhonda, the Unit clerk, as I put on a pair of blue booties at the reception area. I was to learn how important Rhonda was to the operation. She knew where everything was and kept the administration running smoothly. I crossed to Gay's room and found her sitting on the edge of her bed, dressed in a sweat shirt and pants and ready for the day's activities to begin. At about ten minutes before our 9:00 appointment in Radiology, Kate appeared at the door. "I'm going to be your nurse again today," she said with a cheery smile. "Are you ready for your first day in Radiology?" "I think so," said Gay. "Are you going to take us down?" "You bet and I have your chariot ready to go" She pointed to a wheel chair with a bunch of clear plastic piled on top of two bars that extended over the top of the 169 chair like an umbrella. Gay came to the opening of her room and asked, "Can I come out now?" "First you have to put on this gown, a mask, gloves, head cover and foot cover. All of this is to help keep germs away from you. Your immune system isn't down yet, but it soon will be so we're going to start the precautions now." She had brought each of these articles with her and handed them to Gay one at a time as she put them on. When she was finished, I said, "Gay, you look great. Let's take you for a ride." "I feel a little like someone from another planet about to get into her space mobile." Gay walked over to the wheel chair and positioned herself in the seat. As Kate started preparing the chair for the journey she noticed I was watching closely to see how she was doing it. "You want to know how I do this, don't you," she said. "I'm glad to see that. It could be helpful sometime for you to know. Each nurse has her own way of doing this and each thinks hers is the best." She smiled and said, "I'll show you the way I do it. I know it's the best." She slowed her movements so I could clearly see what she was doing. Kate first reached in beside Gay and pulled out a plastic tube. She handed it to her and explained, "There is an oxygen bottle on the back of the chair. When I turn it on the oxygen will flow out of this tube. That's the way you're going to get air inside this tent." She then pulled the extra folds of the plastic tent down from the framework on top of the chair and tucked the bottom under Gay's feet and pulled the edges around behind Gay's lower and then upper legs. She unfolded a white blanket and put the top part in Gay's lap over the plastic and wrapped the rest of it around her legs. She then tucked the edges in around Gay hips so it provided warmth and a barrier to the outside. "You'll see other nurses putting the blanket under the plastic, but I think I get a better seal by putting it outside. If Gay gets cold, we can put one inside as well. Now we're ready to go." 170 I smiled at Gay through the plastic. I could see her imperfectly through the crinkly plastic. She smiled back. "I really do feel like the woman from outer space now." she quipped. I had to admit she looked the part, sitting in her plastic bubble with a white cap covering her head, blue mask over her nose and mouth, white gown over her body and finished off with blue booties on her feet. "Would you like me to drive?" I asked Kate. "Sure, that would be fine and I'll carry Gay's records. We can't do anything without those." Kate lead us down to the first floor, through the lobby and down the hall to another building where we found Radiology. On the way Gay said, "Jan told us a few weeks ago that I would have a primary and a secondary nurse. Do you know who those are?" "They haven't been selected yet. I put in to be your primary nurse yesterday and I understand someone else has also requested you. That's pretty unusual. The nurses rarely ask for a patient. That's quite a compliment." I could feel my chest swelling just a little on Gay's behalf. When we arrived at Radiology, the receptionist said we were expected and to go on back to the cobalt machine. Kate introduced us to the machine's operator, Diane, and went back to the Unit. We were in a hallway of the room housing the cobalt machine. A counter was built in against the wall that separated the hall from the cobalt room. The counter was at desk top level and had all of the controls Diane used to operate the machine. There was a television monitor to the left of the control panel that showed the inside of the room. Diane greeted us and motioned me to wheel Gay around the corner to the door of the cobalt room. As I caught up with Diane, she was pushing heavily on the tall thick door that separated the room from the hall. "This door literally weighs a ton, or more, she said as we entered the room. In fact there are tons of lead in it and in all the walls. There is also lead above and below the machine. All that lead absorbs the radiation and keeps it from getting out of this room. 171 "This machine is a cobalt machine, but it can also take regular x-rays. All we're going to do today is take some x-rays from the front and back to see exactly where your lungs are when you're in the position you'll be in tomorrow when we do the treatment." She unwrapped the blanket and plastic from around Gay to let her out of the chair. "I'm glad to get out of there," said Gay. "It gets hot in there." "I know it does," said Diane. "You may find it a bit chilly in here after awhile, though." She asked Gay to remove her sweat shirt and lie down on a platform that was raised only slightly off the floor. She then covered her with a sheet. The machine rose from the floor beside the platform to about six feet in the air and curved at the top so that the head extended directly over Gay's body. Diane positioned her carefully under the machine and explained to Gay that we were going to leave the room while the x-rays were being taken. I followed her out of the room and back to the control panel. We could see Gay on the TV monitor and Diane spoke to her through a microphone on the counter to tell her what she was doing. She took the x-rays from the front and back. We waited while they were developed to make sure they were all right. One wasn't, so we did a repeat and this time the film was clear. When we were finished, I wheeled the chair back into the room from the hall where I had stored it while the x-rays were being taken and tucked Gay back into the tent as Kate had done. As we were leaving, Diane asked Gay not to wear any rings or other jewelry for the radiation treatment the next morning. We decided to make our own way back to the Unit rather than waiting for Kate to come get us. I got Gay out of the wheel chair and all the extra clothing she had on when we reached the door to her room. She went inside. I put on a pair of blue booties and followed her. Once again she was happy to be out of the confines and the heat of the tented chair. About an hour later Mom and Jack arrived and we spent from then until lunch telling them all of the rules, what we had done and what we knew of the schedule for the next few days. At 11:30 Jack was getting hungry so the three of us went to the cafeteria for lunch. In the few times that I had sampled the food in the hospital cafeteria, I felt it lived up to the reputation most hospital food has. It was bland and just not very good. We decided we would search out other alternatives. When we got back on the floor, I discussed this grave situation with one of the nurses. She 172 sympathized and suggested we try the Quad. That was a University dining room about two blocks across campus on the first floor of one of the dorms. She gave me directions. The rest of the day was fairly quiet. Gay took out several family photographs from an envelope she had packed and put them up on her bulletin board. I made a series of phone calls to our children who were out of town, to my office and to other friends to let them know how things were going and to give them the phone number to Gay's room. I finished the calls later that night when the people I couldn't reach during the afternoon were home. Shannon arrived later in the afternoon about the time Mom and Jack were ready to leave. We were well into hearing about her day when Robbie Steinbach stopped by. We had met Robbie and her husband, Jim, through the Duncans and become friends. Robbie was a professional photographer and was taking a Tuesday afternoon course in color at the University. We had a pleasant visit and she promised to return after her class on future Tuesdays. In the evening, after Shannon left for home, Gay and I watched a little TV. She, watching the screen on her side of the partition and I, craning my neck to see the set perched high up on the wall on my side. After about an hour we got bored with that and turned both sets off in favor of having our own discussion. I was learning how to position my chair so I could see her through the opening between the two rooms and carry on a conversation without the partition getting too much in the way. This worked, but not very well. I then pushed the smallest chair in the room through the opening to Gay's side of the partition. She put it between the foot of the bed and the bathroom wall facing me in the outer room. The chair just fit and the arrangement worked much better. It looked strange, but it functioned well. We both began to tire about 10:00 and we knew we had a big day coming up. I waited until she was in bed and headed for Tom's and Beth's. They had returned home a few hours before and decided it was too late to visit Gay. I let myself in the front door thinking they might be in bed. As I walked in, Beth greeted me from the couch, but before she could get up Aslan bounded out of the kitchen. With her size she covered the width of the living room with one leap and presented herself immediately in front of me. She leaned her body against my legs and reached her neck up to my waist so I could pet it. I did. Tom came down the hall and coaxed and pulled the dog to a sitting position a few feet away and then he and Beth 173 welcomed me warmly and made me feel like they were glad I was there. We spent the next hour talking. I described Gay's progress and schedule. Then they took turns telling me about their heroic house hunting in Minneapolis. They described how they had looked at over thirty houses in two days with disappointing results and then finally finding one they liked and making an offer. They would know if the offer would be accepted later in the week. The next morning I slept longer than the morning before and was happy for that. When I got to the kitchen I found Beth already there just finishing her cereal. Tom came to the table a few minutes later and Beth went to finish with her hair. Beth worked for the Cedar Rapids branch office of IBM and had an early appointment in Iowa City. She said she would be up to see Gay after that, if she could. I left the house before either of them did, making sure I gave Aslan lots of pats. I found Gay awake and ready to go when I arrived at her room. She decided to wear a hospital gown, figuring she would just have to take off anything she had on so she might as well make it a little easier. A few minutes before 8:00, Rhonda knocked at the door and said she would take us down to Radiology. Gay put on all the extra clothes required for external travel and climbed into the chair. Rhonda took us in the elevator to the third floor, then down a ramp that led from one building to another and at the same time dropped us to the second floor. Then to a second elevator and down the hall to Radiology. Rhonda explained that she liked this route because it avoided all of the people in the lobby and all the possible infection they might carry. Also the upper halls were less crowded than the ones on first floor. It made a lot of sense to me and I made a mental note to come this way in the future. Diane was ready for us when we arrived. Two men were standing with her. She introduced one of them as Dr. Wen, head of Radiation Oncology and the other was Dr. Jani, the head physicist. I wheeled Gay back into the cobalt room as Diane held the door open for me. Gay got undressed and lay down on the platform as she had the day before. She was cold now and Diane put a sheet over her. She also put a pillow under her head and another under her knees so she could bend them just a little for comfort. I suspected part of her chilly feeling was from the low temperature in the room and part of it from nerves. We were both apprehensive about how this treatment might affect her. Diane dimmed the lights in the room so that the shadow of a cross originating from the head of the machine was clearly outlined on the sheet. Diane used the shadow to move Gay a few inches in one direction and then another until she was lined up 174 perfectly with the machine. She turned the lights up again. She then pulled a low transparent table over Gay so its top was directly over Gay chest. There were four irregularly shaped lead blocks, each about three inches thick, off to one side. Diane confirmed that these were the lung shields that had been made for Gay the previous day. Diane now picked up one of them shaped in the form of Gay's right lung and positioned it on top of the table over Gays right lung. She did the same thing on the left side. When she finished, she explained, "These shields will block the radiation from your lungs, Gay, but they have to be in exactly the right place. I'm going to take an x-ray to see how close they are. I'll adjust them if needed and take another picture. Diane and I went back to the control panel closing the door behind us. She took the x-ray and I joined Gay while she was having the film developed. When she returned, she adjusted both blocks slightly and we returned to the control panel while she took another picture. This time she was satisfied the blocks were in the right spot. She took a black grease pencil and marked Gay's chest precisely where the shadow from the shields fell on her skin. This was so she could more easily place the blocks for the next treatment. Diane then asked Gay to turn over and she went through the same procedure on her back side. When all the positioning marks had been made on both sides Gay turned on her back again and Diane repositioned the blocks. She took one more x-ray to check position. That showed the shields were in the right place. "We're almost ready, Gay," announce Diane in a soft voice. "I'm going to ask one of the doctors to check how I have you set up. We always do that as a safety precaution. Then we can start." She left and soon returned with Dr. Wen. He kneeled down to closely check how Gay was positioned in relation to the machine and how the shields were placed. He stood up and told Diane she could go ahead and left the room. "We're only going to do the front side this morning. The back comes this afternoon. We'll be right outside the room if you need us. You have a microphone right by your head so if you want to talk to us just do it. I'll hear you. I can talk to you, too. We will also be watching you on a TV monitor. The machine will be on for twenty minutes and then will shut off. When it does you'll hear a loud clunk. Don't worry about it. It's normal. It just means the radiation has stopped. I'll be in right after that. Do you have any questions before we begin?" 175 "No," said Gay, "I think I'm ready, too. Of course I haven't been doing anything, but lying here. You've been doing all the work." Diane chuckled and we left the room. She offered me a seat at the control panel. She set a timer for twenty minutes and then asked Gay through the microphone if she was okay. We heard a "yes" from inside the room. This had two purposes. One was to reassure Gay that we were close by and in communication and the other was to make sure the intercom was working as it should. "We're beginning now, Gay," Diane said into the microphone, again in a soft voice. It seemed to me that this was a tone she had cultivated with experience to calm and reassure the patients. It worked well. While we were sitting there, Dr. Jani came up to the control panel and asked me, "Do you have any questions?" I thought it was particularly kind of him to ask and, as I stood up, I said, "I appreciate your asking. I do. Gay is scheduled to be on two different types of radiation type machines and I'm not sure what the difference is between them." "Let me explain the difference. There are two types of radiation machines, this cobalt machine and a linear accelerator machine like the one down the hall that your wife will be going to this afternoon. We designed the cobalt machine here at the University. This is the only one like it in the United States. There's one in Canada, too. There is a load of radioactive cobalt in the head of the machine. The cobalt is radiating all of the time so it has to be kept in a heavy lead safe that forms a part of the head. The radiation is started by sliding the cobalt out of the safe and into position above the patient on a motorized track. When the treatment is finished, the cobalt is slid back into the safe by the same motor. The cobalt provides radiation at a lower rate than the linear accelerator so it takes longer to give the same dose to the patient. But, the patient usually tolerates it better when given at a slower rate. "The linear accelerator produces radiation electrically by energizing electrons. It works much faster, but is harder to tolerate. Does that help?" "It certainly does." I thanked him for the explanation and sat down again at the control panel to see how Gay was doing. She was still lying quietly under the machine. Diane told Gay when there were ten minutes left and again at the five, two and one minute marks. She then told her that the machine was about to turn off 176 and reminded her that she would hear a loud clunk. We could hear it through the intercom as the timer automatically turned off the radiation. "That's the sound of the cobalt sliding back into the safe," she told me. We went back into the room. I got the wheel chair on the way. "How do you feel, Gay?" I asked. "I mostly feel tired. I think I went to sleep." "That often happens," offered Diane. "By the way, Gay, don't wash those marks off your chest or back. I'm going to need them again." Gay promised not to and I helped her off of the platform, on with her gown and into the wheel chair. Diane led us across the hall to the C.T. room, but it was in use so we had to wait. About thirty minutes later a man came out of the room . Diane saw him from her area and came across to introduce us to Earl. He took us inside the room. The C.T. machine was to the right as we entered. It looked a little like a round donut standing on edge on the floor with a seven foot long table raised between three and four feet above the floor that slid in and out of the hole in the donut. I helped Gay get up on the table. I could tell she wasn't feeling very perky at this point and hoped this procedure would go quickly. I think Earl sensed this too and didn't waste any time. He explained as he worked. "I'm going to put a row of barium cream right over the marks that Diane made." As he said this he opened Gay's gown so he could see the marks and began squeezing barium out of a tube onto the marks. "The barium will show up on the film we take to show us what areas are being shielded by the lead blocks. The machine will measure the distance down to your lungs in that area and I'll give those measurements to the operator of the linear accelerator machine so he can radiate that area, but not reach as far as your lungs." The barium was thick and Earl had to squeeze the tube hard to get it to flow out onto the marks. He finished in a few minutes and explained to Gay that when we began the scan the table she was on would move slowly into the hole and that we would be in the control room only a few feet away. 177 He led me up two steps and into a raised room that gave us an excellent view of Gay through a large glass window. The control panel was on a counter at table height just in front of the window. To the left was a monitor Earl used to see what part of the body the machine was scanning at any time. He sat down in front of the controls and offered me a seat between himself and the door. He checked the control settings and activated the machine. The table began moving into the machine. I could see some pictures coming through on the monitor. I was looking back and forth between the monitor and Gay, but mostly at Gay. Earl was doing the same thing, but with the opposite emphasis. I noticed Gay's left foot begin to twitch nervously. That was most unusual for her. "Earl, something is wrong with Gay." Earl looked up from the controls and through the window. He immediately sensed I was right and started for the door. I was out of my chair ahead of him and held the door. I figured he knew what to do with his machine and I didn't. Gay was getting sick in the machine and was trying to sit up enough so that the vomit would fall out of her mouth instead of back in her throat. There was a clear danger that Gay could choke. Earl reached her in only a few seconds, although we both seemed to be moving in slow motion. He pulled the table out of the donut hole and supported Gay's back to help her sit up. He pointed to a plastic pan on the sink to my right. I grabbed it and held it under Gay's mouth and changed places with Earl. He got a cold wet cloth and brought it over to me. I held it against Gay's forehead. She said it felt good and promptly got sick again only this time in the pan. Earl got another cloth and began cleaning up the machine. "I'm sorry I messed up your machine," Gay said weakly. Earl replied, "Don't you worry about the machine. It has seen a lot worse. You just relax as much as you can." Gay indicated to me that she was ready to try lying down again and I eased her back onto the table. Earl inspected to see if the barium was still in place on the outline of Gay's lungs. Some had come off so he repaired the damage with three or four squeezes with the tube. When he was finished he said, "Do you want to try it again?" 178 "Yes," is all we heard. I refreshed the cold cloth and put it back on her forehead. She nodded her approval. We went back into the control room and Earl reset the controls and started the machine again. The results showed up on the monitor and then I noticed Gay's foot begin to move again. "Gay's in trouble again," I called out. We were both in the room and by the table within a few seconds. Earl pulled the table out of the machine and I helped Gay sit up with her head over the pan. This time the vomit got all over Gay's chest and the clean-up pretty well eliminated the barium outline. At this point a young woman entered the room through the control room. Earl introduced her as a student learning radiology. She picked up a second tube of barium and helped Earl retrace the lines. Gay was lying patiently on the table all this time trying to relax. When they finished we tried it again and Gay got sick again. Earl turned to me and said, "Perhaps we should give up for now and try again later." I had visions of putting Gay through this all over again if we had to come back. I also thought she would live in dread of the return trip. I did not want to put my wife through that. I asked, "Do you have much more to get, Earl?" "No, I only have a few more views to get." "Let's give it one more try," I said. I dampened the cold cloth and put it on her forehead one more time and returned to the control room. Earl set the controls one more time and started the table into the machine. Several more views rolled up on the monitor. The table was in fairly far this time. Gay got sick again and tried to raise up in the machine. Again we rushed to Gay's side. Earl pulled the table out while I guarded Gay's head from hitting the side of the machine and made sure she didn't fall off the the narrow surface of the table. I looked across the table at Earl. He nodded his head and said, "I have what I need. We don't have to do this again." 179 I let out a long breath of relief. "We're done, Love. I'm taking you back upstairs." I thanked Earl for his quick action each time Gay got sick and Gay apologized again for vomiting all over his machine. I got Gay back in her wheel chair and tucked the plastic and blanket in place. I then went back to turn on the oxygen flow. Gay reported that none was coming out. I went to the reception area and asked if anyone knew how to switch the valve and hose to the spare tank on the back of the wheel chair. A nurse soon appeared who made the change-over only to find that the second bottle was also empty. She disappeared to find a full bottle. I said something not very kind under my breath about lack of preventive maintenance when she reappeared carrying another bottle. We put it in the bracket in place of one of the empty ones, attached the valve and turned it on. The oxygen flowed. I thanked the nurse several times and headed back to the seventh floor. I wheeled Gay back to her room and helped her to the opening of her inner room. She made it thankfully to the bed from there. I then went to find one of the doctors. Dr. Lee was sitting at a desk in the administrative area. I told him of Gay's reaction to the radiation treatment. He was concerned and asked, "How many times did she vomit?" I mentally recalled each time and said, "Four." "Has she had any diarrhea?" "No, at least not yet." "Well, I think she has lost enough fluids to be dehydrated. We should give her some fluids through the Hickman. We can do some other things too. I would like to see her." He closed the report he was working on and we crossed to Gay's room together. He washed his hands and then took one of the white gowns from the hamper under the counter in the outer room. While he was doing that, I washed my hands. He turned the fans on high and went in to talk to Gay. She told him essentially what I had. He told her what he was going to give her, but I couldn't hear much of what he said above the noise of the fans. When he came out, he turned the fans down to low again and explained to me what he was planning. 180 "We will start giving her fluids now and will also give her some compazine to help quiet her stomach. Before going down for radiation this afternoon we will give her some Ativan." "What does Ativan do?" "It should relax her and make her sleepy. She probably won't remember if she does get sick." "Why is that" "Ativan produces short term amnesia. She won't remember many of the things that happen while she's taking it." That startled me and I asked, "Is that a good idea?" "The drug is very effective at calming patients so they don't get sick. We find that most patients like not remembering it when they do." I wasn't convinced that inducing amnesia was a good idea, but I did like the part about giving Gay relief from vomiting. When Dr. Lee left I checked Gay. She looked like she was asleep, but perhaps just resting quietly. Either way it was good. I sat down in the high backed chair closed my eyes and put my head back. I found that the morning had been physically and emotionally draining for me too. I hadn't realized it until just then. I was just about asleep when a nurse came in with an IV stand and a bunch of tubing and a bag. "Hi, I'm Janis. I want to hook Gay up so we can run in some fluids and some Ativan." She looked at Gay as she positioned the pump just outside the opening to Gay's space. "Is she awake?" Gay stirred on the bed and squinted through her eyes. "I'm awake." Janis washed her hands and put on a white gown and went in to hook the IV line to Gay's Hickman. She already had the line threaded though the IV pump. There was enough line to reach from the pump to the bed and as we found out a few minutes later, enough to allow Gay to use the bathroom with the door closed without dragging the pump in with her. Janis dialed in the speed she wanted and turned the pump on. After she was satisfied it was functioning correctly she left. 181 I put my head back on the chair and was almost asleep again when Mom and Jack arrived. They saw Gay was resting and came in quietly and sat down. I told them of the mornings radiation treatment and the C.T. machine. I also repeated what Dr. Lee had said could be done to help. I didn't feel very hungry at lunch time, but since Gay was sleeping I went with Mom and Jack to try out the Quad. There was no doubt about it; the food was a lot better than the hospital cafeteria. I was certainly glad to know that for future reference. Shortly after we got back, Janis came in to tell me that Gay had two visitors. I went to the reception area and found Laura Rovang and Penne Duncan struggling with the blue booties. I took them into the lounge, which happened to be right next to Gay's room. I first explained the visiting rules of the hospital and then recounted the last two and a half days. I indicated that Gay wouldn't be able to see them right then and probably not for the rest of the day. Since they were such special people to Gay I took them into her room so they could see her surroundings and know where to picture her. Gay opened her eyes long enough to give a weak smile and a feeble wave and then closed them again. We visited in the lounge for awhile longer and then I saw Janis go into Gay's room and knew it was time for the afternoon radiation. I thanked Laura and Penne for coming. They said they would be back soon and often and that it would be okay if Gay wasn't able to see them. They just wanted to be available when she did feel like company. I thought that kind of support was pretty hard to beat. They watched from the lounge as we prepared Gay for the journey and waved her good-by. She waved back from inside the plastic tent. This time we not only had the wheel chair, but also, the IV stand to maneuver on and off elevators and down halls. Janis pushed the wheel chair and I handled the stand. I found that the stands are very top heavy with a pump mounted half way up and heavy bags of liquid hanging from the top. One good bump along the way could send the whole rig flying. When we got back to the cobalt machine Diane ushered us into the room and explained to us what was going to happen in this session. "This afternoon, Gay, we will just radiate you from the back side. The machine will be on for twenty minutes. Do you think you can lie on your stomach for that long? Some people have difficulty doing that, especially if they don't feel well. I heard what happened to you this morning and I'm really sorry. Are you feeling any better now?" 182 "They gave me some stuff that's really making me sleepy. I think I'll be okay." Diane got a plastic pan and put it by Gay's head in case she needed it. She then used the same care she had in the morning to position the lead blocks, only this time it was over Gay's back. Dr. Wen checked the positioning again and Diane and I went to the control panel in the hall. In twenty minutes the treatment was complete and I got a sleepy Gay back into the wheel chair and headed down the hall to the linear accelerator machine. I thought to myself that Gay was acting like she was drugged. On second reflection I knew she had been. We had to wait quite awhile before they were ready for us. Finally they let me wheel Gay into a big room with a big radiation machine at one end of it. There were several people attending this machine. They positioned Gay on the table and we went out to the control area outside the room. The operator showed me that he had dialed in the measurement gained through so much effort that morning. The machine was on only momentarily and they were ready for her to turn over to do the back side. Another short blast and we were free to go back to seventh floor. We were finished for the day and glad of it. The operator said he would call the Unit for some help. I appreciated that. I didn't want to try handling the chair and the IV stand at the same time just yet. Perhaps with more practice, but not now. Janis arrived shortly after that and we wheeled Gay back upstairs. This time I took the chair and she the IV stand. Mom and Jack greeted Gay with sympathy and praise when we arrived. Gay smiled appreciation and lay down on her bed. They headed for the Quad Cities and home shortly after that and I sat down in the high back chair once again. I was nearly asleep when Tom and Beth came through the door. Well, I thought to myself, a nap is just not to be this day. "Wow, this place is the pits," exclaimed Beth as she took a look around. "It looks just like a hospital room. Something serious needs to be done about this. You need a few pictures on the wall, a lamp on the table, but I like the bedspread." While this was going on Tom was washing his hands and smiling at me. When he was finished, he motioned his wife to do the same. She sashayed over to the sink. "I forgot. Tom, you'll have to keep reminding me of the right things to do." "I'm trying, Dear, but sometimes you're a challenge." 183 Beth tossed the paper towel in the waste basket and dropped in the high backed chair. "Well, Gay, how has your day gone?" Gay raised the bed up to put her in a sitting position. She couldn't help, but laugh at Beth's breathless entrance. I did too and it felt good. Beth was right on target about one thing. The bedside table needed a small lamp. We had discussed this the day before, but there had not been time for me to do anything about it. Gay picked up the theme. "I think a lamp would be a great idea. These overhead fluorescent lights are too harsh and too bright." Beth look down at the back of her hand. "Ya, and they also turn your skin a funny color. I don't like them, either. A lamp would soften the room and give you enough light to read by if you wanted to. It would also make it a little more homey in here. God knows it could use the help. I'll see to it tomorrow." I told them all the things that had happened during the day and we heard about their day. Shannon arrived in the middle of this discussion and we heard about her day. After a short while I remembered the three-person rule and suggested Tom and Beth continue visiting while Shannon and I went for dinner. Shannon thought that was a great idea. I took her to the Quad. She agreed it was superior and was proud of me for finding it, especially the apple pie. When we returned, Tom and Beth had gone, but the doctors were making rounds and had just gotten to Gay's room. Roger said they planned to give Gay Reglan that night and the next day to control stomach spasms and would continue with the Ativan and compazine. I told him I had some misgivings about giving Gay a drug that caused loss of memory. He confirmed that one of the side affects of Ativan was amnesia. He was not concerned about it, however, because the drug was generally effective and most patients who experience the same thing as Gay generally didn't care to remember it. He said, "Many patients just try to sleep though this whole period of radiation and chemotherapy. If they can do it, that's fine." Shannon left about an hour after the doctors did and Gay and I had the room to ourselves for the first time since early morning. It felt good. Gay relaxed back against the bed and I took up my position in the high back chair again. One of us would have an idea and express it. Then we would be silent. Then the other would 184 think of something, then quiet. This relaxing chatter went on for about an hour when the night nurse, Mary, came in to take vitals and draw blood. The vitals were fine, but she couldn't get any blood out of the Hickman. "I can't get it to work," she said a little disgusted. 'I'm going to ask Dr. Lee to try. He can usually make the Hickman work when we nurses can't, and he's a doctor. He doesn't do this very often and we do it all the time." She wrinkled up her face and added, "It makes us so mad." Dr. Lee came through the door about fifteen minutes later followed by Mary. The fans went back on high and the two of them went in with Gay. "The Hickman won't work, Gay? I hope I can get it going." He was not successful on the first try and had Gay move her arms, sit up, lie down, roll right, roll left. As I watched her go through all of these motions, I thought that I would not want to be doing the same things if I had put in the day she had and felt the way she felt. She had been in every position, but upside down. I got a little strange sort of humor out of that last thought, but the humor turned to surprise as I watched the foot of the bed go up in the air and the head go down. Dr. Lee was adjusting the bed to its new position. He must have been reading my mind. She was now nearly upside down. That would be enough to make anyone sick, I thought. I was proud of Gay. She just kept doing as Dr. Lee asked, but still no blood would flow from the Hickman. Dr. Lee finally gave up with sadness. He knew that if the line would not work in the morning they would have to replace it. He explained, "Mary will have to draw blood tonight from your arm, Gay. We can't do that for long. We have to take blood so often and give medication that we must have the Hickman working. If we can't get it to go tomorrow, we may have to replace it. If we do, it should be done before you get much further into treatment." Dr. Lee and Mary left. Mary returned with a needle attached to a syringe and drew blood from the vein in the crook of Gay's left elbow. She then departed saying she wouldn't have to disturb Gay again. I stood in the opening to the inner room and Gay settled back against the bed. The head of the bed had been left in the raised position when Dr. Lee gave up on the Hickman and Gay now lowered it to horizontal. She turned her head toward me. I could see she had tears in her eyes. "I hope the Hickman works tomorrow, so I don't have to go back into surgery. It made me very nervous Monday and I don't want to go back in." 185 She arranged the pillow under her head and closed her eyes. I backed up a few steps and sat down in the high back chair. Gay never complained about something like this unless she was truly apprehensive. She was now and it distressed me greatly. It also frustrated me because I wasn't sure there was anything I could do to help. I suspected my mind wouldn't let this go until there was a resolution. I also knew Gay was physically and emotionally exhausted and hoped she could fall asleep. I sat quietly waiting to see if that would happen. The fan was whirring away on low speed and a single light below the TV to my left cast the room in shadowy illumination. Time passed and Gay hadn't said anything or moved for quite awhile. That suddenly changed. "Oh, no," she cried and Gay threw back her blanket and tried to get out of bed. By the time I understood what was happening Gay was on her feet beside the bed. "I can't control it." She was shaking with a chill and sobbing. She had a stream of diarrhea coming out of her pajama legs onto the floor. I grabbed a white gown out of the hamper and put it on. I then went to her and untangled the IV line that had wrapped around her as she got out of bed. At this point a nurse came in and asked what was wrong. I told her and asked if she could get something for Gay to wear to replace her pajamas. She said she could and left. The diarrhea would have to run its course and then she would need help cleaning herself up. I knew Gay felt she had been stripped of her dignity as a human being by this loss of control and didn't want anyone else around until she had regained control and, with it, her sense of pride. I lead Gay into the bathroom. I remember thinking, "I hope the nurse doesn't come back until this is finished. Washing Gay is my privilege and I don't want anyone else to do it." Gay didn't either. I put a towel in the sink to soak up some warm water. I then helped Gay out of her pajamas and used the warm towel to clean her up. As I was drying her with another towel the nurse came in with a pair of hospital "greens" like she was wearing and extra towels. I dressed Gay in them and got her back under the covers. I then cleaned up the floor in the bathroom and by her bed and put the towels in the dirty linen bag in the outer room. I washed my hands several times, put on a fresh gown and went back to Gay. She was no longer shivering, but was sobbing softly. I held her for awhile and then got a cold wet wash cloth and wiped her face and hands and the put it over her eyes. She said it felt soothing. I got another one and put this one on her forehead and stroked her head to try to relax her. 186 After several minutes she looked up at me in the dim light and said in a whisper, "I love you so much, Demi. The only reason I'm going through this is so I can have more time with you. I know I wouldn't do it if it weren't for that. I wouldn't do it just for me." That was the highest compliment any one had ever given me. Silent tears rolled down my cheeks. This was the most tender moment Gay and I had ever shared. I wondered if the Ativan would keep her from remembering it. I stayed with her until she was asleep and then went to Tom's and Beth's for my own rest. They were in bed when I got there. I soaked in a hot tub reflecting that this had been one of the longest days I could remember. The warm water made me sleepy and I went to bed. When I left the house the next morning, I took my laundry with me. I had gotten a call two days before asking me to return to the office for an important Friday morning meeting that couldn't be put off. I had much of the information to be presented at the meeting so it was necessary for me to attend. I promised that if things were going well at the end of the day Thursday, I would be there. If they weren't, I would have to miss the meeting. I knew that Mom and Jack would volunteer to be with Gay for the treatment scheduled for Friday morning. I figured I could drive home Thursday night, toss Gay's and my laundry in the washing machine, get ready for bed, switch the load to the dryer and go to bed. The next morning I could throw the laundry in a bag, make my contribution in the meeting and return to the hospital by 1:00, before Gay's last radiation treatment. I chuckled at the insanity of trying to make all that happen and then put it out of my mind until it came time to make the decision later that day. Gay was just waking up when I arrived in her room the next morning. A breakfast tray was on the table untouched. She told me she had tried to eat earlier when the tray came in, but couldn't. "How did the night go? Did you sleep through?" I asked. "I was up twice with diarrhea, but it was the more controllable kind, not like when you had to help me. That was such a helpless feeling. I was glad you were there. They gave me some Lomotil after you left. I think that helped. The nurse came in again at around 4:00 to take my vitals. She came back a little while ago to draw blood. The darn Hickman wouldn't work again. They tried, but it just wouldn't give blood." 187 Janis was Gay's nurse again this morning and she came to the door a few minutes before our appointment in Radiology with a tented wheel chair. I helped Gay put on her "space suit" and get into the chair. Janis and I worked together to tuck the plastic and blanket into place and then headed out for Radiology with the wheel chair and the IV stand in tow. Diane met us and led us into the cobalt room. She explained, "This morning we're going to give you total body radiation on both sides. First we'll do the front side for ten minutes and then the back for ten. We won't use the shields. We're finished with them. We will do the same thing this afternoon. She went through the same procedure as the day before except without the lead shields. She turned the machine on for ten minutes on the front, repositioned her and did another ten minutes on the back. Janis came back down and we transported Gay back to the floor. This session had been much faster and Gay was feeling more like a human being at the end of it even though the dosage had been the same both days. About twenty minutes after we got Gay back to her bed, the doctors came in on rounds. Roger flipped the fans on high and went in to check Gay's heart and lungs and to ask her how she was doing. He then came back out and we cut the fans to low so Roger, Gay and I could all hear one another. "You know that we can't get blood out of the Hickman. We can get fluids in, but can't draw blood out." Gay nodded her head from a sitting position on the bed and I replied, "We do know that. Why do you think we can move fluids in, but not out?" "The tube from the Hickman goes inside a vein right at the color bone. The vein curves downward to the heart from there. The tube has to make that same turn inside the vein, but sometimes it isn't pushed far enough along to make the entire turn. That can leave the opening at the tip of the tube right up against the inside wall of the vein. Fluids can be pumped in because the force of the outflow from the tube will push the wall out of the way to let the fluid by. But, when you try to pull blood out, the sucking action can bring the wall of the vein right up to the tip, and close off the opening to the tube." "If that's the problem with Gay's Hickman, can the tube be manipulated past the curve at this point?" I asked. 188 "Sometimes the surgeons can do just that. We want to get this corrected today, if we can, so we can start using the Hickman. We have asked the surgical clinic to work you in today, Gay. They will try to work the tube around to clear it from whatever is obstructing the flow of blood. They're not planning on putting in a new Hickman at this point. They couldn't tell me when they can take you, but they promised before 5:00 this afternoon." With that the doctors went on to the next room and Gay curled up to rest. Between the lack of sleep the previous night and the Ativan, Gay was pretty sleepy. Mom and Jack arrived about 10:00. We talked off and on. Gay would join in and then fall back to sleep and then join in again. She was asleep at 11:30 so the three of us went to the Quad for lunch. When we got back to the room, Gay was stirring. She said she was feeling quite a bit better. I told Mom and Jack about the meeting at the office on Friday morning and said if Gay continued to do well, I would attend, otherwise not. Mom asked if I wanted them to be with Gay for the Friday morning radiation treatment. I said I would appreciate that very much and it was agreed. Beth breezed in at this point. "Well, I did it," she exclaimed as she put a box on the floor and went to the sink to wash her hands. "What did you do, Beth?" Mom asked. "I bought a lamp for this place." Gay raised the head of the bed to put her into a sitting position. As she came up she said, "I want to see it." Beth reached down and popped the top of the box open and pulled out a cute little lamp with a round ivory colored base with a blue flower design. She put a beige shade on it and held it up so Gay could see. "That's wonderful. It matches the bed spread perfectly. How did you manage to do that?" "I just stopped by Target during my lunch hour and there it was saying, 'Buy me, I match Gay's spread.' So I did." 189 "I think it's great," added Mom. "I think so, too," I chimed in. "It will certainly be an improvement over these bright fluorescents." Jack just sat there with a smile on his face, not sure if he really wanted to join in on this adoration for a pot-bellied lamp. Beth put the lamp on the counter and I promised to fit it on Gay's bed side table a little later. She visited with us for about thirty minutes and then departed with a flourish for a meeting. "I think she's a good addition to our family," Mom said with a giggle. "Puts a little life into things." We all agreed. It was approaching 2:00 when Janis arrived at the door. The wheel chair was still standing outside from the morning's ride. Mom asked if she could come along. I said I thought she would find the operation of interest and Gay and I encouraged her to join us. Jack said he would stay behind. He had an article he wanted to finish. We returned to Radiology. The procedure was the same as it had been in the morning. Diane sensed Mom had an interest in what she was doing so she explain as she went along. We were finished in a little over thirty minutes and returned to the Unit. Gay had very little chance to rest when we got back to the room because soon there were two nurses from Surgery outside the door with a cart to transport her to the clinic. Mom and I went with her, dragging the IV stand beside the cart. Jack stayed in the room. We carried on a three-way conversation while we waited outside the operating room. We discussed the fact that this should be a much simpler and less painful procedure since all they were going to do was manipulate the Hickman line rather than installing a new one. She was still nervous about going in, but had her brave face on by the time we wheeled her through the door about fifteen minutes later. Mom and I found a couple of chairs in the outside hall and waited there for a little over thirty minutes for the operation to be completed. When they were finished, we took Gay back upstairs with the help of the same two nurses. 190 Cameron and his friend, Dave, were waiting for us in the room. Gay greeted them on the way to her bed. After she was back in bed I asked her how it went. She turned her head toward me on the pillow and said, "They told me they pushed the tube in further and took an x-ray to see where it was. They thought it looked okay." Then she closed her eyes and went to sleep. The boys and I went for dinner and enjoyed some of that apple pie at the Quad. When we returned, Gay was still asleep so we visited in the lounge next to Gay's room. Cameron then took Dave up to the eighth floor to look at the art and said they would leave for home after that. I went back into Gay's room and found Mary once again trying to draw blood through the Hickman. She couldn't do it. Dr. Lee came in to try. Another failure. When they left, Gay looked at me and said, "I wish this thing would work. It doesn't look like it's going to. I guess I'm going to have to go back down to surgery for them to try again. I didn't want to to do that, but if that's what it takes, that's what I'll do." She gave a little shiver and turned on her side away from me. It was a brave speech. She had screwed her courage up for this twice before and was now beginning to build it up again. "I guess you're right, Gay," I said, "but perhaps there's something we can do to make it work this time." I went out to the administrative area and asked Georgia, the Unit clerk on nights, to see Gay's record book. She found it easily and helped me look up who had put Gay's Hickman in the first time and who had adjusted it earlier in the day. As nearly as I could determine a second year resident had done the original placement and Dr. Al Jurf, the head of surgery, had made the adjustment. I found Roger in the doctors' room and sat down with him to discuss the situation. "Mary and Dr. Lee have tried to draw blood through Gay's Hickman with no success." "Dr. Lee just told me. I'm afraid we will have to replace it." "How soon do you think they can do it?" 191 "It won't be any earlier than tomorrow afternoon. I suspect they have the morning schedule set. The surgeons are usually in the main operating room in the morning and don't get to the clinic where they do the Hickmans until late morning or early afternoon." "From what I can see, Roger, a second year resident installed the Hickman on Monday and Dr. Al-Jurf did the manipulation today. I assume that whatever the problem is, it has its origin with the original installation done by the resident." "Your probably right, Harry. That's one of the disadvantages of a teaching hospital. Maybe no one else could have put it in any better, but I suspect that a more experienced surgeon would have installed it so it worked." "Can we arrange for a staff surgeon who is experienced with Hickmans to do the job tomorrow? We're dealing with a woman who has been weakened by radiation treatments and feels rotten. Surgery is a scary prospect for most people and it certainly is for Gay. We've sent her into surgery twice and now we're going to send her back a third time to get one job done that is supposed to be fairly routine. I don't want to put her through that any more. What can we do to give her the best chance for success this time?" I hated to put this all at Roger's feet. It wasn't his fault. In fact, he was doing everything he could to make this transplant a success. But, he was the only one I could think of who would be able to make this kind of interdepartmental arrangement in a large organization like this hospital. He could clearly see I was very concerned for my wife and he was too. He thought for a moment and then responded. "I think this would be a fully justified request in Gay's situation. I'll make some calls in the morning. I think it can be arranged." I thanked Roger for his concern and went back to tell Gay of our conversation, emphasizing that I thought Roger would be able to get a top flight surgeon on her case. That seemed to ease her concern and help her build confidence. I just hoped he would be successful. Gay went to sleep shortly after that. About 10:00 I went out to the administrative area and told Georgia that I would be at my home that night in case I was needed and gave her the number. I then took Gay's laundry bag in one hand and my briefcase in the other and headed for the car. 192 To my amazement and delight, the events from then until early the following afternoon went according to plan. I drove home, did the laundry, attended the meeting at Deere & Company and returned to Gay's room by 1:00 PM. Gay was resting on her bed when I arrived and greeted me with a half wave. She then closed her eyes again. Mom and Jack told me that the morning's radiation treatment had gone just as it was supposed to and Gay didn't get sick. Beth had stopped in mid-morning for a short stay and Tom had spent time with Gay over lunch. They also said that Gay would have a new Hickman put in that afternoon, but the surgical clinic was unable to give us a time. We had chatted only a few minutes when the nurse came to say there were two visitors to see Gay. I walked into the hall and found Kathie and Laura putting on blue booties. I knew Gay was tired, but thought she might want to see these two friends so I went back into the room and asked her. She got a smile on her face that told me I had been right. Both of them had been in touch with Gay and me by phone, so knew most of our progress. I brought them up on the last twenty-four hours. When they came in Mom and Jack both recalled the rule about no more than three visitors at a time and said they would be in the lounge. Kathie presented Gay with a packet of cards that her husband, Jim, printed on their home printing press to look like business cards. "Gay's Place" was printed in the center of the cards with "Open 10 to 10" directly underneath. The cards also gave the room number, address and phone number. It was a novel idea for a gift and very useful at the same time. We both got a big kick out of them. Kathie and Laura told us about what was happening in their lives and the lives of some of our other friends in the Quad Cities. After about thirty minutes, they could see Gay was wearing out and took their leave. Gay enjoyed the visit, and so did I. Sue Howes dropped by for five minutes just to introduce us to Bet Hannon, the assistant chaplain at the hospital. They could also see Gay was tired and cut their visit short. I walked them out to the entrance of the Unit. The nurse gave Gay some Ativan just before time for the 2:00 radiation treatment to relax her and to decrease the chance that she would get sick. Mom, Jack and I went down with Gay. The treatment went just as the three before it except this time Diane shortened the time Gay was radiated on each side to account for the time she had been exposed under the machine while the x-rays were being taken on the first day. Dr. Jani told me that Gay received two hundred rads of radiation in each twenty minutes of exposure. That meant she had a total of twelve hundred rads in 193 the three days. In the reading I had done, it indicated that the standard dose before undergoing a bone marrow transplant was between one thousand and fifteen hundred rads. That put Gay's dose at the lower end of the middle. That seemed about right to me. When the treatment was finished I helped Gay into the wheel chair and out into the hall to wait for someone from the Unit to help us back upstairs. A few minutes later I saw Linda Wagner round the corner from the reception desk close behind a man in hospital greens. Gay was pretty groggy, but she recognized them both through the plastic. "Hi, Linda. Hello Steve," she said. They both greeted her and then Steve and I shook hands. This was Steve Locher, the nurse Gay and Linda had met at the support group a few weeks before. I introduced Steve to Mom and Jack. Gay was getting very hot inside the tent and it was time to get her back to the floor and out from under the plastic. I was already in position behind the wheel chair and Steve offered, "Let me take the stand." He straightened out the IV lines running from the pump to Gay and signaled me he was ready. We got Gay back to her room and into her bed without further delay. She was pretty dopey and went right to sleep. I checked with Rhonda to see if we had a time for surgery. They hadn't called and she thought they would probably just appear to take Gay down without warning. I went back to the room and reported this to Mom, Jack and Linda. Mom and Jack waited for awhile and then decided to go since there was no way of knowing when Surgery would be ready for Gay. I brought Linda current with what had happened since we had arrived on Monday and she asked some pretty penetrating questions about how the two of us were coping. Gay and I hadn't really focused on how, but rather, we were just doing it. It was interesting to try to dissect some of the "how". It made the time go fast and we soon found two people at the door with a cart to take Gay to Surgery. I woke her and she put on her protective clothing. This process didn't go very quickly because it was difficult for her to function against the effect of the drugs. When she was ready, I helped her on to the cart. The two nurses powered and guided the cart and I followed with the IV stand with Linda following close behind with Gay's records. 194 I knew Gay was still apprehensive about this third trip to surgery. This session would really involve two procedures instead of one. They were to completely remove the faulty line and put in a new one. To do this they would have to make a new incision in Gay's chest where the line would come out from under her skin and another at the neck to feed the line into the vein. I felt powerless to help her and could find no more words to reassure her any more than I already had. The drugs were helping to mask her disquiet. I thought it would be easier to take her place than to watch her mental anguish. When the door to the operating room closed behind Gay, Linda and I returned to Gay's room to wait for her return. A little after 5:00 two nurses wheeled Gay right into the room on a cart. Steve saw them coming from the hall and followed them in. He thought Gay might need some help and he was right. Gay was unsteady as she tried to sit up and Steve helped her down and into her bed. He sympathized with her. "It's a shame that first Hickman didn't work. That happens sometimes, but I'm real sorry you had to go through that, Gay. I'm sure this one will work fine. I'll be back a little later and we'll try it out." With that he hurried out the door to see to another patient. Steve projected a genuine sense of caring what happened to Gay. I appreciated that. Linda sensed I might want to be alone with Gay for a moment and stepped out of the room. I went to the opening to the inner room and asked, "How are you feeling?" This was anything, but a social question. I wanted to know. I could see her face outlined against the white of the pillow. It was an ashen-gray color and she looked drained. She looked up at me and said, "I feel like I've been beat up," as she fought to hold the tears back. "You have been, "I said. "No one could go through what you have and not feel that way." She looked to see if anyone else was in the room, but it didn't matter. She couldn't hold back the emotional distress any longer. She burst out crying. I couldn't stand by in that opening any longer. I was going to break my own rule again. My place was ten feet further into that room with my wife and that's where I intended to be. I pulled a white gown from the hamper and jammed my hands into the sleeves. I wasn't a fashion plate, but I was covered. 195 I went to the far side of the bed and pulled Gay up close to me and held her there a long time while she sobbed with her head against my chest. After awhile she stopped and I eased her back down on the bed and got a cold wet wash cloth from the bathroom and started wiping her face. I told her a joke that I had remembered from somewhere and she gave me a weak smile as if to say, "Thanks for trying." Linda came back into the room at that point and I said, "I'm trying to cheer her up, Linda, but my jokes aren't very funny. Do you know any good ones?" "Goodness, no," she laughed. "I can't remember them much less tell them." I turned back to Gay and said, "I guess we'll have to do without." She smiled briefly and burst into tears again. I held her close for a long while. She sobbed and then stopped and then started again. It was heart-wrenching for me to see Gay in such distress and I felt helpless to console her. I just cried along with her. Finally I felt her muscles begin to relax as I held her, and she slept. I went back out and sat in the chair opposite Linda. "I don't know what to do, Linda," I said in some frustration. "You're doing it, Harry, you're doing it," she replied. Those were the right words at the right time. Gay slept until Dr. Lee came in about an hour later. He talked to her about the surgery and gave her words of encouragement. He then checked her heart and lungs, which had been a routine practice since the first day. He fast was becoming a valued member of our team. Steve was the next person through the door. "I have all the stuff I need to draw blood and I'm sure that Hickman is going to cooperate. As he said this, he flipped the fan switches to high and went into the inner room. He talked to Gay as he worked, explaining what he was doing. He connected the syringe to one of the Hickman lines and drew back on the plunger. I could see blood flowing freely into the syringe and gave a little cheer and clapped my hands in applause. "They did a real good job on this one," Steve said with a smile of satisfaction on his face. "This draws as nicely as any I've seen." 196 Gay's face lit up with the joy of relief as she realized she didn't have to make another trip to surgery. It was a happy moment. Steve told us he would be Gay's primary nurse and that Kate would be her secondary. He explained that he had come back on duty the previous night after three days off, but had been assigned elsewhere. He was assigned to Gay starting that night. He would work twelve hour shifts for three more nights and then have three days off, then switch to days. He said that some of the nurses worked the more common eight hour days, but he, and many of the others, preferred the twelve hour shifts. He felt it was easier on the patient to have only two nurses in a twenty four hour period instead of three and he could make better use out of three days off in a row than the more normal two-day weekends. He would have one eight hour shift occasionally to make the hours worked over a period come out right. I thought to myself that I might have some trouble switching from nights to days and back again. I also thought that Paula, the head nurse, must have a real challenge scheduling the nurses. Gay was wide awake by the time Steve left and remembered something she wanted to tell me. "While you were gone this morning, shortly after Mom and Jack arrived, a nurse came into my room to ask me a question. She didn't have a white gown on, or booties, and Jack got very upset with her for breaking the rules. He felt she was putting me in danger and told her so." "I don't know what that's about, but I'll try to find out. I can see Jack doing that when most people wouldn't raise a question. I think Jack has lived by the rules all his life and he feels other should do the same. If there's one person I would trust as a watch dog over your safety, it's Jack. He'll challenge authority if he thinks it's wrong. I would guess there's an explanation. I'll check it out." I stepped into the hall to see if there was anyone around to discuss this with. Roger saw me and motioned me to one side. He said he had been trying to catch me all afternoon. He told me the same thing Gay had related and then explained. "I know that Jack knows the rules very well. You've explained them to him and I suspect he's read the handout that Jan wrote." "Yes, he and Mom both have," I confirmed. "When we originally set up these Laminar Air-Flow rooms we developed a set of rules we thought would probably be over-cautious. We felt we could change them 197 as we got more experience working with them. A short time ago we did change the rule about wearing gowns and foot covers in the inner room. Now a nurse may bring a new pair of shoes to the Unit and wear only those shoes when working. All the nurses wear a clean set of hospital greens every shift. If they wear a gown over the greens and foot covers over their shoes any time they leave the Unit, then they can go into the inner rooms without the gown and foot covers. Their greens and shoes should be as free of contaminates as if they wore the gowns and foot covers all day. Most of the nurses still cover up when they go in with a patient from habit, but the one Jack saw today did not. She was abiding by the new rules, but, of course, Jack didn't know that. That's our fault and we need to rewrite Jan's hand out." "I certainly appreciate knowing that, Roger. I'll let Jack know and will explain it to Gay so she knows." "I'll make it a point to tell Jack the next time I see him, too," said Roger. I returned to the room and related all of this to Gay and then called Jack at home to tell him the same thing and to thank him for being so watchful. Roger came in a little later with a broad smile on his face. He talked to Gay and me at the same time from the opening in the partition. "I understand the Hickman is a success." Gay propped herself up on one elbow and said "It sure is, Roger, I'm going to keep this one." "I appreciate whatever you did to get the right person on the job. Dr. Al-Jurf put the new one in and apparently did it quite well." "I'm very pleased it's working. It had me a little concerned there for awhile." "You know," I said, " when Gay got so sick after that first treatment of radiation I thought we might have that to contend with after every treatment, but we haven't. She hasn't been feeling great, but she hasn't gotten sick again." "There are probably two reasons for that. One is that we have been giving her medication to calm the stomach and to relax her. The other is probably as important. We have found that the body often adjusts to the radiation after the first treatment. I'm not sure just how this happens, but I'm glad it does." 198 Gay fell asleep a little after nine and Linda headed for her home about thirty minutes later. She had been a big help to me during the last few hours and I appreciated it. My thoughts turned to all of the visitors we had had that day and others. I found myself mulling over how it had gone up to now and questioning if changes should be made. I had been concerned about how to control visitation for some time. I knew that a lot of people would want to see Gay and would make an effort to travel the distance from the Quad Cities. Having too many people coming and going could drain physical and mental energy from Gay that she would need to fight this battle. But, Gay was a social person. She loved being around people and her friends were a real and valued source of energy and emotional uplift for her. My protective instincts suggested I keep visiting to a minimum to allow plenty of time for Gay to get a lot of rest. Other instincts told me that would be terribly counter productive. Over the past week I had hit on a strategy that seemed to fit Gay and produce the desired result. When a visitor would come I would meet them outside the room, or carry the first part of the conversation in the room, to tell them what treatment Gay had undergone, what was left to do and what Gay's energy level or tolerance for visiting was if that was an issue at the time. Then when they talked with Gay, they could visit about more pleasant things that would have a cheering effect. They would also be more sensitive to when Gay was wearing down and could judge the length and intensity of their stay accordingly. The strategy seemed to work well. Most visitors appreciated having a medical report without having to ask for it, and especially without having to ask Gay for it. Also, nearly everyone was very careful not to overstay. The only time we ran into some difficulties was when too many people came at one time. When that happened, I would try to diplomatically suggest that some people take in the art on the eighth floor or wait in the lounge while three at a time visited Gay. Gay had also received a lot of phone calls each day. I would answer the phone from the extension in the outer room and at the same time determine if Gay felt up to talking. If she did, I would give the medical update and then she would pick up her phone and continue the conversation. Sometimes I would remain on the line depending on who the caller was. If she didn't, I would give the medical update and tell them Gay wasn't up to talking. Everyone seemed to understand. The system had been developed more by trial and error than by preplanning. As I sat there in the dimly lit outer room, I thought that it seemed to be working and this seemed like a good time to keep doing whatever worked. 199 I was left now with thoughts of our journey and the wonderful woman I was traveling with. That combination suited me just fine. We had come a long way since Monday. The radiation treatments were behind us and the chemotherapy would begin tomorrow. It dawned on me that the morning would come soon enough. It would be Saturday and Tom, Beth and I had planned an early morning breakfast at a local pancake house, but not too early. That sounded like a pleasant break from high fiber cereal and yogurt. On that lighter note I headed to Tom's and Beth's for a long hot soak in the tub and bed. 200 CHAPTER XII CHEMOTHERAPY PHASE I woke up about the same time as usual on Saturday morning, but stayed in bed for a little longer just to enjoy the quiet of the early morning. After awhile I heard the sounds of Beth letting Aslan outside and decided that was probably my cue to start the day. I was looking forward to a pleasant chat with Tom and Beth. We all converged on the living room at the same time in a lucky piece of good timing and headed out for our treat. I followed them over to the restaurant in my car so I could go from there directly to the hospital. When we arrived, we found that half the town had the same idea we did. A man put Tom's name on a list and promised us the wait would not be long. It wasn't. We were seated in about ten minutes and had a tasty breakfast. We spent the next forty-five minutes telling stories about some of the crazy things that had happened to each of us over the past years and laughing a lot at ourselves. It was a good break. I arrived on the seventh floor at about 8:30, put on a pair of blue booties and headed across to Gay's room. She was up when I walked in. "Hi", she called over the constant drone of the fans, "How was your breakfast?" "It was very nice. I had a big waffle that was more than I could eat and, as a bonus, had a good chat with Tom and Beth. They told some stories about the early days of their marriage that kept me laughing. Each one reminded me of some of the funny things that have happened to us over the years so I swapped them one for one. The time flew and here I am. But, the question is, how's my Love this morning?" "I'm feeling pretty good today, a lot better than yesterday." "That was rough, but the nice thing about yesterday is that it marks the end of the radiation treatments. I'm glad they're behind us. Now we only have one more phase before you get Tom's bone marrow." At that thought, Gay let out a little shout, "Wahoo, I'll be glad to get there." "In terms of days we're half way there. We came in on the fifth and the transplant should be the fifteenth," I observed. 201 "What's the date today? I've lost all track of the days." "This is Saturday the 10th." "Oh, that does put us right in the middle, doesn't it?" I saw Roger and the other doctors starting rounds on my way in. I would guess he will be giving us more detail on the chemotherapy you'll be getting over the next few days." "I got a lot more cards and letters yesterday. I didn't feel much like looking at any of them then, but I was happy when I remembered them this morning. Some are addressed to both of us, but I think you would be interested in all of them . Some of them are really funny. I don't know how the card people think of these crazy things they put on cards, but you'll get a kick out of them." As she spoke she handed the pile through the opening to me and I sat down in the high back chair to read and chuckle and to read some more and be thankful to all these people who took the time to remember us. Gay expressed the same sentiment. "It's so nice of all these people to write. I don't know some of them very well and yet they took the time to send a card. That makes me feel special." "That is exactly how they want you to feel. I think you are special," I said with a smile. I got an immediate smile in return. I was about three-quarters of the way through the cards when Roger, Dr. Lee and Dr. Maloo walked in. We exchanged greetings and all three washed their hands. Then Dr. Lee turned the fans on high and Roger went in to find out how Gay was feeling and check her heart and lungs. Then he came back to the opening between the inner and outer rooms so he could talk to us both at the same time. Dr. Lee cut the fans back to low. "I think you're just doing great, Gay," Roger began. "I know the radiation was difficult and having to put up with a Hickman that didn't work was an unfortunate experience, but you're handling it all very well. Your spirit is superb and I think that's a big part of the battle." 202 "Thanks, Roger, I didn't feel like I was doing all that well in the middle of yesterday, but I'm glad you think so. It's nice to hear." "We're going to start the chemotherapy tonight. We will give you four different drugs over the next four days and then give you a day of rest before the transplant next Thursday. That's the fifteenth. You can circle the date on your calendar." "I already have, Roger," she said as she pointed to the calendar on the wall in the opening going into the inner room. "Harry put that up on the first day so we could keep track of all the people who come to see us." Roger was leaning against the wall with the calendar behind him as he spoke. He turned around and took a long look. "Are these all the people who have visited you since Monday?" "Yes, "responded Gay with a big smile. "I have some nice friends." "And a lot of them. I would say you are fortunate. We see some sad cases of patients who have very few visitors; some because they come from so far away that their friends can't come and others because they don't have that many people who want to see them. "It would be hard to go through something as trying as this alone," I observed. Roger turned back to us and continued his explanation. "Tonight at 8:00 we will start with BCNU. You will get that drug only once. At 8:00 on Sunday night we will start on Ara-C and give you four doses twelve hours apart. On Monday afternoon at 2:00 and at the same time on Tuesday you'll get VP-16. The last drug will be Cytoxan. We will give you one dose of that Tuesday night at 8:00. This drug can cause a great deal of irritation to your bladder so we will run a catheter into your bladder and continually flush it with a saline solution. We will be using dexamethasone during this period as well. No more chemotherapy after Tuesday night. "Then we'll bring Tom in on Thursday morning and take about 5% of his bone marrow. We should be ready to give it to you by sometime that afternoon." "Roger," I asked, "what's the reason for the delay between the last chemotherapy and the transplant?" "We need time for the chemotherapy to dissipate before administering the new bone marrow. If there is too much of the drug in Gay's body when Tom's bone marrow 203 goes in, a lot of it could be killed before it gets a chance to engraft. We will be using some chemotherapy after the transplant to help control graft versus host disease, but we'll do that on a very controlled basis. I'll tell you more about that in a few days when we get closer to day zero." "What kind of side effects would you expect?" asked Gay. "It varies with each patient, but some of the more common side effects are nausea, vomiting and diarrhea. Your mouth will most likely become sore to the point of not being able to eat. That soreness could go on for some period. It will be important to keep up the mouth care. Your taste buds are not going to function as they normally do so food isn't going to taste good for two to three weeks. We will be feeding you through the Hickman. We can maintain your present weight through IV feeding. You could also experience fever and chills. You will probably lose your hair, too. The drugs could affect your heart and lungs, exhibited by shortness of breath or rapid heart beat. We will be watching you closely for these signs. Your energy level will probably decrease substantially and you may feel weak and tired part of the time. Two of the drugs can bring on a yellow cast to the eyes and skin. "We will try to counteract possible vomiting and diarrhea with drugs. Some of them, like Ativan, will also make you sleepy. Many patients just sleep through most of the chemotherapy and wake up at the other end saying the whole experience really wasn't too bad. If you can do that, it would be fine." Roger paused and I took the opportunity to ask a question about the drug names. "We will probably look these drugs up in a book we got on various drugs used in chemotherapy. It sounds like most of the names you gave us are brand names. They seem too easy to pronounce to be generic. Could you give us the generic names so we can find them in the book?" "Sure. BCNU is Carmustine, Ara-C is Cytarabine, VP-16 is Etopside and Cytoxan is Cyclophosphamide." "Thanks, Roger, it took most of my tablet page to write these long words down." "If you have any questions after you look them up, let me know when I make rounds tonight." 204 After Roger and the other two doctors left, I looked at my notes and discovered that I had written very fast as Roger was speaking and thought it would be wise to make a chart of the chemotherapy schedule before the notes got cold. I wanted a quick reference of when the drugs would be given to help me anticipate how Gay might be feeling at various points over the next four days. This would help me tell would be visitors when might be the best times to come. CHEMOTHERAPY SCHEDULE Saturday Sunday Monday Monday Monday Tuesday Tuesday Tuesday March 10 March 11 March 12 March 12 March 12 March 13 March 13 March 13 8:00 PM 8:00 PM BCNU Ara-C 8:00 AM Ara-c 2:00 PM 8:00 PM VP-16 Ara-C 8:00 AM Ara-C 2:00 PM 8:00 PM VP-16 Cytoxan (Requires catheter) The rest of the day was quiet by comparison with the last five we had spent. Mom and Jack came for several hours through the middle of the day and Shannon came late in the afternoon. She had just finished her finals and was about to start one week of semester break. She wanted to spend that week helping her mom in any way she could. Tom and Beth offered her their couch so she wouldn't have to make the drive back and forth. She accepted. She also told me she was worried about me. She thought I needed a change from the constant vigil at the hospital and felt she could find some diversion that would provide a break in the tension from time to time. I didn't feel this was a problem, but I also thought I might not recognize it as quickly as someone else close to me might. The fact that she was concerned was a help in itself. Shannon's clothes were in the car and she was pleased at the prospect of being able to be a part of the process. I was glad for her company. Cameron still had school so he was going to take over responsibility for the house and the dogs. Toward the end of the afternoon Steve came in with a long white piece of paper with red numbers printed on it. "These are your blood counts from yesterday. I'll tack them up on your bulletin board, Gay, so you can keep track of them easily. 205 You can see them, too, Harry, through the partition. You see, the hemoglobin is a little low, but the white counts, segs and platelets are well within the normal range. They may stay up there for another few days and then will drop sharply. By the fifteenth the white count and the segs will be all, but gone. Then we will be watching very closely. For the first fifteen to twenty days after transplant the white count won't do much and then they should start to climb. This period can be discouraging for some people because you keep thinking the counts should be coming back, but they usually don't for two to three weeks. When they do start to recover, they will increase a couple of tenths and then fall back, then increase a couple of more tenths and fall back again. Then you may see a day or two where the counts double and double again. That's really exciting to watch. When that happens, you know the new bone marrow is beginning to function." We had been playing the game for five days, now we would start seeing the score. The days, and nights, had gone by so fast that one laundry basket was right where I had left it Monday night, still waiting to be unpacked. This would be a good time to do it. Gay was in favor of the project and we devised places to stash most of the items and finally left a few things in the basket that wouldn't fit neatly anywhere, like the water color supplies. During this process I found three envelopes of photographs Gay brought to put on the wall. There was not enough room for all of them so I sorted out the ones I thought Gay would like the best. I put on a white gown and pinned them up on the bulletin board behind her TV. While I was in the inner room I arranged her books on the window sill beside her bed. When I finished, I stepped back into the outer room and Gay inspected my arrangement. She made two changes and pronounced the mural of photos and the book placements to be just right. The new additions did add color and warmth that the space didn't have before. Shortly after this task of interior design was completed, Gay's dinner tray came. She didn't feel like eating any of it, but suggested Shannon and I go out for dinner while she rested. Both of us were hungry, especially Shannon, so we headed for the Quad as Gay lowered the bed closer to the horizontal position. After we returned, Steve came in with another pump and clamped it to the IV stand. This one would be used to pump in the BCNU. By 8:00 the chemotherapy was running down the IV lines, through the Hickman and into Gay's veins. We had started on the last phase prior to transplant. 206 When I arrived at the hospital the next morning I found Gay awake. She told me that Karen Schroeder would be her nurse for that day and that she had worked at St. Luke's in Davenport. She also said that she would be in momentarily to show her how to clean and dress her Hickman. Gay hadn't felt up to learning the procedure until this morning, but now was ready. Karen came in a few minutes later with all the sterilizing and dressing material needed to do the job. I introduced myself before she flipped the fans on high and went in with Gay. Gay was sitting on the bed with her back to me and Karen was in a chairs on the far side of the bed. I was standing in the opening watching the procedure. Gay and I had agreed I should learn the procedure so I could do it for her if she was too sick to do it after she returned home. Karen must have sensed this because she suggested, "If you want to learn this why don't you come in and I'll teach you both at the same time." I put on a gown and brought a small chair in and put it next to Karen's facing Gay. Karen and Gay began taking the tape off the dressing that was over the Hickman where it entered her chest and winced as she did it. When the tape was off I could see angry red skin underneath. "My gosh, Gay," I said. "that skin looks awful. The tape is tearing you up. I don't think your skin can take much more of this tape." "It sure hurts. There's no doubt about that." When we get to that point, I'll get a stretchable netting to fit around your chest. We'll see if we can use that to hold the dressing in place instead of tape." Karen then showed us how to clean and sterilize the area where the Hickman came out of Gay's chest and then how to make a dressing for it. When she was finished she got a role of stretchable netting that was in the shape of a long cylinder, but packaged in a role about as wide as a role of toilet paper and twice the diameter. She cut off a piece about twelve inches long so that it resembled one of those tube tops some young ladies wear in the summer. Karen cut arm holes in the tube and Gay slipped it over her head. The dressing was located between her breasts and it soon became apparent that the netting was not going to work as well as we had hoped. It stretched from one breast to the other over the top of the dressing and put very little pressure on it to hold it in place. It was better than having the tape tear up her skin any further so she used it, but had to periodically adjust the netting and the dressing to keep it in place. This was a problem waiting for a better solution. Gay consulted a few of the other nurses and doctors over the next couple of days, but none was found. When Steve came back on duty two days later he suggested that Gay cut a hole for each breast so that the netting would lay directly against the 207 dressing. She did it and it worked quite well. It was a very simple, but effective solution to an irksome problem. Each morning of the following week I helped Gay clean and dress her Hickman. She didn't really need my help most of those mornings, but we worked in partnership anyway because it gave us something to do together and made me feel useful. The four days of chemotherapy went smoothly without any dramatic incidents. The drugs were all administered according to the schedule Roger had given us. Gay was not eating anything by the day of the transplant and was being fed and hydrated entirely from plastic bags hanging from IV stands. During this period and for some time afterwards, Gay had two IV stands and each had two pumps clamped securely to it. This meant she could have four different chemicals flowing into her veins by pump plus others that could drip in just through the force of gravity. Fluid was being dripped in on a continual basis to keep her from getting dehydrated and food was given in two forms. One was a yellow colored fluid that contained vitamins and nutrients. The other was a white fluid that had a high fat content for calories. The amount and timing was determined by what and how much she ate each day. She wasn't eating anything during this period so the dietitian's calculations were fairly simple. She was also getting Compazine, Ativan and Reglan prior to the chemotherapy to help prevent stomach upset. When they administered Reglan they usually accompanied it with Benadryl to counteract the tremors that Reglan can often cause. Lomotil was given to lessen the severity of the diarrhea Gay suffered. As I watched what was happening from one day to the next it became clear that the entire transplant procedure required the use of many different drugs. Each of these substances had an important primary mission to accomplish in Gay's body, but many also had some potentially dangerous or uncomfortable side effects we wanted to avoid. Gay was monitored very closely to make sure each drug was doing its job and to prevent the unwanted side effects. The nurses were in several times each day to check Gay's vitals, to administer all the required drugs, and to monitor the waste products in the bathroom. The doctors were in two and, sometimes, three times each day to check on Gay and more often if there was a problem. The drugs had to be scheduled with care because, in some cases, two drugs might coexist successfully once they were within the body, but would result in a dangerous chemical reaction if they came together in an IV line. They had to be scheduled to prevent that. 208 I found myself fascinated by all of the bags, bottles and tubes that were hung from the IV stands at any one time. Some of the lines had to be run through a pump and others could be run in without a pump. Whether they went through a pump or not, all of the bags and bottles had to have a line to connect them to Gay's Hickman. The nurses accomplished this by stringing together a series of clear plastic valves to form a long narrow junction box. A separate IV line was then connected from each bag or bottle hanging on the IV stand to a valve in the junction box. A single line was then run from the junction box and connected to the Hickman. The flow of each fluid could be adjusted, turned on or turned off by the valve. All of the lines had a second mechanism for adjusting the lines. It was a small roller clamp that could be used to squeeze the IV line partially or completely closed. That clamp had to be released before the fluid would flow. Many of the lines also had a small port built into them that could be used to inject a drug directly into the line from a syringe. In other cases there was a clear plastic cylinder about eight inches long built into a line. When this cylinder was used, it was connected to the IV line just below a bag of saline solution. Drugs could be injected into the cylinder and mixed with the solution before allowing it to run into the IV line and on to Gay's veins. It was extremely important that none of the lines become contaminated and transmit infection to Gay so they were completely replaced every twenty-four hours. To accomplish this the nurses had to make up a new junction box and connect all of the lines from it to a new set of bags and bottles. This all took place in the Medication Preparation Room before bringing the rig into Gay's room to hang. When there were only one or two bags to deal with, the task was relatively straight forward, but when there were several, it often became quite complex. In these cases, the nurses had to carefully plan out which drugs would require a pump. Then they had to know which drugs would be administered when and how long it would take to run each one into Gay's body so they could effectively utilize the pumps. The final trick was to carry the whole rig to Gay's room and hang it on the IV stands, then connect the main line to Gay's Hickman. Sometimes when they came in to make the changeover, it looked like they had a big bunch of tangled spaghetti with several bags sticking out here or there. They always managed to unravel it, though , and get Gay hooked back up successfully. The longer I watched the operation in the Unit, the more I came to appreciate what a vitally important role the nurses all played in Gay's care. Gay and I asked them many questions, some of them extremely complex, and they all willingly shared their knowledge and understanding with us. I suppose many patients and family 209 members are not concerned in the details of the process, but Gay and I wanted to understand it as best we could and they helped us do that. Gay slept during much of this four day period she was taking the chemotherapy as Roger had suggested she might. She often felt nauseated and had diarrhea that was moderated by the Lomotil, but didn't get sick to her stomach. Besides the staff going in and out of the room, we also had eight or more visitors each of these four days leading to the transplant and numerous phone calls. I found myself playing gatekeeper part of the time, but these friends gave Gay a real lift by their presence and concern. We took pictures of them with a point and shoot camera that was perfect for the job. Some of our guests put on a show for the camera and gave us a good laugh when we got the shots developed. The best ones went up on Gay's picture wall. Shannon was as good as her word. She treated me to a movie Sunday afternoon while Mom and Jack stayed with Gay and then out shopping for a few hours later in the week. She was right. These occasions did provide some relief. Gay's blood counts were posted on the chart on Gay's bulletin board. The white count stayed in the normal range through the thirteenth. I was beginning to wonder if they would remain strong through the fifteenth and force us to postpone the transplant. For some reason the counts for the fourteenth didn't get posted, but the white count fell to nearly zero on the fifteenth. On Tuesday afternoon Robbie Steinbach came by after her afternoon class and presented Gay with a beautiful black and white photograph she had taken of a sailboat with the jib full out to its port side and the main sail full to starboard. She called it "Wing on Wing" and hoped it would add a little spark to the room. In deed it did. I immediately fastened it to the bulletin board so that both Gay and her visitors could enjoy it. On Tuesday evening, before administering the Cytoxan, two nurses inserted a catheter through Gay's urethra and into her bladder as Roger had told us. They then began to flush her bladder with a saline solution so the Cytoxan could not collect there in a concentrated enough form to cause any damage. The next step was to start the Cytoxan dripping into the IV line. The catheter caused Gay a little pain after it was first inserted, but that subsided within a short while. It also gave her the continual sensation that she had to relieve herself. The feeling was quite intense at first and decreased over time, but never completely went away until the catheter 210 was removed the following day. This was the last chemotherapy before the transplant and Gay had suffered only mild side effects, compared to what we thought they might be after our experience with the radiation treatments. We were thankful for that. Wednesday was the day of rest, with no chemotherapy before the transplant. It was different than the other days for three reasons. Gay had made it through the chemotherapy without serious incident. We were optimistically looking forward to the transplant the next day and Gay was more awake without the effects of the sleep inducing drugs. After Roger examined Gay on his rounds that morning, we had a three-way discussion. "I can certainly see irritation in your mouth and I'm sure it extends to the GI tract, probably from the Cytoxan." "Well, my mouth hurts, I know that," responded Gay. "The outer mucus membrane that forms the lining of your mouth is beginning to die from the chemotherapy. As that happens, the dead cells slough off and expose a very tender new layer underneath. This puts the nerves closer to the surface than they were and causes pain until the healing is complete. If this becomes severe, we will give you some morphine to make the pain tolerable. "You may feel some stomach upset a little later. The chemotherapy has also killed many of the cells of the mucus membrane lining your stomach and intestines. As those dead cells slough off, the new lining underneath will become irritated and could cause diarrhea and vomiting." "Your blood tests show a somewhat elevated blood sugar level. That's to be expected and not something to be concerned about unless it persists. We will give you some insulin to bring that down." "Your white cell count is low and will continue falling rapidly. It will be near zero by the time of transplant. Your immune system is no longer effective. When your segs reach five hundred, we will start you on three broad spectrum antibiotics, Vancomycin, Tobramycin and Mezlocillin, and keep you on them until your counts come back within the normal range. That will happen today. We are doing our best to keep any airborne germs from reaching you with all of the precautions in and around this room, but an even bigger danger is all of the bacteria that are already in your body. You can coexist with them very well as long as the immune system is 211 functioning. But, as soon as it is no longer effective, those bacteria can cause infection and do some real damage. Our objective with these antibiotics is to keep the bacteria under control. They may not completely prevent bacterial infection and you may experience some low grade fevers as bacteria try to grow, but these three drugs should keep them controlled. The two more common causes for low grade fever are blood transfusions and the body's reaction to the killing of the mucus membrane in the GI tract by the chemotherapy. "These antibiotics won't prevent infections caused by viruses, however. Medical science is still looking for effective ways to medicate against viruses. The AIDS research is making some progress, but we have a long way to go." "They're also not effective against funguses. If your temperature goes above 38.5 degrees centigrade, that's 101.3 degree Fahrenheit, we will automatically start you on an antifungal medication called Amphriteron. Studies have shown that, if your temperature goes above that level, it is most likely caused by infection. Since you will already be taking the antibiotics, we will assume it's an infection caused by a fungus. The Amphotericin may cause you chills, Gay, but the body adapts to it in most cases. If we have to use the drug we will give you a test dose first to see if you have a reaction before we administer it at full strength." "I've tossed a lot at you this morning. I think we can give you some more details on the bone marrow transplant tomorrow morning after we harvest Tom's bone marrow, but do you have any questions about anything else?" "I do," said Gay. "Several times since I started the chemotherapy I've felt down in the dumps for some reason. I should be happy that things are going well and we're nearing the transplant date, not depressed." "I suspect the Dexamethasone is causing you an emotional let down. The last dose of that was given last night, so you should see improvement soon." We had no more questions so Roger departed leaving me with several more pages of notes. He also left both of us with a better understanding of what to expect after the transplant and an explanation of why Gay had felt emotionally down. Shannon returned home the night before to start a paper that was due right after she returned to classes. Mom and Jack arrived mid morning as had now become their routine, and left around 3:30. Penne and Laura came by for a couple of hours in the afternoon. Beth joined us in the early evening and said that Tom would probably 212 stop by after he finished his rounds elsewhere in the hospital. Gay was resting at this point with the bed in a half-sitting position. She told me earlier that she wasn't feeling too well so I was not surprised that she gradually faded from the conversation and closed her eyes to try to sleep. Without any warning, I sensed Gay was in trouble. I looked up to see her struggling to get out of bed. I got out of my chair and stepped around Beth to grab a white gown out of the hamper and pulled it on over my clothes. I asked Beth if she would tell Gay's nurse. When I reached Gay, she had just gotten to her feet and was standing by the side of the bed with watery diarrhea flowing to the floor. I untangled the IV line and led her to the bathroom. Together we got her out of her soiled hospital green pants and got her to the stool. She said she was going to throw up and pointed to a yellow pan behind me. I gave it to her and held her forehead as she vomited into the pan. She started to sob with the frustration of having no control. She felt as if she had been stripped of her dignity as a human being. It was a repeat of the night after her first radiation treatment, except more severe. I had the same feeling as I had that night. I didn't want anyone else taking care of her while she was in this dignity-robbing state and she didn't, either. Fluids were being pumped into her through her IV lines and she was excreting it as fast as her involuntary muscle could manage it, through her eyes, mouth and fanny. We could laugh at the image later, but it wasn't funny at the time. The nurse came in and decided she couldn't do anything additional to help Gay so she left to get some clean bedding to change the bed. I asked her to bring an extra blanket. Gay vomited four more times and continued with the diarrhea for several minutes. Then her muscles began to relax and it was over for a moment and then hit her again. Finally it subsided and I was able to clean her up with warm wet towels and help her into fresh hospital greens. She was beginning to shiver with a chill and I held her close to me and rubbed her back while we waited for the nurse to return. She relaxed and then tensed with a new chill , then relaxed again. The nurse returned and handed me a blanket that I used to wrap around Gay. She then quickly changed the bed and I got Gay back into it. I returned to the bathroom and soaked a wash cloth in cool water and used it to wipe her face and sooth her forehead. She said it felt good so I kept doing it until she fell into a restless sleep. I returned to the outer room and thanked Beth for getting the nurse. Tom came in a little later and we talked quietly while Gay slept. Then they headed for home. Tom was going to check into the hospital early the next morning as an outpatient and wanted to get a good night's sleep. I followed about 11:30. 213 CHAPTER XIII TRANSPLANT DAY I woke early the next morning. Tom and Beth were already up and ready to step out the door when I arrived in the kitchen. Beth was going to drive Tom to the hospital and then home again when he was released to go. This was the day he would give his bone marrow to his sister and he was plenty excited by the prospect. They left me to my cereal. They were both very positive about what the day would bring as they headed out to the car. I was anxious to get to the hospital to see how Gay's night had gone after I left. When I walked in, I noticed that she had an extra blanket on. Gay has always needed more clothes on to keep her warm than most people, but we had noticed that she had been feeling substantially colder since the radiation treatments. "Good morning, Love," I said. "How are you feeling this morning?" I'm okay now, but I was feeling pretty punk a while ago." "Did you get sick again?" "I woke up sometime after you left and had two more bouts with diarrhea, but not the uncontrollable kind. I made it to the bathroom both times. "I just dozed after that and woke up early this morning. It was just getting light out and I could see things in the room okay. I found myself just staring at the wall, asking myself, "What am I doing here? What have I let myself in for? I started to cry. I knew my bone marrow was all dead and there was no turning back and that made me cry more. It was a desperate feeling I couldn't explain." "I wonder if your still feeling the emotional effects of the Dexamethasone?" "It may be, but it's miserable to feel that way." "How are you feeling now?" 214 "I'm not feeling as depressed as I did, but my stomach isn't doing too well and my intestines started rumbling a few minutes before you came in. I've just been lying here hoping it will go away, but I don't think it will." She lay her head back down on the pillow and I finished washing my hands and sat down. My mind turned to wondering how Tom was doing and if Roger was extracting his bone marrow yet when Gay got out of the bed quickly and headed for the bathroom. She started to gag before she got to the door, but made it inside before getting sick. I put on a white gown and went in to help her. It was a repeat of the night before, only in a slightly milder form. Within thirty minutes she made the trip a second time. Then her stomach settled down and she began to feel a little more like a human being, weak, but human. At that point Roger came in the room with a big smile on his face. "Good morning, Gay, Harry." "Good morning, Roger, have you seen Tom yet this morning?" I asked. He walked to a position in the opening to the inner room so we could both hear him as he spoke. "Tom checked in early this morning and we just finished extracting some very nice-looking bone marrow. Tom gave you a lot, Gay. We can call him the 'Oklahoma Gusher.' We got about twice as much as we normally do and we will give you every bit of it." Roger was still wearing his smile and was obviously very pleased with how the procedure had gone. By this time Gay had raised the head of her bed so she was in a sitting position and listening intently. "How is Tom doing?" asked Gay. "He's fine. The whole procedure only took about twenty-five minutes and went very well. We blocked off the feeling to his lower body to do the procedure, but as soon as that wears off he will probably be up here to see you. The back of his pelvis will be sore for about a week and he will be tired for the rest of the day, and perhaps tomorrow, but he'll be fine other than that." "How long will it be before he gets the feeling back in his legs and can get around? "He should be able to move around in a few hours. I wouldn't look for him until mid-to-late afternoon. He was in very high spirits when I left him." 215 "Does the fact that Gay will get twice as much bone marrow mean that the marrow could take off twice as fast?" I asked. "I would think that would take the place of one generation of cell division." "It could very well speed up the engraftment." Roger then put his hands behind his back and leaned against the wall in the opening, as he often did, and continued, "Perhaps I should continue where we left off yesterday. I can give you an idea of what's going to happen today." I reached for my tablet and Gay responded, "Please do. I'd like to understand this a little better." "The lab should send Tom's bone marrow up mid-to-late afternoon, but before they do that, they will strain the clumps out of it so it will flow easily through the IV tube. They then treat the marrow with a monoclonal antibody, produced in a mouse's body, to kill all of the T cells that are in it. The T cells are the ones that attack foreign tissues. If we allowed all of them to go into your body with Tom's marrow, we would probably have a severe case of graft versus host disease as Tom's T cells attacked your body, Gay. Even with this treatment, we will infuse some of the T cells into your body, but because of there low number we expect they will not cause any harm. In time they will die off." "Roger," I interrupted, "I recall you saying earlier that we wanted some T cells to enter Gay's body to set up a controlled graft versus host disease. Where does that come into play?" "You're right, I passed that by too quickly. We took blood from Tom before we harvested the marrow. The lab will take the T cells from the blood and we will give you only about 1% of them shortly after running in the new bone marrow. The amount we'll give you has been determined by your body weight. These T cells are important in restoring immune function and in fighting any malignancy that may still be lingering in your system, Gay. They can also be helpful in stimulating the production of antibodies and by attacking disease and infection that enters your body. Unfortunately, those cells may also attack your tissue and cause some graft versus host disease." "What do we do to control the graft versus host disease?" I asked. 216 "That's the next step." He turned back to Gay. Tomorrow, after the transplant, we will give you a form of chemotherapy called Methotrexate. This drug will attack the most rapidly-dividing white cells first. Those are the mature cells that are tuned to Tom's body and are most likely to attack you, Gay. If we allow it to act for too long in the body, it will also begin to kill the younger white cells and the new white cells being produced by the new marrow. These cells should be programmed to your body by your thymus gland, in time, and are less likely to cause GVH. To stop the killing action of the Methotrexate and allow the new bone marrow to produce white cells, we administer a second drug called Leucovorin. We will give that to you at twenty-four and again at thirty hours after we run in the Methotrexate. We will give you the Methotrexate at 9:00 AM on days one, three, six and eleven after the transplant and each time we'll follow it with the two doses of Leucovorin. Our objective is to provide enough time for the newly developing immune system and your body to learn to coexist. "GVH may continue after this time and within four to five weeks could show up in the skin, GI tract or liver. These are the most likely organs to be affected. If it does, we will have to administer steroids and other drugs to suppress the immune system and give it more time to adapt to your body. The most common time to be vulnerable to GVH is the first three months after transplant, but some people have it after that period. In some patients the GVH is chronic; they have it for the rest of their lives." "Is there anything we should know about the transplant itself, like side effects, for instance?" "We will run the bone marrow in through the Hickman, very much like a blood transfusion. It will probably take about thirty minutes. The marrow will be out of the blood stream and into the bone within thirty minutes to an hour. That's an amazing part of this process. The bone marrow 'knows' where it's supposed to go. Shortly after that we'll give you the T cells. You could get chills as the bone marrow goes in, but we will be watching for that and if it happens, we can stop the process and then start it up more slowly. You may also have blood in your urine for about twelve hours after the transplant. It's nothing to worry about, just an excess of hemoglobin in the blood from all the manipulation of the marrow in the laboratory. "After the transplant you will probably develop a very sore mouth from the chemotherapy. Your taste buds will be altered for a time and make your food taste unpleasant. I think I mentioned this the other day. We will give you morphine for 217 the pain. Many people are concerned about taking morphine because it can be addictive. We will give it to you in a infusion so there will be no highs or lows with it. When morphine is given by injection, there is a much greater chance for addiction because you are given a lot of it at once and get euphoric. When the drug wears off, you suffer depression. We would expect your mouth to heal in three to four weeks. The rest of your GI tract should take about two weeks to repair itself. You could have some diarrhea until it heals. Usually that can be reasonably controlled by Lomotil and codeine. "We've been so busy talking about what's going to happen, I forgot to ask you how your night went, Gay." "I got sick to my stomach and had diarrhea several times last night and again this morning. I'm feeling better now, though." "Have you asked the nurse for something to ease it?" "I got some Lomotil last night and Steve gave me two more this morning. It hasn't stopped it, but has made it more controllable." "If the Lomotil is working, let's stick with that. If it gets out of control, let me know and we can try codeine. I'll see you both later this afternoon." Roger then started for the door and was looking at Gay through the plexiglass as he spoke when he saw the sign taped to the inside of the glass facing the outer room. He stooped and laughed and then said, "Where in the world did you get that?" Gay sat up straighter to see what he was looking at and the laughed. "Oh, you mean my sign that says SEX CLINIC in big red letters? Tom boasted that his bone marrow would improve my sex drive so my cousin, Judy, sent me that sign. I've had fun with it. Most people comment on it when they come in. It gets the conversation going." "I think it's great. You people think of more ways to brighten up this room and lighten up the mood. I never know what I'm going to find when I come in here. It really helps." Roger waved and walked through the door chuckling to himself. Mom and Jack were sitting in the outer room with me when Tom came bursting through the door with Beth close behind him. "Hi guys, how is everybody doing?" 218 Before anyone could respond, Gay called out from the bed, "It's the Oklahoma Gusher." Beth eased Tom out of the way so she could get to the sink to wash her hands. She knew Tom was in high spirits and was willing to let him roll. "Where did you get that?" asked Tom. "Roger told us your bone marrow came out so easily, it was like an Oklahoma gusher," I explained. "I guess it did. I thought the procedure went very well." "Tell us about it," said Mom. Tom took a chair. "Beth took me over to the hospital about 6:00 this morning. We went into the clinic, but didn't have to wait very long to get started. They gave me an anesthetic that blocked out the feeling from about my belly button on down. Then I lay face down on a table that elevated my pelvic bone so it would be easier for Roger and his assistant to work on. The process is similar to what happens, Gay, when you have a bone marrow biopsy. Roger inserted the bone marrow needle into my left pelvic bone and aspirated marrow out with a syringe. Then he went into the same hole in the skin, but made a second hole in the bone right next to the first and pulled out the marrow that was there. Then a third hole and so on in a circular pattern. As Roger worked on the left side, his assistant did the same thing on the right side. The marrow aspirated a little too easily for them. They were moving right along and pulling marrow out so fast that at one point it made me feel nauseated and a little light-headed. Tiny beads of sweat broke out on my forehead. I told Roger I thought my blood pressure was probably low. The anesthesiologist checked it and found that it was. Roger and his assistant had taken about a quart of marrow in twenty minutes. That had the effect of lowering the volume of blood in my body and the blood pressure with it. He told me he had never done a bone marrow like this before with the guy on the table giving him running condition reports. They stopped for a few minutes and I was fine again. The entire process took only about thirty minutes and I was back in the recovery room with Beth. I rested there until I got the use of my legs back. I tested them out and they worked fine. I got off the bed and the nurses said I couldn't leave yet because no one ever recovers that fast. I assured them I was fine, and I am. Beth and I came right up here to see how you all are doing." 219 Tom had just done a very nice thing and had done it very well. He was a man who had a right to feel proud, and he did. "How are you feeling after all of that?" asked Jack. "Pretty good, except I feel like someone hit me in the back side with a bat. I'm sure that will be gone in a few days. I'm also feeling a little tired, but I'm feeling really good. I'll come down in awhile and go home and crash for the rest of the afternoon." Tom and Beth stayed for another thirty minutes and then Tom said he really was getting tired. They left to let him get some rest. At about 4:00 there was no sign of the bone marrow and no one knew when it might come from the lab, so Mom and Jack headed for home, too. Shannon and Cameron and a couple of other visitors had dropped in earlier in the day, hoping to be there during the transplant, but all had to leave before the bone marrow came. At about 5:00 Gay and I were alone in the room when Steve came through the door with a transparent plastic bag filled with red liquid. "Here it is," he said. "I'm not sure what took it so long, but it's here now." He hung the bag on the IV stand. He shut down all other tubing leading to the Hickman and connected the bone marrow bag so that only the bone marrow would be running into Gay's veins. Roger came in to join our little party and observe the transplant. Steve started the flow slowly at first to see if Gay would have any reaction. She didn't, so he increased the speed of the flow until he was comfortable it was about right. He pressed the first two fingers of his left hand on either side of the bag to hold back the fibrin that was threatening to clog the hole to the tube. Gay watched sitting up in her bed and I looked over Steve's shoulder. When that bag ran out, Steve left for a few minutes to return with the second and last bag. It took about forty minutes to run in both bags. About twenty minutes later Steve brought in the T cells and infused them in through the Hickman. The transplant was complete, at least what could be done by humans. It was now up to the bone marrow cells to find their way to the bone and take up permanent residence. After a year of watching the medical community at work on Gay's case, I was both amazed and discouraged by our ability to diagnose and to cure. There were times in the process of learning about Gay's disease and the various medications and treatments when I marveled at how much we knew about the human body and how 220 to keep it running smoothly. Then, at other times, I would run into an unanswerable question I felt was vital to further understanding of a piece of the puzzle and was struck by how far we still had to go with our quest for knowledge. During the past year, and especially in the past ten days, I had also seen how destructive our cures and attempts at cures could be to the body. We hadn't reached the point where the drugs we had devised could accurately discriminate between the cells that were good for our bodies and those that were harmful, so we had to tear down before we could build up. But, the contrast between what Gay's grandfather had gone through in his fight against multiple myeloma and what we were experiencing was stark. There were no options available to him and the disease took him. At least we had a procedure that provided us hope for a cure. These feelings all converged at once on me as the transplant itself came to a close and I was reminded of all Gay and I had undergone to get to this point. I turned to Roger and said, "There are three things I think I have learned about the art of medicine in the past several months, Roger. How much we as a society know about the body and how to keep it functioning, the tremendous amount we still have to learn and that the practice of medicine is very pragmatic. You do what works without always knowing why it works. I suspect that people ten and twenty years from now will look back at some of the methods we are forced to use today and see them as barbaric, just as we view the methods of the past. I also suspect that it's men like you who are going to lead us to that future. Getting there is not going to be easy, but we need to make the journey. 221 CHAPTER XIV AFTER TRANSPLANT We had made it through the transplant itself and were now entering the engraftment stage. We would get our first true measurement of how well the Tom's bone marrow was taking to its new environment. On Day Twenty-eight Roger would perform another bone marrow biopsy, cut the marrow into thin sections and examine it closely under the microscope. That would be our first view of how well the marrow was producing platelets and red and white blood cells. It would also show us if any Myeloma cells could be detected. With Gay's immune system at such an ineffective level, we would be watching closely for any infection that could cause damage and for signs of graft versus host disease. Gay would also be concentrating on eating. She was getting all of her nourishment through plastic bags hung on the IV stand and would have to be taking enough by mouth to sustain herself before she could leave the hospital, even if all other signs were good. This phase certainly got off to a surprising start. I was not expecting Gay's reaction the following afternoon. Linda had arrived about an hour before and Tom and Beth had just come in. Gay was almost euphoric over successfully completing the transplant and had been gaining strength all morning. She was feeling better than she had in days, both mentally and physically. She was walking around the confines of her small space, talking far more than she normally did. It was wonderful for me to see. "Tom, I have your bone marrow in me and I really feel good. It may not be the marrow working all this soon, but we can give it credit, anyway. It's Day Two and I've got more energy than I know what to do with. This room is too small to do anything very energetic." "You could ride a stationary bike. I'll see if there's one free if you'd like," I offered hopefully. The bike was an excellent vehicle for the exercise Gay needed, but she had felt like doing it only a couple of times since she had arrived. "It would be great exercise," added Tom. "and you need some of that. Your muscles can really get weak after a week or ten days of inactivity like you've had." "Why not," she said, "I'll give the bike a try. I should be using it anyway." 222 "Sounds pretty boring to me," said Beth." I even get bored riding with Tom in the country, and then the bike is at least moving. We'll just have to keep you entertained while you ride." "I don't think I could handle it whether the bike was moving or not," observed Linda. I went into the hall and asked one of the nurses if a bike was available. Within about thirty minutes one was wheeled in and set in the opening to the inner room. They had to disinfect it before Gay could use it. Gay got on and rode slowly at first, talked to all of us at once. Then she was hit by a wave of energy and rode hard for a short burst with her head bent down over the handle bars and her legs pumping away. She slowed down for a period and then gave another short burst. "This is Day Two and I'm really happy about that," she announced gleefully as she pedaled. This was the second time she had mentioned Day Two and Tom corrected her. "This is Day One, Gay." "No it's not," said Gay as she abruptly stopped pedaling. She looked over to me to back her up. "This is Day Two. Yesterday was Day One." "I'm afraid Tom's right, Love," I said reluctantly. "You start counting the days the day following transplant." She looked at Tom and me as if we had gone crazy and were betraying her. Then a sign of recognition came over her face as she realized we were right. "Well it should be Day Two, even if it isn't. I don't think they should number that way. It just isn't fair." She got off the bike and climbed on top of the bed, facing us, on her hands and knees. She began kicking the mattress with her the tops of her feet saying, "It should be Day Two." Then she stopped, thought a minute and started again. She thought she had one day behind her of the count down and when she found out that wasn't true, she was clearly disappointed. All we could do was laugh and marvel at her energy. Finally Gay stopped beating the mattress and started laughing with us. What a surprising way to start Day One. That night Gay tried a bit of dinner. She first sampled the salad, then the meat and finally the pudding. "I can't eat any of it. It all tastes like burnt water." 223 "What in the world does burnt water taste like?" I asked with a chuckle. "I don't know. I can't explain it, but that's what it tastes like. My taste buds are really screwed up. My mouth also hurts like crazy. Between the two, I can't eat anything. I sure hope this doesn't last long. I like to eat and, besides, they won't let me out of here until I do." Two days later, on the morning of Day Three, Gay was feeling fairly good, except she was tired and her mouth was getting progressively worse. The left side of her neck at the Hickman incision was also quite sore. Hot packs were helping the discomfort. Her platelet count was low the day before so she received a transfusion of platelets. As a result her count rose to 107,000, one of the highest bounces they had ever recorded. That meant that Gay wasn't having any problems with antibodies. She rested much of the morning, but then around noon she had a violent chill that shook her whole body. Dr. Lee gave her a small amount of Demerol which calmed the chills quickly. Dr. Lee explained that Demerol was a narcotic and they had to be careful using it, especially in conjunction with morphine, but it only took a small dose to stop the chills. Liz Hall, Gay's nurse that day, took her temperature right after the chills and found it was 101 degree Fahrenheit. Thirty minutes later it had dropped half a degree. Two people called while Gay was having the chill. I called them both back afterwards to assure them she was all right. Shortly after that I saw Roger in the administrative area and walked over to ask him what caused Gay's chills. "Usually one of two causes," he replied. "Sometimes when a patient is given a transfusion of red blood cells, a few white cells get through the screening process and enter the body. The patient may have antibodies that react against these white cells, causing a fever and, sometimes, chills. The blood is radiated before it's given to the patient so the white cells can't divide. They soon die, but they can cause trouble for awhile. "The other cause is the more likely one since Gay hasn't been given any red blood cells. Bacteria can concentrate in the intestines. The antibiotics we're 224 administering attack the bacteria and kill it, but the result can be a fever and chills. Gay may experience more chills and fever. We'll be watching closely." The following Monday I returned to work and the nucleus of Gay's support group took up a schedule that ensured there would be someone close to Gay at the hospital nearly all of the time, from midmorning until nine or ten at night. Mom and Jack were there during the week from about 9:30 to 10:00 AM until 3:30 PM. Penne, Laura, Kathie and Linda coordinated their schedules so that one of them was there sometime during most week days. I drove over after work in the afternoon and usually stayed until Gay got sleepy at night. I would often pick up Shannon or Cameron on my way or they would go at a different time. We were also there on the weekends. Tom and Beth dropped by when their time permitted. Tom brought his lunch to the hospital and often ate with Gay around noon. Friends from Gay's bridge club, First Presbyterian, P.E.O., Deere and friends who weren't affiliated with any special organization dropped by often. Letters, cards and phone calls kept coming in. Gay continued to appreciate the concern people showed and their company. When I arrived at the hospital after my first day back at the office, I found that Gay had vomited that morning while the doctors were in her room making rounds. I had to applaud her timing. At least she had the right audience. She had a second bout of it shortly after I got there. Roger told me that they had stopped giving her Reglan the night before because prolonged use can cause tremors. The Reglan was being used to calm her stomach. Since her GI tract was apparently still irritated he decided to continue administering it for awhile longer along with Benadryl to combat the tremors. The following afternoon Gay told me she had felt pretty good all day, except the pain in her mouth was getting worse. When she first started on the morphine after the transplant five days earlier, the dose was at a rate of one half milligram per hour. It had been increased each day to keep up with the pain level. It was now at five milligrams per hour. She had some red markings around the hair follicles on her lower legs that were either from dry skin or the beginnings of graft versus host disease. She was using moisturizing cream to see if it would help. Her skin was also beginning to turn darker color as a result of the chemotherapy and radiation. Gay didn't think there was a change, but became convinced when others commented on her "tan." Roger told us it would fade in time. Earlier that day, Jack asked if the hospital could provide a picture for the wall in the outer room. They responded with a print of a mountain scene that brightened up 225 one of the walls considerably. The woman who brought the picture was responsible for buying the art work for the hospital. When she came in, she immediately noticed Robbie's photograph, "Wing on Wing" and commented on its quality. She thought that if the rest of her work was this good, she should have her own show. We passed the note of praise on to Robbie the next time she stopped by. The next day was March 21, Day Six. I picked Cameron up on my way to Iowa City. When we walked into the room, Gay greeted us with one of her wigs perched on her head along with a great big smile that spelled mischief. About the time I had figured out what she had done, she whipped the wig off to reveal a nearly bald head. "Do you like it?" she asked. "I don't know if I would have gone completely bald, but my hair was coming out and getting into everything, so I had the hospital beautician come up and shear it all off. It's not completely gone, but I don't think there's much left. What do you think?" "I think you look very sexy," I exclaimed with as much enthusiasm as I could muster on short notice. "You make a wonderful fashion statement." I washed my hands and walked over to the opening in the partition where Gay was standing and rubbed her head. "Your head is as pretty as the rest of you, Gay. Why have you been hiding it from us all these years? I have a present for you to mark this occasion from your cousin, Judy. She sent it with instructions to give it to you at the appropriate time. Now is the time." While I was saying this, Cameron went over to the opening where his mother was standing and, also rubbed her head. It was nearly irresistible. He told her with one of his big smiles, "I think it's neat, Mom." "Thanks, Cam, that makes me feel good." She paused, looked at her son and then continued, "I need some help and I think you may be just the person for the job. I need something to visualize to help my bone marrow engraft and rebuild my immune system. You remember, when I was taking the chemotherapy, I visualized oriental gold fish with long sweeping tails swimming elegantly along. As they swam, they devoured the myeloma cells and discarded them when they were dead. I need something like that only more energetic." Cameron looked at his mom and could see she was absolutely serious. He walked slowly over to the blue chair with the high back. As he sat down he said, "That's a tough one, Mom. Give me a minute to think about it." 226 While all of this was going on, I went to the closet and retrieved a package that Judy had sent about two weeks before. I handed it to Gay through the opening. She bounced back on her bed and opened it with anticipation, pulling out a pink T shirt. She read the front and burst out laughing, then held it up so we could see. Across the front it read, BALD IS BEAUTIFUL. Gay immediately put it on. "I've got an idea," Cameron said suddenly. "How about a beaver. I always think of a beaver as being hard working and industrious as he builds his dams and homes. He builds his home to keep his family safe from danger. Why couldn't he help your bone marrow build a strong immune system so it will protect you?" "I like that, Cam. I'm going to use it." "Wait, Mom, there's more. I think of bone marrow as being like a beaver's home. Like a lot of little sticks pushed into thick mud and then all pounded by the beaver's strong flat tail until it's a sturdy fortress. You could think of the beaver on top of your bone marrow pounding it into place with his tail. The beaver will always come back to finish his job, too, even if he's frightened away by something. He could do a good job for you, Mom." "I love it, Cam. I just love it. I'm going to visualize the beaver moving all of the new marrow into just the right spots in my bones and then pounding it into place with his tail. When he's finished with that he'll help the bone marrow produce blood cells and platelets. That's a wonderful idea." Gay was so proud of Cameron for coming up with this imaginative creation she told everyone who called or came to visit about the beaver. It was soon common knowledge. A little later Roger came in and told us, "Gay, we plan to start you on two new medications tonight. The first one is a steroid called Methylprednisolone. It's between Prednisone and Dexamethasone in strength and should keep the graft versus host disease in check. It may have some side effects you won't appreciate very much. It could redistribute some fat to your face, neck and stomach. I know that's just where you don't want it. It could also cause you to be jittery. Let us know if this begins to happen. We can't do much about the fat redistribution, but we may be able to help the jitters. "The second is Immune Globulin. This is the IgG class antibody and should help prevent infection. It will partially replace the antibodies your white cells would be 227 producing if you had any. We will give this to you once each week through Day One Hundred. You shouldn't get any reaction from it." "The Immune Globulin sounds like pretty decent stuff," commented Gay with a smile, "but I'm not sure about the first one. My face and neck are already chubbier than they have ever been in my life. So is my tummy for that matter. I really don't need any more help there." She was still smiling, but I knew she disliked looking so unlike her normal self. She was being a very good sport about it, though. The next day Mom and Jack showed up with a little stuffed beaver. Gay placed him carefully on top of her TV where she could see him easily. Tom stopped by that night and when he heard about the beaver, he suggested he be called Boomer Beaver. The name fit and described how Gay visualized the beaver working on the bone marrow with his tail. The full name turned out to be Boomer, The Bone Marrow Making Beaver. A couple of days later, Kathie and Jim Walsh brought another beaver with long blond hair. They introduced the new comer as Beatrice and said she was to look after Boomer while he was hard at work. Beatrice took her place next to Boomer on the TV. Boomer and Beatrice supplied us with a lot of good fun from then on. When Janie heard about the beaver concept, she sent Gay a poem. Beaver, beaver build your dam. How you build is how I am. Gentle creature soft and brown; Funny teeth and puzzled frown. Build for me a hope, a dream. Think together we're a team. Dawn till dusk you work all day, Back again when scared away. Always ready for tomorrow, You weave twigs and I make marrow. Give me promise, little weaver; Give me hope in little beaver. 228 And even though I'm tired and blue, I'll push myself to think of you. Counting time like metronome, Till I am well and going home. On Day Seven, I picked Shannon up at home after leaving the office. She drove up while I did some reading I had to complete. When it came time to go home, I drove so she could do her home work. We used this arrangement often when we drove together. When we walked in the door Shannon took one look at her mom and said, "You look great, Mom, you have a really pretty head," as she was washing her hands. She then went over to the opening where Gay was standing and kissed her nearly bald head. "That's got to be the simplest hair style to take care of I've ever seen." We all laughed. I knew this vote of confidence from Shannon confirmed for Gay that her being bald was not going to be a problem for her family. We had now all greeted her hairless head with love. Gay told us that she awoke that morning with a sore throat and the doctors countered it by starting her on a fourth antibiotic. She would be on for it ten days. Roger could see a layer of skin beginning to separate from the top of Gay's tongue and said he felt the worst of her mouth problems might soon be past. He also told us that an earlier x-ray showed some of the air sacs in one of the lower lobes of Gay's lungs were slightly collapsed. X-rays taken the night before showed a bit more collapse in that lobe. He encouraged her to exercise her lungs with the blue cylinder Kate showed us the first day. Gay promised to do it. The chart with the blood counts was filled out each day. Almost no white cells or segs showed up and little or no platelet production was apparent. Andy arrived from Richmond around 4:00 the next afternoon. I picked him up at the airport and we drove to Iowa City. The plan was for us to stay at Tom's and Beth's that night along with Shannon who was already at the hospital. Andy said to his mom, "Hi Mom," and then he stopped when he saw her on the other side of the partition. "Can I give you a hug?" I looked at Gay and she gave the sign that said to forget our rules. "Do you have a cold, Andy?" I asked. 229 "Nope," he said as he shook his head assertively. "Sure," said Gay, "I'd like that, but you'll have to wash your hands and put on a white gown. There's one in the drawer over there." Andy hurriedly washed and put on a gown as Gay came over to the opening in the partition. He gave her a big, loving hug. Gay then gave us some startling news. "I had the strangest thing happen to me today. I felt something extra in my mouth and probed around with my tongue, but couldn't find it. I reached into my mouth with my fingers to see if I could find out what it was. I found something and gave a gentle pull. This whole outer layer of skin from the top of my tongue came out in my hand. That not only surprised me, but it really hurt. It still does. They increased the morphine again to help relieve it." I looked at the dial on the pump running the morphine. "The morphine is running at a rate of six milligrams per hour," I said. "How much does that cut the pain?" "It helps. My tongue still hurts, but it's tolerable. The rest of my mouth feels better so Roger feels that the healing process has begun. That's the good news." Then she came over to the opening and held out her hands, palms up. "See how red they're getting. A week ago they were a little red, but this is much more pronounced," she said. Her palms were beet red and starting to peel in a few places. "The bottoms of my feet are the same. I'm using a strong steroid cream on them. Roger feels this will fade in about a week. "They had to give me platelets again last night and they went up to 76,000, so I should be in good shape in that department for a few days." The evening passed very quickly as we caught up on what Andy had been doing and filled him in on Gay's progress. About 10:00 we headed for Tom's and Beth's for the night. The weekend went by very quickly. Quite a few visitors came on both days. Andy still had friends in Iowa City from his college days at the University of Iowa. He 230 spent part of the weekend with them and part with us before flying back to Richmond on Sunday. One of the highlights of the weekend was when Marsha Piehl and Donna Schoeck arrived. Gay told me that she particularly enjoyed sitting at the same table with them at bridge club because the two of them often did zany things when they got together and would keep her in stitches recounting their exploits over a hand of bridge. When they came in the room, they asked me if Gay could have a small tree in the room. I said she couldn't be around any living plants. They said it was a group of branches from a bush and they thought they were dead by this time. They had left the tree in the lounge and took me out to see it. The tree was actually four branches tied together at the base to form the trunk of the tree. The trunk was planted in a pot about seven inches high and filled with hardened plaster of Paris. The whole ensemble stood about two and a half feet high and two feet wide. Each of the four branches had a multitude of smaller branches coming off of it. All the branches were bare and painted white. I thought it would be a great addition to Gay's room, but wanted to make sure it wouldn't be dangerous so I carried it to the administration area and asked Roger to take a look at it. He did and said it was undoubtedly safe, but asked one of the nurses to spray it with a disinfectant. She got a spray can and began to spray the branches. The disinfectant was in the form of a white foam and it flew all over the counter top, papers and nearby typewriter. Six people were in the area watching this display and their laughter embarrassed the nurse. She stopped spraying and started to laugh along with the rest of us as she tried to wipe the foam off one set of papers. The commotion brought Roger back on the scene. He tried to keep a straight face in deference to the nurse, but couldn't help a small smile. He diplomatically suggested the nurse try the clear spray disinfectant. The nurse got the correct can this time, but to make sure she wouldn't be the object of more merry-making, she took the tree and the spray into an unused room to complete her task. I didn't blame her a bit. I returned to Gay's room and related the story. Shortly after I had finished the nurse triumphantly appeared in the door with the tree and handed it to me. I thought the tree would have been decoration enough just as it was, but Marsha and Donna had more. They set the tree on a chair in front of them and reached into a sack to bring out one ornament after another to hang on the tree. These were in the form of small birds, animals and decorated eggs. When they had finished, the tree looked truly festive and added a really unique touch of cheer to the room. Now the question was where to put this work of art. There was an extra IV stand in the room and some clear plastic tubing that had been discarded earlier in the day. I perched the pot on the platform of the stand, tied it in place with the tubing and rolled it into 231 the corner by the door. No one bothered it there for the rest of Gay's stay in the hospital. It was a great addition to the room and when people wanted to bring a gift to Gay, they often brought something to hang on the tree. Gay's back and front ribs began to hurt as they had when she was first diagnosed. We assumed it was because her bones were still distressed and, hopefully, would repair themselves in time. Her tongue continued to give her a lot of pain. She began putting Lidocaine directly on the sore places to numb the area. That provided some relief, but the anesthetic wore off very quickly. Roger told us on Sunday night that he thought Gay's mouth was beginning to heal. He felt the overall healing and repair would probably begin the following week. Radiation usually continued tearing down the body tissues for about three weeks after treatment. That three-week period would be up in a few days. Gay rode the bike for ten minutes each day and felt good afterwards. When we were alone on Sunday night, Gay told me that the day before one of the nurses commented to her, "You're in as much pain and discomfort as others in this Unit, but you have fun with it. It's such a pleasure to come in here. I actually feel better after I've been in here." "That really made me feel good," Gay said. I thought that was one of those rare unsolicited compliments you get now and again. It made me feel good, too. During the next week Gay had three chills accompanied by small fever, but required no medication for them. She also began developing small tightly grouped red spots on her back and chest that looked like a rash. The rash was mildly irritating at first, but grew over a few days to a painful itching sensation. The dermatologist diagnosed it as graft versus host disease, but the doctors in the Unit were skeptical because Gay's white count had not started to come back when the spots first appeared. The white counts were still hovering near zero where they had been since the transplant. You can't have GVH without white cells to attack the body. Toward the end of the week, however, the white count showed a bounce, dropped back down and then another bounce by the following Monday. Then everyone agreed it was GVH and Gay began using a steroid cream as a countermeasure. About the middle of the week Gay started eating jello and drinking liquids. That was the most encouraging sign of the week. 232 I had to break my normal routine that Friday and much of Saturday. It was the end of March and I had to stay home to pay the household bills and do our income taxes. I would have preferred being with Gay at the hospital, but somehow I didn't think our creditors would appreciate that, including the Internal Revenue Service and the State of Iowa. On April 1, it was time for the doctors to rotate and a new team came into the Unit. The new team was headed by Dr. David Vesole as the staff doctor with Dr. Steve Kahanic as the fellow. On April 2, Day Eighteen, Gay had a chill and fever of 104 degrees Fahrenheit. She was also sick to her stomach. She didn't require medication for the chills and Tylenol brought the fever down, but it gave me some concern for awhile. We thought there was a small improvement in the rash on her chest and back. Over the next five days Gay ran temperature spikes of between 102 and 104 degrees, but had no vomiting. No cultures were grown from her stools or blood, so we assumed the cause was graft versus host disease rather than an infection. On Day Twenty-Three David discontinued the antibiotics she had been on since the transplant, but kept her on the morphine to decrease the pain that still inflicted her mouth. The rash on her chest and back began to peel, but a new one was appearing on the inside of her legs. This one was a solid bright red mass and quite painful. It was clearly diagnosed as GVH and she used the cream on it as well. We quickly developed a routine. Just before I left the hospital at night, Gay would strip down and would apply steroid cream to her front where she could easily reach and I would smear it on her back. Between the two of us we made fast work of the application, but she felt a little like a greased pig when she went to bed. We had been watching the white count very closely for days and in the past week had seen some exciting progress. The counts were nearly zero for the first sixteen days after the transplant and then jumped to 400 on Day Seventeen. They doubled the next day and nearly doubled again on Day Twenty One. Now, on Day Twenty Three, the white count stood at 1700. Steve told me that the hospital considered 3500 as the lower end of normal so Gay's counts were within striking distance. Dr. River had put the figure at roughly 5000 and a blood test form we had at home listed 4800 so there were obviously different standards. The segs followed a very similar pattern and were at 1000. The lower end of normal for them was 1750. David announced that Gay could now come out of her inner room and walk around the halls of the hospital if she wore a protective mask. She could go for a short car 233 ride the following day, if she didn't have another temperature spike. This was truly a day to celebrate. We decided to watch a movie on television with Gay and me sitting next to one another in the same room. That sounds like a pretty normal thing to do, but for us it had been a month since we could do that. Shannon went to a video store and rented "Gorillas in the Mist." She had seen it, but thought we would like it. She had already decided it would be nice for us to have some private time and excused herself to go back to Tom's and Beth's. It was agreed that I would call her when I was ready to go. Gay and I had a very enjoyable evening watching the movie, getting sad and then laughing all in the appropriate spots. It was about 10:00 when the movie ended and we were ready to call it a day. I helped Gay put medicated cream on her back. The room was cool so we hurried so she could get in bed to warm up and to sleep. I called Shannon to pick me up. I suggested she pull up to the front entrance and I'd be waiting for her. As I turned away from the phone, I noticed a small tear just coming out of the corner of Gay's eye. I gently embraced her and she began to weep. "I don't know why I'm crying, I just am." I suspected it was the result of the steroid she was taking, but at that point knowing the cause didn't turn her into a happy lady. I tried to call Shannon to delay her arrival, but she had already left. Gay and I held each other and then sat together for about thirty minutes. Then she lay down on the bed. I put a blanket over her and stroked her head until she was relaxed and sleepy. When she was asleep I went down to the entrance, but couldn't find Shannon. Now I began to worry something had happened to her. So far, the end of this evening hadn't gone very well. I headed for the parking garage and saw her coming out as I approached. We were very happy and relieved to find one another. As soon as I explained what had happened, she forgave me for being late. When we arrived back at the house, Tom and Beth were in bed. Shannon began studying on the couch and I took a warm bath, read a little and went to bed. The next day was Sunday and Shannon and I spent the day with Gay. At one point in the afternoon, I met David Vesole for the first time. We had an informative conversation. He began by telling me how he viewed Gay's condition. "Gay is no longer on antibiotics, as of yesterday. I think the fever spikes she has been experiencing are not from infection, but are due to graft versus host disease. Her skin rash is also from GVH. I expect we will be seeing improvement soon. An 234 indicator will be when the dead skin begins to flake off. That will signal the skin is repairing. Early this morning it looked like this was beginning to happen on the sides of her back. Just keep using the cream on it for a few days." At this point Gay asked, "David, why is my mouth so sore?" "Is it worse than it has been?" "Yes, it seems to be." David took a flashlight from the bed side table and looked in Gay's mouth. "I can't see any new sores or other reason for it to be worse. We'll have a dentist look at your mouth tomorrow. If he can't find anything, we may get a specialist to check your mouth. "I think we should double the dose of the steroid you're on, Methylprednis. That will put it at one milligram, still a small dose. That should help hold down the GVH." David turned back to me, "Gay has grade one GVH causing the skin rash, temperatures and chills. You may be aware that studies have shown this level of GVH indicates a good activity of the white cells and those white cells help prevent a recurrence of the cancer by attacking any malignant cells that may be left. Unfortunately, they also attack your normal body cells." "Yes, we do understand that. When do you think the GVH will disappear?" "That is a difficult one to predict with any certainty. Some people have it and then never experience it again after it has run its course. Others have chronic GVH and must medicate against it for the rest of their lives." That was certainly a sobering thought. One of the medications was steroids and prolonged use resulted in unwanted side effects. Gay had already run into one side effect. Her stomach, neck and face were bloated beyond their normal size as Roger told us they would. Steroids could also lead to joint problems among other things. "I don't think Gay will have chronic GVH, but it really is too early to tell." David turned to Gay, "There was one test result that is not very clear to us. It indicates that there may be hepatitis B in your liver. If it is, it probably is not being 235 caused by GVH, but by a virus. The test results may also be drug-induced and not caused by hepatitis at all. We will watch it and if it doesn't clear up, we will probably do a ultrascan to look at the liver more closely." "Is there a specific course of drugs you plan to put Gay on to prevent the multiple myeloma from returning?" I asked. "Dr. Gingrich and I have discussed that issue, but haven't come to a conclusion yet." "I know that some institutions have had more experience doing bone marrow transplants for patients with multiple myeloma than you have here. Do you ever network with them to share information on what is working and what isn't, or about new concepts under consideration or studies being conducted?" David thought for a minute and then replied, "No, we really don't do much of that. We aren't a part of any studies being conducted or a part of a group to pool information on treatment modalities on this disease." "I would think it would make sense to pool all the information available since there are so few people who have multiple myeloma and also qualify as a good candidate for a bone marrow transplant. It seems to me, it would be difficult for any one institution to compile enough data to be statistically valid. Wouldn't progress be speeded through cooperation?" "I'm sure that it would. Unfortunately, politics plays a role. Many institutions prefer to keep the results of their research to themselves until they are ready to publish them. Each wants to out perform the other. That enhances their reputation and can lead to grant money. There is certainly competition between institutions." "That disappoints me. I think the patient is the loser." The following Wednesday was Day Twenty-Seven and a big day for us in two ways. First, Gay's blood counts had continued to increase. That was one of the first things I checked each day when I came into Gay's room. When I walked in this afternoon, the chart read 5,000 for the white count and 2,600 for the segs. This was the first time that both had clearly risen into the normal range since the transplant. That was certainly marvelous. I showed Gay how happy I was by giving her an extra long hug. The new bone marrow was working. 236 The second big happening was Roger bringing confirmation of the good news suggested by the blood counts. Roger, Gay and I had decided the night before to take a bone marrow biopsy the next morning so Roger could make a close examination of how well the new bone marrow was doing. He came in Gay's room that afternoon shortly after I arrived from the office. Gay and I were sitting together in the outer room. It was certainly easier to carry on a conversation with all of us in the same room than when Gay was in the inner room. Roger had a big smile on his face and we assumed he had examined the marrow and liked what he saw. "I've just looked at the new bone marrow and it seems to be reacting extremely well. It is producing red and white cells and platelets, too. It's not unusual for new bone marrow to be producing white cells at this early stage, but it is unusual to see red cell production and most uncommon for the marrow to be producing platelets. That's a very good sign. I can't remember seeing bone marrow as strong as yours after twenty-seven days. I am also happy to tell you that I couldn't find any female type cells in the marrow. They are all male. That means there are no cells left over from your bone marrow, Gay, to fight against Tom's bone marrow. That's excellent." Gay had a smile she could barely contain. "That is wonderful news. You didn't find anything to be concerned about?" "No, I didn't." I was as excited as Gay. We were passing through a critical time and so far the voyage had been successful. There were still a number of mysteries and one of them was the last blood screen testing positive for hepatitis B. "What do you make of the indication of hepatitis in Gay's last blood test?" I asked. "It may be a false positive. The most likely place for hepatitis to come from would be from a blood transfusion. We do screen for hepatitis in any blood we take from donors in the hospital, but it's possible that it could have gotten by the screening. But, the incubation period is longer than twenty-seven days. You had your first transfusion twenty seven days before this blood test. We will continue to check for hepatitis in future blood tests." "If you conclude Gay does have hepatitis, is there a medication to fight it?" I asked. 237 "Hepatitis is caused by a virus and we have no drugs that are effective against it. The body has to take care of this disease itself." "I asked David Vesole if you were planning any special treatment for Gay to help ensure that the multiple myeloma doesn't return. He said you and he were discussing it. Have you come to any conclusion?" "The bone marrow transplant is the most effective action we know of and we've done that. There are no more than twenty-five or thirty people in the world who have had an allogeneic transplant for multiple myeloma. That gives us a very small population to learn from, but there is nothing we have found from these people or any other experience that suggests there is anything more that should be done to increase our chances that the malignancy won't return. All of the treatments that have been suggested have unwanted side effects with no evidence they will do any good. "Some time ago you asked me about the very rapid response Gay got when she went on the VAD. The fact that the malignancy went into remission so fast indicated we were dealing with an aggressive tumor, one with cells that divided rapidly. I think that has worked in our favor. The fact that these cells divided so often made them more vulnerable to the radiation and chemotherapy we gave Gay before the transplant. I think that gives us a higher probability that we have killed all of the myeloma cells or that any that are left will be unable to divide and will die without causing further harm. I think we have a good chance for a cure." For the first ten days of April, after the fever spikes she had experienced at the beginning of the month, Gay's temperature ran between normal and a little above 100 degrees. It continued in that range. As we moved through the next five to six days the rash on Gay's upper body turned into a mass of peeling skin. She said she felt a little like a snake shedding its skin. The rash on the inside of her legs had become an angry mass of red and was spreading to the rest of her legs, but in a less concentrated form. It all itched. It was very hard for her to keep from scratching it. On Thursday afternoon, the day after the bone marrow biopsy, David told Gay that if she didn't have any more high temperatures she could go home on Saturday, stay Saturday night and return Sunday. That became the next goal. 238 When I arrived at the hospital the next day, Friday, Gay told me she had been very weepy in the morning and openly crying a few times during the day. She didn't know why unless it was brought on by the steroids or the release of tension she had been under or a combination of both. Her white count was up to 6,800. That was marvelous, but it appeared that she would need a transfusion of platelets that night. Shannon and Cameron arrived around dinner time and we spent a relaxing evening watching TV and talking. The kids left about eight and I followed about an hour later with the knowledge that I would be able to bring Gay home the next afternoon if all went well that night. It is hard to express how exciting that prospect was for both of us. When I awoke on Saturday morning, I was still excited. Gay and I had agreed that I should stay home that morning and get all the bills paid so that chore would not get in the way of what little time she would have at home. She wouldn't be able to leave until the afternoon, anyway. I finished the job a little before noon and headed for Iowa City. When I arrived, I found that the doctors had already been in to see Gay and had released her to go on her twenty-four hour pass. She had her make up on and was eager to go. My heart took an extra beat or two of joy when I saw that. I thought the make up was a very positive sign. As we went into the hall, we stopped to talk with Steve Kahanic. He told us he was not convinced that Gay had hepatitis B. The screening test showed her liver function to be just marginally out of the normal range and he felt that could be caused by something else. If it was hepatitis, he thought we would know the following week after more tests. In any case, he felt Gay's body would be able to take care of it. On that reassuring note we headed for the pharmacy on the first floor to pick up the medication Gay would need while at home and then aimed for the side door across from the parking building. When we arrived at the door I said, "Why don't you wait here and I'll bring the car around." "Heavens no," she responded, "I'd rather walk with you. I want to enjoy the day and enjoy being with you." We crossed the street with a bit of a spring in our steps, found the car and pointed it toward the interstate and home. 239 As we merged into traffic on I-80, Gay told me that David was generally quite pleased with her progress, except for her lack of eating. "David said the main thing that was keeping me in the hospital was that I'm not eating enough. They still have to give me too much nourishment through the Hickman." "Has your mouth gotten any better in the last couple of days?" "No, and that's the main problem. My taste buds are starting to come back. They're not normal, but I can tolerate the taste of many foods I couldn't stand after the transplant. One problem is my mouth is such a mess. It hurts terribly to put food in it. The other problem is I still have hardly any saliva. It's really hard to chew and swallow with a dry mouth. But, I'm trying hard to eat because I want to come home for good." We drove on in silence for awhile. Then I noticed she was weeping. I asked her why. She replied through her tears, "I don't know; I'm happy to be going home; I'm just crying. You know, this just comes on me sometimes. I keep blaming it on the steroids and I think that's what it is." After a few more miles, Gay turned to me with a smile. "I feel better now. I think it must be riding through the Iowa countryside with early spring bringing things alive on either side of the road. That's defeating the depressing effects of the steroids." "We can strike up another victory for mother nature," I quipped. "Do you remember each time we drove home from a summer vacation?" she remarked with a bit of nostalgia in her voice. "No matter where we had been, it felt so special to return to the deep greens of the Midwest. We could always tell when we were nearing home by the shade of green in the foliage and, of course, the tall corn." I did remember and the memories were good. As we approached our driveway, I suggested, "Perhaps you should let me go in first while you stay in the car." "Why?" 240 "I'm afraid the dogs will be so happy to see you they might piddle on the floor in their excitement. I trust Molly, but Mike is just barely house-broken." Mike was a very cute, and very rambunctious twelve month old, black and white Boston Terrier puppy we had purchased the previous August. "I'll go in and let them outside to do their duty before they welcome you home." "I didn't even think about that. You may be right. I'd much rather wait a few minutes in the car than clean up messes." I pulled into the garage, gave Gay a homecoming kiss and headed into the house. Both dogs came running down the hall to meet me. I gave both a round of pats and let them outside. When I returned to the kitchen, Gay was coming through the door from the garage. She had waited long enough to be home. I held my arms open to her and she cuddled inside for a long hug. "It sure is good to have you home, my dear. I want to make this a permanent arrangement as soon as possible." "I feel better just walking through the door. It may be all in the mind. That's okay as long as it works. I just feel good being home." "You wait here and I'll let the dogs in. They should be done by now." "Okay, I've missed them, too." I went to the playroom door where both dogs were waiting to come in. Both headed for the kitchen with Molly in the lead. Gay was standing on the far side of the kitchen as Molly rushed through to her bed in the sunshine of the solarium next to the kitchen. She didn't notice Gay. Mike was next, but he rarely runs in a straight line and on one of his zigzags through the kitchen he spotted Gay and slammed on the brakes. He put all four feet out in front of himself, stiffened his legs, lowered his rear and came sliding to a stop. As soon as he regained his balance, he rushed over to Gay with everything wagging that would move from his tail to his nose. He was pure dog in motion. All of this commotion brought Molly back into the kitchen and this time through she saw Gay and went into a similar frenzy. David had cautioned Gay not to let the dogs lick her so she was ready with a pair of plastic gloves. She put them on and leaned over to acknowledge this great show of affection. Molly and Mike climbed over each other to get close to Gay. What a fuss. I just stood there, enjoying the whole scene. It was a great show. Gay took off her coat and went into the solarium and sat down in her recliner. Both dogs immediately jumped into her lap. It was a good thing they were small. She was pretty well covered up except for her face and both dogs tried to lick her 241 cheeks. It was all she could do to keep them at bay. I finally lifted each down so Gay could relax for a moment. "The kids are at a volleyball tournament in Ames so we have the rest of the afternoon and the first part of the evening to ourselves," I said. "I think that's wonderful. Just what I want." "Would you like me to invite anyone over for a visit or just be the two of us?" Gay immediately answered, "I just want to be with you. Do you suppose our friends would mind if we told them we didn't want to talk on the phone or see anyone? I'd just like to have some quiet, private time with you. That's what I'd like." "I think everyone will fully understand. You relax and let me handle the phone if anyone calls." We spent a lovely, peaceful afternoon just enjoying being at home together. The kids came home around eight and found it very natural to have their mom there, very natural and loving. We talked for a little over an hour. By that time Gay and I were getting sleepy, so we excused ourselves and headed for bed. After we had been under the covers for a short while Gay turned over on her side in my direction and said, "I don't know if you can imagine how truly wonderful it is for me to be in my own home, in my own bed with my best friend. It's marvelous." I found her hand under the covers and gave it a squeeze. "This is the first day this house has felt like our home since you left. I love you, Gay." She returned my squeeze and we fell asleep. We awoke at the same time twice during the night and didn't mind being awake at all. We just remarked all over again how nice it was to be at home together and then fell back asleep. We cuddled close when Sunday morning came, as we had so many times before. Just being close with loving touches and the feel of being physically and emotionally intertwined was marvelous. To be this far along was a victory in itself. We held each other, talked softly, kidded one another and laughed at ourselves before getting up. I wondered how many couples allowed days, weeks and even months to slip by without this closeness. How many times had we? I 242 didn't know, but it wouldn't happen often in the future. This was a simple pleasure, a luxury, not to be misplaced in the rush and tumble of everyday life. I rose first and Gay stayed in bed for another forty-five minutes to stay warm. She had been cold since entering the hospital and starting treatment. We hoped that would end soon. Being habitually cold is miserable. The day went by fast and the time to take Gay back to Iowa City came all too quickly. We reluctantly got in the car and headed it westward. It was late in the afternoon and Gay decided she wanted to see how well her mouth would tolerate a hamburger and fries so we stopped at the McDonald's in Iowa City, a couple of blocks south of the interstate. I brought the food back out to the car. I parked at the edge of the parking lot under a tree and we had dinner. Gay was able to eat a little more than half the burger and a third of the fries. That was an improvement over recent performances. Gay checked back in with one of the nurses when we arrived at the Unit and we went to her room. I stayed for a short while and then it was time for me to go. After we embraced, I opened the door to leave. I glanced back to say good-by and saw one of the saddest sights. Gay was sitting, slightly hunched over, in the blue chair with the high back, staring into space with an almost expressionless face. She looked so very small and lonely there I nearly cried. Returning to the hospital was a very difficult thing for her to do and it was showing now. She didn't mean to give this appearance; it was completely involuntary. I went back and knelt beside her chair and held her close for a long time in the darkened room. She put her head on my shoulder and cried without sound or movement. Leaving her that night was very hard. When I arrived at the hospital the next afternoon, Gay greeted me from the inner room. She was fully dressed in a sweat suit as she had been doing more and more in the past couple of weeks. She was rearranging some of the pictures on her bulletin board. I put down my briefcase and went to the sink to wash. "Hi, Love, how has your day gone?" I asked. "I had a number of visitors and got some exercise. Mom and Jack were here, a couple of ladies from my bridge club were here this morning and Linda just left. I went for a walk in the halls with Tom and Beth earlier this afternoon." "How do you feel after all that activity?" 243 "I'm a little tired. Other than that, pretty good. When David made his rounds this morning, I asked him when he thought I could go home. He told me he felt it would be wise for me to stay until four problem areas were resolved. Mostly he's concerned about my eating. I'm still not taking in enough through this darn mouth to keep me going. I'm still running a fever. The last week it's been low grade, but today it was higher than it has been. It was 101.3 degrees and they don't know the cause. He also told me my kidneys have started to 'leak' potassium and they are replacing that at night through the Hickman. Finally, the question of whether I have hepatitis isn't resolved yet." "Out of all that you have some control over just one." "Right, and I'm doing my best to eat like a horse. I had most of my breakfast this morning and about half of lunch. If I put enough Lidocaine, on my tongue it helps. The problem is the food takes it right off. I'm going to need a little help clearing up the rest of this stuff." "How is your skin coming today?" I asked. "My legs haven't gotten any better, but my upper body is beginning to peel again. That's supposed to mean it's getting better." "I have a feeling we're in for a long siege on the skin. It seems to get worse and then better and then get worse again. But, there isn't much they can do for you in the hospital to help that you can't do for yourself at home, is there?" "No, I don't think so. The areas David mentioned are the ones that are keeping me in here." Over the next few days Gay's temperature settled back to between normal and ninety nine degrees with one day at one hundred. The potassium went back into the normal range and the liver function tests continued to improve. Gay began eating quite a bit more to the point where they stopped the intravenous feeding. On Thursday David told Gay she could go home again during the weekend and return on Sunday night. If all went well and she checked out reasonably well on Monday, they would release her from the hospital. This came as a wonderful piece of news. We had a long talk with Steve Kahanic on Thursday evening about hepatitis B. He was still not convinced that Gay had it, but felt if she did that it would not be chronic. Her body would eliminate the virus causing it in two to three months. He 244 told us the virus was transmitted through the blood so it was possible to pass it through kissing, if there was a cut in the mouth, and through sexual intercourse. He suggested the kids and I consider being vaccinated against it, just to be on the safe side. The vaccination would be given in three shots. The second one is given one month after the first and the third one, six months later. We decided to take the optimistic view about Gay being released on Monday after her weekend pass and I began taking her belongings home on Thursday and Friday nights. When I arrived on Saturday to take her home on the twenty-four hour pass, the room had a much more lean and less homey appearance. It was once again transformed into a hospital room. The weekend went as well as the one before, except this time we had some hope that we could soon turn this into a more permanent arrangement. Linda and Dick Wagner joined us for pizza on Saturday night which was very enjoyable. Sunday was quiet and again passed too fast. It was soon time to return her to the hospital. This time, when I left her room, we were both in much higher spirits than one week before. She felt physically good and her temperature had remained close to normal during the weekend. If all of that remained in place, she would return to the Quad Cities with Mom and Jack the next afternoon with what little of hers was left in the room. The next day was tense until Gay called around noon to tell me that all had checked out well and she was, in fact, going to be released. We both knew that this was not the end of treatment, but it was certainly the close of a major phase of it. We really didn't know where this journey would be taking us in the future, but wherever it was, we would all gain strength and a tremendous emotional uplift from having Gay back home. Monday, April 23,1990, Day Twenty-Nine was certainly a big day for all of us. 245 CHAPTER XV OUT AND BACK IN AGAIN When Gay left the hospital, David asked her to return to Clinic B every Monday and Thursday so they could check her blood levels. At this stage of her recovery, there were still many things that could go wrong and a check of her blood chemistry was a good way to track progress. Specifically, he felt that she would need platelets from time to time, but there was no way of forecasting when. This twice-a-week schedule would be often enough to catch problems before they became very big. Any time Gay went outside the immediate vicinity of our home she had to wear a mask. Also, she was warned not to be in the sun for any length of time or come in contact with dust or dirt. They could be dangerous from the standpoint of germs of all kinds. She was to avoid crowds for the same reason. She could go out to eat, but only at times when the restaurants had few people in them. She was encouraged to walk and to ride a stationary bike to build up muscles that had substantially deteriorated from the inactivity of the hospital. During the first week home, Gay tired easily and took naps in the afternoon to compensate. Toward the end of the week and for the first couple of days into the next one, she grew noticeably stronger, however, and her energy level increased each of those days. It was great to watch her experiencing this rejuvenation. Penne, Laura and Linda came over at different times during the day and Mom and Jack did, too. Company and help were never far away. Gay was still using elastic netting, instead of the irritating tape, to hold the Hickman dressing firmly in place on her chest. It did that job very well, but the netting was scratchy against her skin, making it uncomfortable to wear. She thought of and discarded several ideas for improvement and then remembered the sports bras Shannon used when playing volleyball. Shannon gave her one to experiment with. Gay cut two holes in it for her breasts just as she had done with the netting. With this modification, the bra fit snugly against her chest and held the dressing in place. There was one problem, however. It was very hard to put on and take off. This type of bra is made of stretch material and must be pulled on over the head, since it has no openings in the front or the back. When Gay explained the problem to Laura one day, Laura suggested it could be solved by cutting the elastic strap at the bottom of the bra in two and sewing velcro strips to the material on each side of the cut. This would allow the bra to be opened and closed more like a regular bra. She took the bra home and made the alterations. A few days later she brought this prototype back for Gay to try. It worked very well and Laura made up 246 three more just like it. The solution to keeping the Hickman dressing in place had now been refined one more step. Other things were happening during the week that were not as positive. The peeling of her upper body skin that had begun in the hospital ran its course, but she almost immediately developed a new rash. This one was much more irritating because it had a severe itching with it. The other rashes she had experienced in the hospital had some itching, but nothing like the constant irritation that accompanied this one. We smeared cream on her in the morning and at night. David prescribed an antihistamine by phone. This seemed to help some of the time and very little at others. Her temperature ran around 100 most days. She developed something like pink eye in one eye and it quickly spread to the other. David prescribed antibiotic eye drops, but they didn't help. She also had several mild cases of heartburn. By Tuesday of the second week, her energy level began to drop off. Her eyes started to dry up and light bothered them. Linda drove Gay to Iowa City on Thursday for her regular visit to see David and have her blood levels checked. They weren't back when I got home from the office and I began to worry when they still weren't home by 6:00. Finally, just before 7:00, the two weary ladies came through the door. "You two look like you've had a rough day," I observed. "Linda, would you like a glass of wine before traveling the last few blocks home?" "I would love one. This has been a long day and your wife is exhausted." "How about you, Gay?" "I can't have wine, but I'd love a tall glass of cold water." The three of us went back to the den. Gay and Linda sat down while I poured two glasses of wine and the water, then joined them to hear the story. Linda started. "Gay had quite a day. I was proud of the way she held up, especially through the business with her eyes. You tell him, Gay." "We started the day in Clinic B with David and I reported progress, or lack of it, on all my maladies. David felt the fever, rash and itching were from GVH. My tiredness probably was from GVH, as well. Alternatively, he felt the hepatitis could be causing the fever and weariness. The heartburn was probably being caused by the Prednisone I'm continuing to take to suppress the GVH. He suggested I take 247 antacids and if that didn't work to try Zantac. He also found a yeast infection in my mouth and gave me a prescription to take care of it. Since the GVH is the major enemy at this point, he told me to double my intake of Prednisone from eighty milligrams in the morning by adding a second eighty at night." "Get to the eyes, Gay," Linda urged, "that's the interesting part." "I told him that I didn't think the eye drops were helping the redness and swelling around my eyes. I also told him about the new problems. That I was blinking a lot because of a discomfort in my eyes and that they were becoming extremely sensitive to light, that sunglasses were no longer effective against the outdoor light even on cloudy days. Since the original eye problem was not responding to the antibiotic, he thought it was probably being caused by a virus. That, along with the new difficulties, led him quickly to conclude that I should be seen in the Eye Clinic. He called the clinic to see if they could see me this afternoon. They said they would work me in. "Before we left Clinic B, I had the Immune Globulin run in through my Hickman. My blood test also showed I needed platelets so they gave me those, too. All of that took hours. Linda went for lunch in the cafeteria and one of the nurses ordered a box lunch for me. "After that Linda and I went to the Eye Clinic and began the wait. I appreciated their willingness to see me on such short notice, but I could have done without the wait. That's what made us so late in getting home. "I was seen by Dr. Schultz. He thoroughly examined both eyes. He spent most of his time looking into the back of my eyes with bright lights. Not just one. He used several different ones. That was very uncomfortable. He held my eyelids open while he shined the light inside. I couldn't have kept my eyes open against those lights otherwise. The saving grace was that he was a very nice man and seemed genuinely interested in me. He said the cause of my problem was GVH. He also said GVH didn't occur often in the eyes and he wanted others to take a look. He called some residents over who had not seen it before. This brought on more bright lights. I told him I was already on Prednisone for GVH and that David had just doubled the dose. He said I should stay on it to clear up the eye problem, too. He thought my blinking was because my tear ducts weren't producing as much lubricant as they should and my eyes were dry as a result. He prescribed artificial tears for that. I put them in my eyes every fifteen to thirty minutes." "Do they help?" I asked. 248 "Yes, I think they do. They're nowhere near as good as my own tears, but the artificial ones give me some relief. It is a nuisance to keep putting them in, though." The following Saturday, May 5, I got out of bed at about my normal time. I ate breakfast and did a little reading. When I returned to our bedroom about 8:00, I found Gay awake. When she saw me she said, "I feel like I'm about to burn up. Could you get the thermometer? It's on the table by my chair in the den." I got it and put it in Gay's mouth, noting the time on my watch. Three minutes later I eased it out of her mouth and took it into the light to read it. I returned to the bed. "It's 103. Let's leave it in a little longer to make sure we have it all." Gay nodded and I put the thermometer back in her mouth. A few minutes later it read the same thing. "Do you suppose we should call the Transplant Unit?" I asked, knowing full well this might mean that Gay would have to return to the hospital. Gay was thinking the same thing I was and a tear came to her eye. "Yes, will you do it?" I got the number from Gay's papers and went to the phone. I soon was talking to Dr. Lee. Another month had passed and Dr. Lee and Roger were staffing the Unit again. I told him about the temperature. He said he would call Dr. River and ask him to order a blood culture, and x-rays to check the lungs. About thirty minutes later Dr. River called and asked us to come to St. Luke's to have the work done. When we left home her temperature was down to 102 and at the hospital it was 101.6. We were encouraged that it was going in the right direction. Perhaps it was something that would pass quickly and not have any consequences. Dr. River consulted with Roger over the phone while we were there. He reported to us that Roger felt this might be a virus called Cytomegalovirus or CMV for short. A nurse drew blood to see if cultures could be grown and a chest x-ray was taken. We then headed home. Gay was tired and reclined her chair in the den to relax. I followed suit. It looked like a nice way to spend a few minutes. We hadn't been sitting long when the phone rang. It was Roger to check on how Gay was doing and discuss strategy. Gay and I both got on the phone so we could have a three-way conversation. "I think I know the reason for your temperature spike this morning, Gay, and your rundown feeling," Roger began after Gay and I 249 were both on a phone. "When you first checked into the hospital, we analyzed your blood for CMV and found that you had the antibodies to fight the virus. That means you had the virus at one time and developed the antibodies to fight it. We didn't find the virus itself. On Monday we drew blood as we normally do to see if we could grow any cultures indicating the presence of a disease, any active bacteria or viruses. The results came back in the computer this morning and showed CMV is active in your system." Gay and I were listening intently as Roger spoke. He paused to catch his breath and then continued. "About 60% to 70% of us have had CMV at one point or another and our immune systems create antibodies and attack the virus before symptoms ever appear. However, when a person has an impaired immune system, like yours, Gay, the virus faces much less resistance than normal and can become very active and do some real damage. I think that's what we're dealing with in your case. The virus could reactivate the high fever you had this morning and lead to other problems like pneumonia. It can also exacerbate your GVH and the hepatitis. Your liver test shows the hepatitis is continuing to improve, but CMV could make it worse. I suspect it is also why you are feeling rundown. This can be a very serious enemy and I don't think we should take any chances with it." He paused again. I think he realized where this line of reasoning was logically leading and also knew the prospect would be anything, but welcome. After considering he resumed. "What is your temperature now, Gay?" "It was 101.6 at the hospital and coming down," Gay replied, hoping this would be good enough to keep her at home. I was hoping right along with her. "Your temperature is a good indicator right now of what's going on inside you. I know how much you want to be at home. I don't blame you one bit. It can be depressing to return to the Unit after you've been released. I would suggest that if your temperature hasn't come down to 99 by 2:00 this afternoon that you come on into the hospital for a closer look. "In all of this, there is some good news that I could not have given you as little as four months ago. There is a drug available today, developed as part of the AIDS research that wasn't known a year ago. The drug is called Ganciclovir. It suppresses CMV. Unfortunately, it also suppresses the bone marrow from producing blood cells and platelets, so it impairs the immune system. But, when Immune Globulin is given in conjunction with the Ganciclovir, it can counteract some of that suppression. The Immune Globulin provides some of the IgG antibodies your system isn't producing. We normally give Immune Globulin to 250 transplant patients for the first one hundred days after transplant as we did with you. We would just continue that for as long as you needed the Ganciclovir. Four months ago the Food and Drug Administration released the drug for use in cases like yours. Before that I couldn't have given it to you. If you have to come in, that's what we'll use." "If Gay does have to return, how long do you think she will have to stay?" I asked. "Probably about ten days." We thanked Roger for being so quick to react to Gay's condition and promised if her temperature didn't decrease to 99 by 2:00, we would be in to see him, prepared to stay. Shortly after we hung up, Dr. Lee called to see how Gay was. He also expressed his concern and wanted to make sure everything was under control. We were both impressed that both these busy people were being so attentive to Gay's situation. She was being well looked after and that made us feel good. Gay went to bed after the call and went to sleep almost immediately. She was worn out. At 2:00 she was still asleep. I decided to let her sleep a little longer, rather than wake her to take her temperature. After all of the grousing we did about nurses waking Gay in the middle of the night to take her vitals, I decided not to do the same thing at home, unless she slept for too much longer. Forty-five minutes later she awoke and we took her temperature. We were both surprised and mightily relieved to find it was normal. We wouldn't have to go to the hospital, at least not that day. It was still normal when we went to bed that night. When we woke on Sunday morning we lay in bed for awhile talking about things that didn't matter very much. At 8:00 we decided we couldn't put it off any longer. I got the thermometer and handed it to Gay. She stuck it under her tongue for about five minutes and gave it back to me to read in the light. It was 100.2. An hour later it had increased to 101. After all we had learned the day before about the dangers we could be dealing with, we put in a call for Roger in the Unit. We reviewed Gay's condition over the previous twenty-four hour period. Roger was more sure than he had been the day before that CMV was the culprit and that we should start treatment with Ganciclovir and Immune Globulin as soon as possible. Gay was already getting Immune Globulin every Thursday on her visits to Clinic B. The Ganciclovir would be administered every eight hours for ten days. He said if it was going to be 251 effective, we would start seeing results within three to four days. We told Roger we would be in within a couple of hours. After the call we held each other for a long while. Gay sobbed softly at what seemed to be a major setback on her road to recovery. I tried to point out that it would be well worth the ten days if she could be rid of the CMV and the fevers. It would be worth it if she could regain her energy level and continue making progress against the GVH. We both wanted to believe this. It would be marvelous if it were true. We stopped at McDonald's for another hamburger and fries and sat in the shade of a tree to eat. It was a lovely day and it felt good to be outside. The brightness of the day hurt Gay's eyes, however, even with sunglasses on. We arrived at the hospital, back in the Unit, a little before noon. We were greeted warmly by the nurses and Dr. Lee who was sitting at his usual spot in the administration area. Several of them commented on how hard it must be to come back, but that most bone marrow transplant patients did return at least once. Gay was assigned to a small room on the far side of the Unit from the one she had before. She didn't need a Laminar Air-Flow room this time. When we walked in, I commented to Gay. "I'm sure glad you didn't take Roger up on his offer to put you in a regular room that day you complained about how small the Laminar rooms were. I have a feeling this is a regular room and it couldn't get much smaller and still get a bed and a chair in it." Gay laughed and replied, "So am I. I didn't realize how well off I was." We unpacked Gay's things and pinned the pictures back on the bulletin board. The boom box went on a table next to the bed. We were in residence within an hour and I started making phone calls to let people know where we were and why. During the following week Gay's eyes became more and more sensitive to the light, to the point where she had to keep the window blinds closed and most lights in the room off. She couldn't see well enough to read any more. The only time they were comfortable was when they were closed. Her tear ducts were producing very little lubricating liquid, leaving both eyes dry. The combination of being in a dark room twenty-four hours a day and having her sight deteriorate without knowing where it would stop or if it would ever return to normal, was both very depressing and very scary. It was a difficult week for us both. 252 On Tuesday Gay returned to the Eye Clinic and was seen by Dr. Schultz again. She explained what she had learned when I arrived that afternoon. "Did you know that each eye has two holes over by the nose to drain off the tears that wash and lubricate the eyes? I didn't. There is one in the upper and lower lid of each eye. Since one of my problems is getting tears into my eyes rather than getting rid of them, he put a plug in each of the four holes to trap what water comes into my eyes instead of letting it drain away. He called them Punctum Plugs. He told me my tear ducts are producing only about 1% of the tears they normally do. I'll see him again on Thursday." On Thursday he put a patch over one of her eyes, saying it might help the healing process. It was uncomfortable and destroyed her depth perception. It did lead to at least one laughable incident, but only if you're in the mood for some strange humor. Luckily, Gay was. She told me about it when I arrived at the hospital later that afternoon. "Shortly after I returned to my room from the Eye Clinic, I wanted a glass of water. I poured one and drank it. There didn't seem to be much in the glass so I poured another and it didn't have much water in it, either. As I poured a third glass I put my hand on the table and found to my amazement that the top of the table was all wet. I suddenly realized that with this darn patch I was missing the glass when I poured and was only getting some of the water in the glass. The rest was going on the table. My first reaction was to be mad, but then this all reminded me of those old slap stick movies like Laurel and Hardy. I must have looked just as ridiculous. That took the mad out of me and I just laughed. I was still laughing and wiping up the mess when the nurse came in the room. She looked at me as if I had gone a little silly until I explained what had happened. Then she laughed with me and helped clean up." On Friday Dr. Schultz told Gay he felt her eyes were looking much improved. He decided the patch was no longer needed and took it off. That made Gay happy. The dryness and sensitivity were no better, however. When I arrived at her room on Saturday morning, she told me, "I think my eyes are getting better. They're still dry, but I see things less blurry than I did yesterday and I can stand the light better, too." "I'm awfully glad to hear you say that," I said. "I have been very concerned about your eyes and will be until they're all cleared up, but I'm relieved to hear the direction it's taking. What about your temperature last night? Any more spiking?" 253 "Unfortunately, yes, my temperature hit 103.6 during the night. It was back down to 100.2 about an hour ago. I had a fitful night and I'm not feeling very strong this morning. Those high temps really take a lot out of me. My stomach is giving me a bad time, too." Her temperature had been going up and down like a roller coaster all week. This was just the latest ride. Roger and Dr. Lee came in about 11:00. They were as concerned as we were over the lack of progress against the fevers. Something was obviously going on inside Gay, but we hadn't figured out the whole story yet. Roger explained their thinking to us. "The Ganciclovir should have had an effect on the CMV and reduced the fever by now. I suspect the CMV is responsible for making the GVH worse, so it would be wise to continue the Ganciclovir for that reason. But, since the fevers persist there must be another cause for them. An aggressive yeast, called Candida, has shown up in a culture from one of your stools and that may very well be the cause. By coincidence, I have just returned from a seminar about a drug that combats Candida. It's called Fluconazole. I think we should try that." "How long should it take before we know if this drug is being effective or whether we need to look elsewhere?" I asked. "If I'm right, we should see a response within three days. We will start the Fluconazole right away." We agreed that would be a wise course. Our experience had shown us that this business of diagnosis and treatment was similar to a criminal investigation. The initial clues didn't always lead to the right culprit or at least not all of them. Some times you had to hunt for additional clues and sometimes the mystery never got solved. Gay slept most of the morning except for the visit from Roger and Dr. Lee. She woke up around noon. It was obvious that some of her energy had returned. She said her stomach was feeling better, too. Her nurse, Margie Leonard, had taken her temperature several times during the morning and now it was down to 99.5. The morning's rest had been good for her. Margie told us that many transplant patients develop problems after they are first released and have to be readmitted. Some have to return several times. She said it is an emotionally devastating experience for nearly everyone. That told us our feelings at having to come back were not in the least unique. 254 That night Gay had another temperature spike of 103.5. Gay had only had one dose of Fluconazole, so it was too early to rule out the yeast infection as the cause. On Sunday morning Roger advanced another theory, however. He thought the yeast might have spread to the liver, causing micro yeast abscesses which in turn could be causing the fevers. If the temperatures continued into Monday, he would order a CT scan of the liver to check out the theory. If that didn't turn out to be the problem, then it could be that the nerves in the central nervous system were inflamed. It would require a spinal tap to prove that out. Gay and I expressed our desire to avoid a spinal tap if we could. Hopefully, we would find the cause before we got to that point. Roger reported that the most recent liver function tests showed some improvement, although some of the enzymes were still somewhat elevated. It still wasn't clear whether Gay had ever had hepatitis. Also, on Sunday morning, Gay's eyes were improved. They were still very dry, but she could see better and tolerate more light. I opened the blinds on the window half way and Gay had no problem with the extra light that allowed in the room. With the natural light and the bright overhead light we could tell that Gay's skin rash was getting worse. She felt much stronger in spite of the high fever during the night and the rash. I suspected that was mostly because she could see better. What a difference the eyes can make. At 10:00 AM on Monday Gay's temperature reached 104.2. They were considering putting her in ice to bring it down, but the fever broke first. She called me at the office to tell me. I was very much concerned that the medications we were trying were not reaching the cause of the fevers. I spoke to Roger as soon as I reached the hospital that afternoon. The CT scan of Gay's liver wasn't scheduled until Wednesday. It seemed to me we should take action before then and Roger thought so, too. No bacteria had shown up in cultures, so the odds were, up until now, that we weren't dealing with bacteria. Now, Roger reasoned that the Fluconazole might be suppressing any existing bacteria enough to keep it from growing a culture, but not enough to keep it from doing damage in Gay's body and causing fevers. If it was a bacteria, we didn't know what kind, so Roger decided on a shotgun approach. That night he ordered the same three broad spectrum antibiotics used effectively to prevent bacterial infection immediately following the transplant. He continued her on the Ganciclovir and Fluconazole since he was sure the CMV was at least a part of the problem and because there was clearly a yeast infection somewhere in Gay's body. He also started Gay on Cyclosporine to help combat the GVH. Up until now only Prednisone had been used against the GVH. The aim was to be able to cut back on the Prednisone as the Cyclosporine became effective. Cyclosporine would suppress the immune system, also. The Ganciclovir had already had quite a 255 negative effect on the bone marrow. The chart on the wall showed that Gay's white count had dropped in the last week from 8,400 to 3,300 and her segs from 6465 to 1914. On Tuesday her temperature dropped to 100 and was near normal the day after that. Apparently the fever had been caused by bacteria. The skin rash was also improving. The itching was at a much lower level than it had been and the red blotchy spots were clearing up. Things were finally turning around in our favor. When the temperature came down, Roger withdrew two of the three antibiotics and left her on Vancomycin. This drug is effective against the type of bacteria that often infect the Hickman line. Over the following days Gay's temperature remained near normal. From this, Roger reasoned the infection could have started in the Hickman. This might be a helpful clue to have if the fever returned in the future. Toward the end of the week, Roger came in to give us a status report. "I think you're doing real well, Gay. Your temperature has stayed down; your skin and eyes are improving. I'm very pleased with your progress. We will want to keep you on the Cyclosporine along with the Prednisone until the GVH is under control. Also, I think we should keep you on the Vancomycin for a full fourteen-day regimen, and continue the Ganciclovir into next week." "Roger, can't I do this at home somehow?" Gay asked. I can't see well enough yet to do it myself, but perhaps a nurse could come in and help me." "You probably could. You can take the Cyclosporine in liquid form. It's not very tasty and has an oily base that some people object to, but mixed with juice it can be tolerated. The Prednisone is by pills now, so that's not a problem. We can continue giving you the Immune Globulin on your regular visits to Clinic B as we did before. The other two would have to be given intravenously every day at your home. I would guess we could arrange to have the drugs delivered to your home and for a nurse to come in and administer them through your Hickman. Let me look into that, Gay. I don't know why that couldn't be done." On Saturday Roger reported that, if Gay's condition remained stable, she could go home on Monday. He had arranged for Caremark to deliver the medication to our home along with an IV stand and other equipment Gay would need. Mercy Continuing Care would provide a nurse to come in as needed to administer the IV's. That was certainly wonderful news. Gay got excellent care in the hospital, but this place was not home. Home was more pleasant, natural, loving and caring. In short, it was more therapeutic. 256 By Sunday night most things were continuing to improve. Gay's mouth and eyes were still dry, but her mouth was not quite as sore and she could see quite a bit better. Her eyes were still quite sensitive to light, but not nearly as much as they had been. Her skin was itching again, but this time it was because she was peeling which was a sign of healing. The rash itself was clearing up. There had been no more cultures showing the CMV, so it appeared that the Ganciclovir was doing its job. When I left for home on Sunday night, Gay was excited and raring to come home. I thought as I got in the car that, if Roger changed his mind about her coming home, he would be in real danger of being run over by Gay the Train. 257 CHAPTER XVI DEJA VU The program went off just as planned. Mom and Jack brought Gay home on Monday, Caremark began delivering the drugs immediately and nurses came to the house twice a day to administer the drugs. Besides being a lot more advantageous from our point of view, it was less expensive for the insurance company, as well. The next two weeks went relatively well. Gay's temperature stayed around 99 and the medications were all administered without a hitch. We were a little concerned about the slight fever, but it didn't seem to rise above 99. She resumed her routine of going to Iowa City on Mondays and Thursdays. She began seeing Dr. Birchansky of the Eye Surgeons Associates clinic in Davenport. The Eye Clinic at the University Hospitals referred Gay to them as a follow up on the work begun on her eyes. She had friends over for short periods most days. Gay started walking with Linda early in the morning at Northpark Shopping Center and she and I walked about a mile around our home in the evening when the sun's rays couldn't hurt Gay's skin. Her energy level increased during the period. One day shortly after Gay got home, Pat Drumm, our next door neighbor, gave us a new definition for graft versus host disease. After Gay had explained the transplant of Tom's bone marrow and the GVH that followed in some detail, Pat said matter of-factly, "Sounds like sibling rivalry to me." When I got home on Tuesday evening, June 5, Gay met me at the door. She was obviously disturbed and dispensed with her normal greeting. "I had a fever this morning of 102.4. It was about 9:00. Scott Leaverton , the physicians' assistant, called to tell me the Cyclosporine levels from my last blood sample were okay and I told him about it. He said he'd tell Roger." She came close and put her head on my shoulder. I could feel her body shake slightly as she began to cry. "I'm scared he's going to want me back in the hospital to try to find some darn infection." As we parted, Gay looked at me and said, "This is very strange. I'm crying with no tears. My tear ducts just aren't working, not even when I cry." That was true, but it didn't lessen the emotional impact she was feeling. Then she turned her face into a mock pout. "Some how I don't think that's fair. They should at least work when I cry so I can have a good one. A dry cry is no fun." That broke the tension and we both laughed, but the underlying concern remained. 258 The next morning her temperature was 101.4. The low grade temperatures didn't prevent Gay from increasing her strength from day to day, but these higher fevers robbed her of her energy. The next day Gay went to Iowa City to see Roger on her regular Thursday visit. She returned that evening in much happier spirits and related what he had said. "Roger was pleased with my progress. The blood tests I took last Monday didn't show any infection to explain the low grade fevers I've been running. Roger is concerned about the last spikes I had on Tuesday and yesterday, but feels if they don't get any worse, we may have to just let them run their course." We were both relieved that returning to the hospital was not in our immediate future, but I couldn't help, but wonder what was causing the fevers. Not knowing gave me an uneasy feeling that the problem was not going to go away on its own. Gay's tongue was still very sore, making it difficult for her to eat and her eyes had improved only a little. Her skin was a bright spot, though, and gave us some laughs. The previous afternoon she had been sitting in the solarium. It was late, but there was still plenty of light steaming in though the large windows. Gay got up from her chair and then looked down at the black tile floor. "Do you see that?" I looked down at her feet and saw a sprinkling of white on the floor under where she was standing. "What is it?" I asked. "It's me. My skin is flaking off in great quantities." She was wearing a loosely fitting dress and shook it as she stood there. A shower of white flakes rained down in clear contrast to the black floor. She laughed as she shook her dress again, with a similar result. At this point I laughed, too. "I think we can find you anywhere you go, now. You'll leave a trail of flaking skin to guide us." It was a unique sight. The following Monday Linda took Gay to Iowa City. Roger told her he thought the fevers could be stemming from the Hickman line and that we should consider removing it after her last dose of Immune Globulin and Ganciclovir the following Sunday. The following morning Gay had another temperature spike of 103.1 along with chills. The fever subsided quickly, with no recurrence on Wednesday. 259 On Gay's Thursday visit Roger told her that the last blood test produced a culture, indicating the CMV was active in her system again. This meant that the virus was creating infection somewhere in Gay's body and could attack and damage one of her vital organs. The Ganciclovir would have to be continued past the original Sunday stopping-date and the dose increased. Gay's eyes were continuing to improve to the point where she felt she could administer the drugs through her Hickman without the help of a nurse. During the following few days she learned how to do it from the nurses and began self administration on Saturday the sixteenth. All of the nurses who had come to the house had been very nice and unintrusive, but having a person in the house who was not a part of the family instinctively made her feel as if she should be good company for them. She didn't have to be, of course, but she felt like she did. Doing the medication for herself gave her more freedom and allowed her to relax in the process. It was a better approach. The following day, Sunday, Gay and I returned from an outing to find Shannon waiting for us. She told us that Ivy Beard had died early that morning. I called Phil to express our sympathies. He told me that two weeks before Ivy's blood tests had shown a high level of calcium which indicated death was imminent. Dr. River said there were some interim things they could do to sustain life a little longer, but that could lead to a more painful death than the hypercalcemia. The decision was made to let her go. It was a very difficult decision, but Phil felt, the right one. Gay and I attended the funeral the following Wednesday to console one courageous friend and say good-by to another. Thursday, June 28, was a milestone. It was Day One Hundred and time for a bone marrow biopsy to take a close look at progress. I took a day of vacation to accompany Gay on this visit. Linda had driven her on most past visits, so I thought she might like a reprieve this time. She said she never minded taking Gay and since this was an important trip, she wanted to go along. We were glad to have her. As soon as we checked in with the receptionist in Clinic B, a nurse called Gay's name to take a sample of blood. This was the normal beginning ritual. The blood would be quickly analyzed to determine if Gay would require red cells or platelets during this visit. Scott met us shortly after that and took us back to one of the examining rooms to do the biopsy. The process was just like the other ones, except this time we knew what to expect. A lab technician was already in the room, getting the materials ready. I took my place by Gay's head and gave her my hand. She gave a squeeze to let me 260 know she was okay and ready to start. Linda was standing at the foot of the table. Scott told us everything he was going to do before he did it. That procedure gave both of us a lot of confidence that there were going to be no surprises. I noted from my vantage point that there was excellent coordination between Scott and the lab technician and the biopsy was finished quickly. Scott thought we might have some preliminary results on the blood he took from the bone marrow cavity, but analysis of the bone marrow, itself, would take several days. The next stop was to see Inga Wallize. She was the nurse who had been giving Gay any intravenous medication she needed on her visits to Clinic B. She had worked in the Transplant Unit before and had a thorough understanding of what Gay had gone through in the Unit and was experiencing now. She started her on the Immune Globulin. After about an hour, she came in to say that the blood sample indicated she would also need platelets. She would run those in after the Immune Globulin. The combination of Prednisone, Cyclosporine and Ganciclovir made it difficult for the bone marrow to produce enough platelets and Gay needed a supplement one to two times each week. Roger came in to see us while Gay was still taking the medication. He had viewed the blood slides and had good news. "Your bone marrow looks very healthy. The density of bone marrow cells is about 40%. That means that 40% of the cells in the sample we took are bone marrow cells. I expect that will climb to the more normal level of 60% in due course. It is continuing to produce red and white cells nicely. There are more newly-formed red cells as a percent of the total red cells than the last time we did a biopsy. That's excellent. It shows the bone marrow is doing its job. The platelets are lagging, but are still satisfactory. I'd say your bone marrow is performing very well against the three suppressing drugs we're giving you, Gay. If you didn't have to take those, I think the platelets would shoot right up." "And myeloma cells?" I asked. "No sign of myeloma cells or of any of Gay's old bone marrow." "The smile on Gay's face grew wider as Roger spoke. "That's so wonderful to hear, Roger. You can't imagine. Or maybe you can." "Gay's mouth continues to give her quite a bit of trouble," I said. "What do you think is causing that?" Roger reached for a flashlight on the table beside Gay and examined the inside of her mouth. "It's hard to know for sure, but it may be herpes simplex. That is 261 caused by a virus and sometimes breaks out in areas where there is trauma. I think your earlier mouth problems were caused by GVH, but this may be herpes simplex. This would be type A so it's not communicable. I think we should start the Acyclovir again to help clear that up. You were taking that from the time of the transplant until we started you on the Ganciclovir. We generally use Acyclovir with transplant patients to prevent a case of herpes simplex or herpes zoster. You probably know that as shingles. We'll start you on a low dose since both Acyclovir and Ganciclovir are both virus fighters." Roger then reached for a swab in the cabinet on the near by wall. "Let me take a sample, Gay, to test if for herpes. If that's what we're dealing with, the Acyclovir will give us some help. If it's not, we'll have to search further for the answer." He put the swab in her mouth and soon had enough material for the test. He put it in a specimen jar, labeled it and set it on the table. "Longer range, if you keep making the progress against the GVH, I expect to ease back on the Cyclosporine by the end of summer. Prolonged use of Cyclosporine can cause kidney problems and high blood pressure. It can also help you grow hair on your face, Gay, which I'm sure you'd rather avoid." "The steroids have already put some on my face," Gay replied as she stroked the fine, white hair under her ears. "See these soft little guys I'm growing? You're right, I really don't need any more." Roger grinned at Gay's antics and then continued. "We should also be able to gradually decrease the Prednisone by then to ten milligrams a day and then every other day." Roger's comments on Prednisone reminded me of a question I had been saving for a couple of weeks. "Gay has been doing a fair amount of walking both at Northpark and around our neighborhood. During and after some of the walks, her knees feel like they're going to give out on her. Could that be an effect of the Prednisone?" "Perhaps, indirectly. Prolonged use of Prednisone can damage joints. It can make the outer edge of the ball of the joint soft so that it doesn't rotate smoothly in the socket of the joint. That can cause pain. Gay hasn't had that kind of exposure to it at this point and I don't think she will." He turned to Gay and went on. "I suspect the sensation you feel, of your knee giving way, is being caused by weakened muscles in the front of your thighs. Your thigh muscles are weak primarily because they haven't seen much exercise in the past four months, but secondarily because of the Prednisone. Prednisone can decrease the size of these long stringy muscles which leaves them weaker." 262 "So," I offered, "the cure for this problem is to continue regular exercise and, in time, withdraw from the Prednisone." "That's right, and we're trying to cut down on the Prednisone right now." "It sound like there shouldn't be any permanent damage from the Prednisone," I said hopefully. "I expect that's right. Exercise is very important to restore the muscle mass and strength." "Roger, I have a question that I have been wondering about for a long time. Actually it's three related questions that are central to our understanding of how Gay is going to complete her recovery. The first question is how will Tom's bone marrow, and its descendants, become compatible with the rest of Gay's body to the point where she no longer has GVH and her immune system is fully protecting her as her old one did? The second one is how do Prednisone and Cyclosporine interact with Gay's body to help this process? And finally, I've always thought of the immune system as comprised of white cells produced by the bone marrow with some of them acting as scavengers, cleaning up debris and others producing antibodies to fight infection. Now I think it must be substantially more complex than that." Roger started nodding his head before I was finished with my questions to let me know that he understood what I wanted to know and was ready to answer. "Those are three dandy questions. Let's take them one at a time. In the first place we have only recently made significant advances in our understanding of the immune system. It is very complex and we are learning new things about how it works every day. Let's simplify it some and take a little of the mystery out of it for you both. The immune system is produced by the bone marrow and is divided into two broad parts. One part is made up of antibodies. This is the liquid part of the system. The other is called the cellular part. It's made up of white cells called lymphocytes. There are two types of Lymphocytes we are interested in, T cells and B cells. "A likely scenario would be for an invading organism to be detected by a macrophage, which is one of the scavengers of the body. The macrophage will attack the invader, but often needs help. To get it, the macrophage puts out a signal read by just those helper T cells that are programmed by the thymus gland to defend against that particular invader. The helper T cell, in turn, puts out three signals. 263 One is to other helper T cells, with the same programming it has, to reproduce so there will be more of them to communicate the need for fighters. The second signal goes to killer T cells, also programmed against this particular invader, to grow and divide and then attack the foreign cells. The third signal goes to B cells, again the ones programmed against this invader, to first have them increase in number and then produce antibodies to also attack the enemy. The macrophages engulf the dead cells, digest them and carry them away to be flushed out of the body. As the infection is conquered, a third T cell, called a suppressor T cell, slows down and then stops the activities of the B cells and the other T cells so the immune system doesn't run out of control. Finally, memory T cells and B cells circulate in the blood stream for years afterward ready to recognize that same invader and mount a defensive response. "The tissues in Gay's body are made up of cells that look foreign to the white cells produced by Tom's bone marrow and an attack like the one I just described is mounted against the foreign cells. The result is what we have been calling graft versus host disease. We are counting on these white cells 'learning' that Gay's cells are not the enemy. Each of the white cells has a feedback loop that allows it to learn which cells are enemy and which are productive body cells. The first part of the loop identifies cells that the white cells are programmed to consider as foreign. The second part of the loop, or the feedback, signals the white cells that, although the cell in question may seem foreign, it is of no danger to the body and need not be attacked. This 'Intelligence' is passed down to successive generations of white cells. As more and more white cells, of all variety, become programmed to accept Gay's body cells as friendly, the graft versus host disease should decease and eventually go away completely. To the extent this feedback mechanism doesn't work, you will have some GVH. It usually takes six to nine months for this communication and programming process to completely evolve. As it does and as the GVH fades into the background, we can withdraw the Prednisone and Cyclosporine. "We administer the Prednisone and the Cyclosporine to partially suppress the white cells so they can't wage full scale war against your body's cells. Our objective is to buy enough time for the feedback mechanism to effectively stop the attacks against the body. While all of this is going on, of course, the immune system can only be partially effective in fighting off diseases and infections. That's why we have to supplement with drugs to do some of the fighting when unwanted germs come to call." "That certainly helps me understand the process better," I said with enthusiasm. "I can't help, but marvel at how complex the various elements of the body are and yet 264 how well they function together. When it is all working correctly together, it is truly a magnificent mechanism." "It certainly is," agreed Roger. "I thought Prednisone stimulated the bone marrow, but, from what you just said, it sounds like it and the Cyclosporine suppress it." "The two drugs work on the immune system differently. Prednisone works to suppress the broader system. It decreases the activity of the cellular and liquid parts, the lymphocytes and antibodies. It actually stimulates the segmented neutrophils, the segs. Cyclosporine suppresses only the T cells." "You have always been very patient in answering our questions and we've had a lot of them for over a year. I have heard many patients over the years complain that their doctor never explained things to them and they were too embarrassed to ask, or felt the doctor was too busy to answer them. Well, these last several months have given me a chance to think about this more than I have in the past and I have concluded there are at least four good reasons for people to understand how the drugs and procedures prescribed for them will effect a cure, or at least provide improvement. The first is to gain confidence in the doctor prescribing the drug or procedure. The second is to gain confidence that there is sound reason to believe the drug or procedure will work. Third, if there comes a time when the patient or member of the family is called upon to make a critical decision, the time for learning will have long since passed. You must already have the knowledge to react in order to ensure the best decision. The final reason is to form the basis for producing images of the cure in action which many people feel helps the healing. In general, I think this kind of understanding can form the foundation for a positive attitude that will enhance the chances that the drug or procedure will work for the patient." "I've found that patients who want to know what's going on, turn out to be more successful with their treatments. Family members who understand can give much more solid support to the patient. I'm glad you're interested enough to ask and to learn. I think it contributes to the healing, so I'm glad to help with the answers where I can. You do ask questions from time to time that no one has the answers to. I think it's good for you to know where the limits of our knowledge lie. We don't have all of the answers and some of the things we do are done by instinct or educated guessing. Bone marrow transplantation is still an area where we have much to learn. That's one reason I'm in the field. It's exciting for me to find new ways to help patients succeed against disease." 265 After Roger left, Linda took a deep breath and said, "Did you understand all of what Roger said? I hope so because I need someone to explain it to me again." Inga came in at that point to disconnect Gay from the IV which meant we could head for home. "I think I got most of it, Linda. I'll try to run over it on the way home. Whether I know what I'm talking about or not, it will make the time go fast." On the way home, Linda asked her normal round of challenging questions while Gay slept and I drove. The time passed quickly. The following Sunday, July 1, I was sitting at my desk in the den with Gay reading in her chair and Shannon studying on the love seat. Gay had a blanket thrown over her legs. It was about noon when I heard a sound coming from Gay and looked over to see her shudder with a wave of chills. The thermometer was in her mouth chattering against her teeth. Shannon was staring at her mother, too. I immediately went over to her and took the thermometer out of her mouth so she wouldn't break it against her teeth. I then grabbed a second blanket off a nearby chair and wrapped her in it, with her robe on top of that. I held her as best I could, awkwardly leaning over her in the chair. The chills continued off and on for about an hour-and-a-half. At 1:30 I helped her into her pajamas and into bed, with the covers pulled up to her chin for as much warmth as they would give. Thirty minutes later she threw off the covers and said she was getting pretty hot. I took her temperature twice. It was 103.6 both times. Gay took two Tylenol while I went to the phone to call Roger in the Unit. We had just started a new month, however, and a new staff of doctors was in the Unit. I spoke to Jim Radford who was heading up the new team. He listened while I reviewed this most recent temperature spike and chills and enough of her past history so he could put it in the proper perspective. He suggested that Gay come in to the hospital so she could be thoroughly checked out. We held each other as we discussed returning to the hospital. Neither of us was at all happy at the prospect, but it seemed certain that the fever spikes of the past weeks were an indication that something was going on inside Gay that was potentially serious. We told each other it would be foolish to take chances we didn't have to, and packed Gay's things for a stay of a couple of days. If she had to be there longer, it would be easy enough to bring the rest. Shannon wanted to go with us. We headed the car west about 3:00 that afternoon and arrived at the hospital an hour later. 266 Steve Locher came over to us as we were putting on our blue booties and said how sorry he was that Gay had to return. Three doctors were donning their white gowns, just a few feet away, in preparation for making rounds. Steve asked us if we had met any of them. When we said we hadn't, he stepped over to the three and introduced us to Jim Radford, the staff physician, Lynn Baatz, the fellow in the Unit and Judy Streit, the resident member of the team. Jim suggested we wait in the lounge and he would be in as soon as they finished rounds. No one was in the lounge when we walked in, but the TV was tuned to the World Cup Soccer match with England playing Cameroon. We watched that for awhile, then Gay curled up on the small couch and tried to rest. Steve came in to tell us that these doctors were just beginning a month of service in the Unit and didn't know any of the patients. They had to review each case history, interview the patients and have a mini- conference after each visit. All of that would take awhile. Steve saw that Gay was chilly and thoughtfully got her a blanket and a pillow. She dozed while Shannon and I saw the English on to victory. Jim entered the lounge about 6:00 and apologized for the delay. We spent twenty minutes reviewing Gay's recent medical history and the afternoon's fever and chills. He listened to her lungs and heart and suggested she stay in the hospital for at least two days. That would give them time to more closely monitor her, check if the fevers persisted and to see if any cultures would show the presence of infection of any kind: virus, bacteria or fungus. He felt the high temperatures were being caused by an infection and was hoping that a culture could be grown to identify it so they could medicate against it specifically. If they couldn't, and the fevers continued, they would treat with broad spectrum antibiotics as before. We agreed and he departed saying that a nurse would be in soon to show us to a room and check Gay in. Steve arrived shortly after that and took us to room 7043. It was another tiny room like the last one she had. By this time it was 6:30 and all three of us were pretty hungry since we had missed lunch in the activity to get to the hospital. We had a leisurely, if not particularly tasty, meal in the cafeteria and returned to Gay's room. Marie came in soon after that to ask Gay the endless stream of questions that went along with every check-in. Gay cheerfully answered each one. Then Judy Streit came through the door and introduced herself again. She delved deeply into Gay's history with multiple myeloma and all of the drugs she was currently taking. Both topics were easy for us. The history was close enough in our backgrounds for us to remember the type of detail she wanted to know. Gay put the list of drugs on our home computer right after she was released the first time so she could more easily 267 and accurately keep track of them. All that was required to answer the drug questions was to pull the two-page list out of her purse. Judy was both surprised and pleased at this. She had rarely gotten such a detailed and thorough answer to the drug question. Now all she had to do was find a copy machine. That wasn't as easy a job as one might think on a Sunday night. Judy then gave Gay a physical examination. Gay remarked to me after Judy left the room that she gave a better physical than anyone else had. By this time Gay qualified as an expert in comparative physicals. We commented it was a shame there wasn't some use for this acquired expertise. I phoned Mom and Jack and then Linda to let them know Gay was back in the hospital. They all knew we had gone to Iowa City from discussions with Cameron and were anticipating a call. Mom said they had already made plans to come up the next day if Gay had to stay. That was certainly in character. It was getting late and the rest of the calls would have to wait until the next day. Shannon and I headed for home about 9:00. It seemed to me, as we said good night to Gay, that we were all much more resigned to this return to the Unit than we were on the first return visit the beginning of May. Gay was not happy about it, but she wasn't depressed either. I didn't like her being in the hospital, but I liked these persistent high temperatures much less. We needed to solve the mystery of the fever spikes and this was the best detective agency we knew of to find the answers. We knew this was where she had to be. When I arrived at Gay's room the next afternoon, she told me, "They gave me platelets after you left last night and then took me down for a chest x-ray just as I was going to sleep. I didn't get to bed until 2:30 AM. Then I had another fever spike during the night and the chills. This time my temperature hit 104.5. I felt like I was burning up. Luckily,they brought the fever under control with Tylenol, but there was still a small temperature this morning." "That sounds like a pretty rotten way to spend a night to me," I responded. "I found out another piece of news today," Gay continued. "The culture Roger did on my mouth last week to test for herpes came back negative, so we've closed off that possibility." About an hour later Judy came in to tell us what the lab had found. "A culture grew from your blood sample that showed the presence of bacterial infection somewhere in your body. We feel it probably originated in your Hickman line. We know 268 generally what kind of bacteria it is, but the lab should be able to identify it more specifically by sometime tomorrow. In the meantime, we will start treatment with two antibiotics, Mezocillin and Tobramycin. We're going to try to kill the bacteria without having to remove the Hickman. At least that's our objective." "Do you think these most recent fever spikes are connected with the low grade fevers Gay has had or the spikes we saw the last time she was in here?" "No, we don't see a connection with either one. This bacteria doesn't lie dormant for very long. It wouldn't still be in Gay's body from the last time she was in the hospital. Also, no cultures would grow from the blood drawn from the Hickman at that time. The signs point to this being a separate occurrence. "Tomorrow, when we pin down which bacteria we're dealing with, we can choose the most effective drug to combat it." We asked if it would make sense for Gay to administer the appropriate drugs at home when we reached that point. Judy said she would raise the question at their morning meeting. Then she left. By the end of the evening I could tell that my premonition the night before had been correct, Gay was in much higher spirits this time in than last. She was physically and emotionally stronger and her eyes were in much better shape. She could read and the room didn't have to be kept in semi- darkness this time. The dark room had depressed everyone who entered, not just Gay. She wasn't viewing this return so much as a setback, but more as a disappointment, an inconvenience, an annoyance. Last time she felt her return was a clear setback, a symbol of failure. She had been released only two weeks before, feeling emotionally triumphant. She had won against the odds, her supporters had continually reminded her of how much they admired her spirit and congratulated her on her victory. Then the fever spikes hit, sending her back to the scene of the battle to continue a fight she felt she had won. No question about it, that was an emotional downer. When she left the hospital the second time she emotionally understood she might have to come back yet again to finish what she had started. That made the return easier to take. I wondered if there was a way to emotionally prepare patients for the eventuality of a return visit. We had been told that patients sometimes have to come back so we understood it on an intellectual level, but it never sunk into either Gay's or my emotional fiber. Perhaps the staff should prepare patients and family from the beginning to view the first release from the hospital more like a pass or furlough than a release. This might let them leave with the realization that they might return 269 and that a return would be a normal part of the process, rather than a sign of failure. If they didn't have to return, they could view themselves as exceptional. This conditioning would have to be done carefully and the conversation customized to the patient so as not to create an expectation that would be self-fulfilling. A tricky assignment, I thought to myself, but perhaps worth a try. Judy had just come into Gay's room when I arrived the next afternoon, Tuesday. She had a second report form the lab. "Another culture has grown from a sample of your blood and it shows you have two different kinds of bacterial infection in your system. We broadly differentiate bacteria by the way they stain up on a slide, Gram negative rod and Gram positive rod. You're lucky enough to have them both. "The one they found yesterday was Gram negative. It's the more difficult to treat so we started giving you two antibiotics to combat it, Ceftazidime and Tobramycin. The one they found today is Gram positive and we're using Vancomycin against it. We plan a regimen of fourteen days. We will also continue Ganciclovir to fight the CMV until that regimen is completed on July 6. That's next Friday." "Can you tell whether these bacteria originated in the Hickman," I asked. "We know that both cultures grew from blood taken from the Hickman. They're circulating in the blood and could have come from anywhere in the body. We feel the odds are that at least one of them came from the Hickman, however. The blood slows its flow in the Hickman and gives bacteria a good chance to grow somewhat out of view of the immune system. Bacteria have less of a chance to flourish when they are in an area of heavier blood flow where there are lots of white cells that can recognize them as foreign invaders. We still would like to knock this out without having to remove the Hickman. We'll see how the fevers do now that we have you on full medication." "Did any cultures grow out of blood from the Infuse-a-port?" I asked. "No, and that's another reason we suspect the Hickman." "Any word on my being able to do this at home," asked Gay. "We have discussed it. We will need you here at least for awhile longer while we stabilize the levels of each of these drugs. We will call Caremark to see if they can deliver what you need when you need it. We are also checking to see if a nurse could come in every other day to draw blood for testing the drug levels on an on going basis. Tobramycin can damage the kidneys if the levels get too high or if 270 you're on it too long. Before we let you go, though, we need to get the fevers down. Last night you were up to 102.6. That's too high. If these drugs work the fevers should stop quickly." The following Friday, Judy told Gay that they would still be working on stabilizing her medication and would hopefully have that completed by Monday. She also said that since there was no improvement in her mouth, they had asked an oral surgeon to do a biopsy on her tongue to see if that would reveal anything they couldn't get by observation and by culture. The objective of the biopsy would be two-fold. First, they wanted to confirm whether the problem was GVH. If it was, they wouldn't decrease the Cyclosporine and Prednisone. If it wasn't, they would continue decreasing both drugs since Gay's skin was clearing up nicely. Second, if the cause was other than GVH, they needed to start treating it. Judy summed up by saying that if they could get the drugs stabilized and Gay didn't have any more temperature spikes, she could probably go home on Monday. That was certainly welcome news. On Saturday Gay was very tired and slept most of the morning. At about noon she went to oral surgery where two surgeons took a half an inch section from the rear left side of her tongue where she was having the highest level of pain. They did this under a local anesthetic and then sewed it up with seven stitches. She was even more tired after that procedure and slept the rest of the afternoon. Shannon, Gay and I had a rather pleasant evening beginning with some soft sherbet in the cafeteria. The cool sherbet felt good on Gay's tongue. We then spent about two hours sitting on the eighth floor outside deck and walking around the floor, enjoying the art work. At 7:30 it was time to return to Gay's room to start the infusion of the antibiotics through her Hickman. Shortly after that, one of the oral surgeons stopped by to see how Gay was doing. He cautioned her to keep the area clean and in about seven to ten days, the stitches would fall out on their own. On the following afternoon about 2:00, I was just finishing some desk work I had to complete before going to be with Gay when the phone rang. It was Gay. She had trouble talking through her sobs, but managed to tell me, "I can't come home on Monday because they found another infection in the blood and now they think it's coming from both the Infuse-a-port and the Hickman. They want to take both out. Can you come?" 271 I told her, "Cameron left about forty-five minutes ago and should be there in a few minutes. I'll be there in an hour and fifteen minutes." I hung up the phone, closed up my work, changed clothes, locked up the house and drove to Iowa City. She had really given me two pieces of bad news rolled into one message. The first was that she wouldn't be able to come home. She had been looking forward to Monday. The second was that she would have to return to surgery to have the two lines removed. Her past experiences there hadn't been very good and I was sure that was bothering her. When I got to Gay's room, she was lying on the bed with a cold cloth on her forehead and Cam was in a chair on the far side. Gay said she was feeling better than when we were on the phone. She also said that she had been sleeping a good part of the day and wanted to do something other than sit any longer in the room. Perhaps we could go to the mall in downtown Iowa City, she suggested, before she had to be hooked up for her antibiotics. While she was getting ready to go, I went to the physicians' room to find the doctors. Jim was sitting at the table and waved me to the chair next to his. Judy was across the room at the computer terminal. "I can tell you some additional things the lab has found in the last twenty-four hours," Jim volunteered. "I would appreciate that." "You already know that the lab found both a Gram negative and a Gram positive bacteria in cultures grown from blood taken last Monday from Gay's Hickman. That lead us to believe the Hickman was harboring one or perhaps both of the bacteria. Now the lab reports that a bacteria culture has been produced by the blood drawn from the Infuse-a-port, also. We have been administering antibiotics for four days and are no longer growing cultures of the Gram positive bacteria from blood drawn from either of the two lines. We are still getting cultures of the Gram negative from both." "From this I assume the antibiotics are being effective against the Gram positive bacterium, but not the tougher Gram negative," I concluded. As I was drawing this observation, Judy finished at the terminal and joined us at the table. "That's what we're concluding. We originally thought that the Gram positive originated in the Hickman and, since it is not so resistant to drugs, could be killed with the Hickman in place. We thought the Gram negative was elsewhere in Gay's body and did not have the protection of the Hickman. If that were true, we felt we 272 could also kill it without removing the Hickman. The Gram positive is gone, but now we're thinking the Gram negative is in both lines and will be very difficult to kill off as long as it's in there. That's because it's both tough and has a good hiding place." By this time Gay had joined us and was standing behind my chair, listening to the conversation. "Why do you think the Gram negative is in the two lines?" I asked. "Mainly because the blood that grew the cultures came out of both lines." "If I understand this correctly the bacteria is floating in the blood stream and all of the blood that has been drawn from Gay since she has been in the hospital this time has come through either the Hickman or the Infuse-a-port." "That's right," Jim replied. "I can tell what you're driving at and you're right. We really can't be sure that the infection is coming from either of the lines. It's more of a hunch or an educated guess. That's one reason we have asked the infectious disease specialists to review Gay's case on Monday and give a recommendation. If we elect to have the lines removed, it would be done on Tuesday." I thanked Jim and Judy for the information. It appeared that we were dealing with a decision that was not as clear-cut as it seemed on the surface. We thought calling in the infectious disease people was a wise decision. We would be interested to hear their conclusions and recommendations. It sounded like a decision should be made by Monday night to get Gay on the Tuesday surgical schedule. Gay and I headed for the mall. Cameron had a date with a cute gal who had just returned from Denver where she had played in the Junior National Volleyball Tournament. That clearly took precedent over a stroll through the Iowa City mall with his parents. After the mall we had a light dinner. It was early so there were very few people in the restaurant which was perfect for us. We didn't want to expose Gay to very many people, and their germs, in an enclosed space. Gay's stomach had felt a little uneasy at the mall and, unfortunately, felt worse during the meal. We cut dinner short and headed back to the hospital. Shortly after we arrived in Gay's room, Margie came in to hook Gay up to the IV and start the antibiotics. Gay got sick to her stomach right after that and Margie gave her Compazine and later Ativan to prevent a repeat. I rubbed Gay's forehead with a cool cloth until she went to sleep. I then called Mom and Jack to let them 273 know of the day's events and then kissed Gay good night. She woke up long enough to acknowledge my kiss and went right back to sleep. I headed for home. The conversations of the last couple of days kept playing through my mind all day Sunday. The more I reviewed, the more it became clear that there were several questions involved in this decision and that the answers were not clear. Was the infection coming from the Infuse-a-port, the Hickman, both or neither? If it was coming from one of the lines, should one or both be removed? If so, should Gay have either or both lines replaced for future use? Finally, if surgery was required, what could be done to ensure that the procedure would be successfully performed? I was not too worried about the removal of either of the lines, but I was very concerned about the quality of the surgery if one of the lines had to be replaced. I wanted to get as much additional information about each question as I could and bring it to Gay before the end of the day on Monday. I called Roger on Monday morning and discussed each facet with him. He helped me to form the issues and understand the available alternatives. At the end of the conversation I reminded him of the problems Gay had with the placement of the original Hickman and asked if he could ask Dr. Al-Jurf to put in any new lines that might be required. I told him I knew he would have to cross departmental lines to do this and it might be politically risky. He replied that he understood my concern and Gay's and would make the request. He felt he would receive cooperation. He then briefly reviewed the process involved in removing the lines so we would know what to expect. When I hung up the phone, I had more information, but could see there was no clear-cut direction that made more sense than any other. I arrived at Gay's room that afternoon to find her awake and sitting up in bed, watching television. She switched off the set when she saw me coming through the door. "You should have been here this afternoon. Mom and Jack were here as they have been each day. But, at one point I had several doctors from the infectious disease staff in this small room with us, all trying to figure out where the infection was coming from and what to do about it. I was impressed. I'm sure I had the best people the hospital has working on my case. There was a lot of discussion. Some thought the lines should come out and others said they couldn't tell where the infection was coming from and the lines should stay in, at least for now. I never got the feeling that any consensus was ever reached. In short, I can't tell you any more than I knew last night when you left. They may have told Jim something, but nothing was decided while they were in here." 274 "I'll see if I can find Jim and chat with him," I said. "I'll be back soon to let you know what I find out." I spotted him in the administration area as I walked out the door. He was looking through some records at the counter. When he saw me, he smiled in recognition and motioned to me to join him. We discussed the pros and cons of each question for about fifteen minutes. Once again I was getting the impression there were no clear-cut answers. Jim was coming to the same realization and said so. "I don't think we are going to find the perfect set of answers, certainly not from the medical point of view. Perhaps we should ask Gay what she would like us to do." It was one of those rare suggestions you hear now and again that has the unmistakable ring of reasonableness and common sense. I responded, "I think that's an excellent idea. I think I can summarize the issues along with the alternatives fairly well at this point. I'll do that right now and see what she wants to do. I think we will have direction before too long." I returned to Gay's room, relieved at this turn of events. I knew Gay had formed a preliminary judgment of what should be done and was waiting for the final thoughts of the doctors. She really needed a concise analysis of the facts, as we knew them at the time, to match against her intuition. I felt I could now give that to her. I was sure Gay would be able to break this stalemate after the review. "After a lot of thought and discussion, Jim feels there isn't one decision that makes more medical sense than another and, because of that, thinks whatever you want to do would probably be the best decision. I agree with that wholeheartedly. I had a helpful talk with Roger this morning and Jim reviewed with me what he knows. With those two discussions, plus what we know from earlier conversations, I think I can summarize for you." "That's great," Gay said, "let's have a go at it." "The first question is, do you still have an infection to fight? We haven't seen a Gram positive culture since the one grown from Monday's blood sample. It seems the antibiotics have knocked it out. That leaves us with the Gram negative. The last culture of that was grown on Friday. Since we haven't seen a culture for three days, we could assume that it's gone, too. Jim feels, however, that the fact we got a culture on Friday, after four days of antibiotics, is remarkable enough to assume it's still there. He is also concerned that this bacteria can grow rapidly and cause serious damage. The safest bet is to act as if it's still in your system." 275 "That makes sense to me," replied Gay. "Go on." The second question is whether you should have either the Infuse-a-port or the Hickman removed. Here's what we know and don't know. We know that the culture grown on Friday came from a blood sample drawn from the Infuse-a-port. That doesn't necessarily mean that the infection came from the port or the Hickman. It does mean that it's in your blood stream. Roger told me this morning that infections tend to grow more easily around artificial objects in the body like the plastic lines in your veins. Jim made the same point a few minutes ago and it ties in with what Judy was telling us a couple of nights ago about the bacteria hiding from the white cells in one of the lines. That makes the lines suspect." Lynn Baatz came at that point. We told her what we were discussing. She said she wanted to talk about the same thing and suggested we continue while she listened. Gay picked it up. "It sounds like the safest route is to assume one of the lines is infected and remove it, but which one?" "We could get at that by asking what you want to end up with when you go home, a Hickman, a port, or neither." "I suspect I'm going to need platelets and probably medication well into the future so I'll need one of them." "I must reluctantly agree. So, which one? They both have good and not so good things about them. The Infuse-a-port is completely under the skin and some people feel that makes them less vulnerable to infection because of that. Jim doesn't agree with that, by the way. He told me that assumption can't be statistically supported. You have to have a nurse flush it once a month, but other than that, it requires very little maintenance from you. It is harder to use, however, and you would probably have to have a nurse come in, even at home, to administer medication through it. If you require very much intravenous medication, the constant needles would be uncomfortable and would wear out your skin over the port." "The Hickman requires a lot of your time in daily care, but you can do it yourself. It may be more prone to infection, but it is much easier for you to use and would allow you to give yourself medication at home." "That's a good summary," Gay commented. "I want to be able to self-medicate at home, and since I think I'm going to have a lot more of it ahead, I should end up with the Hickman." 276 "That leaves two reasonable choices. One is to take out the port and hope that the Hickman isn't infected. If the fevers return or more cultures are grown, you will probably have to have the Hickman removed and then replaced. The other is to play it safe all the way by having both removed and the Hickman replaced in a few days after the antibiotics have killed the infection. Unfortunately, that option means you have to go through the discomfort of putting the Hickman back in. Since you have gone through that twice before, you know what to expect." Lynn nodded her head at several points in the discussion to indicate she was in agreement with what Gay and I were concluding. "That pretty well sums up what I think we know, Gay. What do you think?" Gay thought for a moment and then said, "This little discussion has really helped break down the decision into bite-size parts and puts it into perspective. I think this is a time to play it safe. Let's take both lines out and when the infection is gone, put the Hickman back in." "I think that makes good sense," Lynn said. "They usually do these types of procedures on Tuesdays and Thursdays. I expect you will have the lines taken out tomorrow." Gay looked at me and asked, "Can you be here for the operation?" "Yes, I intend to be here." "Will you stay in the operating room with me?" "I would like to be. I'll try to arrange it." "I would feel better if you were with me." I turned to Lynn, "Do you think this will be done in the afternoon?" "I'm sure it will be. They generally take the more complex cases in the main operating rooms in the morning and then do the ones requiring only local anesthetics in the Surgical Clinic in the afternoons." "I'll check with Rhonda in the morning to see if she can give me a more specific time." 277 "That would certainly be the best way to find out," Lynn commented as she left the room. I was very pleased and very proud of my wife. The decision had been made by the right person for the right reasons. I called Rhonda at 8:30 the next morning. She told me the Surgery Clinic was unable to be more precise than to say that Gay was scheduled for that day. Rhonda felt they wouldn't get to her until after 2:00 that afternoon. Shannon didn't have classes that afternoon and wanted to go with me to the hospital. I picked her up at St. Ambrose and we arrived at Gay's room at 1:45. As the afternoon wore on, it became evident that they were not going to take Gay in Surgery that day. Mom and Jack gave up and went home about 5:00. Waiting for a date with Surgery was a nervous business. Gay told me she had been sick to her stomach and had diarrhea two nights in a row. Jim, Lynn and Judy came in on rounds at about that point. They said the surgery would go the next day for sure, probably in the afternoon. Jim expressed concern that Gay had vomited the last couple of nights and said he felt she should go for a barium x-ray to get a good look at the upper GI tract. He explained that the procedure called for Gay to drink radioactive barium and then have x-rays taken. The barium would show irregularities in the GI tract that would not be detected with a normal x-ray. He felt there was a good chance that the cause would not go away on its own. They could get everything else cleared up and still have to keep Gay in the hospital to track that down. He said we would schedule it as soon as possible. If the x-ray showed nothing, they would consider looking down her throat and into her stomach with a scope. Gay ate a little food from her tray that night, but it came right back up again. We hoped the x-ray would reveal something that could be quickly and easily cured. Rhonda had no more luck getting a time commitment from the Surgical Clinic on Wednesday morning than the morning before. She felt that the surgery would not go before 2:00. I arrived at 1:50. Laura was there along with Mom and Jack. Gay told me, "The surgeon came up to see me around noon and told me that he was going to take out only the Infuse-a-port and that the Hickman wasn't infected. Last night I thought we decided to take both out and that's what I told him." 278 Jack handed me a piece of paper with the surgeon's name on it, Dr. John Canyon (not his real name). He had copied it down for me when the doctor introduced himself. I put it in my pocket where I could easily find it. "Thanks, Jack, that will be helpful." I turned back to Gay. "Did he believe you?" "I don't think so. He seemed to feel he was right." "Don't you worry about it. I'll see if I can get it straightened out. Communication can get mixed up in a large organization. I don't think it will be a problem." I went out to find one of the doctors and found Judy in the physicians' room. I explained what Gay told me. She listened carefully and then said she had told them both lines were to come out. She would call the Surgical clinic just before Gay went down to make sure Dr. Canyon understood what was to be accomplished. At about 3:00 Mary came in to tell us the clinic was ready for us and asked Gay if she wanted any Ativan or Demerol to relax her. She decided on Demerol. Laura said she had to depart, wished Gay luck and headed for home. Mom decided she wanted to go with us to Surgery. Jack thought he would be in the way and said he would stay in the room. A few minutes later Mary returned, administered the drug, and then lead the way with the wheel chair down to the third floor and the clinic. I carried the records and a second nurse we hadn't met pushed the IV stand. We waited in a back hall outside the small clinic operating rooms for about ten minutes and then Gay signaled me that one of the two men walking toward us was Dr. Canyon. When the men got close, we all introduced ourselves. The man with him was Dr. Glenn (not his real name). One of the nurses told us she thought Glenn was a second year resident and Canyon was a fourth or fifth year fellow. I was about to ask Dr. Canyon which lines he was planning to remove when he volunteered that he had talked with Judy and agreed that both lines should come out. He thought that was a good decision. The nurses wheeled Gay to the operating room and I followed with Dr. Canyon. "Do you mind if I stay with Gay during the operation? I think it would make her feel better." He hesitated for a moment and then replied. "Well, often when people stay in the operating room during surgery, they faint or get sick. Then I have two patients to take care of. I don't want that to happen." 279 I didn't say anything. I just walked by his side and looked at him. As we entered the operating room, he said, "This isn't normally done." Then he saw the nurse standing with her back to us on the far side of the room and continued, "Ask the nurse. She's the boss." She had heard enough of the conversation to know the question and shot back, "It's up to you, doctor." By this time he had gone into another room to scrub and didn't answer. The nurse turned around and I caught her name tag. Her name was Cindy. I introduced Gay and myself. She acknowledged our presence and then said, "Civilians in the operating room sometimes faint and hit their heads when they fall." I was getting the message that I had entered hostile territory, but Gay wanted me to stay and that was enough for me. While all of this was going on, the other nurses had gotten Gay up on the operating table and Cindy secured a strap across her hips to hold her on the table. I made conversational chitchat with Cindy and then sensed that Gay was getting cold. I asked Cindy for another sheet to put over Gay. She got one. By this time we had waited for Dr. Canyon for quite awhile and Gay started to cry. Cindy got a third sheet and then found out that the doctor had been called to another operating room. It was now pretty uncertain how long Gay would be on the table waiting for this operation to begin. I held her hand and stroked her head. She was cold, had depressant drugs running through her veins and was apprehensive about this operation. This was hardly an ideal time to have to wait on an operating table. There was no more talk designed to discourage me from staying with Gay after that. I don't know if Cindy thought I might actually be helpful to the patient or just gave up, but the result was the same. At about 4:00 Dr. Glenn came in and pulled on his surgical gown. Cindy gave him a mask and handed one to me. Cindy went over to Gay and pulled back the sheet from her chest. She washed Gay's entire chest with Batadine, an iodine solution and then blotted it off with gauze. Dr. Glenn repeated the process and removed the Batadine with swabs of alcohol. He then placed blue linen around the Hickman and the Infuse-a-port. He and Cindy set up a drape between Gay's head and the rest of her body so she couldn't see the area to be operated on. At about 4:20 Dr. Canyon came back in and asked Cindy to page someone on the phone system. While she was doing that, he put on his gown and gloves and began to inspect the work done thus far. Dr. Glenn brought over a consent form and gave it to Gay along with a pen. It seemed that the operation was about to begin and she really didn't feel she had time to read it before signing. This could have been done much earlier. We certainly had enough time to read it a dozen times while we were waiting. The page came through and Cindy held the phone to Dr. Brakstead's ear, since he had 280 scrubbed and didn't want to touch the phone. He gave the caller instruction about another patient. When the conversation was over, Cindy wheeled a stool over to me and suggested I could sit by Gay's head. I decided to stand by her head so I could see any signs of pain on her face and follow the progress of the surgery at the same time. I was happy to have the stool close at hand, though, so if I felt queasy, as had been predicted earlier, I could immediately sit down. I thanked her for bringing it over. Dr. Glenn was on the right side of Gay and Dr. Canyon was on the left, next to me. The first objective was to remove the Infuse-a-port over on Ryan's side. Dr. Glenn worked under Dr. Brakstead's direction. He made an incision toward the lower side of the port. He then held the two sides of the skin open with a spreading tool and carefully cut further into the tissue above the port until it was exposed. Dr. Canyon reached across Gay and took a hold of the top of the port with his forceps, a pliers like instrument. As he began to pull upwards on the port he asked Gay, "Are you all right? Do you feel any discomfort?" "I can feel pressure, but no pain." I stroked Gay's head to let her know I was there and to calm her. "Don't hesitate to let me know if anything we do is painful." He gently pulled the port upward as Dr. Glenn cut just enough of the tissue away to allow the port to squeeze through. It was followed by the plastic tube that went into the vein. Gay asked, " Are you going to test the port for infection?" The doctors didn't hear the question so I passed it on. Dr. Canyon replied, "I'll get a swab of tissue and fluid from the port for testing." Cindy heard this and got a swab and specimen bottles to put the samples in. Dr. Canyon wiped a swab across the port and placed it in one bottle and then cut the end of the tube off and dropped it in the other. Cindy labeled them for the lab and set them on the table against the wall. Dr. Brakstead's beeper sounded and he asked Cindy, "Would you get the beeper and call the number?" Cindy took the beeper off his belt and called the number showing on it. At the end of the conversation she reported, "That was a doctor from Fort Dodge. He wants you to know that his patient, who was scheduled to be here this afternoon, won't be coming." Dr. Glenn said, "I wonder why that is." 281 Dr Canyon answered, "I know why." Dr. Glenn quipped with a chuckle, "Because she died?" Gay gave a little shudder at this. I had been stroking her head since the procedure had begun and could feel her reaction through my hand. I reflected to myself that operating on people was probably such a routine part of these three people's lives that this type of humor was perfectly acceptable and, perhaps, even helped break the tension that I imagined could develop in this line of work. I had also wondered if the woman had died, but thought it showed poor judgment to voice it with a patient listening on the table. Dr. Glenn washed the wound with sterile water and stitched it up with a hooked needle. Dr. Canyon started working on the Hickman. "Are you still okay?" He asked. "I know one of you is taking stitches, but it doesn't hurt." He inserted a blunt nose forceps into the hole where the plastic tube came out of Gay's chest. He spread the head of the forceps apart inside the hole to break the scar tissue away from the tube. He turned the instrument around the tube and pushed it a little further into the hole. He then spread the forceps again to break more the tissue away from the tube. Each time he did this, he pulled gently on the tube, testing it to see if it was loose enough to come out. At one point Gay's face showed a sudden wince of pain. I told Dr. Canyon. Gay confirmed it hurt and he applied more Lidocaine to the area, waited a moment and then carefully continued. The Lidocaine was doing its job. It soon became clear that the line was not about to come loose. Dr. Canyon was searching for a reason why the tissue was adhering so tightly to the tube when he asked, "How long has this been in here?" Gay immediately replied, "Since early March." "Oh, that explains it. This line has been in here quite awhile." Then, to draw a contrast with another patient's situation he didn't approve of, he added, "Do you remember that Hickman we took out the other day. That woman had it in for only four days." 282 "Yes," said Cindy, "I wish the doctors who order these devices could spend a day with us and watch what the patients go through when we put these things in and and take them out. They would find another way if the need was for such a short time." I had two reactions almost simultaneously when she said this. The first was of some surprise. I assumed that most doctors who ordered Hickmans placed had observed the procedure at one point in their training and did know what the patient had to go through. If they didn't, I had to agree with Cindy; they should know. The second was of understanding. I had often heard the people who sold equipment say they wished the people who manufactured it understood their problems and the manufacturing people say the same thing about those who did the design work. It occurred to me that the world could do with a lot more understanding of the other guys' problems. These thoughts took only a fraction of a second to register and I was back checking Gay's facial expression for signs of distress and stroking her head. Dr. Canyon made an incision about one and a half inches above the original opening. The tube had a cuff on it about an inch inside the skin. It was the cuff that was holding the line so firmly in place. At this point the phone in the operating room rang and Cindy answered it. The call was for Dr. Canyon who left his work to take the call. Cindy held the phone for him as she had done before and hung it up at the end of the conversation. The doctor returned to the table to resume the operation. The second incision allowed the doctor to reach the cuff and partially loosen it from the surrounding tissue. Gay gave out a yelp at this point to let Dr. Canyon know that she was feeling pain. I stroked Gay's head and then her shoulder. He stopped, applied more Lidocaine and then continued. He maneuvered the nose of the forceps under the tube and leveraged a loop of it to the surface of the incision while at the same time loosening the tissue from the tube upstream from the incision. The tube came loose and he pulled it free of the hole. He then finished loosening the tissue around the cuff and pulled the other end free, also. He cut a section of the tube and put it in a bottle Cindy gave him. He then put a single stitch in the incision and closed it the rest of the way with three pieces of special tape called steri strips. As he was performing this last part of the operation, a woman hurried in from the adjoining operating room and stopped abruptly behind and to the left of Dr. Canyon. She was obviously distressed. "The woman they just brought in next door says she wants to be put to sleep for this operation." 283 Dr. Canyon shot back, "Why does she say that?" "She says she's gone through this procedure before and wants to be unconscious. She's very insistent." Dr. Canyon was visibly agitated by this situation. It appeared that he didn't feel the demand of the woman in the next room was reasonable and accommodating her was going to require some adjustments he didn't want to make. "Is she refusing to have the procedure done?" "Well, she's close to screaming at us. I'd say she is refusing, yes." "We can't do it in these operating rooms. We would have to schedule it for tomorrow in the regular operating room." The woman shifted her weight uneasily to the other foot and asked, "What do you want me to do with her?" He thought for a moment as the woman waited for her instructions, then snapped, "I'll be over as soon as I'm through here." The woman left as abruptly as she had come in. When Dr. Canyon finished what he was doing, he asked Dr. Glenn to complete the work on Gay and went into the next room. After a few minutes we could hear loud voices and Cindy commented, "It doesn't sound like he's getting anywhere." We never did hear whether the woman got her way. Dr. Glenn finished dressing the two incisions and left the room. Gay took my hand and began to cry. Dr. Canyon came back in the room at that point and when he noticed this, he turned to me and asked, "What's wrong?" "She's relieving the tension that's built up over the last two days," I replied. Cindy and I helped Gay off the table and back into the wheel chair for the trip back up to her room. We found Mom sitting in a chair outside the operating room when we emerged. She fell in step beside Gay as we headed for the elevator. "How did it go, Dear?" she asked. 284 "We got both lines out, Mom, and, hopefully, the source of the infection with them. I'm sure glad Demi was with me. It would have been much harder for me without him." "I'm glad, too. When I heard him ask the doctor if he could stay with you, I fell back so he wouldn't think we wanted both of us in there." Shortly after we got Gay back to her room, Mom and Jack left for home, leaving us alone. "How are you feeling by now?" I asked. "Much better, now that the operation is over. I was freezing the whole time we were in there. I wish the hospital would pay their heat bill. We would have been in there for a much shorter time if there hadn't been so many interruptions." "There was a lot going on that had nothing to do with you or taking the lines out. There was a substantial delay at the beginning because the doctor was called away to another operating room. After we got going, there were four different interruptions caused by outside forces. I seriously question if a surgeon can do his best work when his mind is being pulled to so many other cases while he is performing an operation. In fact, most people would have a hard time doing their best, regardless of their job, under these circumstances. "The two doctors discussed the cases of several other patients while they were working on you. Did that bother you?" "It did. It made me a little more anxious because I didn't want what happened to some of them, happening to me. Beside, we might have known some of those people and they were discussing private things. The same thing happened the other times I've been in the operating room." "I got the distinct impression," I observed, "that these doctors don't have any other time to discuss cases except when they have a patient on the operating table. I'm not sure what causes this situation or how to correct it, but I would guess it makes most patients nervous and it isn't in their best interest. We can gripe about it, but I don't think it's a very easy problem to solve. There are many different interests to be satisfied. The patients want or need rapid service. It would take more doctors and other staff to give all the individual attention people think they should have. Society is already paying an awfully high price for health care. Staffing up to that 285 level would substantially increase it. I think we have just witnessed a small example of a bigger problem." Gay shifted in the bed to pull herself into a full sitting position. "What single piece of advice would you give someone coming in for a bone marrow transplant, or any other procedure for that matter?" I thought for a moment. That was a challenging question. "I would suggest that they take a major part in the management or at least the coordination of their own care. When I think of the dizzying array of medical specialists you have seen and couple that with the turnover of nurses and the fact that the doctors, residents and fellows in the Transplant Unit completely change every month, I'm struck by the fact that there is only one constant player in this or any number of other medical dramas. That's the patient. In some cases the patient may be lucky enough to have a second constant in a family member or close friend who sticks it out for the duration. The advice would be that for best results you had better understand what's going on so you can tell when something isn't going as it should. Ask all the questions and read the material that's available to at least understand your diagnosis, the nature of your disease and its treatment. Have a good understanding of what the various professionals are supposed to do to carry out that treatment. If something starts to happen that is counter to what you understand should be happening, question it until you are satisfied with the answers. The people who are caring for you are humans and subject to the same fallibilities, stresses and pressures of time as the rest of us. No one should be more concerned about, or more affected by, the outcome of your treatment than you are. If that's not the case, we are probably dealing with a patient who has a serious attitude problem. "A patient's medical file can become so thick that it defies reading, so a doctor who is new to your case may rely on you to fill in some, or a lot, of the case history. Be prepared to do it accurately. Know what's happening. If you can accomplish this, you will probably have the kind of positive attitude and fighting spirit that will help the doctors help you lick whatever you're up against. "You would probably tell me it would take a fully functioning, healthy individual to do all of that for the full term of his or her treatment. I would agree and suggest that, to the extent patients can participate in the management of their own care, the more in control and the less frightened they will feel. I think it will enhance their chances for successful treatment." "You're right, I will tell you that it can't be done all of the time. I couldn't do it during the time I was taking the radiation treatment and doing the heavy-duty 286 chemotherapy. There were other times, too, when I was so sick I couldn't concentrate on what others were doing for me. I am very lucky I had you to count on. I have a lot of confidence in the people who have cared for me and I think Roger is one of the best, but the baton does get passed and it can be dropped. I felt things were under control as long as you understood what was happening. That helped me a lot." Gay was interrupted by the nurse. Since Gay no longer had a port or a Hickman, she had to take the IV by needle in her arm. Lynn placed the needle, but, unfortunately, the only vein that would take it was the one in the crook of her right elbow. She had to have her arm strapped to a board to straighten and immobilize the elbow so she wouldn't bend it and push the needle through the other side of the vein. It was both uncomfortable and awkward. Gay's right-handed and the board made it very difficult for her to do anything with her right hand. I got a carry-out meal from the cafeteria and brought it back to Gay's room and ate dinner with her. After that we spent a quiet evening watching TV. Quite a contrast to our afternoon. When I arrived at the hospital the following evening, Gay greeted me and then described her afternoon's experiences. "I had my barium x-ray this afternoon. After it was over, I eliminated a lot of it, but the nurse told me I might have a sudden call to the bathroom to get rid of the rest. Well, I'd been back in the room for a while when I felt the call. I pushed the IV stand into the bathroom and then used my left hand to pull on the draw string holding my pants up to untie it. The string tied itself into a knot. I couldn't untie it with one hand so I tried to push my pants down. I couldn't do that either, at least not in time. So there I stood, in front of the toilet with my pants tied securely around my waist having barium diarrhea. It sounds humorous as I tell it to you, but I was pretty disgusted at the time. Luckily, there's a pull cord in the bathroom to call the nurse. She had apparently seen all this before because it didn't seem to surprise her or perturb her in the least." "After all of that, did you get any results from the x-ray?" "They had pictures on a TV monitor and were taking film. They didn't seem to find anything on the monitor. They won't have results of the x-rays for a day or two." On Friday evening when I arrived, I found Penne just winding up a visit with Gay. After about twenty more minutes she announced she had to get home to her family and departed. 287 Gay still had the IV in her right arm, but was managing reasonably well with her left. Her counts were all down sharply and she was getting red blood cells run in through the IV. After Penne left, Gay pointed to the tray on the table. It had two sad-looking pieces of bread with a single slice of cheese on wilted lettuce. I had to admit it didn't look very appetizing. All of this was to tell me she was hungry and wanted some food. I went to the phone book to see if the yellow pages might suggest a place that had good food and delivered. I thought this would be too much to expect, but to my surprise I found a place called Fries that advertised ribs and delivery. Gay thought that sounded great and got enthusiastic at the prospect. "It will be interesting to see how my mouth tolerates ribs." Gay's nurse, K. C. Palalay came in during our discussion and confirmed that ribs from Fries would be a good choice. I phoned in the order and an hour later we were eating messy, but tasty ribs, with our fingers, of course. Gay did very well with her left hand and thoroughly enjoyed them except they did bother her mouth quite a bit. She managed that with liberal doses of Lidocaine. This was a welcome change from what we had been eating for dinners the last several nights. We spent the rest of the evening watching sitcoms on TV and then a movie about a wheat farmer's struggle for survival. In the middle of this relaxing evening Gay announced she had to go to the bathroom quickly. I unplugged the IV pump and wheeled it behind her into the bathroom. She was having trouble with the draw string on her pants again. I offered to help, but it was too late. The diarrhea started coming and there was nothing we could do about it. It had happened again. We looked at each other and burst out laughing. As we worked together to clean up the instant mess, my mind turned back to the times when this happened as a result of the radiation and chemotherapy. How different this was. We were not facing a life-threatening situation this night. That made laughing a lot easier. We cheerily finished the clean-up and I got Gay another set of pants. Then we went back to see the rest of the movie. Linda came up on Saturday morning and kept Gay company the rest of the day. Several other visitors also stopped by during the day. Judy changed Gay's IV early Saturday morning. She was successful in getting it into her left forearm. That was much more comfortable. A little later Jim, Lynn, Judy and Scott all came into Gay's room on morning rounds. Jim sat down on Gay's bed. I had never seen him do that before and 288 thought this was a tip off that he was about to tell her something she didn't want to hear or ask her to do something she didn't want to do. "The barium x-ray didn't show anything to explain your vomiting, Gay. I'm concerned that we can't find the cause." Gay guessed that he was going to suggest an examination of her stomach with a scope, so before Jim could get any further with his explanation, she cut in, "I don't want any scope shoved down my throat or up my rectum. We've run all kinds of tests. I think if there was something to find, we would have found it by now and I don't think a scope is going to tell us anything more." Gay doesn't often dig in her heels, but it was very clear that she had made up her mind. Jim sensed this and thought a moment before he replied. Then he said, "Odds are that you're right. We'll think about this a little more. We haven't seen any more evidence of infection since your lines were removed on Wednesday. You haven't had any temperature spikes, either. Assuming that all stays the same, we have scheduled you for the Surgical Clinic on Monday to have a Hickman put back in. We'll want your platelets up around 50,000 during the operation, so we'll probably give you platelets just before going down." "Do you think that will go in the afternoon, the same as when she had the lines taken out?" I asked. "I would think so," Jim replied. "If we get any word to the contrary, we'll let you know." Steve came in later and hung a plastic medication bag on the IV stand and ran the tube through the pump. He explained, "This is an antibiotic called Flagyl." He spelled the word for me. "We use it to combat the type of bacteria that often causes distress in the GI tract. The doctors feel if your diarrhea and vomiting are being caused by bacteria, this should stop it." I arranged my Monday schedule so I could be with Gay when the Hickman was replaced. I arrived at about 2:00 and found her in good spirits. When I walked in, she said, "Hi, I'm glad you're here. I'm ready to have this Hickman put back in, but I'm still a little nervous." "Do we have a time yet?" 289 "Not that I know of. From the experience we've had, I don't think they have a schedule with specific times on it. It seems like they just put people in some rough order on a list and work their way through them. "I suspect you're right. It certainly would be easier for us if they could give us a time. It would make it easier for me to schedule my day and allow you to relax more before the operation because you wouldn't be on edge thinking each time a nurse came, it was to tell you they wanted you in Surgery. Perhaps they can't estimate the time each operation will take well enough to give out times." Gay sat up as if she had just remembered some news she wanted to tell me. "Jan stopped in earlier today and told me she and Steve are getting married. They have both been going through divorces. She said she didn't have many people she could share this with. I think she just wanted to talk about it a little." "I think it's wonderful that she chose you and that you could help. They have both been so nice and helpful to us that it's gratifying to be able to give them back a little in kind. That shows that this hospital isn't all clinical. It has a very human side, too. People who are here can interact on a personal level as well as a professional one." "We have certainly benefited from the caring and understanding of the professionals in this Unit," Gay added. "I could easily put Clinic B and Radiology on that list." At 3:00 a nurse came in to tell us that the Surgical Clinic had just called to confirm that Gay would be going to Surgery that afternoon and they would be ready for her soon. Gay would need platelets before she went. She explained they had waited until the last minute to make sure she was going to go that afternoon and to ensure, that during surgery, the platelets were at the highest level possible in her blood stream. As the platelets were running in, she also gave her a small amount of Ativan and Demerol to relax her during the operation. Gay was ready to go about forty-five minutes later. Two nurses arrived with a wheeled cart. They helped Gay on to the cart and a few minutes later we were in one of the small operating rooms in the Surgical Clinic. Dr. Al-Jurf came in shortly after that with Dr Canyon. I asked Dr. Al-Jurf if I could remain with Gay and he said I could. Dr. Al-Jurf was going to perform the procedure and Dr. Canyon was going to assist. 290 The nurse scrubbed Gay's chest and neck with Batadine and Dr. Al-Jurf repeated the cleansing. A drape was put in front of Gay's face as before. Dr. Al-Jurf anesthetized the area to be worked on and waited a few moments for it to take effect. He then made an incision on the right side of Gay's neck to expose the vein that would house the Hickman tube. He then made a second short incision in Gay's chest about five inches below the neck incision. He inserted a thin steel rod in through the chest incision and worked it carefully under her skin to the incision in her neck. He then attached the end of the Hickman line to the end of the rod and pulled it through to the neck incision. He made a small opening in the vein and inserted the end of the tube in the opening and down into the vein. He stretched and wrapped the tissue from the vein around the tube to form a tight seal so that blood could not seep out of the vein. When that was completed, Dr. Al-Jurf sewed up the incision at Gay's neck and Dr. Canyon put a stitch in the chest incision to hold it closed. They then dressed both incisions and asked the nurse to call for a portable X-ray machine to check the placement of the line. A few minutes later an x-ray technician rolled in a large x-ray machine and positioned it over Gay. We stepped out of the room, the x-ray was taken and the technician left to develop it. In about ten minutes he returned and placed the film in the viewer on the wall. Dr. Canyon immediately pronounced the placement of the Hickman perfect. I had never seen a picture of a line inside a person's vein so it took me a little longer to understand what the film was showing us. I asked Gay if she wanted to see it. She said she did so I went to the viewer and traced the line for her. She was able to lift her head enough to see it. The film showed the loose ends of the lines curled on top of Gay's chest. It formed a straight line from the chest incision to her neck. The line then made a smooth curve and headed back down inside the vein to a point just above the entrance to the heart. It certainly looked neat and tidy. The entire procedure had taken about thirty-five minutes. There had been very little discussion about other patients and no outside interruptions after the procedure began. Dr. Al-Jurf told Gay what he was doing as he went along and asked her to report any discomfort. He also gave Dr. Canyon several pointers on his technique. I stroked Gay's head and watched her face for signs of distress. She felt pressure at various times and on two occasions experienced a sharp pain in her chin. Dr. Al Jurf felt that a nerve was being stimulated that led from the incision in her neck, where he was working, to her chin and administered additional anesthetic to the incision each time. This procedure had gone much better than the others from our point of view. 291 That night, when it was time to draw blood, we were delighted to find that the Hickman worked very well. We wouldn't have to repeat the experience. Gay's temperature remained below 100 for the next two days and no new cultures were grown that would have shown signs of infection. Her vomiting and diarrhea had also stopped. She was released on Wednesday, July 18, to come home. That was another marvelous day. 292 CHAPTER XVII THE EYES HAVE IT Gay began walking with Linda in the mall in the mornings and walking with me at night. Her energy level grew daily as it had the previous times she had returned home. Her eyes were still sensitive to the light and she wore sunglasses whenever she was outside and often when inside. She went back on her old schedule of visiting Clinic B on Mondays and Thursdays. The first few times she saw Jim. Beginning with the first visit in August, she started seeing Dr. Linda Burns. She probably would have been seeing Roger in the clinic, except he was on a combination business and vacation trip. After she had been home for a week, she noticed the pain in her back and her front ribs starting to reappear. At first it was merely a suggestion of the old pain and then grew into the pain itself. Linda ordered a complete set of bone x-rays taken to compare against the ones taken when she was first diagnosed. Linda called after the x-rays had been developed to tell us that they no longer had any films to make the comparison against. They had been originally taken at Mercy Hospital and were sent back to them months before. She suggested Gay bring them up on her next visit. During the first weekend in August, a new phenomenon started that we hadn't encountered before. Gay started seeing flashes of light that seemed to be coming from either side of her. There were no lights actually flashing, but something was happening inside both eyes to create that image. Some of the flashes appeared so real and so bright that she involuntarily flinched away from them. We also discovered that two of the punctum plugs had come out of the drainage holes in the inside corners of her eyes. She went in to see Dr. Lisa Arbisser at Eye Surgeons Associates in Davenport on Tuesday, August 7. She examined Gay's eyes and replaced the plugs. In view of the complexity of Gay's overall situation and the involvement of University Hospitals in her care, Dr. Arbisser decided that she should be seen by the Eye Clinic at the hospital. She made an appointment for the following Thursday to coincide with Gay's regular visit. I was on vacation during this period and went with her on this trip. The pain in Gay's back and ribs had continued to worsen since the last time she was in the hospital, but on Thursday morning it took a turn we hadn't seen since the days just before and after her diagnosis. As Gay was getting out of bed, the muscles in her back went into spasms. In spite of this she dressed and the spasms stopped. We 293 told each other that it was a good thing we were going to the hospital since it was obvious one or more things were going on inside her body that needed correcting. We went to Clinic B as soon as we arrived so Gay could have her blood drawn and checked to determine if she would need platelets. We then went to the Eye Clinic. Gay was seen by four doctors in the clinic, two residents and two staff doctors. The conclusion was that Cytomegalovirus (CMV) was causing the problems in both eyes. Dr. Pulido, a retina specialist on the staff, explained that this often occurred in patients with inadequate immune systems and that they usually saw it in people who had AIDS. We apparently had caught the disease very early. His first reaction was that Gay's immune system would take care of the CMV if she was taken off of the two drugs that were suppressing it, Prednisone and Cyclosporine. Since we couldn't do that because the GVH was still prevalent, he recommended she go on Ganciclovir until she could come off these two immunosuppressants. He passed this recommendation to Linda Burns. There was a second, and even more concerning, possible problem. Two of the doctors thought they detected a fuzziness around both discs that surround the optic nerve where it enters the back of the eye from the brain. That could mean that the disc was swollen from pressure put on it by a tumor in the brain. The other two doctors felt the discs were normal. They took photographs of the back of her eyes in order to compare them with the appearance of the discs in two weeks. We really didn't know whether to be concerned about this possibility or not, since the opinions of the doctors were split. We felt that the strategy of checking again in two weeks was a wise one. We went from the Eye Clinic to Clinic B where Gay was told she did need platelets. Inga showed us into the familiar room where Gay usually got any IV medication given in the clinic and within a few minutes platelets were running in through Gay's Hickman. Linda Burns came in before the platelets had completely run in. She told us that the blood drawn on July 19 had grown a culture indicating that CMV was active in Gay's body again. That substantiated the diagnosis made in the Eye Clinic. She also said she felt Gay should remain in the hospital for a couple of days so they could start her on Ganciclovir and ensure it was stabilized before sending her home. She also wanted to have an x-ray taken of her back to see if they could see any reason for the spasms that morning. Gay said she could administer the medication herself at home, but Linda said the CMV was potentially very dangerous and we should take swift action to suppress it. She wanted to get the Ganciclovir started quickly. They also wanted to make sure that her eyes were not getting worse. 294 None of this was welcome news and Gay couldn't hold back her disappointment. It had been a long day in the Eye Clinic; we had learned of the possibility of a brain tumor and now she was going to have to remain at the hospital. She also had the Prednisone continuing to course through her body. We had seen how easily that breaks down the emotional resistance many times before. Gay began to cry. Linda understood all of this and I think would have loved to say, "Go home." But, that didn't seem wise. She promised Gay she would make it as short a stay as possible and left the room to tell the Transplant Unit to expect her. After the platelets were run in, we went to the seventh floor to see our old friends. Jill met us and showed us to a Laminar Air-Flow room because they didn't have any of the smaller rooms available. This room was quite a bit larger and we were glad to have it. I called Shannon and Cameron. I told them what had happened and that I would not be home until late. Shannon said she would come up the next morning. Gay and I sat in the outer room and talked over the day's events and tried to relax. Jill returned to tell us that it would be awhile before the Ganciclovir came up from the pharmacy, so Gay and I went to the cafeteria for a light dinner and then to the eighth floor to enjoy the art work and sit out on the roof top deck to take in the early evening. Shortly after we returned to the Gay's room, Jill brought in the Ganciclovir and hung it on the IV stand. She then attached the tube to Gay's Hickman and started the flow. About forty-five minutes later, when that was finished, she started Immune Globulin. The Ganciclovir was also an immune-suppressing drug along with the Prednisone and Cyclosporine and this would help bolster her resistance to disease. We watched TV until she was sleepy. We decided the x-rays wouldn't be taken until the next morning, so I got her a pair of hospital greens to wear to bed. She changed and climbed into the bed. I gave her a big hug and told her Shannon and I would be back the next day. I left as she was drifting off to sleep. I called the next morning to find out how the night had gone and to tell Gay that Shannon was on her way to Iowa City. I would come in the afternoon. I got a sleepy Gay on the other end of the phone. She told me that after I left, the nurse woke her to tell her x-ray was ready for her. She didn't get back to her room until about 2:00 AM. She ran a 102.2 temperature during the night after that and Linda wanted to hold her over another day to see if the fever spike would repeat itself. She suspected it was from the CMV and that the Ganciclovir would soon suppress it to the point where no more fevers would occur, but wanted to make sure. Gay also told me that the fever and the late night had taken a lot of energy out of her and 295 she just wanted to sleep. Shortly after that Linda called me with the same information, but in a little more detail. I appreciated her call. Shannon called me around noon saying that she would be leaving soon for a volleyball game she was scheduled to play in, but wanted me to know that her mom had slept all morning. I arrived in the afternoon and Gay was still asleep. She woke up long enough to eat a cheeseburger I brought and then went back to sleep. I brought enough desk work to keep me busy for hours and that is exactly what happened. Gay was still asleep at 10:15 that night when I decided to go home. The only times she had awakened were when she got her medication and for food. I called the next morning to hear a cheery voice answer. It was Gay and she said she had slept through the night with no further temperatures and felt very much like coming home. That was certainly a relief for me. I threw some clothes and a few other things in a bag in case something happened to force Gay into a longer stay and headed for the hospital, hoping I could just turn the car around and bring her home. When I arrived, Gay was dressed and ready to go. Linda had been in thirty minutes before and told her she could go home for the weekend, but wanted her back on Monday morning for one more check before releasing her. She also said that arrangements had been made with Caremark to deliver Ganciclovir and Immune Globulin to our home for Gay to self-administer. The first delivery would be at 2:00 that afternoon. She was to give herself the Ganciclovir three times every twenty-four hours and the Immune Globulin once every two days. With these instructions carefully written down, we gladly left for home. Caremark delivered the drugs on schedule and a nurse named Susan arrived shortly after that to instruct Gay in how to prepare the Immune Globulin. Gay decided to administer the Ganciclovir at 6:00 AM, 2:00 PM and 10:00 PM. After Susan left, I called Dr. River to bring him up to date on Gay's progress and to ask him to arrange for the x-rays, taken when Gay was first diagnosed, to be released from Mercy Hospital, so we could take them to Iowa City on Monday for comparison with the bone scan and the x-rays taken Thursday night. Shannon and I drove over to pick them up later in the afternoon. Gay had no new fever spikes or other symptoms over the rest of the weekend. On Monday we returned to Iowa City to the news that no further cultures had been grown and that Gay was released. Two days later Linda called to tell Gay that the comparison of the x-rays showed that the holes in Gay's bones had begun to fill in and that no new weaknesses could be found. That was wonderful news, truly wonderful. 296 We got another piece of good news on Gay's return to the Eye Clinic a week later. Dr. Pulido told her the discs around the optic nerve were normal, which meant there was no brain tumor, and the CMV was improving nicely. Gay continued on the Ganciclovir and Immune Globulin regimen for two more weeks. By this time Roger had returned from his vacation. Gay and I went to see him on September 3. He was very pleased with her progress in all, but two areas, her mouth and eyes. Gay's mouth was still giving her a lot of pain. The CMV in her eyes was improving, but she was still seeing flashes, her eyes remained very sensitive to the light, and she had trouble bringing things into focus. Roger decreased her Ganciclovir, after consultation with Dr. Pulido, to once a day, five days a week and the Immune Globulin to twice a week. He also decreased the Cyclosporine and the Prednisone. After the visit, Gay felt strong enough to start attending church services on Sunday mornings. We felt she would be relatively safe from the germs of others if we went to the less popular 11:00 AM service and sat way down front. She also began going to functions she had been missing over the past year and made plans to include others over time. Today is Friday, September 28, and a very happy day for us. Gay went to Clinic B on her regular visit, but with a special mission. Today she had the bone marrow biopsy scheduled for Day Two Hundred. Roger gave her the results before she left the hospital this afternoon. She was waiting in her red leather recliner in the den to tell me the news when I got home. "Roger was very pleased with my progress. He told me my liver function test came out very close to normal today. Since we have seen steady improvement over the months, he thinks this problem is under control. Then he told me what they found in the slides of blood taken from my bone marrow cavity this morning. He said the bone marrow has engrafted very well. The density of the marrow cells is not yet completely normal but is getting there nicely. All of the right cells are present in the marrow to produce the red and white cells and the platelets. He thinks production is taking place quite well. The best news of all is that they didn't find any myeloma cells." There will undoubtedly be set backs in the future, but Gay and I are confident they will be overcome with the same support system that has carried us this far. I believe there will also be many more milestones to celebrate. 297 CHAPTER XVIII CONCLUDING NOTES There are questions we had going into the transplant that are still unanswered. The answers for most of them will come only with the passage of time. Two of the major ones are: Were all of the malignant cells killed by the radiation and chemotherapy administered the week before the transplant or will there be a recurrence of the disease? What affect will the various elements of the transplant process, chiefly the radiation and chemotherapy, have on the quality and length of Gay's life? We are still reaching out for a cure in the answers to these two questions. There are other things that have come out of this experience that are quite clear, however. Gay is still with us and continues to contribute to the fabric of our family and enrich the lives of those around her as she always has. Although the road leading to her recovery has many bumps, we continue to see improvement in how she feels and her ability to go and do. Our family is emotionally an even stronger and closer unit than it was prior to Gay's diagnosis in February, 1989. Our understanding and appreciation for life has increased immeasurably. We learned how vitally important other people are in our lives. That includes friends and members of our family. It also includes those in the medical profession who contributed to the technical side of Gay's treatment, those who formed the very strong and effective support system, and those few who were a part of both groups. Gay went through the transplant as much for the love of others as she did for herself and each of those others played a vital role in her treatment and recovery. Their support and encouragement have been an ever present source of strength, hope and inspiration for us both. The strong bond of love and mutual respect that existed between Gay and me when we found out about the disease has grown far deeper, broader and stronger. We used to be each others' best friend. Now that friendship that was the "best" has grown even better. That has been a wonderful journey for us to experience together. On balance, was the bone marrow transplant the right course to take? For us it was.