Bulletins on Tom Tugman

Received from Caroline on Wednesday morning, 6 February 2002

February 5, 2002: Tuesday. Getting ready to come home. Took the van over to SCCA. JoAnn and Phil and Gary and his wife were in the van, too. We all got out, I stopped for a moment to talk to Gary’s wife. Jo walked ahead—moments later she lay flat on the floor between the two doors into SCCA. In moments, several people were there to check her out. It appears her feet slid. Her muscles are weak from high doses of prednisone, and there was nothing to grab. Luckily it did turn out she was okay except for hurting her nose and cheek, and being very embarrassed. Said goodbye to some of the people at the SCCA.

Then Ed dropped me at the Seattle funeral home, where I went in to see Tom. He will be on the same plane as me. Then I took the number 43 bus to the hospital, trying to arrange for his records to be sent. Another surprise there—Steve Shirley, Susan’s husband, has been moved into a special isolation room. He may have some strain of TB. Susan and anyone else who goes in to his room must wear isolation gear, including a respirator. Steve was upset over this setback. Susan seemed ok despite this setback.

I told her I had a song for Steve—“I gotta get out of this place, if it’s the last thing I ever do. . .” I also told her one of my other favorite songs, Jimmy Buffett: I’d rather be anywhere other than here, down in some honkey tonk, sippin’ on a beer. . .” Then I realized that I had gotten my wish—anywhere other than the hospital, but of course I hoped that Tom would get out of the hospital alive. Guess it is true—be careful what you wish for.

Rode the van back to the SCCA—saw Dave Myerson, the pathologist, heading in to the SCCA. He said he was on his way in to look at Tom’s slides. Still no answers.

Feb 4: Funeral arrangements:

I will be back late on Wednesday. Viewing at
Nash and Slaw Funeral Home, King George: 6-8 p.m. Friday, Feb 8; Mass at
St. Anthony's Church, King George, 10:00 a.m., Saturday, Feb. 9; burial at
St. Peter's Cemetary in Waldorf, MD after the mass.

Received from Caroline on Tuesday morning, 5 February 2002

[This segment is the missing narrative for the period 1-30-2002 through 2-4-2002]

January 30, 2002: Day 32. Wednesday. It is nearly 1 a.m. here. I have finally sent Tom’s story to Bob. Tom doesn’t seem to be much better, although his oxygen needs have not gone up. I try to be positive, but I have to wonder, how much longer can he go on like this? I scan the lab results looking for anything that looks better—Tom’s platelet count is ok, and his hematocrit is holding. His blood pressure is still a bit high—one other good sign.

11:30 p.m. I wrote the previous part early this a.m. I went to sleep (I stay in Tom’s room on a chair that can be unfolded to sleep on), and when I woke up, Tom was worse. He was on 45% oxygen instead of 35%, and the deep mottling on his skin had come back. His fingers and toes are cyanotic, and areas of his skin are purplish, including his heels, toes, hands, nose, lips (this is some kind of circulatory problem). He was having more trouble breathing, using his abdominal muscles. I only slept for five hours, and he is worse. This has happened many times.

I finally have a name for part of Tom’s condition, thanks to Charles: rhabdomyolysis—necrosis (death) of skeletal muscle, typically associated with a very high myoglobin (a respiratory tissue of muscle) level, which is excreted in urine. In Tom’s case, it clogged his kidneys, which is the main reason that today he had to go on dialysis.

Apparently his cyanotic toes and fingers and skin mottling are somehow connected with the rhabdomyolysis.

Events of the day: Tom had a Quinton catheter put in for dialysis, in his groin. The process went well. I hope Tom didn’t feel it. From about 2:30-4:30, he underwent dialysis. The main worries were that he would have another heart attack, stroke, and/or, his blood pressure would drop. But, a little good news, the dialysis was uneventful!

Right after dialysis, Tom was taken down to have full body CT scans—which meant, head, chest, and abdomen. The trip was difficult for the staff because Tom had to go in his bed, with two rather full IV poles, a portable ventilator, two tanks of oxygen, and a heart and oxygen level monitor, plus 2 nurses, a respiratory tech, an aide, and me. Tom had his heart attack Monday morning before noon—possibly while he was down having a chest CT scan. On Monday, I was not allowed to be nearby, but today I insisted loudly and was able to stay in the room with the others, although not with Tom. I could watch him through a window. By the time we got back, about 7 p.m., Tom was having arrythmias—quite irregular heartbeats. It took four hours for his heart to calm down. Someone threw out the tracings taken down on the second floor, but they sent off Troponin levels, and they were elevated beyond what they were on Monday. I am not clear whether this means he had another heart attack. Even the least amount of stress is too much for Tom at this point.

I am very frustrated and extremely worried, because I feel that the window of time to find a solution to Tom’s current problems is getting shorter. Still, no one knows what is going on. They have theories.

1. Everyone thinks Tom has an infection. (From my research, I think it could be caused by clostridium, which can cause rhabdomyolysis.) However, when I asked the infectious diseases doctor whether she was confident Tom had an infection, she said, “No.” Nonetheless, he is being treated with a number of broad spectrum antibiotics, an antiviral and an antifungal.

2. Tom has some graft versus host disease. The biopsies they took yesterday are inconclusive.

3. Tom had a massive drug reaction (they doubt this).

4. One of my theories—Tom had/has some sort of bizarre auto-immune reaction (they doubt this).

Both Dr. Stirewalt and Dr. Tse are tearing their hair out. They have become fond of Tom, and admire his grit and determination. They can see how much we mean to each other. They are putting in 150% trying to help him. In fact, many other people have become fond of Tom, too. They stop in to check on him and to comfort me.

I must admit my heart is breaking to watch Tom’s life slowly ebbing away. Unless something happens soon to make him turn the corner, I doubt he will make it. I am also growing increasingly worried that Tom does not ever respond, even when they turn down the propofol, the sedation agent (he is getting between 8 and 15 mics an hour, along with 50 mics of fentanyl—this is 10 times the fentanyl he was using for horrendous mouth pain). This is much worse than at Hopkins, where Tom was able to respond (though not verbally, of course, with a tube in his throat) even when under a fair amount of fentanyl and versed.

Two doctors have approached me and asked me to consider whether to revive Tom if he has a heart attack (codes). Tom is currently what they call “full code”—i.e., they will do everything to try to save him. They both pointed out that being shocked is very painful.

Tom requested everything be done to save his life. I feel I must go the distance on this. I still nurture a small hope that something will change before Tom’s heart gives out or some other thing kills him.

One of the nurses who went down to CT scan with Tom was a nurse at Johns Hopkins. She knew Lyle, the male nurse who cut Tom’s sedation while he was on the ventilator. She remembered the case that Lyle had told us about—the woman who everyone thought was dying. Her family had the hospital turn off everything except fluids. After about a week, she started to wake up instead of die. Sometimes I wonder whether Tom would do better with fewer drugs.

Tana, one of the nurses here believes that people choose to live or die. She said, “People come here to learn how to live or to die.” She believes that they don’t die unless they choose to. One of the doctors says, “No one chooses to die—processes get out of control.” I don’t think Tom has chosen to die, even though he is tired. He is still hanging on. At the end of the day here, Tom is on 60% oxygen, his heart seems stable again, and his blood pressure is still up. He is laying peacefully on his right side (he “desatted” badly on his left the other day, so he is no longer moved that way). I hope that tomorrow is better.

ANC=3,230 !!! I hope they go to work on Tom’s infection—if he has one.

January 31, 2002: Day 33, Thursday. Woke up after only a couple hours sleep. Tom is doing ok, but oxygen is up to 55%. I woke up to a room full of people who were changing Tom’s bed. This is done by first turning him to one side, getting the sheets under, and then turning him to the other side and pulling the sheets over. Tom doesn’t like being jostled. Actually there were only four nurses bathing Tom and making his bed, but it seemed like more. I started asking questions right away. “How much oxygen is he on? What is his blood pressure?” Etc.

At Hopkins, Tom didn’t mind being bathed by the nurses. He used to tell them he needed two nurses per bath, and two baths per nurse. But here, he is too snowed (unconscious) to even move.

I decided to take a shower. UW Hospital has a family room with full bath, as well as a washing machine and dryer. I took my clothes with me so I could wash them. I am not sure the last time I went back to the apartment. Tom’s room has a shower and bathroom but family members are not allowed to use them. On the way to the shower, I stopped at the front desk to ask for the lab results. They print them up for me every morning, and sometimes a second set in the afternoon.

One the way back, I encountered Hilde Wette, the dietician. Hilde is extremely knowledgeable and funny as well. We discussed Tom’s TPN (intravenous feeding). Because his electrolytes are off, his blood sugar is high, and his kidneys aren’t functioning, she is going to suggest d/c’ing the TPN for a day or two.

Back to the room, and I met Dr. Tse coming to look in on Tom. Today is Dr. Tse’s last day. He has worked 31 straight days, and been on call every third or fourth night. He was looking pretty exhausted. Rather than answer any questions I had now, he suggested we talk during rounds.

The pulmonary fellow, Dr. Mahoney came in. She wanted to get arterial blood gas. Had she managed to get the arterial line in the other day, this would have been easy. However, she now attempted to get the arterial blood gas from Tom’s femoral artery. She stabbed at him repeatedly, attempting to find the femoral artery. By the time she gave up, I wanted to do to throw her out of the room. I restrained myself from telling her just how incompetent I thought she was. But later, I told Dr. Stirewalt that I did not want her ever to attempt anything like that again.

Then a look at Tom’s lab stats. White Blood Cell Count: 3,680; Hematocrit 28%; platelets 40,000; Absolute Neutrophils 3,450!!! Tom’s counts are great—he has definitely engrafted. Unfortunately, the other lab results continue to get worse.

The respiratory tech came in, checked Tom’s settings. Last night, the tech set the breathing rate at 22 instead of 16 times per minute—worked much better. Tom is no longer overbreathing (breathing faster than the ventilator). He seems more comfortable.

Sherry asked me if I wanted to have her lighten up on Tom’s sedation to see if we could rouse him. I have such a philosophical problem with sedation just because Tom is on the ventilator. Using drugs that make you forget really bothers me. Tom hated being sedated. And not being able to get Tom to respond worries me intensely. He has not responded to me at all since he was put on the ventilator on Monday. Nonetheless, it is obvious to me since his heart took four hours last night to get back into a rhythm, that he is too fragile to take the chance of waking him up. Sherry agreed, so we decided to just let him sleep peacefully.

I looked up rhabdomyolysis both in the books I have and also on the internet. I found out more about it. Usually it is the result of a crush wound, an infection (clostridium was mentioned), insufficient fluid and being overheated (runners occasionally have it), or drug reactions (Baycol, a cholesterol drug was taken off the market after a number of people developed fatal rhabdomyolysis).

Pilar, an intensive care/dialysis nurse (a very specialized breed) came in to give Tom his second round of dialysis. The plan was to dialyze him to remove toxins for three hours, and to then remove fluids for two hours. Pilar set about starting dialysis. She had seen lots of cases of rhabdomyolysis. Typically there were three kinds of cases she saw—elderly people who had not moved in too long, so their muscles got crushed; athletes who pushed themselves too far with insufficient fluid, and crushing wounds from accidents. In addition to having his blood cleaned, Tom got a bottle of albumin. Like all transplant patients, his albumin level is low.

Deb Mattson, from the Infectious Diseases Service, stopped by. They really want to put Tom back on an antifungal because he is at high risk for getting some sort of fungal infection. I asked if they thought a fungal infection could have caused the cascade of events that occurred earlier this week. She didn’t think so. I agreed to think about putting him back on an amphotericin product.

During the afternoon, I had a conference with Drs. Stirewalt and Tse. I asked about the extreme discoloration of Tom’s fingers, toes, nose, ear tips, and top lip. They said it was caused by DIC—disseminated intervascular coagulation. Apparently tiny clots form and clog up the smaller veins and capillaries. Ordinarily, the treatment would be blood thinners, but that would be very dangerous for Tom—he could start hemorrhaging. In the meantime, they had decided to keep his hematocrit above 30 instead of 26 to try to get more oxygen to his heart.

The results of the nearly fatal CT scans showed nothing new (nearly fatal because of his heart rhythm problems). There is a bit of fluid around the kidneys and liver. His brain looked normal (that was a relief). They think he is still bleeding somewhere (not hemorrhaging, though).

His skin biopsy did show some GVHD, so they want to start him on another immunosuppressant drug. Although it isn’t clear whether Tom really reacted to cyclosporine, they are hesitant to put him back on it. They want to start FK506—tacrolimus, instead.

I asked about coverage for clostridium. They indicated that Tom was getting flagyl. The Infectious Diseases people had also advised adding Clindamycin, which would help with the toxins being spewed out by infectious agents.

We discussed the possible causes of the rhabdomyolysis, again. They still really don’t know what caused it. They may never know. I feel that the window to save Tom is rapidly closing.

They told me the results of Tom’s bone marrow—was that just a week ago? It seemed like eons of time. The graft has taken. 80-95% of the cells are the donors.

I asked about some notes in the labs: toxic granulation in the white cells. That was another indication of infection, Dr. Stirewalt told me. He does not have hemolytic uremic syndrome (called HUS, which destroys red blood cells).

Although Tom’s situation remains very bleak, there are a few hopeful notes. His myoglobin levels are down, suggesting the rhabdomyolysis is starting to resolve. His lungs are not any worse, and he does not have pneumonia. His blood pressure remains good, and his kidneys could recover in a few weeks, if Tom makes it otherwise. However, his LDH is still climbing, and his liver functions are worsening. Dr. Stirewalt said that if Tom’s liver function tests did not start a downturn in a day or so, Tom would not make it. The chances of him actually recovering are incredibly low at this point. From my prior reading and research, I myself put them at less than one percent, but greater than zero. Dr. Stirewalt agreed, and said, “You know as much as we do at this point.” That was not encouraging, since I don’t know much, and nothing seems to be helping.

The plan at this point is to start a very low dose of FK506, do an echo cardiogram to see just how much damage his heart has sustained, and possibly do a muscle biopsy. I am still unclear on what they thought they might find with a muscle biopsy.

I asked what was likely to happen that would cause Tom to die. They both spoke up at once—“a heart attack.” Alternatively, he could become septic (massive blood infection), his blood pressure could drop, or his lungs could start hemorrhaging again.

When I got back to Tom’s room, Pilar was just finishing off Tom’s marathon dialysis session. The three hour toxic dialysis had been stretched to four since his blood pressure and heart rate had continued to do well. While the fluids were being taken out, they dumped 2 units of blood, platelets, and some plasma into him, running it very fast, 400 ccs an hour (usually it goes in at 160 ccs an hour) because they were taking fluids out at the same time. At the time, I questioned the wisdom of doing this because I thought it would be hard on Tom’s system. Pilar assured me this was done often in the ICU ward. However, she had not been able to take off as much fluid as they had put in. He was a couple of liters positive. And extra fluid can get into his lungs, and cause a strain to his heart.

Just as she was finishing dressing the site of Tom’s dialysis line, Tom’s heart began to go into an arrythmia. I watched in horror. People assembled quickly. “He’s in afib,” Dr. Tse said. He wanted me to leave, but of course I refused. If Tom is going to die, I want to be there. I could never forgive myself if he died alone.

Pilar and Sherry moved quickly and efficiently. Within a very short time, the cardiology fellow on duty, Karen Stout, was at Tom’s bedside, directing the team (which by now had swelled to include a third doctor, and another four or five nurses). Another EKG was run. Dr. Stout said, “Where are the paddles?” Dr. Tse was asking for the crash cart.

Dr. Stout asked for several drugs. Someone had to go to the pharmacy to get them. (Hard to believe they wouldn’t keep them nearby on the floor.) In the meantime, she put a patch on Tom’s shoulder so he could be shocked if needed. Tom’s blood pressure faltered a bit. Dr. Stout wanted him to have more fluids. Pilar said, just dump them in via the dialysis line—it’s big. I stood out of the way, then when there was a spot, moved in closer to touch Tom and talk to him. In the meantime, the drugs arrived, amnioterone. Fewer people were in the room. I sang Tom’s favorite song, Brahm’s lullaby, in German, to him. My father sang it to my sisters and me when we were children, and I always sang it to Brian and Phil, our nephews, when they were younger. Tom liked me to sing it, and I often sang it to him when he had trouble sleeping. “Something’s working,” Dr. Stout pronounced as she came back in the room. Indeed, Tom’s heart had settled back into a nice sinus rhythm again. “Keep doing whatever you are doing,” she said.

Tom, unaware of all the commotion he had caused, continued to breathe. Linda Mesaric, Chris’s mother, called. Chris is doing fine, she told me. He had had a lung biopsy. The pulmonary doctors had taken out a golf ball sized infectious mass, plus some smaller nodules. Chris is at home, although still having problems with edema and poor kidney function. I gave her an update on Tom, bleak as it is.

We talked about how much more difficult transplants are than anyone thinks. The literature they give, and even all the discussions we have with the doctors, does not do justice to how complicated the process is. Once you have a transplant—everything about your life changes. You are always at risk for complications, even if things go smoothly. Linda recently talked to a man who sailed through his transplant, even worked through the whole thing (on his computer in the hospital and at home). Then on day 84, within half an hour, graft versus host disease had made him so ill that he had to be hospitalized.

We also discussed how important it is to have an advocate when you are ill. Linda is a nurse, and worked in the area of patient advocacy. Too many things fall between the cracks if you cannot advocate for yourself and no one else can do it either.

The rest of the evening was uneventful. Tom seemed peaceful. I wanted to finish this, but was too tired, so went to bed about 11:30.

February 1, 2002: Day 34. Friday. I woke up about 4:00 a.m. Tom’s breathing is more labored. He appears to be gasping for air. He is requiring more oxygen. The mottling is back on his legs and chest. He has a temperature of 102 degrees—suggesting an infection, but none have been cultured despite trying every day. The on-call doctor was sitting with Tom’s night nurse and the charge nurse just outside Tom’s room. I asked about Tom’s labs. Most of the labs she had drawn were already back. His BUN and creatinine had dropped after dialysis and had gone back up again. His liver functions were higher, as was his LDH. No sign of the downturn that Tom so desperately needs.

I sat on my chair bed and typed in what happened yesterday, thinking at the same time what to do if Tom’s heart stops. About 6:30 Tom’s night nurse said, “This would be a good time to take a shower if you want to. He’s stable, and you won’t have an opportunity later.

I wanted to take a shower, but I couldn’t bring myself to leave Tom for even a moment.

Now, just before 7 a.m., he is on 100% oxygen, and it appears that his oxygen saturation is going down. There is not much more they can do for Tom. The only question is, if his heart stops, should he be revived?

I asked the nurses and the doctor to leave so I could be alone with Tom. I talked to him, telling him how much I love him, but if he is tired, it is okay if he lets go. Perhaps he understood me—I held his eyes open and they did move, but I wasn’t sure there was any real contact.

In the midst of this, my sister Sandy called. Aunt Betty died at 4:40 am eastern time. Sandy, Brian, and Phil are going up to Massachusetts. Aunt Betty is being flown back and will be buried on Tuesday. Adrienne is staying at the house, taking care of the animals.

7:30 Tom’s temperature is 104.4 degrees.

At some point, Dr. Mahoney came in to examine Tom. She said his lungs sounded about the same, but his oxygen sats were probably lower because so much fluid had been dumped into him the night before. It was really hard to see what his oxygen saturation was, so she wanted to take a femoral arterial blood gas. I didn’t want her to, but she said, “Will you let me try just once?” I agreed. She did get some blood. Later the results came back: Ph 7.18, PC02 45, PO2 40, Bicarb was 16 (very low), SAT was 62. This was probably from a vein, not an artery.

They left me alone with Tom. I told him how much I loved him, how much I admired him, what was in my heart. I apologized for being impatient with him the last three days before he went on the ventilator. I will always feel terrible that I wasn’t more patient. I would ask him questions, and he couldn’t answer them. I exhorted him to exercise, goaded him to do so. He said he felt weak, and of course now I know that his muscles were being destroyed. At the time, I was focused only on the goal of keeping him up and moving.

7:55 I asked for a priest to come. I don’t know how far to go, or what to do. I am of a mind to just let him go if his heart stops, but I am not sure. Last night, Linda Mesaric said, “You will know what to do when the time comes. There is a difference between prolonging life and prolonging death.”

Tom has developed some heart block, maybe due to the amnioterone, a heart medicine they gave him last night to stop the arrythmia.

The dialysis machine arrived. My inclination was to let them go ahead with dialysis, because if there is one smidgen of chance that Tom will live, he will need to have dialysis. He may not be able to withstand the dialysis, and if that is the case, then I will know what to do. The dialysis nurse felt his blood pressure was too low to start dialysis-- 85/65, so she called the nephrology fellow. The nephrology fellow planned to come up to examine him in about 20 minutes. Up until now, Tom’s blood pressure has held up. Even that is going.

9:17-9:23 Tom’s heart was slowing down, using only the ventrical chambers, a nodal escape beat. They asked me what I wanted to do. I had thought this out. I told them to use drugs to revive him, but not to use CPR or electric shock. Jo, one of the ICU nurses gave him atropine, 1 mg., sodium bicarbonate, and epinephrine 1 mg, and they turned off the propofol, the sedative. Tom still didn’t wake up. I found out later that his blood sugar was 37. Dr. Stirewalt stood behind me, rubbing my shoulder, then Meri Gilman, the social worker touched my shoulder. I sang to Tom, Brahms lullaby in German, but my voice broke on the words. The song ends, “Morgen fruh wenn Gott will, Morgen fruh wenn Gott will”—morning comes if God wills.

After Tom was a bit more stable, everyone left except Sherri, his nurse. She watched the monitor while I continued talking to Tom. I sang Brahms lullaby again, told him how much I loved him, how terrific he was, how brave and strong he had been, and that it was okay to let go. I desperately wanted Tom to hear and understand how much I loved and admired him. At one point, I thought perhaps Tom’s right eye might have followed me, but I will never be sure.

9:43 Sherri said, “I think it just happened now.” Tom’s heart had stopped, according to the monitor. I looked up, there were still small rhythms. The line was not flat. His chest was still moving. Sherri listened, but couldn’t hear any heartbeats. She said the rhythms were artifacts because his chest was still moving. Dr. Stirewalt came in and listened; he couldn’t hear a heartbeat either. Sherri asked whether to turn off the ventilator. I said “No.” I didn’t want to take a chance just in case he wasn’t dead.yet. After a couple minutes, I said, with profound agony, “Go ahead and turn off the ventilator.” His chest stopped moving immediately. My heart broke. Tom had fought so hard, but he died anyway. I stayed with Tom. Most annoyingly, people started coming in to take equipment out, and they were not unobtrusive about it. I just wanted to hold on to him a bit longer, with some privacy, but that was not to be.

I told them I did not what Tom autopsied because of the amount of cutting they do. I did not want Tom’s brain and body parts removed, and I didn’t want him mutilated in any way. Dr. Stirewalt was nice about it. Later Pam, a physician’s assistant {PA} came in and mentioned that they could do a limited autopsy with fewer cuts. I could live with that.. I wanted to know what killed Tom, I thought that Tom would want to know, and I felt the doctors deserved to know, also, if it was possible to find anything.

Eventually, Meri, the social worker came in and said I could stay as long as I wanted. I put Tom’s beautiful quilt over him. I sat with him while Sherri took out the ventilator, a peripheral line on his left arm, the Quinton catheter for dialysis. She did not want to take out his Hickman catheter (in his left shoulder) because she believed he would bleed too much.

Dr. Stirewalt came in and said “I’ve never seen anyone fight harder than Tom. And we put more effort into Tom than any other patient.” I know that he called many other doctors to try and figure out what had happened to Tom.

Sherri said she thought he would die during the day, but not that fast. She said sometimes people linger on for weeks. She gave Tom a sponge bath. I asked whether they sent people to the morgue naked. She replied that they usually do. I wanted Tom to at least have some underwear on. Eventually we put it on him, but it was pretty difficult.

People kept coming in to pay their respects to Tom and to try to comfort me. Hilde, Tom’s dietician came in. She had told me a day or two before that we had tugged at her heartstrings. She hugged me, and said how well Tom had done, how hard he had worked. She also said that I asked great questions. (She spent lots of time explaining aspects of Tom’s nutrition to me.) We talked often. She has a PhD in economics from U.C. Berkeley, but switched to nutrition because she wanted to work with people, but still have some analysis. Hilde urged me to stay in touch.

Sue Billingsley, another dietician whom we met when she was on duty during a weekend, stopped by. Just the day before she had brought me some peanut butter and crackers so I would have something to eat if they didn’t send trays up. She too, connected with us. She goes out of her way for patients, as she did for Tom—bringing him half and half and baby food from the store when he was trying to stave off intravenous feeding. She loves dogs, and one of her dogs, Baily, had to be put to sleep couple of weeks ago. Several hugs from her. “Keep in touch,” she said. I have her e-mail address.

Andrea, the physical therapist came in. She too praised Tom’s efforts, and told me that they had kept him up and moving longer.

In the early afternoon, I walked over to the bookstore to return two very expensive books on bone marrow transplants. Sherri agreed to stay with Tom and answer the phone (I was waiting for Tom’s brother Mike to call). I hated to leave him, even for a minute. On the way out, I saw Susan Shirley. She wanted to know how Tom was doing. I told her. She just hugged me and said how sorry she was. We talked for a bit. Sue and I figured we would be at the hospital together for the long haul. Steve, her husband, has had a very rough time of it. Like Tom, he came in somewhat devastated by prior chemotherapy. When I went home over the last few weeks, I usually rode with Susan. He offered to take me (and all the stuff Tom and I had accumulated) back to the Pete Gross House after dinner. I gratefully accepted. The other day, Susan referred to me as her best friend here, and that is true—we have become very close through the past month or so.

When I got back, Chuck and Glennis were waiting outside his room. They had been in to see Tom. Chuck had been in the room next to Tom, and often walked with us. Chuck looked devastated. I wanted to hug him, but I didn’t dare for fear I would give him an infection. So I gave him a virtual hug from two feet away (years ago, Phil, my nephew didn’t always want an actual hug, so we developed the concept of the virtual hug—done from a distance).

Even six hours after he died, Tom was still very hot. I put a thermometer under his back and it went to 101.8.

Andi, a nurse whom Tom had never had, came in to give me a hug and tell me how sorry she was. We had seen her often when Tom was doing laps. She told me tht she had once had a patient who was sedated for a long time. After the patient was no longer sedated, she asked Andi whether Andi had noticed her blinking at her. Andi saw the patients eyes move, but thought she was just blinking. The patient went on to tell Andi that she, the patient, heard what was going on, but couldn’t respond because it was just too much effort, that blinking her eye took all the strength she had. Andi was sure that Tom had heard what I said and understood me even though he could not show it. I hope so, but I will never know.

Eventually they wanted to take Tom down to the morgue. I went along. I wanted to meet the pathologist and find out what he planned. When it came time to take Tom down, the porter never showed up, so Sherri, his nurse, and Lalou, an aide from Nepal, took him down themselves. Sherri waited with me until about 7:45 when she was relieved by one of the physician’s assistants, who waited with me until Dr. Dave Myerson arrived. It turned out that he was very anxious to work on Tom. Dr. Myerson is a virologist. He had some ideas about what might have happened to Tom. One theory, and he emphasized that this was just a theory, was a resurgence of chicken pox, which Tom had had as a child. Another was an unusual virus which had come up positive on Thursday. He explained that he would make a few cuts to biopsy Tom’s various organs, brain, and muscles. While I still had no answers, I felt better about leaving, but I already miss Tom terribly.

February 2, 2002: Packing. Dinner with Phil and JoAnn Valvo. Jo has come down with CMV. Fortunately she is much further along than Pacita was, and her ANC is much higher. Phil made her walk back from the SCCA, a long walk when you feel weak from steroids. Jo has gained 40 pounds of fluid weight and feels miserable. They have started to taper down the steroids she is taking for GVHD.

February 3, 2002: I still don’t have Tom’s funeral arrangements finalized. I will return to BWI on Wednesday. I am hoping Tom will be able to come on the same plane, but will not know until tomorrow. Nash and Slaw funeral home in King George, VA will be handling the arrangements.

I talked to Dr. Stirewalt today. They still don’t have any real results from the autopsy. The two theories are chicken pox or HHSV 6, a herpes type virus that can cause sepsis in babies. HHSV 6 is a relatively new virus. There have only been three reports of patients with it. Tom would be number four. The other three were not on the acyclovir (an antiviral) drug prophylaxis that Tom was on. Tom missed at least two acyclovir doses in a row on January 18^th. Both Dr. Stirewalt and Dr. Myerson didn’t believe that would be sufficient to allow the infection to get started.

It is not clear that acyclovir, or the drug Tom was switched to just after January 18^th, oral gangcyclovir, works to prevent HHSV 6.

Packing to go home.

Missing Tom terribly.

Saw Tanya and Scott. Tanya looks good. She, too, laments losing her strength. She feels guilty that she was able to leave the hospital so much earlier than everyone else. She is younger—only 27, and that makes a huge difference. She remembered the first day we met, when Tom started asking her questions, drawing her out. She had ovarian cancer. Two years after beating ovarian cancer, she came down with Acute Myelogenous Leukemia (AML) for which she had two induction rounds of Ara-C to get into remission. She spent 5 weeks in the hospital in Cincinnati before coming to the Hutch.

Received from Caroline on Monday morning 4 February 2002

……Tom died on Friday morning--after a heroic
fight. No one knows why, possibly a viral infection such as chicken pox, or
a new herpes 6 virus. Whatever it was it was devastating and overwhelming.
I will be coming home on Wednesday, I am packing now. I already miss
Tom--we had been together since 1975. …..
Funeral arrangements are not set yet.

Received from Caroline on 31 January 2002

I finally have a name for part of Tom’s condition: rhabdomyolysis—necrosis (death) of skeletal muscle, typically associated with a very high myoglobin (a respiratory tissue of muscle) level, which is excreted in urine. In Tom’s case, it clogged his kidneys, which is the main reason that today he had to go on dialysis.

Apparently his cyanotic toes and fingers and skin mottling are somehow connected with the rhabdomyolysis.

Right after dialysis, Tom was taken down to have full body CT scans—which meant, head, chest, and abdomen. The trip was difficult because Tom had to go in his bed, with two rather full IV poles, a portable ventilator, two tanks of oxygen, and a heart and oxygen level monitor, plus 2 nurses, a respiratory tech, an aide, and myself. Tom had his heart attack Monday morning before noon—possibly while he was down having a chest CT scan. On Monday, I was not allowed to be nearby, but today I insisted loudly and was able to stay in the room with the others, although not with Tom. By the time we got back, about 7 p.m., Tom was having arrythmias—quite irregular heartbeats. It took four hours for his heart to calm down. Someone threw out the tracings taken down on the second floor, but they sent off Troponin levels, and they were elevated beyond what they were on Monday. I am not clear whether this means he had another heart attack. Even the least amount of stress is too much for Tom at this point.

2. Tom has some graft versus host disease. The biopsies they took yesterday are inconclusive.

3. Tom had a massive drug reaction (they doubt this).

4. One of my theories—Tom had/has some sort of bizarre auto-immune reaction (they doubt this).

One of the nurses here believes that people choose to die. One of the doctors says, “No one chooses to die—processes get out of control.” I don’t think Tom has chosen to die, even though he is tired. He is still hanging on. At the end of the day here, Tom is on 60% oxygen, his heart seems stable again, and his blood pressure is still up. He is laying peacefully on his right side (he “desatted” badly on his left the other day, so he is no longer moved that way. I hope that tomorrow is better.

ANC=3,230 !!! I hope they go to work on Tom’s infection—if he has one.

Received from Caroline on 30 January 2002

Tom Tugman’s Story—Bone Marrow Transplant

Message as of January 29, 2002: Currently, Tom Tugman is fighting for his life at the University of Washington Hospital in Seattle, WA. Tom was diagnosed with chronic myelogenous leukemia in July, 1997, and has been fighting valiantly since then. He initially took interferon for two years. After Tom had pneumonia in March, 2000.

By July, 2000, Tom’s leukemia had moved into an accelerated stage. Tom’s spleen more than doubled in size in about a month. Tom’s hematocrit fell and he needed blood transfusions at least once a week.

In August, 2000, he began taking STI 571, an experimental drug. STI-571 eventually worked for Tom—he no longer had to have weekly blood transfusions after January, 2001. By February, 2001, Tom only had 20% Philadelphia positive cells; by May, he had none. He felt much better, and began to have more energy.

Shortly after he retired in June, 2001 Tom started to feel more tired. By the end of July, he needed weekly transfusions again. He went into blast crisis, the end stage of the disease, in August, 2001. At that time, he was given the choice to go home and die within 8-12 weeks or go to Johns Hopkins and have intensive chemotherapy with a 5-10% chance of going into remission. Then, if he went into remission, he would need to have a bone marrow transplant to cure his disease. Although the odds were against Tom, he adopted the Virginia Lottery’s saying, “You gotta to play to win.”

The chemotherapy at Johns Hopkins to put him in remission so he could have a bone marrow transplant, which we hope will save his life. He almost died during the chemotherapy at Johns Hopkins, but he beat the odds.

This is actually part II of Tom’s Story. If anyone is interested, I will send the first half along to Bob Lay. This part of the story is somewhat incomplete and may have grammatical or spelling errors. My apologies. It became clear that I could not take the time to finish it, so here it is, a work in progress.

Tom and I have many people to thank: the people we work with, who were kind, generous and helpful to all of us during this crisis—there are too many to list here, but you have all been there when we needed you; Tom’s doctors and nurses and other medical personnel, most of whom were healers in the true sense of the word, our families, and many others. Tom also benefited from about 60 hours of donated leave from people at NSWC. People at both NSWC and Rappahannock Community College generously gave money to Tom and me, which we will use to help pay for the donor matching costs, which are not covered by GEHA, our health insurer. We are touched and humbled by everyone’s generosity.

Thanks also to Bob Lay, who generously has put Tom’s Story on his web page.

Thanks especially to Cindy Ewoldt, who thought she was going to work 12 hours a week for RCC in King George last fall, but had to do both her job and mine with one night’s experience. Without her willingness to pitch in, I would not have been able to keep my attention on Tom.

If you are comfortable with prayer, please pray for Tom and the other patients on this unit. There is evidence in blind studies that prayer has an effect on medical outcome even if the patients are unaware of the prayer.

I will try to add to this daily if at all possible. Thanks to everyone.

///Caroline M. Mack

How to reach us:

Tom Tugman

Caroline M. Mack

Pete Gross House

Apartment 308

525 Minor Avenue North

Seattle, WA 98109

(206) 262-9023

(there is an answering machine, however, I spend most time at the hospital)

e-mail: tugmanto@aol.com

cmack@rcc.vccs.edu

August 3, 2001: Friday. Tom had his regular weekly appointment at Dr. Muir’s office. His hematocrit was so low that he needed a transfusion. He received two units at Mary Washington, on the third floor, just like the old days (last transfusion was in January).

August 10, 2001: Friday. Tom had his three-month appointment with Dr. D at Johns Hopkins. Some of Tom’s tests were elevated, and Dr. D insisted that Tom have a bone marrow biopsy right away.

Blast Crisis

August 17^,2001: Friday. While I attended Rappahannock Community College’s Fall Convocation with Cindy Ewoldt, the new site assistant for RCC King George, Tom went to Dr. Muir’s office for his routine Friday blood test. Surprisingly, the results of his latest bone marrow biopsy were back after only a couple days. Dr. Maurer, Dr. Muir’s associate, told Tom that he was in blast crisis, the end stage of chronic myelogenous leukemia. He gave Tom two choices: “You can go home and do nothing, and you will die in 8-12 weeks, or you can go to Johns Hopkins University and have chemotherapy to try to go into remission. If you go into remission, you will need to have a bone marrow transplant immediately.”

Tom, stunned by this information, left the doctor’s office and continued with the chores he had planned for the afternoon. He told me the horrible news as soon as I arrived home. We called to discuss the chemotherapy option with Dr. D at Johns Hopkins.

“The Big D” as he was called by some of the nurses, attempted to lay out the scenario. “You will need to be in the hospital at least 30 days, perhaps as many as 45 days,” he told us. “We will give you three kinds of chemotherapy: A course of Ara-C and daunorubicin for three days, then four days off, then three days of etoposide. The idea is to destroy your bone marrow with the hope that destroying it will kill off all the leukemic cells.” We asked about the side effects, and he told us that Tom would lose his hair, but also that Tom would be severely neutropenic (lack of white blood cells). His immune system would not be functioning until his neutrophils started to come back, which could take three weeks or more. Tom would be at great risk for infection during this time. They would give him antibiotic, antifungal, and antiviral medications to keep him from getting an infection. In addition, Tom’s platelets would be destroyed. Platelets are needed to make blood clot, so Tom could also bleed.

Both of us were still contemplating the alternatives. Neither was very pretty. We asked Dr. D what the chances were that Tom would go into remission. “Five to ten percent,” he told us.

“What are the chances he will live through the chemotherapy?” I asked.

“Eighty percent,” he answered. “But if he goes into remission, he will have to have a bone marrow transplant as soon as possible. Remission for blast crisis doesn’t last long. Because he is adopted and doesn’t have an HLA matched sibling, he will need a matched unrelated donor. It could take six months to find a match, and he may not be able to stay in remission that long.” He left us with the impression that if Tom stayed in remission (technically called a “second chronic stage”), he could have the transplant done at Johns Hopkins.

“What are the chances that Tom will be cured by a transplant?” I asked.

“About five percent,” Dr. D told us. We discussed what this meant, and Dr. D concluded that Tom’s chances of making it through both chemo and transplant were about 2 ½ %.

Agonized, we discussed both alternatives all day Saturday. We had to call Dr. Diehl with a decision on Sunday morning so he could arrange a bed for Tom if he decided to go with the chemotherapy.

Tom borrowed a phrase from the Virginia lottery, one which he would have cause to use several more times: “You gotta play to win.” The decision was made—Tom would check into Johns Hopkins on Tuesday, August 21^st to begin chemotherapy.

August 19^th. Sunday. We spent the day getting everything in order so Tom could go to the hospital on Tuesday. Some things were things we had put off for a long time. Tom’s mom had asked for a professional photo of Tom and of Tom and me the year before for Christmas. We both knew that there might never be another opportunity to get one. Tom went early to get a hair cut on Sunday morning Unique Chic (how fortunate they have such long hours!), and then we shopped for necessities, and got to Sears just before they closed at 6 p.m. The pictures turned out all right, but Tom looks very tired in them.

August 21, 2001: We left early for Johns Hopkins, with clothes, videotapes, DVDs, food, and a laptop computer. (Tom hoped to stay in touch with everyone by e-mail). As we drove away, Tom and I could not help but wonder if this was the last time Tom would ever see home, along with our beloved five dogs and five cats. Neither of us voiced our fear to the other, however.

We made the two and a half hour drive to Baltimore, then Tom checked in at the Weinberg Cancer Pavilion, and was put in room 5C04, a large room with a view of a brick wall and a parking lot. Melanie Wick, his primary nurse, explained some of the rules to us. We asked for daily printouts of Tom’s labs (laboratory values) and to see his chart daily. They refused to provide the labs—too much trouble, although they did put a chart on the wall for white blood count, hematocrit, platelets, and ANC (absolute neutrophil count). As far as the chart was concerned, we could look at that only in the presence of a physician.

A, one of the nurses shaved Tom’s arm with a regular razor, even though Tom’s platelets needed to be above 50,000 to use the razor. She just scraped it across his skin. (The hair has only recently grown back).

Melanie told us about the drugs Tom would receive: three days of Ara-C (cytarabine) and daunorubicin, along with continuous Zofran to decrease nausea. After four days rest, he would receive three days of etoposide (VP-16). Tom’s protocol was called AcDVP16. Melanie also said that after the first round of chemotherapy, called induction, Tom would receive more consolidation chemotherapy. This turned out to be incorrect for Tom’s diagnosis of CML.

It was the nurse’s duty to do “patient teaching,” so Melanie was charged with telling us that Ara-C’s side effects included: mucositis, nausea, vomiting, diarrhea, loss of hair, and fluid retention in the lungs (this would almost kill Tom). Daunorubicin would turn Tom’s urine red-orange, and etoposide could cause shortness of breath, and anaphylactic shock or sudden death.

Vital signs would be taken every four hours: temperature, blood pressure, listening to lungs, etc. Intake and output would be strictly counted. That meant that Tom was to urinate in a urinal, and use a plastic device called a hat to catch all bowel movements. Tom’s weight would be checked twice a day at 8 a.m. and 8 p.m.

An attending physician, who is in charge of the case, fellows, who are getting three years of training beyond residency, residents, interns, nurses, pharmacists, social workers, dieticians, and/or others would be at “rounds” every morning between 9 and 10 a.m. Rounds were conducted for teaching purposes. The attending physician and also the residents and interns rotate off the service after about three weeks.

Visiting hours, Melanie told us, were 10 a.m. to 10 p.m.

Dr. Jacobsen, a senior resident, took Tom’s history and patiently answered many of our questions. The chemotherapy was given to kill the bone marrow, with the hope that when it came back, the Philadelphia + chromosomes and blasts would be gone. Tom would have no white cells and absolute neutrophils for up to 28 days as his bone marrow came back, a condition called neutropenia. Neutropenic patients were at danger of getting infections, and had nothing with which to fight infections. They would receive antibiotics prophylactically. .

August 22, 2001: Tom began chemotherapy with Ara-C and daunorubicin. Regrettably, I was not there—August 22^nd was the first day of the fall term at RCC. But my sister Sandy stayed with Tom as the chemo was begun. Before they could begin the chemo, Tom needed some sort of central line. He was supposed to get a Hickman catheter, which could last for months. However, their operating room was too busy—Tom would have to wait a week to get a Hickman. So they put a central line in instead—lasts about four weeks without getting infected. We were pretty annoyed. Tom could have had a Hickman put in elsewhere before he got to Hopkins.

Tom did very well, with almost no nausea. Ara-C was applied in a continuous infusion for 72 hours, but daunorubicin was given in an IV push once a day for three days.

August 23, 2001: Back to Hopkins for Tom’s second day of chemo. Cindy Ewoldt took care of the RCC King George Site, a real baptism of fire since it was only the second day of school. If it weren’t for Cindy, I don’t know what I would have done. I hated not being at the site the second night of classes, but I really needed to be with Tom.

August 27, 2001: Monday. Tom is still not showing the usual effects from the earlier chemo. Dr. D arrived and was shocked to find Tom eating a pizza. “That’s not a sight I see very often,” he said to Tom. Actually, the pizza was Tom’s second dinner.

Tom still felt and looked good.

August 29, 2001: Tuesday. Tom began etoposide chemotherapy. I missed a Board of Zoning Appeals Meeting in King George. There was no way to get back in time for it. The two and a half hour drive is punishing. Until Phil Pendleton, my nephew, could come and stay, I drove back and forth every day to feed the dogs and cats.

August 30, 2001: Wednesday. Tom received his second dose of VP16 (etoposide).

August 31, 2001: Thursday. Tom finished etoposide chemo today. He is feeling nauseous and said, “My stomach does not remember which end is in or out.”

September 1, 2001: Saturday. I stayed at the Rockwell House tonight. It was such a relief not to have to drive home. Phil, my 18-year-old nephew, is staying at the house with Adrienne, his girlfriend, to take care of the dogs and cats. Rockwell House is a residence built by the husband of a woman who died of cancer. He was a builder and wanted to do something in her memory. Rockwell House is just a block away from the hospital. The room has a bathroom, bed, comfortable chair, TV, VCR, tiny refrigerator and microwave. There is a big communal kitchen for anyone who wants to cook, also a nice living room and meeting rooms. There is a laundry room with two washers and dryers, but they can only be used between 12 and 8 pm, times that are during visiting hours. The staff is very helpful. They have books and videos available also. I have no time to watch them, but many people stay here while they are getting treatment. There is a grand piano in the living room.

I left the truck parked in the Weinberg Parking Garage and walked over with one of the security guards.

September 3, 2001. Monday, Labor Day. Tom began suffering from chemo-induced mucositis—an inflammation of his mouth and entire digestive tract, which makes it very difficult to eat or drink. Mucositis is like having a bad case of heart burn, strep throat and burning your mouth badly with hot pizza at the same time—except that it starts at the lips and usually goes all the way down to through the intestinal tract. Swallowing is difficult or impossible, and everything that goes down burns. Sometimes it comes back up, which burns even more. They eventually put Tom on a PCA, a pump which allows him to give himself morphine when he wants it. He gets a certain amount every hour automatically; then he can push the button to the pump every six minutes if he chooses.

Tom rarely pushes the button.

September 6, 2001: Tom’s mucositis is abating. He is able to drink liquids again.

September 7, 2001. Friday. Tom is suffering from a serious fluid overload. His nurse recognized the problem before the doctors noticed. She told Tom to restrict what he drank to 1500 cc (1 ½ liters). Tom had already had two 24-ounce coffees (about 720 ccs), so he couldn’t drink much the rest of the day. On top of that, he was getting huge amounts of fluid because of his drugs, including amphotericin-B, which requires a half-liter of fluid before and another half liter afterward to prevent kidney damage. He is also getting TPN (total intravenous nutrition) and blood products. It all adds up to a huge amount of fluid.

September 8, 2001: Saturday. Got a call at about 5:45 a.m. from Dr. L, the intern. Tom was having trouble breathing, and they might have to put in an arterial line or intubate him. When he called, I was in the middle of taking my shower. I jumped back in, finished, and walked the block over to the hospital. Tom was still having trouble breathing.

Later he told me that he had gotten up to go to the bathroom about 5 a.m. He suddenly couldn’t catch his breath, so he went to his bed and pushed the nurse’s button. No one came, and his breathing was getting worse. So he went in the bathroom, pulled the emergency line there, and several people came running. Thank God he had the presence of mind to do that, despite how sick he was.

They believe Tom has pneumonia. They are trying to get the fluid out of his lungs. Tom is restricted to 1500 cc’s (1.5 liters of fluid) a day, and they are “gently diuresing” him by giving him lasix.

Although we have been counting the fluids Tom consumed all along, we began counting fluids obsessively.

September 9, 2001: Sunday. Tom is still having a lot of trouble breathing. We write down everything he drinks as well as his output. Drs. Becker and Khan, the weekend pulmonary fellow and resident came by to see Tom. They noted that he had petichiae (little raised red dots) all over his legs. Tom is still using a morphine pump for mucositis. Tom is somewhat confused and out of it. I am extremely worried because he has stereotypic movements—his arms, especially—move somewhat randomly. He has what I term a “deer in the headlights” look—startled and confused. It is hard to watch Tom suffer this way.

Tom is nauseous and has little appetite. They took off the morphine PCI pump. In the meantime, Tom is seriously sleep deprived.

I had a discussion with Dr. G this afternoon. Tom was asleep in the room. We spoke in the conference room. According to Dr. G, Tom’s right lung is worse. He said, that Tom “could go south at any time. He will not be out of the woods until his white cells come back.”

“If his breathing gets worse, he will need to go on a ventilator (mechanical breathing).”

He also said, “Only 20% of people who go on a ventilator ever come off. A lot depends on whether he continues to urinate and get fluids off. Usually what happens is that [on a ventilator], their blood pressure goes down and we (medically) can’t support it.”

Dr. G did say that they would put Tom on GMCSF (granulocyte macrophage colony stimulating factor) which helps speed up growth of the white blood cells.

About 5:30, Tom turned bright red with a flush that covers his chest, neck, shoulders, face and head. He also has the shakes; similar to the ones he had while on morphine. Tom says, “I feel like I had my head mushed off by a car tire.”

I sat in the room, watching Tom suffer, and wrote in my notes, “This is awful—to see Tom suffering because his body is wracked with fever and too much fluid—from poisons that were purposely administered. It is hard to believe that this is the state of medicine.

“His feet are twitching although he appears to be asleep.

“I scared him with ventilator talk after talking with Dr. G. Probably should not have told him. I would want to know, but maybe he doesn’t. I can’t discuss this with anyone—I am always here with him and it upsets him.

“I asked him, did he want to go on a ventilator (if absolutely necessary)—he said, “I don’t want to talk about this with you.”

“I can’t even e-mail anyone. AOL is so loud it would wake him up. Guess I could take it back with me (to Rockwell House), but don’t plan to go back early tonight if at all.

“G says Tom is in critical condition. Every time I leave, he has the opportunity to get up and his heart rate goes sky high. [There is] No one else to sit with him.

“I think Friday pushed him over the edge. Way too many fluids from them and by mouth. They were still encouraging him to eat if he could, and drink, too. They pushed so much fluid into him that he literally felt like he was drowning—couldn’t catch his breath.

What the h--- were they thinking—that his poor system could take all the fluids they could push? One liter just to go with the amphotericin b (a nasty antifungal that they call “shake and bake” because it alternatively causes terrible shivering and overheating)? Too many untrained docs. G, the attending doctor, should have known better. They should have been watching all of his input.”

Later that night, I wrote, “Tom is just exhausted. He needs 12-14 hours of sleep a night—is only getting a few hours a day. This just sucks. And for what? A tiny chance. Dr. D said only a 5% chance for a cure, even if he goes into remission.

I stayed over, watching Tom all night. The night was hellish for Tom. He could not get comfortable.

They could give Tom demoral for rigors (terrible shakes), but Pam, the nurse doesn’t want to. The doctor is a new intern who listened to her.

September 10, 2001. Monday. About 4:00 a.m. As the night wore on, I was more desperate about Tom’s condition. I questioned (to myself) whether he had made the right decision. I wrote, “I do have to wonder whether he shouldn’t just have stayed home. Eight to twelve peaceful loving weeks vs. agony that may kill him. If it doesn’t kill him, it has a 90% chance of not helping him.”

I asked that they reconsider the decision not to give him Demerol. Tom has such bad rigors that his heart rate is very high. A nurse I did not know suggested that I did not need to be there; they could have a sitter to make sure Tom didn’t get up. Rules, blah, blah, blah. I shouldn’t be here, she continued. Tom isn’t critical as far as she is concerned (though G, the doctor, said he was).

I wrote, “If Tom is dying, I’m going to be here. Until it is obvious he is not they will have to live with this. I hope they don’t get ugly about it. They claim this is for my own good. My good is what is best for Tom.”

Tom’s heart rate was in the 160’s. Finally at 7:15 a.m., I moved him back to his bed. He could barely stand, was having trouble breathing. I asked Melanie, his nurse, to give him some oxygen.

In the morning, he was still flushed deep red from the waist up, and his lungs were crackly and wheezy. He was much weaker than the day before.

Dr. Polotsky, a pulmonary fellow, came by to look at Tom. During rounds, Dr. G said they would get a sitter for tonight (the head nurse was upset that I stayed over).

As if it were not enough that Tom was so sick, A. R., the nurse manager, actually threatened me. I was told not to stay after 10 p.m. or to arrive before 11:00 a.m. By her definition, Tom was not critical, even though Dr. G. had said he was. “Our definition is different,” she asserted. Besides, “you are lucky,” she continued. “In other parts of the hospital, visitor’s hours are from noon to eight p.m.” She went on and on, hammering at me about following the rules. I explained to her that since Tom was extremely ill, and possibly dying, that we wanted to spend as much time as possible together.

She also said during our “meeting,” that she was “worried that you want to keep your husband alive.” What on earth did she mean? Of course I want to keep him alive!

She was implacable—he was not critical, and I was not allowed to be there. We ended without any kind of compromise. Bottom line—I was not to arrive before 11 a.m., and I was not to be there for rounds, even though Dr. G. did not object. Tom is too confused to tell me what they have to say.

For instance, this morning, he thought that he was off fluid restriction. He was very thirsty, so he drank water freely. By the time I got back from talking with the head nurse, he had no idea how much he had drunk. He also says that Dr. G mentioned dialysis.

Tom’s kidneys are sufficiently damaged that they have finally decided to switch from regular amphotericin-b to ablecet, a version in lipids which is not as hard on the kidneys. They said that he is better today, but could get worse at any time.

September 11, 2001: Although Tom is very sick; I am still not allowed to go to the hospital until 11 a.m. As I got ready, I turned on the television. Bryant Gumbel was talking as they replayed footage of a plane going into one of the World Trade Center towers. Within moments, another plane had flown into the other tower. I was in shock and watched in horrified fascination as a short time later another plane flew into the Pentagon. Sandy called me and told me that someone at work had a child on the plane that had flown into the Pentagon.

I stayed in front of the television as long as possible, then headed over to Tom’s room about 5 minutes before 11. Tom was in deep distress, but I told him about what had happened. He immediately thought about what would be going on at NSWC Naval Base, and felt bad that he wasn’t there to help. We were both in shock, but Tom was getting sicker and sicker. We didn’t even have time to watch events unfold on the TV.

Baltimore’s blood bank sent a huge amount of blood and platelets to New York. Only patients who were actively bleeding got platelets or blood tonight.

Like many others, I wanted to donate blood, but we are being told that they have plenty of blood right now.

Tom is still having a terrible time breathing, and he is deep red from about two inches above his waist up to the top of his head. Only his underarms and the back of his head are untouched.

September 12, 2001: Wednesday. When I arrived this morning, Tom was much sicker than when I left last night. Apparently he had a restless night. They gave him Ativan, lasix, and diuril. Because of the Ativan, he was barely able to talk. (It makes me really angry when they overmedicate him.) He was very uncomfortable, sitting up in a chair. He was also itchy on his shoulders and back. He is even more tired than yesterday.

Slightly after noon, Drs. Pierce and Polotsky, the pulmonologists arrived. Although the nurses and Dr. G felt Tom’s lungs sounded better, Dr. Pierce said they were worse yesterday than the day before, and they are no better than yesterday. Dr. Pierce is very gentle as he examines Tom.

About 1:00, Tom fell asleep. It appears that he sleeps better when I am here. There was an inservice for nurses. Evalyn was kind enough to bring me some sandwiches. She is an excellent, caring nurse, and she is willing to give me the information I need.

I talked with my sister Sandy and my nephew, Brian. Brian wanted to know when Tom would get out of here. I had to tell him I was not sure he would. Tom looks so haunted—so sick—I think of the physician’s credo, “First, do no harm.” Here the idea is given them enough chemo to see whether you can kill them, then see if you can bring them back from death.

I try to be positive for Tom. However I have extreme doubt that he will live through this. Each day, something new and worse occurs. I go to the Rockwell House at night, and come back the next day to find that all hell has broken loose. I feel selfish complaining because Tom really suffers, and I do not.

They tried several times to draw blood gases—difficult and painful because it comes from an artery, not a vein, then LOST the sample. Poor Tom—they had to draw it again. I can’t believe they put him through this.

Late in the afternoon, Tom was sitting in the chair. Dr. Lee, the intern, a nervous man with no clue as to “bedside manner” came in and barked, “Get on the bed.” Tom looked alarmed and wanted to know what was happening, but his words weren’t clear. Dr. L ignored him, then finally mumbled something about an arterial line. Tom wanted to sign a medical power of attorney that we had found in the patient handbook. (The one we had signed at our lawyer’s office left it up to two doctors to decide whether Tom was incapable of making medical decisions—by this point, we did not trust the doctors we had come in contact with at Johns Hopkins (except for Dr. Miller, but she was not the attending at that time). a Dr. L did not intend to give Tom any local anesthetic. Impatiently, Dr. Lee refused to let Tom sign it.

Nervously, Dr. L began. I asked about local anesthetic. Dr. L said he preferred not to use it. After he screwed up his first attempt, causing Tom a lot of pain, I insisted that he use a local anesthetic. His voice rising high, he turned to the nurse and asked what to use. One of them said, as a question, “Lidocaine?” He told her to get it. Then he started in again on Tom’s right arm. About that time, the head nurse came and got me.

Now that Tom has an arterial line, he is considered sick enough that I can visit his room at any time of day or night. He can barely breathe. He is trying so hard.

After Tom’s arterial line was in, he was finally able to sign the medical power of attorney, but he could barely write. It was very fortunate that Tom executed the document. I actually had to use it later on.

To my horror, Tom has a sitter—a person who is sitting in his room to make sure that he will not get out of bed. I am so horrified. This could be our last night, or one of our last nights together, and we cannot even be alone. I feel utter despair. There is no privacy. A stranger sits in the room with us at all times except when she takes a break. The person they chose is not sensitive to our feelings, and she wants to have the light on to read the book she has brought along. Tom needs sleep desperately and cannot sleep with the light on.

Tom is at the mercy of the sitter unless I am there. He does not want me to leave. His breathing is very labored. Dr. Polotsky tried to get Tom to use a CPAP machine so he might not have to be intubated (put on a ventilator), but Tom couldn’t stand it.

September 13, 2001. Thursday. About 1 a.m., Kim, Tom’s nurse, told me that she had seen many people in Tom’s condition, and she was certain that he would have to go on a ventilator later in the day, and that she did not expect him to survive. She said that we needed to have a discussion about what Tom wanted to do.

Kim explained the options:

1) Ventilator: extremely unlikely he would get off it—could live two weeks or so, other organs would deteriorate; he would be sedated unless he could tolerate the ventilator; considering that they can’t keep him in bed, she feels it is unlikely that he could tolerate the ventilator tube without sedation. He could conceivably wake up, but that is not certain.

2) If he foregoes the ventilator, he would slowly die of hypoxia—too much CO2, but it is not too painful. He could be kept comfortable.

Kim sent the sitter off on a break so we could have a few minutes to talk. About 1:30 am, we talked about what Tom wanted.

Tom knew that 80% of the people who go on a ventilator at Johns Hopkins do not come off—they die. We had completed medical powers of attorney and living wills previously, which essentially said, we did not want extraordinary measures taken. At that time, I told Tom not to use mine unless he absolutely had to. I was very against the idea. Turns out Tom is, too. I asked Tom if he wanted to go on the ventilator if there was no other option. He said, “I want to live. Make them do whatever they can to keep me alive.” Luckily, we had not given any living wills to the hospital. I agreed to do what Tom wanted. We talked about how much we loved each other, and what a great life we had had together. Tom was gasping for breath, his stomach heaving with the effort to help his stiff lungs take in air. He has a mask to give the maximum amount of air, but it just isn’t enough.

Tom wanted to know how much longer this would take—I think he meant until he started getting better, which they have repeatedly said would happen when his white cells come back, about day 28. I told him we were on Day 22 (yesterday), now Day 23 so maybe six more days. I pray that is true.

Tom spent a miserable night. He couldn’t get comfortable no matter what he tried. He wanted to get out of bed, and Kim, the nurse, wouldn’t let him. I tried piling pillows behind him to help him breathe.

In the morning, Melanie noticed that one of his pupils was bigger than the other. Dr. Messersmith (a tall fellow who was always very kind), wanted him to be taken to get a CT scan of his head, in case he had some sort of hemorrhage in the brain.

Amazingly, during rounds, they said that he was breathing better. They are going to call in a nephrologist (kidney specialist).

Thanks to their BS during rounds, I stupidly thought Tom was doing a little better. There is such a disjoint between what the doctors say and what is really going on.

There are so many things I wish we had talked about. The worst thing is that I don’t feel I was very helpful to Tom through what has been a very scary disease.

Tom now has a day sitter as well. She is an EMT and going to nursing school. She is actually very helpful. Two days ago, he could go by wheelchair—now they have to take him in bed with oxygen and his arterial line. Moving him is a real production.

Early in the morning, I called Sandy and told her what was going on. She agreed to go and get Phil and bring him to see Tom, just in case Tom did not make it. Brian would come separately. I also called Tom’s mother and brother, and told them they needed to come up from Florida. They had to drive—almost no planes were flying. Initially, they were thinking of driving up on Friday, but they fortunately they started out on Thursday night.

Sandy dropped Mike, her ex-husband, off at the house in King George to take care of the pets, picked up some clothes for me (I had been washing the same three outfits over and over since September first), picked up Phil, and drove to Baltimore.

Brian arrived first. He and Tom had a serious discussion. Tom made us promise that we would not let him die on the ventilator without being awoken. Dr. Lee was totally irritated, but agreed that if we insisted, they would take Tom off the drugs they would use to keep him sedated while he was on the ventilator. He and the nurses were convinced that being on a ventilator was a hideous experience, and that keeping the patient drugged with both a painkiller and a drug to make them forget the experience was absolutely necessary.

Brian and Phil left, Sandy stayed, and about 6 p.m., they put Tom on the ventilator. They insisted we leave Tom’s room. (Apparently the procedure is fairly hideous.) When we got back, Tom seemed very uncomfortable. The lights were all on (he usually hates that).

Sandy wanted to go down and have a cigarette. When we came back, the nurse, Pam, had cleaned Tom up and he was lying peacefully on the special bed they had gotten him. (I had to wonder whether Tom might have gotten more sleep and not succumbed to pneumonia with a bed that fit him better in the first place.) He was “snowed” as the nurse called it. I was horrified and so was Sandy—though he did look comfortable and was sleeping—if you can call it that—for the first time in days. He was breathing comfortably without his chest heaving up and down as it had for the last five days.

However, his blood pressure is quite low. They are using neo-synephrine to raise it.

We stayed for a long while, but eventually left. Sandy stayed over with me at the Rockwell House. I know she is really short on leave at this point because she has spent so much time taking care of our Aunt Betty, who has lung cancer and emphysema. I was very grateful to have her company.

September 14, 2001: Friday. Sandy left fairly early. When we arrived, Tom was still snowed—very heavily drugged—on fentanyl, a painkiller, and versed, a drug which makes you forget. He did not move at all. Unless someone turned him, he stayed in the same position for hours at a time.

During rounds, they said that his “lungs look great,” however, his BUN was 102 (should be no higher than 21), and his creatinine is 2.1 (should be no higher than 1.2). They speculated that he might have to go on dialysis. Dr. Ugarte, a Dutch renal fellow came by, and said his kidneys were working at about 50%.

They wanted to do a bronchoscopy with lavage (they put water in the lungs and pull it out again to see if they can find any bacteria or fungus).

Elsie, Tom’s mom, and Mike, his brother, arrived about 11 am.

I think everyone was shocked by his appearance. His entire body was bright red from about 3 inches above his waist up to the top of his head. When his eyes opened, they were totally sclerosed. All the veins in his eyes are broken from coughing when he has such a low platelet count.

Sometimes he coughs and they suction the stuff from his throat. It makes him choke.

In my notes, I wrote, “Tom has had a quiet day. His kidneys are in trouble, his blood pressure is falling. His lungs are no better, but there is less gunk in them.

“Elsie and Mike are here. Tom seems to know. He looks rather fragile, and the truth is that he is fragile. I try to be hopeful, but I will be very surprised if he lives.”

Late in the day, Dr. Choi, the kidney attending came by and said that Tom’s creatinine had gone down. He was almost maxed out on the amount of neo (neo-synephrine) that he could have.

September 15, 2001: Saturday. Dr. Ugarte, the renal fellow said his BUN was at 96 and falling. (Good news!)

After rounds, Dr. Pierce, the pulmonary attending doctor stopped by. He said that the stains were negative, cultures were pending, CMV was pending, and that no part of his lung had collapsed. He could have a fungus infection. He had four spots that looked like they could be aspergillis.

Tom was not worse, and he was holding his own. His lungs were very stiff. However, the gentle, kind Dr. Pierce cautioned, when Tom’s white blood cells (ANC) returned, Tom might actually get worse because the neutrophils would go to the lungs and in killing the bacteria, could cause a backlash that could damage his lungs.

Every day, Dr. Pearce looked at Tom’s flush. The oncology nurses and doctors who commented on it, said it was an Ara-C rash. Initially, Dr. Pearce thought it might be from Vancomycin, “red man rash.” However, Dr. Pearce was unhappy with red man, also. It just didn’t look right to him.

So he checked the literature on all the drugs Tom was on. Today he announced that the most likely cause of the rash was Imipenem, and he said he would suggest to the team that Tom be taken off imipenem, a penicillin derivative. There was another drug they could give him instead.

He explained that the rash Tom had was probably part of the reason that Tom ended up on the ventilator. The skin is an organ just like the lungs or the kidneys, and a massive amount of Tom’s skin was involved.

Lyle, an affable male nurse who usually worked nights, came in to take care of Tom. He was willing to reduce the amount of fentanyl and versed that Tom was getting, and got them down to 100 mics of fentanyl, and 1 mg. of versed. Tom was able to respond by shaking his head or squeezing my hand.

It is good to have Elsie and Tom’s brother, Mike here. Mike is very gentle with Tom, and spends hours holding Tom’s hand and talking to him. Elsie talks to him, too.

I talked to Lynda Hoover today—had e-mailed her a while ago. Also talked to Marie, Elsie’s cousin. Her son had a brain occlusion from being hit in the head. Apparently he is doing o.k.

September 18, 2001: Dr. Polonsky and Dr. Pierce tested Tom and tried to take him off the ventilator today. He did well, but they felt safer letting him stay on one more day.

September 19, 2001: Finally, today, the two Drs. P took Tom off the ventilator. They just pulled out the tube. Tom could barely talk. He immediately insisted his mother and I leave the room. Mike says he swore a lot. When Elsie and I returned, he had pretty much lost his voice. I was so pleased that they were able to see him without all the hideous sedation.

Tom’s sodium level is high. They are giving him more fluids.

September 20, 2001. This is day 30 since the first day of chemo. Tom’s counts should be coming back, but they aren’t. Elsie and Mike left today.

September 21, 2001. Still no counts. Tom’s lungs filled up again. Tom was put back on the ventilator. Because he said he remembered the last time, they insisted on giving him much more sedation this time. I was pretty ticked about this. While they were putting him on the ventilator, the renal fellow stopped by to say, “We just gave him too much fluid again. He’ll be off in a couple of days.” Cold comfort. At least he was honest. Rita Suffness, an old friend, came by. It was really good to see her.

September 25, 2001. Still no counts. Sandy’s birthday. I didn’t do anything for her. Horrible incident. Tom was supposed to come off the ventilator today. But they took him for a CT scan first, and the idiots ran out of oxygen. Tom had a panic attack because he couldn’t breathe. It was impossible to take him off the ventilator. Poor Tom!!! I can’t believe what idiots there are here.

September 26, 2001: Still no counts. At last, Tom is off the ventilator again. No one thought he would live. Even Dr. Pierce said that what Tom had gone through would have killed most people.

September 29, 2001: Tom is still having trouble talking. He continues to write notes. He has had a succession of sitters to keep him from getting out of bed. Some of the sitters were kind to him, but others were very rough, kept the light on so they could read, etc. Because he couldn’t talk, he was at their mercy. One put cold packs on him, as instructed by the nurse. A couple of the cold packs leaked coolant. She did not clean it up. She just left him lying in chemicals. He begged not to have a sitter anymore, and suggested, in desperation, a solution: “Kim strapped one arm to the bed in abs of sitter,” he wrote in a note to me. Kim was one of his nurses. This broke my heart. But they would not let me stay, and they would not Tom stay alone.

We both feel like we are in prison, for an indeterminate sentence for a crime we did not commit. Tom feels trapped in his bed, and I feel trapped by Hopkins inhumane attitude. Who would have thought that a world-class hospital would be so difficult to deal with?

We didn’t have much alternative, but if we had it to do over again, I wish Tom could have had this treatment some place else. There were many individual nurses and doctors who were excellent, but the nurse who ran Tom’s ward was hideous to have to work with. She made everything more difficult for us.

[In between here, Tom got off the ventilator again. Dr. Pearce’s month as attending physician ended. I was so grateful to him—not only was he the only doctor who looked at Tom’s rash and questioned what he saw, he was very supportive of me. He actually valued my opinions and asked for them. I cried when he left for the last time.]

October 5, 2001: Friday. I went home for the first time Since September 1. Stopped at Ledo’s to get pizza for Phil and Adrienne. Tom would love to have some, but it wouldn’t be safe to bring it back to him.

October 12 and 13, 2001: Saturday. I drove home today and spent several hours searching fruitlessly for the information I have about Tom’s birthmother.

October 14, 2001: Sunday. Free, free, free at last! Tom was released from Johns Hopkins today. He is too weak to climb the stairs at home, and still needs abelcet, an antifungal drug for his aspergillis pneumonia. Intravenous only. We have to stay in Baltimore for about two more weeks. After a 55-day stay, we had accumulated a huge amount of stuff in Tom’s room. Brian Pendleton, our nephew, came to help us move back to Rockwell house where I have been staying. Brian left as soon as we were moved because today was the last day Cal Ripken played baseball, and Brian wanted to avoid the crowd. The room is small, but Tom can navigate it without having to use his walker. We celebrated by ordering a pizza from Pizza Boli—they delivered—it tasted pretty good.

October 15, 2001: Monday. Tom had his first outpatient Physical Therapy appointment today. He had blood drawn at the outpatient clinic, then on to a very restrained PT appointment with Kelly Daley. She had him do some non-resistive exercises because his platelet count is still fairly low. Tom needed a wheelchair to get from Weinberg to PT and back. Tom wore a shirt with a Harley cycle picture on it. Kelly remarked that the emergency room crew called them “donor bikes” because of all the organs they provide for transplants.

Before she left for Florida, Cindy told me that Amy Smith-Wilson, a teacher at King George Middle School was at Hopkins undergoing chemo for leukemia. While Tom was receiving abelcet, I looked her up and went up to 5A visit her. She had been there for at least a week already, and seemed to be doing fairly well. She has APL, acute promyelocytic leukemia, and was receiving treatment on a new protocol.

October 16, 2001: Tuesday. Left Tom alone at Rockwell House, went to work at RCC King George site for the first time since the first night of school in August. Cindy’s father in law died and no one else could go to the site. I hated to leave Tom alone, but there was no choice. He was certain he would be OK, and insisted that I go. Before I left, I stopped at Safeway for something for him to eat, and got some gazpacho from Café Madrid. They gave me a huge amount for $7.00, put it in a garlic container. I was skeptical whether this was safe for Tom. However, he ate two large cups of gazpacho, although he said it was too garlicky.

It was great to be back at the King George Site. I saw many of my students (I think of them as MY students even though of course they are RCC students) and some of the instructors. I had not realized just how much I missed them all. I drove back after closing, without even stopping by to see Phil and the pets. As he had predicted, Tom was just fine. It was the first time Tom had been truly alone since checking into Hopkins. He was thrilled to just be alone. I stopped at Wawa’s for gas—it is the cheapest place, plus another $100. Money is flowing out like water.

October 17, 2001: Wednesday. Saw Dr. Miller. Tom is in remission—no evidence of blasts, some early platelet cells, so Tom’s platelets will eventually come up. She wrote the summary of Tom’s hospitalization. We were worried about the reduced ejection fraction in Tom’s heart. She said wait, the Hutch will want to do their own studies. She told us in no uncertain terms to make an appointment for a consultation at the Hutch, as quickly as we can get one. Otherwise, Tom might fall through the cracks, and he will not stay in remission for long.

October 18, 2001: Thursday. No commitments at the hospital today, so we went out to lunch. Tom is finally getting his appetite back. We discovered a restaurant that has excellent weekday specials. Stuffed lobster was Tom’s choice; I had a huge 40-ounce Porterhouse steak. Needless to say, I could not finish it, so Tom helped me. We both had cream of crab soup. It was good, but somewhat bland. To our surprise, drinks were not refillable.

Tom looks so tired, exhausted, and old. He moves like an old man in with his walker.

I talked to someone in the transplant group, who said that a doctor would call back in 24 hours, but he said; don’t stay at home waiting for the call.

October 19, 2001: Friday. In PT today, Tom was able to walk 300 feet with his walker, and get up 12 stairs. The hall seemed very long to Tom. We stopped at the gift shop and got a late birthday gift for Sandy.

October 20, 2001: Saturday. Still in Baltimore. I wanted to go home for the weekend, Tom didn’t. Phil wants us to let his friend Steve stay at the house. Steve pierced his ears and put in earrings. His parents kicked him out of their house. Like Phil, he does not have his driver’s license and would be trapped at our house.

After the horror and people studded hospital stay, where Tom was never alone except when he was on the respirator, Tom just wants to be alone and so did I.

We ate at a Little Tavern for lunch—shades of the old days in College Park. Club LT (as we used to call it) tastes about the same. Then we went to Sam’s on Eastern Avenue. Tom had to use a motorized cart to get around. Tom was exhausted from this activity, but it was really nice to do something normal and ordinary for a change. All the while, I am constantly amazed that Tom is still alive. He has fantastic spirit and grit to have stayed alive through what he did. We cherish every moment we have together. As one of the nurses at Hopkins said, “Make the most of the time you have together. You do not know how long it will last.”

Finally we went to dinner at the Madrid Café on Broadway. Great Spanish food. Chef Pepe took a special interest in Tom (I had been there before to get gazpacho for Tom). He told Tom to drink red wine every day—that would fix him up quickly. Bad news when Tom wanted to go to the bathroom. It was up a steep flight of stairs. Tom had to wait.

October 21, 2001: Sunday. Went out to a Sunday Brunch. Tom couldn’t eat much, and had an attack of nausea. Luckily I had brought some Northern Neck ginger ale, which usually helps Tom.

October 22, 2001: Monday. While we were waiting for Kelly, a man coded in the PT room. Tom and I were waiting outside the door to PT, Tom in a wheelchair. Amazingly, it took eight minutes for the team to come to the PT room. They came in ones and twos, and some were not even sure where to go. We were shocked. Guess that ‘s not the place to have a medical emergency after all. Fortunately, the young man lived.

In PT today, Tom walked 350 feet and was able to climb 16 stairs.

In the evening, there was a focus meeting at Rockwell House. The social workers wanted to know what Hopkins could do to make things easier for their cancer patients. Many suggestions. I discovered that there were other people who found it difficult to deal with Hopkins like we did, including a young mother with kidney cancer, who had spent eight months in the hospital. They paid each of us $50 for participating. Our total, $100, paid for about four days at the Rockwell House. Insurance didn’t cover it.

October 23, 2001: Tuesday. Tom got two units of red blood cells. They were very slow today. Tom had a long wait on a very uncomfortable gurney. One of the techs drew Tom’s blood in the appropriate way, and I packed it and sent it via Fedex to Seattle. A lot is riding on this—Tom’s entire future and life. The blood is supposed to be less than 24 hours old when they receive it—because of the time change, it will be about 27 hours.

Tonight was Pizza Night at Rockwell House. We met several of the other residents. Once again, we were reminded that there are many people who seem even worse off than Tom. The saddest was a tall man from the Eastern Shore who has a brain tumor, which can’t be operated on. His wife begged him to get radiation which could give him one or two more years. He once was so tired from radiation that he laid down on a busy sidewalk next to the hospital and woke up two hours later. Bizarrely, no one checked to see if he was O.K. Tom is still very debilitated. I had to get his pizza and Greek salad for him. He was able to eat four pieces of pizza. It was nice to be with other people, but I found it very depressing to hear everyone’s sad story.

October 24, 2001: Wednesday. Had a conversation with my nephew, Phil, who is taking care of the house. There was some discussion of dalmations that Adrienne and Steve had acquired. We had specifically said that we did not want any more animals and we didn’t want any animals to be around ours. Phil wants to leave at noon on Friday. Initially, we were planning to come home on Saturday, but Tom was anxious to get home, so we decided to leave early. We had quite a bit of food left over. We put it out for others to use, and all of it disappeared before we left.

Wednesday is bargain night for lobster at Michaels, a restaurant on Eastern Avenue. For 17.99, Tom was able to get a stuffed lobster. Though his appetite is not back, he managed to eat the entire thing. He still needs to use his walker to go any distances. His back and rear end are so sore from laying in bed so long, we have to take a special seating pad everywhere we go. I started packing for the trip home.

October 25, 2001: Thursday. We packed up and came home. Getting ready to go was a major effort—we had a lot of stuff, including the refrigerator that we had in Tom’s room, the laptop computer, a printer, clothes, and all sorts of other things. The truck was full. One of the female social workers at Rockwell House lifted the fridge into the truck by herself! Very sweet of her. At one point, wind sent our plastic dolly hurtling toward the truck. A man in a neck brace tried to catch it. Just before it hit the truck, it ran into a tree and stopped. “The tree saved your car! The tree saved your car!” he cried in a foreign accent I could not identify.

Beverly, the woman with tonsil cancer stayed with me and helped me pack the truck. Packing took forever. We did not actually get out of the room until about 10:40 a.m.

Tom was alert and awake, and not too uncomfortable. We stopped at McDonald’s on the way home, first time we had been in more than two months. We also stopped at Wawa’s to get enough money to pay all three of them. Gas is down to .99 a gallon in King George.

Phil, Adrienne and Steve were quite surprised to see us. Adrienne and Steve had two dogs that they had found in a field. They were packed and ready to leave. We sent them off to Outback for dinner. They came back after dinner and left for Vienna.

Tom was thrilled to be home. The situation had been so bleak, I wasn’t sure he would ever come home. After 55 days in the hospital and another ten days of physical therapy and antifungal therapy, Tom has finally made it home. Thank God.

The dogs and cats were happy to see us, and we were happy to see them, too.

October 26, 2001: Friday. Tom needed a blood test, so we stopped by Dr. Muir’s office to get an order. Dr. Muir was out of town, but we saw Dr. Maurer, who had set up Tom’s chemo with Dr. D initially. He encouraged us to go in to the office even though it was closed. We saw Kay, Lynne, and most of the crew. Lynne kissed Tom on the top of his head. Tom was touched. It was actually a great, triumphant moment. Tom had made it back through a horrible ordeal and was still alive, albeit not kicking too much.

We also saw Tom Jackson, whom we met at Dr. Muir’s office in 1997, and have seen periodically since. He had lymphoma, which was cured, but the cure damaged his heart. He told us he had a stroke in April, and that his Dad was moving to Maryland, so he had to find his own place. Tom had to go over to the hospital to get blood taken. Tom’s great desire was to have a steak, so we splurged and went to Outback for dinner. Tom has been craving Outback and this is the first time he has been able to do so. I am grateful for every second we have together. However, I am greedy and I want many more years with Tom.

October 27, 2001: Saturday. What a treat to just be at home again. Tom was able to sleep late—a luxury that he has not had since he checked into Johns Hopkins. He took advantage of it and slept until about 2 p.m.

I mowed the lawn—however, first had to pick up all the stuff Brownie and Gyp, our two BAD dogs had carted outside. The highlights: a fire %%, which they had torn apart except for the metal casing and the white plastic tube at the top; two shoes (only the soles were left), a paperback novel (lucky we didn’t want to read it anyway), several kitchen towels, about 130 pages of documentation on Windows 97, a Halloween witch doll that we had never seen before, in four pieces, plastic bread wrappers, socks, etc.

We went to Best Buy in Fredericksburg. where we finally found Little Shop of Horrors on DVD. Tom used a wheelchair at the store. The clerk at the register talked directly to him, not to me. Usually if he is in a wheel chair he is ignored. We had pizza at Ledo’s in Central Park. I wanted it to be perfect for Tom, but it was lousy pizza, barely warm. We won’t be back for a while

We stopped at Food Lion. As usual, I saw a couple of students. Both were pleased to see me and had several questions about which courses they should take. It took me a while to get out of Food Lion. In the meantime, Tom had decided there was something he had to tell me. He got out of the truck to find me, then saw that I was coming back. He turned to get back in, but he had already locked the truck. He dropped his keys, bent to get them, and fell while he was trying to get them.

I did not see this happen, but when I opened the door to the truck, the look on his face was utterly panic stricken. He hurt his shoulder. With his low platelet count, he could have been badly hurt. I was horrified. Of course I realized immediately that I should never have gone to Food Lion when he was along.

October 30, 2001: Tuesday. Tom had his first appointment with Physical Therapy Association of King George. Forrest Whitaker, the therapist, was very helpful. Forrest helped Tom greatly with the mechanics of balance. He also suggested Tom consider getting a cane, and told him where he could get it.

I worked at the King George site. It was great to be back. I mentioned that we felt like Weebles, toys that wobbled around. Jane Marvin reminded me, “Weebles wobble but they don’t fall down.” That is Tom and me. We may wobble, but we don’t fall down. Tom is such a fighter.

Tom saw Dr. Muir for the first time since he got back. Dr. Muir congratulated him. No surprise, Tom needed another transfusion. Went to Hard Times Café for lunch, then to Metropolitan Drug next door to get Tom a caned. It was a mistake to go to lunch first. The transfusions took forever.

October 31, 2001. Wednesday. Made reservations for our trip to Seattle. The price on Southwester Airlines is only $215 per ticket. I went to work. Fortunately Cindy was also there to let me know what was going on. Talked with Sandy. Did we know Phil really doesn’t want to come down? He would do it anyway.

November 2, 2001: Friday. Tom went to Physical Therapy first, then we headed to Fredericksburg for an appointment with Dr. Muir. Tom needed the usual blood tests.

Transplant

November 4, 2001: Sunday. Phil and Adrienne, his girl friend, came to stay with the animals. Phil was pretty unwilling. He really prefers Vienna, there is so much more to do there. But, as he says, “I’ll do whatever is necessary to help Tom live.”

November 5, 2001. Monday. Left for BWI about one a.m. Long drive to the airport, and a long wait for the Southwest Airlines booth to open. Tom took only his cane. He no longer needs a walker, but we did ask for wheelchairs at all of the terminals. Turns out that being handicapped was a big advantage—because of Tom we were the first ones on the plane for the flight from Baltimore to Memphis, and again for Memphis to Seattle. We arrived in Seattle about noon, then took a cab to the First Hill apartments. First Hill has lower prices for medical stays. We discovered right away that real estate prices in Seattle are really high. The cost of an efficiency apartment here is almost as much as we pay for our mortgage at home. We stayed in a studio apartment with an uncomfortable queen size bed, a kitchenette and one chair. They provide a van for their residents. We hopped on the van and Juan, the driver, dropped us off at Yasuko’s Teriyaki. (There are lots of teriyaki restaurants here.) We had a very inexpensive dinner, stopped to get some food for the morning at a tiny corner food store, then went to bed by five a.m. Seattle time. We didn’t get up until the next morning.

November 6, 2001: Tuesday. Juan dropped us off at the Seattle Cancer Care Alliance (SCCA) building (formerly known as the Hutchinson Cancer Center in its old digs) for a 9:15 appointment.

Consultation with Dr. M, 25 years of experience with transplants. He was extremely negative, tried to talk Tom out of having a transplant. He said Tom’s chances of cure were between less than one and five percent. “If it were me, knowing what I know, I wouldn’t put myself through a transplant,” he said.

He had more to say, all negative. “The probability of success is so low, it doesn’t matter.” He pontificated on what is the right decision; in the end, it is the decision that you don’t regret. If you lay on your dying bed, having chosen not to do a bone marrow, and say, “I wish I had done it,” or alternatively, if you have the bone marrow, and lay dying and say, “I wish I hadn’t done it,” these are the bad decisions.

Dr. Martin said, “A bad outcome is most likely! Plan for it!” I guess he was trying to be honest with us, but he was very negative, smiling a sort of superior smile as he said this. (Here’s the sad thing—we waited a few extra days to talk with him, because Christie Satterlie said he was an expert on HLA typing, and she thought he would be the best person for Tom to talk to.)

Very discouraging, but Tom had his standard answer. He looked Dr. M straight in the eye. “It’s just like the lottery, you have to play to win.” Tom’s feeling is that this is his only chance, and no matter how slim, he is going to take it.

M emphasized how out of shape Tom was. He asked me what my estimate of Tom’s condition was now in relation to what his condition had been.

I said, “Probably fifty percent.” He indicated that this was a negative factor.

He said that if Tom did decide to go through with a transplant, that he would need to have a bone marrow, not a peripheral stem cell transplant because of his advanced disease. Then he described the process. After undergoing a round of tests to see what his current physical condition is, and what problems were likely to come up, and once a donor had been secured, Tom would receive a round of conditioning (I would call it deconditioning since it is very destructive).

First Tom would have three days of total body irradiation (TBI), six treatments, two a day with 1200 Centigray total for the three days. Then the next two days he would have high dose cyclophosphamide—trade name, very apt—is Cytoxan. During the time he received Cytoxan, he would have to have his bladder irrigated with 500 ccs of fluid an hour so that it would not be chemically burned. After this regime, he would get a day off. During the day off, he would begin receiving Cyclosporen, an immunosupressant drug given to help prevent rejection of the transplant and to help prevent graft versus host disease (GVHD, a condition where the donor’s blood cells see the hosts own tissues as foreign, so attacks them. GVHD can occur anywhere, but primarily occurs on the skin, gut, liver, and lungs).

Then he would receive the bone marrow transplant. In the meantime, the conditioning regimen would cause a host of side effects: nausea, vomiting, diarrhea, hair loss, dry mouth, mouth sores, etc.

We already knew that the transplant would be administered the same way as a blood transfusion, via IV. We later found out that the day after the transplant, Tom would receive methotrexate, which with cyclosporen decreases the amount of acute (early, very serious) GVHD. He would receive doses on Days 1, 3, 6, and 11, which were likely to cause mucositis.

Despite the drugs given to suppress Tom’s immune system, there would still be a 70% chance that Tom would have ongoing chronic GVHD, that would require Tom to take immunosuppressant drugs for at least a year or more, Dr. M told us.

Tom and a caregiver (that would be me), would be required to stay in Seattle for at least three weeks before the transplant, and at least one hundred days after the transplant. The time in Seattle could be much longer if Tom’s transplant did not go smoothly or he developed a lot of GVHD.

Dr. M led us to the sixth floor (he was very impatient with Tom’s slow gait—Tom had just recently moved from a walker to a cane), commandeered an examining room, then examined Tom briefly.

After meeting with Dr. M, we also met with Christie Satterlie, who was coordinating the search for Tom’s donor. Christie informed us that Tom’s search had been fast tracked. Instead of five or six months, it would take about five or six weeks. This was necessary because no one knew how durable (how long) Tom’s remission would be.

While they were finishing up their own HLA typing of Tom’s blood, the SCCA had taken the information they received from Johns Hopkins, which had typed eight of the ten human leukocyte antigens in 1997, and made a guess at what numbers nine and ten would be. In order to speed things up, they planned to use a potential 26-year-old male donor who had already been typed at SCCA previously. Because Tom’s donor was not a relative, GEHA would not pay for any of the HLA typing needed to discover whether different donors were compatible with Tom. (Once a donor was chosen, however, GEHA would pay the expense of obtaining the donor’s bone marrow.)

Christie had us apply for aid from the National Marrow Donor Foundation and she had already sent in an application to the NMDP’s Urgent Project (funded by the Navy). The Urgent Project would select up to 10 potential donors who were the closest match for Tom, and do the HLA typing on them. We would not have to pay for the initial HLA lab matching on any of them. SCCA would choose the best match, then start typing on that donor. We would have to pay only for the SCCA’s final HLA typing. Although we would not have to pay for ten HLA typings, we would still have to pay for any typing that the SCCA needed to do. The average cost per donor typing is about $2800. Depending on how far they needed to go in the match, it could cost up to $6000 per donor. And there was no guarantee that the first or even second donor would be a match or be able to donate at that time. They would keep going until they had a donor who was the best match, was willing, and could pass the medical exams proving that he or she was healthy enough.

Christie was followed by Linda Spate, who was working on the financial aspects of the transplant. She explained to us that GEHA had approved Tom to come for a workup, but not for the actual transplant. GEHA would do that after the workup was completed. That was a surprise. In order to go through with Tom’s transplant, we had to set everything up so we could be away from Virginia for at least five months. What if we got it all set up, and either the SCCA sent Tom back (i.e., refused to do the transplant), or the insurance company refused?

Finally, a nurse came out to give us a tour of the clinic. Tom was pretty exhausted, so we just asked her questions, primarily about the attitude at SCCA and the University of Washington Hospital.

Still burned from our experience at Johns Hopkins, we asked what the hospital visiting hours were. “Twenty-four hours a day,” she replied.

After the consultation, we went to see the Seattle Space Needle. Things are so uncertain, Tom said, “We may never get back here again. I want to see the needle.” So we took a taxi from the SCCA Clinic to the Space Needle. It cost $11 each to go up to the needle. Originally we planned to eat lunch there, but the restaurant is closed on Tuesdays, and it is incredibly expensive to eat there. We had a snack at the restaurant on the observation deck, and Tom had some Starbucks coffee. Then we worked our way around the deck, going fairly slowly because Tom had to stop and rest frequently. He still needed his cane to get around.

We took the monorail from the Space Needle to the downtown Center, then found a bus that took us most of the way back to the apartment. If we had stayed downtown, the ride would have been free, but it was $1.50 each. The driver told us where to get off; we walked across the road, then transferred to another bus. That driver told us where a third bus stopped so we could get really close to the First Hill Apartments.

We ordered pizza in from Pizza Hut. It was overdone and terribly salty.

November 8, 2001: Thursday. Early morning.

We were almost home at 1 a.m., had just turned from Route 301 onto Route 3, just before the Canterbury turnoff, when a deer appeared in the headlights just in front of us. I hit the brakes, but I hit the deer with a sickening thud. The deer skidded across the road, looked up at me, and then died. I was beside myself, horrified for the poor deer, horrified at the bad karma of killing a deer when we are so desperate to try and save Tom’s life. The deer was a beautiful 7-point buck.

When we got home, we discovered that the truck was damaged, and the antifreeze was leaking out. Adrienne was asleep, but Phil and Steve were still up. Tom got them to empty Phil’s truck (he had put 5 of Nanny’s chairs in to take with him when he left in the morning) so Phil, Steve, and I could go retrieve the deer. Tom really wants the skull and the points. The three of us (with me driving, since neither Phil or Steve has a license), drove around the back route of the Canterbury subdivision. They managed, with great difficulty, to get the deer into the truck. He was big and heavy, and not stiff yet. We drove back to the house, and they dumped the poor deer into a ditch. It landed with its front feet up in the air, a pretty ignominious end for such a magnificent creature. Steve pulled some branches over it to cover it up. We finally got to bed about 3 am.

November 12, 2001: Monday. At the request of the SCCA, Tom had a bone marrow biopsy at Dr. Muir’s office. We were anxious to see the results—if Tom is not in remission, the SCCA won’t do a transplant. After the biopsy, we went to lunch at Hard Times Café, one of Tom’s favorite places to eat. We had our usual, a small steak each. Then we hurried to Dr. Massey’s office. He is an ENT doctor. Tom has a small lump in his left parotid gland. We waited for a long time there, among young children. Though we both love children, we try to stay away from them. They tend to have lots of respiratory infections, and it is important Tom does not get one. As soon as Tom was finished with Dr. Massey (upshot was that he gave Tom antibiotics), we drove over to Mary Washington Hospital. I dropped him off so he could have a transfusion, then headed to work at the King George Site. After work, I picked Tom up at the hospital. The transfusion went pretty fast. Tom arrived at room 338 about 5:15 p.m. He was finished and disconnected by 11:30 p.m. The nurse forgot to flush his line. Looking over the blood, I can’t see that it was CMV negative.

November 13, 2001: Talked with Dr. Miller from Hopkins. She called to see how Tom is doing. She cautioned once again to give Seattle only what they ask for. I talked with Marge Noel, a friend and one of Tom’s previous co-workers. Tom did his exercises with weights today. He also watched TV and actually did the dishes. I worked at the King George Site.

November 16, 2001: Friday. Another busy day. Tom had PT at 9 am, then he saw Dr. Muir at 11 a.m. Then it was off to Mary Washington for another transfusion.

November 20, 2001: Tuesday. Tom left to pick Elsie up at Richmond airport. She did not tell us which flight she was on, so he guessed and turned out to be about two hours late.

I went down to RCC Warsaw for the last time until who knows when—said goodbye to all, was reassured by Wallace Lemons that they wanted me to come back, no matter how long it took. Dave Newsome has two new employees who fixed the computer up with Microsoft Office so I don’t have to struggle with Microsoft Works any more. They also put on SIS, which may or may not work in Seattle.

Then it was off to the site at King George High School, for my last night. Many problems with spring schedule—instructors who changed their minds—what a hassle. I did what I could to straighten it out.

I did not see Elsie until morning. Both she and Tom were long in bed by the time I got home

November 21, 2001: Wednesday. Tom went to his last physical therapy appointment. Then we were off to see Dr. Muir for the last time in who knows how long. He emphasized to Tom that he would see him when he got back. I pray that he will. Kay as always sent him off with her love. Kay has always been a big help, especially in setting up appointments at Mary Washington for Tom to get transfusions. Lynn and Jo wished him well also. Dr. Muir wished him well, said, “See you when you get back.” We got back, and most amazingly, the truck was ready at Gautier’s. We picked it up and it looked great. I only wish I could have driven it to Washington State. We had a lot of stuff and it would be great to have a vehicle when we are in Seattle.

Message on the machine when we got home—“The first donor failed the medical exam. Come anyway.” We couldn’t reach anyone in Seattle because of the holiday. So we took them at their word—“Come anyway,” and continued our preparations for leaving. I knew they had a lot of potential donors. How quickly could they find another?

November 22, 2001: Thursday. Thanksgiving. This year, we really do have something to be thankful for—that Tom is still alive. It is a miracle that he is here with us at all. He went in blast crisis in August, and barely survived the chemotherapy.

It would have been nice to have a lovely Thanksgiving dinner at our house, but initially we thought Aunt Betty would be there, and her oxygen setup would have made it difficult for her to come to the house. So Sandy and I compromised, and we had dinner out at a hotel—the Holiday Inn Select in Fredericksburg (the old Sheraton, now even tackier than ever). The meal wasn’t great, but the company was: Elsie, Tom, me, Sandy, Brian, Phil, Cindy Ewoldt, her husband Matt, and sons Nathaniel and Bill.

Cindy is the main reason I was able to spend time with Tom at all while he was in Baltimore. She expected to work about 12 hours a week, and ended up having to take over my job. She did an admirable job of it, too. I am very grateful to her.

November 23, 2001: Friday. Tom to Mary Washington for another transfusion. Elsie went with him.

I stayed home to start packing and continue sorting through what to take and what not to take. For instance, we will probably have to stay until April—should I have taken the tax stuff? I compromised and put all the records I would need and left them in a box near the piano. Sandy or Phil can send them to me if I need them.

I had lots of calls to make—almost no one was open. I needed to get several things straight on various hospital bills. (We have tons of them.)

I am desperately trying to get us into the Pete Gross House in Seattle—rent there would be a bit cheaper than First Hill. Also, it is closer to the clinic, and especially, they have washers and dryers in the apartments, which appeals to me after having to wash clothes by hand for so long at the Rockwell House.

I took the new Eureka to be fixed, could not take the hose to the Mighty Mite because it was locked up in Phil’s truck. I gave Tom my keys so he could drop off a box of stuff for Cindy at the high school. Oops, I had already left my key there, so Tom couldn’t get in. We will have to drop off the box on Sunday as we leave for the airport.

Made reservations for the Holiday Inn near BWI so we can sleep for a bit before going to the airport at 4:30 am for a 6:50 flight.

November 24, 2001: Saturday. Tom took Elsie back to the Richmond Airport. Adrienne, Phil, and Steve arrived. Adrienne has generously and graciously offered to take care of pets and house while Phil works on getting his driver’s license in Vienna. We went to Fred, I dropped the three of them off at Top’s Chinese Restaurant Buffet and headed to the battery store.

I am still trying to get everything ready to go. It is now very obvious that I will NOT be able to get everything into four suitcases. I am packing up boxes as well that Sandy will have to mail to us.

I have made up a list of phone numbers for Phil and Adrienne, so they know who to call for every possible emergency. Taking care of our house in the winter is a much tougher proposition than in the summer. The oil heater needs to be babied, the pipes can freeze, etc.

November 25, 2001: Sunday. Still packing up to the last minute. Sandy came to take us to BWI. Long trip for her, she has to come down from Vienna, about an hour and forty-five minutes, then take us to BWI, about two hours, then go back to Vienna. She says that will take only an hour, but that is hard to believe. She brought Aunt Betty’s van, so Phil and Steve came along—they were a big help with the copious luggage.

November 26, 2001: Monday. Flight to Seattle from BWI. We spent the night at the airport. Hated for Tom to stay up all night, but wasn’t worth $100 to spend about 5 hours at the Marriott. After two very crowded uneventful flights, we arrived in Seattle shortly after twelve p.m. headed over to First Hill Apartments. Got the same room we had when we came for the consultation on November 6^th. We are still trying to get into the Pete Gross House, which is cheaper and has washers and dryers in the rooms.

November 27, 2001: Tuesday. Appointments started at 1:00 p.m. Before we left for the SCCA, I called the Pete Gross again. Spoke to Brenda. She has a studio apartment, but is holding it for another woman. If the other person doesn’t call, we may be able to get it. We also looked at a one-bedroom apartment at First Hill. It would be much more expensive than the room we now have. We are anxious to get out of this apartment because there is no cold water. Something is wrong, and after a moment or two, the cold water—even in the toilet, becomes hot.

1:00 Tom had to give his medical history to Naomi Hunder, a resident. It is lengthy, and she was very thorough. She informed Tom that he would have to have a lumbar puncture to make sure that he does not have leukemic cells circulating in his spine and brain. If he does, he will have to have extra doses of intrathecal (directly into the spine) methotrexate. Not only is the idea of having a spinal tap horrible, but the idea of having to have extra chemo in the spine is particularly chilling.

2:00 We had an orientation with the Blue Team Nurse for that week, Tanya Buivydas, a young nurse with an Australian (Diane Stayboldt, the regular nurse is on leave). We were assigned to the blue team. Tanya gave us a blue folder and told us to keep it with us always. On the left side were informational items. On the right side were a great number of experimental protocols that they hoped Tom would sign. Tanya was most helpful.

She also gave us a schedule showing where to go and when to do so. The schedule is daunting! Each day, Tom has several appointments. Later we were given a pager so they cold find us any time.

Rainer Storb is the attending physician, but we will only have him for a few more days, then another physician will be the attending physician for the next month. We will meet with him tomorrow. We were also introduced to Joanne, our scheduler—I say “our,” because she not only schedules appointments for Tom (I go with him to every one), but she schedules the caretaker classes I have to take. Every patient must have a caretaker (or a group of people who take turns being the caretaker).

The Hutch has done thousands of bone marrow transplants for all sorts of diseases. They have made an art of their routine. Every Monday, Tuesday, and Wednesday, they start a new group of patients, almost like a cohort. I don’t know if everyone who starts together gets to know most of the others who started about the same time as we eventually did.

3:00 Down to the lab to have Tom’s blood drawn. Since he already has a Hickman catheter, this is a painless procedure.

3:30 Off to the second floor for a chest x-ray. By now, we were running late. However, before we left, they tracked us down and told Tom he would need to get two units of blood on Wednesday. That complicated the day somewhat.

After a relatively short day of appointments, we went back to First Hill Apartments with our first Patient Itinerary, already amended. In the future, we would sometimes get two or three new itineraries each day. We were told to check our folder, which was at the reception desk on the sixth floor, frequently.

November 28, 2001. Wednesday. We were waiting for the First Hill van by 8 a.m. While we waited, the woman who practices on her harp in the mornings came down to the sitting room and started practicing. Two children came in the wait for the van to take them to the Hutch School (the Hutch School is a special accredited school for children who are either undergoing transplants, or children who have a family member who are undergoing transplant). They “helped” the harpist by plucking strings, but she didn’t mind. We spend a pleasant quarter hour listening to her play the harp.

9:00 a.m. Tom reported to the Fifth floor infusion room for two units of packed cells. That threw the whole day into a tizzy. Joann, our scheduler had to call everyone whom we were supposed to see, and tell them to come see us up on the fifth floor. Tom was given a small room with a sliding glass door so we could have some privacy for the appointments while he got his blood.

The first appointment was with Kerry McMillan, a nutritionist. She had Tom fill out a nutrition assessment, then she reviewed Tom’s nutritional status. Kerry told us that Tom would need more calories and especially more protein during the transplant process. To determine his calorie and protein needs, they would come up with an ideal body weight.

Next Winona Houge, the blue team social worker, came by to talk with us. She wanted to know about our home life, our education level, our jobs, our outlook on life and Tom’s illness, etc. She would then write up a social assessment in which she referred to Tom’s disease as MM (multiple myeloma). However, she did pick up on one important thing—we wanted a lot of information, far more than the average patient.

Tom wasn’t finished with his transfusion, so had to take the pole up with him to the very important intake meeting with Rainer Storb, one of the most senior transplant doctors on the staff.

Dr. Storb was a tall man, with bushy eyebrows. We wanted to know why Tom needed a bone marrow transplant with total body irradiation. He explained that a bone marrow graft was the only curative form. (There were two other alternatives: a bone marrow transplant with a conditioning routine that used Busulfan and cytoxan, and peripheral stem cell transplant using Busulfan and cytoxan.) Either one sounded better than the total body irradiation (TBI) and cytoxan.

We also discussed the donor situation. SCCA did not know that Tom was cytomegalovirus) CMV negative. Donor No. 2 was CMV positive. We were horrified. We already had read that CMV negative bone marrow recipients who received CMV positive bone marrow or stem cells from a donor have a 40% chance of getting CMV. In healthy people, CMV rarely causes many symptoms, but the virus becomes latent. In transplant patients, CMV can cause a variety of problems, including pneumonia that is 80-90% fatal.

We told Dr. Storb that we did not want a CMV positive donor. He said they could control it by giving gangcyclovir. With the problems Tom had had with his lungs already, we weren’t about to take any chances. We already knew that things could easily get out of control. On top of that, this donor’s wife apparently had hepatitis. Our horror increased. We felt pressured to accept this donor anyway. However, they had begun working up a third donor in case this one didn’t come through.

They had set Tom up to begin conditioning (the TBI and cytoxan chemotherapy) starting December 14-18. If all went as planned, he would have his transplant on December 20.

The total body irradiation, he told us, is usually done as an outpatient, over three days. It would be fractionated (divided into smaller doses) so it would be safer. (In the early days, they gave more radiation and they did it all at one time, with a much higher fatality rate.) Tom would be turned in the middle of each treatment so they would irradiate both sides. They go to the limit of what the body can take. Then he would enter the hospital and have two days of cytoxan chemotherapy. The treatments would kill his bone marrow, and should also kill the leukemia. He would have one day of rest, then have his transplant. The average hospital stay is 30 days. He briefly mentioned the side effects: mucositis, where the membranes of the mouth and GI tract slough off—painfully; nausea; vomiting; diarrhea. Usually day 12 is the peak time for mucositis. They would provide pain medications. During the third or fourth week, Tom’s absolute neutrophil count would start to rise. They would give Tom a sequence of prophylactic antibiotics, antivirals, and antifungals to prevent infections. In addition to the TBI, cytoxan, antibiotics, antivirals, and antifungals, Tom would receive drugs to prevent graft versus host disease: cyclosporen and methotrexate. He would start getting cyclosporine the day before the transplant, and methotrexate on days 1, 3, 6, and 11. The methotrexate would either cause or exacerbate the mucositis. About 50% of transplant patients need to continue taking cyclosporine more than six months for chronic GVHD. There is a sixty percent incidence of chronic GVHD, usually grade II, but sometimes grade III and IV (which we already knew could be fatal). GVHD could cause skin rash, nausea, upper abdominal pain, and more. They would do a biopsy to make the diagnosis, and treat it with methylprednisone.

Dr. Storb said that Tom would be on a new protocol, using sirolimus (rapamycin) to protect against GVHD. He mentioned that it had been used in solid organ transplants and tried on bone marrow/stem cell transplant patients at Dana Farber in Boston. We did not find out until later, after talking to several different people, that Tom would actually be number one in the new study.

On day 28, Tom would have a bone marrow aspiration or biopsy. A number of tests would be done to see whether the donor cells were engrafting, and the Phila. + chromosomes were gone. On Day 84, Tom would have a final workup here, and then receive a letter and instructions. They would expect him to come back one year later to have another workup.

He also gave us some statistics. There was a 40-50% chance “of being alive.” (For how long? My notes don’t say!) Paul Martin’s letter had said, 40% chance of %% Chemo, he told us, damages DNA, so there is an 8% chance that Tom could develop a second cancer, most likely a basal cell carcinoma of the skin or pharyngeal cancer. He said that Tom would always need to be vigilant.

He told us Dr. Paul Martin (whom we had seen in consultation) would be the next attending physician. We said nothing, but both of us were wary. He had been so negative when we came for the consultation.

November 29, 2001: Thursday.

December 4, 2001: When we checked his labs today, Tom had approximately 4% blasts in his blood today. Blasts mean that Tom is going out of remission. If he goes back into blast crisis, they will not perform a bone marrow transplant, and there is not good alternative for him. Dr. Storb stopped by while Tom was getting a transfusion, with Mark Matsui, the Physician’s Assistant (PA). Dr. Storb put Tom on hydroxyurea, which is a drug they used to use to treat CML before interferon. He believes this will help keep Tom in remission long enough to get to transplant.

December 5, 2001: Blasts down to .02 today.

December 6, 2001: Blasts up to .05.

December 7, 2001: Blasts at .03.

December 8, 2001: No blasts today. Yay!

December 9, 2001: Blasts at .01

December 10, 2001: Blasts at .01.

December 11, 2001: Blasts at .03. Tom still has the Anti-Lutheran antibody in his blood, according to Bruce Ballard, the nurse who is in charge of

December 12, 2001: Blasts at .02.

December 13, 2001: No blasts!

December 14, 2001: Blasts at .10

December 15, 2001: No blasts!

December 18, 2001: Tom’s iron level is 3530—more than 22 times normal. We are uncomfortable with this level, and feel Tom should avoid unnecessary transfusions. According to Dr. Martin, there is nothing to reduce it right now. He says that it will resolve after Tom’s transplant when he no longer needs transfusions. Dr. Martin wanted to know why we are worried about this. I told him that we had read articles in two magazines we had found in the waiting room.

December 22, 2001: Saturday. The first day of Tom’s total body irradiation (TBI). Our schedule is as always, very busy. The shuttles don’t run on Saturday, so we took a taxi over for Tom’s 9 am appointment. Once we got there, it was hurry up and wait, because they had a three year old who had to be sedated for total body irradiation. They had to wait for him to wake up before setting the room up for Tom. Tom did not get in until 10:30—a problem since he is supposed to get blood before coming back for his second appointment at 3:00 pm.

Of course it was heartbreaking to see a small child having to suffer this much. His father, in his early twenties, was very tender and held him for about two hours before leaving. A nurse was with them, accompanying them from Children’s Hospital. We had seen the boy at the SCCA; he always had a smile. His father said that his son said, “Am I sick again?” when told he had to go to the hospital. Of course he will be in the hospital over Christmas.

Beautiful, sunny day—the first on a weekend since we got here! Ironically, we won tickets for a free harbor cruise today. Of course we can’t use them. I called to see if they could give them to someone else.

Setting up for Tom took quite a while. They had made lung blocks to protect his lungs for the first three treatments. They attached them with Velcro to a thick Lucite panel. Tom had to lean on a bicycle seat for about 15 minutes for the front and another fifteen for the back. A Lucite panel diffuses the radiation to his body. We were told that the amount of radiation Tom will receive in the six treatments—1200 Centigray—is about the same as he would get near the center of a nuclear bomb blast. Certainly gives us pause. He took some Kytril for nausea. Luckily he didn't have any.

As soon as he was finished, we took another cab back to the SCCA, where they gave Tom only one unit of blood, in record time. No lunch, they hadn’t saved one for Tom. I heated some tomato soup for him in the microwave.

Then we took another cab back to the UW Hospital (the University is fondly known as U Dub here). This time, they were finished with Sebastian, so Tom went in right away. I sat outside, waiting, hearing huge clanks. I later discovered that the sounds came from the door to the radiation room, which is two feet thick.

Tom said it wasn’t painful, but his skin was fairly red. He was really tired, so we went back to the apartment. I started making dinner, but got a frantic call from the SCCA—the hospital had given us Tom’s file to bring back in the morning. The SCCA nurse was quite upset that we had the file. I had to interrupt making Tom’s dinner to return it.

December 23, 2001: Sunday. Day two of TBI. Another sunny day, which we are spending in the basement of the hospital. Tom is getting more radiation, perched on the bicycle seat. I sat and waited, wondering just what the long term effects of the radiation will be, hoping Tom will be alive long enough to worry about side effects.

December 24, 2001: Monday. The final day of Tom’s total body irradiation—Tom’s appointment was at 7 am—a killer for Tom (me, too). But we got there on time. After the first TBI of the day, we went up to the 8^th floor, one of the two transplant wards. Guess it was lucky we did, because Jocelyn, the nurse who gave us a quick tour of the floor, said, “We’ll just assign you to this floor.” We had asked that Tom have an extension on the bed to make it longer (his feet hung over the edge at Johns Hopkins, which made it very difficult and uncomfortable for him), but at SCCA we were told that they would not do that until he arrived and the nurses assessed him.

December 25, 2001: Christmas day. Tuesday. Today Tom was admitted to the University of Washington Hospital. We got up early—Tom was supposed to be there at 8 am. We managed to get there by 9 am—late as always. Turns out it didn’t matter much. His nurse, Susan, attempted to orient us. Tom’s room is very small, but they had put an extension on his bed!

Aimee Kohn, a new “fellow” (a doctor who is getting training in a specialty beyond residency), came in and took a very detailed medical history. She is very tiny, but is detail oriented and got it all written down without any mistakes (I read what she wrote later).

They brought Tom Christmas dinner, prime rib, green beans, baked potato, etc. He said it was pretty good, but the prime rib was very well done (no redness in the meat for patients on an “immunosuppressed” diet. Tom is on the special immunosuppressed diet because his absolute neutrophil count is already falling, thanks to the radiation.

Eventually Tom got his first dose of Cytoxan (the name says it all), a powerful chemotherapy agent. He tolerated it well.

The other wing was open, so we walked there and sat for a bit, too. Apparently it is usually not open in the evenings. Eventually Tom’s nurse, the first of several Susans, caught us walking there and told us that Tom is not allowed in that wing.

Tom’s blood pressure is higher than usual—now getting BP medication.

December 26, 2001: Tom’s second day of high dose chemotherapy. Unlike Chuck in the room next door, Tom did not seem to be too much affected by it. He enjoyed his dinner. Using the measured course that Tom received yesterday, we managed to walk about a mile through the halls.

Matthew, Tom’s nurse, is Canadian. He and three other nurses who were on the same transplant unit at a hospital in Vancouver left to come here because of issues with their employer, the Canadian government (not enough money, I think). Their old hospital is now very short on nurses.

December 27, 2001: Tom’s day of rest. Or so they called it. Tom began receiving rapamycin and cyclosporen, drugs to combat the dreaded graft versus host disease. GVHD is the scourge of bone marrow transplants, occurring when the donor’s cells attack the host’s own cells. It can happen anywhere in the body, but is particularly common in the skin, lungs, liver, and gut.

We walked, but Tom was a bit wobbly. Tom took a nap. When he got up, his feet were even more puffy and dry. The big thrill is when Tom can be unhooked from the pole holding all the IV equipment. Here, unlike Hopkins, they will unhook him for short periods of time to shower and walk. An even bigger thrill was to have the urinary catheter removed after three days. Hurray! He has been doing laps with it (most people won’t). Tom says he lost all his modesty at Johns Hopkins.

There is a small library and computer room on this floor. We are reading one of the books, Laura Landro’s Survivor, an account of her own bone marrow transplant here at the Hutch (now the SCCA) in the early 90’s. Her experience is not too dissimilar from the current practices, although the Hutch’s transplant unit was at Swedish Hospital, rather than the University of Washington Hospital. Back then, they actually let patients out on day passes. No more of that. Tom is not allowed off the floor, a very restricted area, unless he is going to get an x-ray on the second floor.

Getting Tom’s Type II diabetes under control is proving difficult. Tom’s control has been pretty good on two oral drugs, Glucophage and Amaryl. However, they would not allow Tom to take them during the transplant, so they attempt to control his blood sugars with insulin. Tom’s problem is not that he makes too little insulin, but that he is resistant to the insulin he does make. So they are giving him huge amounts of insulin to take care of what would otherwise be a small problem. To Tom’s disgust, Aimee Kohn, the resident, changed him to a diabetic diet—margarine and Equal only.

Tanya received her stem cell transplant tonight. We met Tanya and her husband Scott at the SCCA. Tanya is about 27, an architectural student at Miami University in Ohio. She now has AML, which she got because of treatment for another cancer two years ago. Scott, her husband, is a psychologist who works in the Counseling Center at Miami U. Phil Valvo took pictures of Tanya receiving her transplant. Scott, Phil, Joann, Tom, and I all sang happy birthday. Tanya’s stem cells came from her brother.

December 28, 2001: This is it, the big day. It is sunny and overcast. The view from Tom’s window is always pleasing. Tom took his meds, brushed his teeth, and took the oral study medicine. We walked down to x-ray, alone (at least for a few minutes). Walked more laps when we got back, saw Tanya and Scott. Tanya is now day 1.

Back in the room, it was grand central station. Emily came from physical therapy. She gave Tom a page of exercises to do that were similar to the ones from Hopkins. (Some were exactly the same.) Linda Mesaric, Chris’s mother, and an RN, stopped by to see how Tom was doing. Chris, who had his transplant several days ahead of Tom, is still nauseous. The Catholic chaplain stopped by and gave Tom communion. I am always concerned about how clean that is. They do wash their hands first, but. . . About 4 p.m., Stephen King, a Disciples of Christ minister, stopped by. We jokingly called him the “generic minister,” because he said he see everyone. We talked to Elsie and my nephew, Phil.

Tom’s chest x-ray showed “a touch of fluid,” according to one of his doctors. We are very worried about Tom’s lungs filling up with fluid. That was what caused him to end up on a ventilator at Johns Hopkins. That is why Tom is walking so much this time.

We waited impatiently all day for Tom’s bone marrow to arrive. Once a person’s bone marrow is destroyed by radiation and high dose chemotherapy, it does not come back. So we were a little worried. When we were still investigating the transplant, I asked Lisa Getzendaner, a nurse practioner who helps set up the HLA matching, “What happens if the donor changes his mind?”

“That rarely happens,” she told me. “We don’t start the conditioning regimen until we are sure the donor will come through.”

“And if the donor dies?’ I asked her.

“That’s happened twice,” she told me. “We harvested the marrow post mortem.”

Joann Valvo’s stem cells, which came from Germany, arrived about 8:30 p.m. We trooped to her room and sang “Happy Birthday,” which is a tradition here—many people consider this a “rebirth” because it gives them a chance to live. Her husband Phil took pictures with his digital camera. Her cells came via Copenhagen. The Hutch sends couriers to pick up the bone marrow or stem cells from the place where they are harvested from the donor. The marrow or stem cells have to arrive and be administered within 24 hours, or they have to be frozen, which destroys about one third of them.

At 10:25 p.m., a nurse we hadn’t seen before, came in and said, “Your marrows are here, but we are just waiting for compatibility from the blood bank.”

Finally, about 11 pm, the first bag was hung by Angela Yaworsky, another Canadian nurse. Today was supposed to be Day 0, but now it is considered Day 00 since the cells cannot get in before midnight. They are very fresh—harvested about 8:45 a.m. Eastern time Phil Valvo, Joann’s husband, and I both took pictures, then Phil and I sang Happy Birthday to Tom. I stayed over because I wanted to be with Tom as he got his transplant. Tom also got benedryl and Tylenol to forestall a reaction to the bone marrow, and lasix because he was being given so much fluid.

Dr. K has doubled Tom’s blood pressure medicine. His pressure continues to be somewhat high, apparently a consequence of the drugs he is taking.

December 29. 2001: Day 0. At 12:02, the nurse hung Cyclosporen, which will go in the same time as the bone marrow cells. Tom was asleep, but then woke up. He was nauseous and asked for Zofran. The nurse wanted to give him Ativan. It is very annoying when they feel they know better. Each patient is different, and we know Tom much better than she does. In the end we prevailed, and Tom got his Zofran.

In the end, Tom and I were up most of the night because Angela had to take vital signs between each of the five bags of bone marrow cells, then again fifteen minutes after she hung the bag. Tom received over 1.758 liters of bone marrow. We are so grateful to the unknown donor, a 38 year old man who was from somewhere on the East Coast. The process of taking the bone marrow out is pretty painful. Angela carefully made sure every drop got into Tom’s veins. Finally, at about 7 a.m., the final bag was empty, although Angela signed them off about 6:40 a.m. We went back to sleep, only to be woken up at 7:40 by yet another nurse named Susan.

About noon, a nurse came in already wearing gloves—latex. We asked her to take them off. She washed her hands, and then was going to empty Tom’s wastes before taking care of Tom. We were horrified. Because most of the patients here are neutropenic—have no immune systems—there is a very strict protocol—wash hands when you come in the room and before you leave the room. Wear gloves for most medical procedures, and change gloves after handling waste.

In the early days of transplants, patients were kept in special laminar airflow rooms in which the air was filtered, and the patients had no physical contact with other people. Eventually they discovered that it was unnecessary to keep transplant patients separate. Most infections are passed when your hand comes in contact with an infected surface, and you touch your eyes, nose, or mouth.

Dinner--Tom ate poorly. He had pain down his esophagus, and it hurt when he inhaled or swallowed. By 8:20 p.m., he was throwing up and needed some Zofran. At 8:45, he was in such severe pain he was willing to try some morphine. Fortunately they gave him fentanyl instead, which has less sedative effect on him, but works just as well. He had a miserable night with aches and pains all over. He had more fentanyl, which was insufficient, so they also gave him dilaudid. As if that were not enough, they lost his early morning labs and had to draw them again.

December 30, 2001: Day 1. Sunday. Tom’s first methotrexate (MTX) treatment. It is one-third the usual amount because he is on the rapamycin protocol. Tom needed oxygen. Daniel Martin, whose nametag said, Clinical Researcher (no one knew if that meant he was a physician or not), came in to see Tom. About 5 p.m., I took Tom down to x-ray a chest x-ray he was sufficiently unsteady that he needed a wheelchair. Before Tom got into the wheelchair, I wiped it down with a viruscide. Just in case.

Tom is already having trouble eating. He tried Boost, which has 325 calories and 14 grams of protein. We hope that he will not need to go onto TPN (Total Parental Nutrition—IV feedings) because they are primarily sugar water with vitamins and protein added. (TPN is frequently called, “Steak in a Bag.”) It looks like Mountain Dew or even, urine.

December 31, 2001: Day 2. Monday. Tom was in a lot of pain, so Angela gave him benedryl and dilaudid during the night and then again in the morning. Bad news—Tom found it very hard to wake up. Many narcotics and nausea drugs just put Tom to sleep.

Andrea Leisewicz, a red headed physical therapist dropped by. She worked with Tom on exercises, emphasizing that he should go slowly to build more muscle. Tom could barely stay awake long enough to do the exercises.

S, his nurse, argued with Tom whether he should have immodium for diarrhea. And whether he was even having diarrhea. Some of the nurses have strong ideas about certain medications and try to push them or withhold them, instead of listening to the patient. By now, we have a good idea of what works for Tom and what doesn’t with certain drugs. It is always irritating to have a nurse who has never seen Tom before argue.

I couldn’t help singing to Tom (Tune: Just A Spoonful of Sugar Makes the Medicine Go Down, from Mary Poppins):

“Just a spoonful of nursey makes the medicine go away, medicine go away, medicine go away,

Just a spoonful of nursey makes the medicine go away, in the most annoying way!”

About 6 p.m., they brought Tom platelets. To our horror, the platelets were not CMV (cytomegalovirus) negative—they are just leukoreduced. %%

Tom and I have never spend New Year’s Eve apart. This year was no exception. Tom took a nap, but woke up in time to watch the fireworks at the Space Needle. From his window, we can see the top of the space needle and the top of the fireworks—what an excellent view! Glennis, whose husband Chuck is in the room next to Tom, and who coincidentally moved in to the apartment next to us at the Pete Gross House, gave me a ride home. She stayed to watch the fireworks with Chuck. They are from Washington state. They also watched the fireworks on TV. Chuck has AML, which seems to be the most popular disease here.

January 1, 2002: Day 3. Met Dr. William Tse, the senior fellow who will work with Dr. Stirewalt, the attending physician this month. He seems very kind. When I had some questions about CMV negative vs. leukoreduced products, he offered to look up some research for me, and did so. Over and over, I have been told that leukoreduction (removing the white blood cells) is just as acceptable statistically as CMV negative blood products, that the risk of transmission of CMV is the same with either. Unfortunately the article on leukoreduction vs. CMV that Dr. Tse gave me stated that in a study done right here at the Hutch, they found that CMV was transmitted to none of the patients who received only CMV negative blood products, but it was transmitted to 2.4% of the patients who received leukoreduced blood products. Not very comforting.

Another dose of methotrexate today. MTX, as they call it, has a bad reputation—MTX causes horrible mucositis—an inflammation of all the mucous producing areas. Tom had it at Hopkins. It was bad enough that he went on TPN (intravenous feeding) and a morphine pump, something we hope to avoid here.

Tom has diarrhea. S, the same nurse as yesterday, argued again, and talked to the charge nurse about it. Eventually we saw Aimee Kohn, the resident, who said it was OK to have immodium. What a hassle! We also discussed that Tom is very logy from the pain meds, and that his arms are shaking involuntarily. They sometimes look like he has Parkinson’s disease. Dr. Kohn told us that today was her last day. She gave me some advice—be nice to the nurses, they are your lifeline.

Tom is still taking the oral medicine study drug four times a day. We are convinced that he is taking the placebo version. S said that there are two colors, pale yellow and darker yellow. We haven’t seen any to comparison bottles. If it is not the placebo, it is useless.

The view from Tom’s window is quite beautiful and everchanging. To the far left, we can sometimes see Mt. Rainier. To the near left is an old fashioned drawbridge with a tower at either end. Running in front is a canal and then part of a lake. Straight across are several nice houses. Above them is a fast road, and above them, hills with more houses. The Seattle Space Needle is behind these hills.

Today a boat with tall sails went by. We were able to watch the bridge open and close. Very exciting, and definitely better than the view of a wall at Johns Hopkins. Alas, there are rooms here that face walls also.

Tom received platelets today from a “matched donor.” They are hoping that Tom’s system won’t destroy these as fast. Platelets come in three types: pooled, with platelets from several donors, single donor, and matched single donor. Matched single donor platelets come from a person who is an HLA match for the patient. The blood bank goes through their records and calls people who are a match and asks them to come in and donate platelets. The platelets are removed from their blood and their blood returned to their system by a process known as apheresis.

Desperately Seeking Zofran. “I’m reeling with nausea,” Tom said. He also felt lightheaded.

Linda stopped by. Her son Chris is in poor condition although he looked better today. His kidney function is poor, his lungs are filling up with fluid, and he is having trouble with amphotericin b. (Sounds much like Tom’s slippery slope at Johns Hopkins.) He has so much fluid on board, that his final dose of methotrexate may still be in his system. The doctors are considering a “leukovorin rescue”—a treatment to reduce the amount of methotrexate in his system.

January 2, 2002: Day 4. Wednesday. Tom had a bit of “sunburn” at 5 a.m. Probably from the radiation. During rounds, the docs said that Tom should start to engraft between Days 18 and 21. At that point his mucositis should start to resolve. This morning he had a spasm in his arm, which caused him to spill oatmeal down the front of his shirt. He was pretty annoyed with his body. Later he had another spasm. His ears and the top of his head tingle—this may be a result of cyclosporine.

We are continuing to walk. Tom walks so slow that I sing, “Shuffle, shuffle, shuffle, shuffle off to Buffalo. . .” to him as we make the circuit.

His mouth is getting worse. He definitely has mucositis. Eating is impossible, except a thin mixture of gruel.

Gorgeous sunset. The view out of Tom’s window is always a pleasure—the slow moving canal, shadows on the water, ducks, rowing crews, kayakers, sail boats, and the sunset across the city.

At 6 p.m., his ears were burning again. His feet are aching. His nurse told us that another patient—we couldn’t figure out whom—is having a pulmonary embolism. At 6:50, Tom started to have a chill, and pains in his chest. His temperature went up to 37.2.

At 7:20 his lips started to swell and he lost his voice for about 20 minutes. He has mucositis on his lips, and they have turned inside out. The nurse brought him cold packs for his face. I got him warm blankets, which are very popular here. There are two ovens in which they put piles of cotton flannel blankets. After I covered him with warm blankets, Tom put the cold packs on his neck. “Schizophrenic,” he commented. Shortly after that, he got a nasty, deep cough. His mucositis is terrible. Dr. Tse was shocked to discover that Tom was not taking morphine for it.

We try to remember Brenda Blyweiss theme, “Cured in Seattle.”

While walking down the intensive care hall, I noticed that all of Lexie’s relatives were crowded around his bed. There had to be at least twenty people in his room.

January 3, 2002: Day 5. Thursday. Tom’s mucositis is even worse. Michele, from the oral care department, suggests keeping Tom’s pitcher of salt water cooled on ice since cold will reduce swelling of the blood vessels and decrease bleeding, using ice packs for 10 minutes on each affected area, and lanolin to soften his lips.

Tom’s cyclosporen level is quite high, so they held his dose for today.

Tom and I were doing laps. Lexie’s wife was back on the unit today, talking with the nurses. I gave her a hug, but I didn’t know what to say. Tom wanted me to ask her about Lexie, but I asked a nurse instead. He definitely died.

January 5, 2002: Day 7. Saturday. Tom’s mouth is much worse. He is in quite a bit of pain. The docs are amazed that he is still able to eat and swallow. Just eating takes forever because Tom is having a hard time swallowing. His goal is to stay of TPN (intravenous feeding) because it is entirely liquid. Of course, at this point all he can do is ingest liquids anyway. Today Tom drank two Boost, several whole milk fortified with protein powder, half and half (for the calories), cranberry juice, grape juice, pumpkin pie, a spoonful of peach. The Sue Billingsley, the dietician on call for the weekend, offered to get Tom whatever he wanted from the supermarket. She was already planning to go to get Pepsi for one of her chemo patients. The hospital only offers Coca-Cola. She was so kind. She was willing to help Tom in any way she could. She ordered banana flakes on his trays to help him with diarrhea. (He tried them in milk and almost gagged.) She looked familiar—turns out she was the employee of the month for December. She called after she got home to see if everything was all right. We talked about Tom and about her dogs, one of who is very sick. She actually gave me not only her pager, but also her home telephone number. She is an amazing person.

Tom took a nap and dreamed that he wasn’t, as he put it, an inmate. He was outside.

January 6, 2002: Day 8. Sunday. Dr. Linenberger’s last day. We will miss him. He was very conscientious, informative, and easy to work with.

Tom developed a fever today, about 100.8. Always a bad sign. They are culturing blood and urine, but have little expectation that they will find what is causing it. More antibiotics of course. Dr. Daniel Martin came in (grew up in Bethesda)—very thorough examination of Tom, discussed antibiotics—Tom has an allergy to imipenem, but could tolerate piperacillin, so he prescribed tazobactam. January 4, 2002: Day 6. Friday. Tom’s mouth is covered with white patches—the dreaded mucositis. He is nauseous most of the time, and his mouth is very painful. Still he eats, enough today to stave off the dreaded TPN another day. Is the fight worth it? It takes Tom at least two hours to eat at every meal. We can only get a minimal number of things completed.

Tom got his third dose of methotrexate today. We can expect his mouth to get worse, according to Michele, who is involved with the oral medicine study. She says the worst is Day 12, the day after the final dose of methotrexate.

Another empty room in intensive care today. Colleen, whom we did not know, has disappeared. I think she was on a ventilator. No one has said anything about her. An older man who was standing near her room yesterday was sitting on a bench wiping a tear from his eye. At the time, I didn’t understand the significance of it. I searched to see whether Colleen was back in another room—she was not. This suggests that she, like Lexie, died. One of the other caregivers said, “Maybe they discharged her.” It is hard to believe that she could be discharged—there is a lot of rehab needed after being on a ventilator. Perhaps she was moved to another ward, but I doubt it.

January 7, 2002: Day 9. Monday. Things are still quite difficult. Tom is mostly out of it, having rigors (terrible shivers). He had a couple of auditory hallucinations. I think it is related to the platelets he is getting. If it isn’t platelets, it is probably an infection. Always bad news when you have no ANC. Dr. Tse calls Tom, “Tom Toughman” (play on Tugman), because he held out against narcotics for so long. They really “snow” Tom, and he dislikes them.

Because of the fever, they cultured Tom’s blood, urine and yes, the rest, too.

January 8, 2002: Day 10.

January 9, 2002: Day 11.

January 10, 2002: Day 12. The morning started out well. I arrived about 8:15. Tom was up, didn’t feel too good, but said that his pain level was about 2/10. Way less than yesterday, which was typically about five all day. Tom was fairly alert, which is good. The nurse was going to give him Zofran for nausea, but he refused it. During rounds, they said again how well Tom was doing. His blood cultured negative on the 7^th and 8^th, so they are assuming that the antibiotics they gave him are working.

Tom didn’t use any painkiller all day. Dr. Tse, the senior fellow, calls him Tom “Toughman” and he really is. In the morning we managed to do one lap.

Tom was about to take his shower when the ID (Infectious disease) doctors came in. Surprise, horror, Tom definitely does have a blood infection, enterococcus. They speculate that his entire gut is sloughing off cells and bloody like his mouth, and that enterococcus got in his bloodstream that way. There was some discussion of which antibiotic to use, because Tom had a bad reaction to one of the antibiotics at Johns Hopkins. They stated that they believed that they could get this under control. However, from my previous research, I know that a blood infection is extremely serious, especially for someone like Tom who has absolutely no absolute neutrophils. The nurse today said that actually Tom does have some resources, to fight, though they are few. It will be at least a week until his counts begin to come up. That is a long time when you are unable to fight off any infections.

January 11, 2002: Day 13, Friday. I called to see how Tom did last night. I spoke to Pilar, his nurse. She told me that Tom only got four hours of sleep because he had lasix, a diuretic at 11 p.m. I was pretty ticked off. Tom desperately needs sleep, and they could have given him lasix yesterday afternoon. He got up, got dressed, and sat in the chair. He couldn’t stay awake, his head nodded to the side, and he fell back asleep. He couldn’t stay awake during rounds. Dr. Stirewalt, the attending physician, and Dr. Tse, the senior fellow talked to Tom, particularly about how much and what he was drinking.

More bad news—there are “white areas” in Tom’s lungs, which could be atelectasis, fluid, or possibly aspiration pneumonia.

January 12, 2002: Day 14. Saturday. Tom was up when I arrived. Rounds were just starting, and they started with Tom. No time to get dressed first. Usually Tom is dressed in comfortable street clothes and sitting in a chair. Today it was just underwear. As they briefly examined Tom, I looked over the daily counts and lab work. Still low white count (10) or absolute neutrophils (0). Tom’s counts won’t go up until the transplant starts to engraft. That takes longer with an actual bone marrow transplant, up to 21 days. That doesn’t seem long, but it is very long when you have no defenses against infection.

The good news is that they have not had a positive blood culture since the 9^th, Tom’s lungs don’t sound any worse, and that his labs—particularly his kidney labs, are looking pretty good.

Deborah, Tom’s nurse for the last three days is really efficient. She managed to get everything ready so he could take a shower (pretty involved—he has to be unhooked from several lines and then have his Hickman lines wrapped up) in just a couple of minutes. After the shower, Tom rested a bit, then we did two laps (2/10 of a mile). I rousted out Chuck, who is in the room next to Tom. He was nauseous, so he took his pan along just in case. Both of them looked awful, but they walked anyway. Tom had a piece of Kleenex pasted below his nose because it drips continually. I joked that he was wearing chador like Middle Eastern women. She said we should call him “Drippy.”

We saw Arthur, a big tall guy who, when we last saw him was strapping. He was in bed, and looked awful. Worse than Tom. We could hear Jo coughing in her room. We didn’t dare knock and say hi—she is still in isolation. It really bothers Phil, her husband, who has to wear a special suit, a mask with visor, and gloves. Deborah the nurse explained that when a patient has “uncontrolled secretions”—a cough or sneezing—that every part of the body must be covered, for the benefit of the visitor, but also so the person who goes in the room won’t carry the germs out to other patients.

Tom drank some tea and juice for lunch, then napped for most of the afternoon.

While he napped, I went to see how Chris was doing. He was supposed to be able to leave soon, but is believed to have an aspergillis lung infection (that’s what they thought Tom had while he was at Johns Hopkins). Now he will have to wait, and may have to have an operation to show that he does have aspergillis.

I also saw Scott, Tanya’s husband. She will get out next week if she can get used to oral cyclosporen. It makes her vomit. Scott was heading home to clean up their apartment.

I got back just as Tom was waking up. He sat in a chair, drank some juice and some root beer—he decided that drinking carbonated drinks was too painful. We did some of the physical therapy exercises; he practiced blowing into his “manly spirometer,” (which he hasn’t done for a week; his lung power is somewhat reduced) then went to bed.

His evening nurse, Maggie, came in about 8:15. Tom was still asleep. She woke him up to take pills. I left, after promising both Tom and Maggie that I would take a taxi.
I went downstairs to call a taxi. I had to wait for a phone. The man who used it before me had a cold, so I was loath to use it. Lucky for me, Susan came down and gave me a ride back to Pete Gross House.

January 13, 2002: Day 15, Sunday. Still no ANC (absolute neutrophils--the component of white cells most needed to fight off infections). Each day without his “counts going up,” Tom is in more danger of getting an infection. Pilar in the room next door appears to have a mold infection. She had a reaction to the drugs they are giving her. I wanted to be more helpful, but am always mindful that I could carry something to Tom.

Tom actually seemed better today. We walked down to x-ray on the second floor. Tom wore a mask. Masks are discouraged on the 8^th floor, but on the 8^th floor, everyone has to sign a piece of paper saying they do not have any respiratory symptoms. Down on the second floor, we were once chased by a man who was sneezing (around here, they call that "uncontrolled secretions"). After the x-ray walk, Tom did two laps—altogether, about a half a mile. Later in the day, he did another two laps—7/10 of a mile altogether. He also was more alert today.

During rounds, Dr. Stirewalt once again cautioned Tom against drinking too much (apparently he drank close to four liters yesterday). Tom, whose voice could barely be heard, tugged on Dr. S’s sleeve and said, “Doctor, do I have a drinking problem?” Everyone but Dr. S broke out in laughter, Dr. S said, “You do.” Then he too saw the humor and laughed. Tom complied today, drank only 12 ounces of water, but still had crackles in his lungs (a sign of too much fluid in the lungs). He needed more lasix.

Nothing has cultured from his blood since the ninth, and he has a normal temperature. Still no proof that that he doesn’t have an infection.

Karen, Tom’s nurse told a rather scary story today. Phil V. and I were talking in the hall. Jo, his wife is in isolation because she has “uncontained secretions.” Anyone who goes in to see her—nurses or family members—must put on a gown, gloves, and a mask with eye guard. Phil really hates this, especially the gloves.

Karen told us that a couple of years ago, when the facilities were at another hospital, a patient had a few symptoms of some sort of respiratory infection. It turned out to be RSV, which is common among children. In healthy people, RSV is similar to a cold. This patient gave RSV to staff members who then passed it on to other patients. All but two patients got RSV, and several died. Ever since, they are very picky about isolation.

January 14, 2002: Day 16. Monday. Still waiting for Tom’s white count to come up. His lungs sounded better to Dr. Stirewalt. Dr. Tse restricted him to about 1000 ccs (a liter). No positive blood cultures since January 9. Tom still has some crackles (indicating fluid) in his lungs. We put up a sign that said, “Say No to Crackles.” They were amused. Tom was tired, but he does seem better.

Busy day today. Michelle, in charge of the oral study Tom was on, dropped in to check his mouth. She felt his mucositis was much better. It still looks terrible, and his nose is still dripping all the time. She brought in a doctor from the drug company so he could see Tom’s terrible mucositis. He is still in pain. They ask patients to rate pain from 0 (no pain) to 10 (the worst pain you can imagine). Tom said that today his mouth was about a 3 (it was about 7 at its worst). He has a PCA, a pump which allows him to give himself doses of Fentanyl, a narcotic painkiller. “I could get my pain down to a one,” he remarked, “If I was willing to sacrifice my motor skills.”

Then the lay Catholic minister came in. We barely had exchanged greetings when Andrea, the physical therapist showed up. She made Tom do exercises and wouldn’t let him cheat by skipping numbers in counting. Then another lay minister, who brought communion. We walked three laps, Tom took a shower, and then it was lunchtime. Tom didn’t eat, but then it was time for a nap. Another exciting day. . . While Tom napped, I caught up on other people’s situations. Tanya left—we didn’t have a chance to say goodbye. But her room is empty. Fantastic! Chris has to have a thoracotomy—hole cut in his lung to confirm whether he has aspergillus pneumonia. If he does, there is a new unapproved drug he can get. Steve, who was walking yesterday, is doing worse, blood in his urine, and still trouble with his lungs. Jo is still in isolation. We can call her on the phone. I hope Tom doesn’t get any worse.

January 15, 2002: Day 17. Ten ANC. Probably just a blip, guess we’ll know tomorrow. Not a great day. Tom did not get enough sleep. Nonetheless he sat up until after 2 p.m. He took a nap part of the afternoon, then sat up again. This a.m., he was only able to walk two laps, he was nauseous from excessive mucous. We worked on getting the copy ready to send to Bob Lay, who is generously going to let us put Tom’s information on his webpage. He needs to walk again, but it will be very difficult because they have him hooked up to so much that he will have to push two poles.

Tom drank very little again today. His mouth was actually just as bad today as yesterday. So far it doesn’t seem to be healing. Now he is feeling some burning in his esophagus also. More diarrhea, and his nose is still dripping non-stop. Tom wants to call this “Fester,” because he has started to look like Uncle Fester on the Addams Family. His hair and beard were already short, so we didn’t cut them, but most of his beard has fallen out. There is a little just above where sideburns would be, and his mustache. His hair looks thinner in spots.

I went to a caregiver’s meeting—it was the usual crew, Phil, Robin (Chris’ wife), Susan, and me, plus a woman whose 28-year old daughter suffers from an orphan disease. I did not get it written down. Turns out the caregiver’s group is a social work student’s project.

It is after 8 pm, and still no opportunity for Tom to walk. Susan (Steve’s wife, not one of the nurses) is leaving late tonight. I will go with her when she goes. I usually pay some of the parking (cost is usually $3 but free when it is late). I should pay it all. She is kind enough to give me a ride back to Pete Gross House.

January 16, 2002 Day 18. Wednesday. Another really annoying day. No ANC at all. Yesterday was just a blip. Tom once again had trouble breathing. I guess the nurses don’t worry about his lungs, and let him sleep flat. He needed to go down to get an x-ray on the second floor. Usually we walk down alone. We enjoy being out from under the intensive scrutiny of the nurses and away from the floor. Today, they not only refused to let us go alone—they insisted on a “porter,” AND they wanted Tom to have a wheelchair along just in case. Then no lunch entree on his tray. Lucky Tom couldn’t eat it anyway. Then they hung blood, which makes it very difficult to walk, which Tom absolutely must do.

Now he has chills and has a fever. Neutropenic too long. He’s taking a nap (again). As I have mentioned before, fevers are bad because they usually are indicative of some sort of infection. They are culturing Tom’s blood again to see what they can find.

Chris was supposed to have a thoracotomy today, to see whether he has aspergillis. Robin’s description was pretty gory. Steve had a lavage done on his lungs. Jo was sprung from solitary—isolation that is. Phil was very pleased.

January 17, 2002: Day 19. Thursday. Susan #3, Tom’s night nurse, called me at 5 a.m. to tell me that Tom was having trouble breathing, had more crackles in his lungs, was put on oxygen and had 40 mgs. of lasix. He had not slept well. Susan gave us his input and output (I’s and O’s). He actually took in less fluid than he put out. So his lungs should not be so wet (have so much fluid). I arrived about six a.m. Tom was sleeping, and stayed asleep most of the time until 8 a.m.

Susan brought a copy of his labs. No sign of another infection in the cultures they did. Also, not much sign of his counts coming up. His ANC was 10 again today. He is still at very high risk of infection.

During rounds, Dr. Stirewalt said he wasn’t worried yet about Tom’s counts, that perhaps he needs a day of rest (and another chest x-ray). He says that Tom has been doing 120% and may just be tired out. I am not so certain. It is now 12:15 p.m. and he is back in bed napping, with the back propped up high so his lungs can be as upright as possible.

About 1 p.m., Tom was sitting in a chair and felt very dizzy. Chad, the nurse who was here, put the oxygen back on.

It is late afternoon. Tom is having rigors (severe shaking chills) again. His fever is 38.9. He feels really hot. I am quite worried that he has an infection even though so far nothing is culturing. He just isn’t right, and he isn’t getting enough sleep. He appears to be asleep now, at least he is breathing heavily. I have put his bed up very high. Without oxygen, his oxygen level it 89; it should be at least 90. Sean, who has been his nurse twice before also thought Tom didn’t seem like himself.

With some Tylenol and Benedryl, he felt better. He listened to CDs for a little while before falling asleep. Now he is propped up high in the bed with oxygen. I am spending the night. This is too similar to what happened at Hopkins. I am very worried.

Pacita, a tiny sweet Phillipino woman in the room next to Tom, has been moved to intensive care and appears to be on a ventilator. Her son says she has Cytomegalovirus (CMV) in the lungs. She was apparently CMV negative, and her sister, who was her donor, was CMV positive. An article I read said that about 40 percent of the time, a negative patient becomes positive if the donor is positive.

January 18, 2002: Day 20. Friday. No ANC. Again. Tom is still spiking fevers, so they sent him for a chest x-ray, a chest CT scan, and sinus CT scan. Tom is feeling week and having more trouble breathing. He was on oxygen overnight, and had to have oxygen and go in a wheelchair for his scans and x-ray.

About mid-afternoon, Tom was resting, and I was standing in the hall talking to Phil Valvo. I saw Dr. Stirewalt, the attending physician, Dr. Tse, the senior fellow, and Tom’s nurse from the day before, Sean, sailing down the hall. They were headed to Tom’s room. I followed them in. They never show up together in the afternoon unless there is trouble, and sure enough, that was the case.

Tom’s CT scan showed “diffuse infiltrates” in the top half of his lungs. These had not been there in the last CT chest scan in December. Dr. Stirewalt explained it looked unlikely that Tom had a fungal infection (good news). However, they couldn’t tell whether Tom had an infectious process or a non-infectious process going. He explained that if Tom did not have an infection, it was likely to be one of three things—ideopathic pneumonia syndrome (IPS), hemorrhage, and/or fluid overload. They said that there was about a fifty percent chance it was IPS, and if so, the treatment is heavy doses of steroids. Alternatively, it could be an infection. They recommended Tom undergo a bronchoscopy with lavage to see if they could find an infection.

In the meantime, Tom is already on a lot antibiotics. They added an antifungal (the terribly expensive abelcet, which he had at Johns Hopkins). Tom agreed to the bronchoscopy.

Bad day all around: Joann Valvo and Chuck Devere both have GVHD of the gut. Symptoms are nausea, vomiting, and diarrhea. Jo’s was a 5/6 HLA match. The fewer HLA matches, the higher the risk of GVHD. This is considered acute GVHD because it is happening so early. Jo also has GVHD on her skin. Treatment is steroids. Sweet Pacita is extremely ill. I saw her son standing in the door of her ICU room, and he told me that she was bleeding in her lungs, and they couldn’t stop it. He encouraged me to go in. I went in and took her very cold hand, and told her who I was, and how we loved her. She was on a ventilator, sedated, and didn’t respond. There was blood on the gauze around her mouth. Her family is here, probably about 35 people. Just three days ago, we talked. She told me how bad she was feeling. Of course I couldn’t help except to listen.

January 19, 2002: Day 21. Saturday. ANC is .02, which means that there are 20 absolute neutrophils in the blood sample they looked at. In effect, Tom has no white blood cells to speak of, and his bone marrow graft has not taken.

But that is not the main news of the day. At about 6 a.m., I spoke to Barbara, his night nurse. She was playing catch up all night, trying to get meds, blood, and platelets into Tom. He was way behind when she got him at 7 p.m., and she told me that over yesterday, Tom had actually missed 5 different scheduled meds. On top of all that, Tom got almost no sleep—about an hour and a half before I left at 10:30 p.m., and then maybe an hour all night. He was extremely uncomfortable and having trouble breathing.

When I arrived, he was slumped in a chair, had a “rebreathing” mask on, and was supposedly getting 15 liters of oxygen (the most he ever got before was 10, except in emergencies). When I left last night, he was getting 5 liters. I actually found out later that he was on 100% oxygen (I don’t know what that means), but it is the maximum amount.

Shortly thereafter, he decided to move to his bed to try to take a nap. He laid down on the bed, and asked me to call the nurse because he was having a pain in his chest that was first sharp and then rippled across.

The nurse conferred with the Physician’s Assistant who was on call, who said to do an EKG. The PA, Diana Keyes, was, according to the nurse, “impressed with Tom’s EKG.” It was obvious that she was not favorably impressed. She came in and asked Tom lots of questions about the pain, how he was feeling, his breathing, etc. The nurse quickly took some blood to see if Tom had the markers for a heart attack, which they called MI—myocardial infarction.

Wendy, the pulmonary fellow, a rather no nonsense woman, came in about that time expecting to do a bronchoscopy. When she checked how much oxygen Tom was on, she d/c’d (the slang here for discontinued) that, and took charge.

In the end, Tom did not have a heart attack, and it appears that his heart is pretty close to where it was in December. However, the incident scared everyone, including us, and landed him in the intensive care unit. Good news—bigger room. Bad news, he needs to be in intensive care, the view isn’t as good, and the bed is positioned so Tom cannot see out the window.

Tom had a very difficult morning. He was having so much trouble breathing that he had to use his auxiliary stomach muscles. I was very worried—this happened for several days before Tom went on the ventilator at Johns Hopkins.

By about 2 p.m., however, Tom was down to fifty percent oxygen and breathing more comfortably. The ICU bed is very specialized, and can actually go to a sitting position. Tom was able to sit up which made it easier to breath. He is not allowed to get out of bed and sit in a chair. Dr. Stirewalt came in and discussed what he thought Tom should do until they could perform a bronchoscopy—something both the infectious diseases and pulmonary doctors really want. He said there was a fifty percent chance that Tom had the IPS, and if he did, he really needed to start on the prednisone right away. He indicated that this is a very serious problem, but that in some cases prednisone works. However, if Tom actually has an infection, prednisone could make treating it more difficult. Prednisone can also mask an infection.

We had an uncomfortable discussion where Dr. Stirewalt asked Tom whether he wanted to go on a ventilator if it became necessary. Tom said, “Do whatever you have to do to keep me alive unless I become a vegetable.” He also let Dr. Stirewalt know that he did not want a lot of sedatives.

A further worrisome thing—Dr. Stirewalt said (not in front of Tom) that only about five percent of transplant patients who go on a ventilator get off and are able to leave the hospital. Susan Shirley told me that Dr. Stirewalt said he had actually only seen two people survive who had been on a ventilator as long as her husband Steve (85 hours).

After that conversation, Tom had the pleasure of having viral cultures taken via swabs from his throat and nose. The throat swabs made him gag and cough, the nasal swabs went six inches in through his nose to his throat. It was quite unpleasant. Later that evening, the night nurse said that the lab wasn’t happy with the medium they were in, and the cultures would have to be done again.

Tom’s mucositis is finally starting to abate. Anyone who knows Tom well, will not believe this: tonight he ate the most he had in a long time—1/3 of snow pea, a half inch cube of canned peach, about 4 ounces of chicken noodle soup, and four ounces of cranberry juice.

Pacita’s family, about 40 people, has been keeping watch at her bedside. Sometime after 6 p.m., Tom said, “Did you hear that noise?” I had not heard anything, but Tom’s hearing is keener than mine. Tom described it as wailing. By 8 p.m., her family had gone. We were both saddened. Pacita is the fifth person on our floor to die since Tom arrived on Christmas day.

January 20, 2002: Day 22. Sunday. No neutrophils to speak of (20). Essentially, Tom’s donor marrow is showing no signs of engrafting. They will do a bone marrow on Thursday to see what is going on.

Tom seems much better today. He is not using his auxiliary muscles to breathe, he is on only 6 liters of oxygen with a nasal canula, and he is doing much better than Dr. Stirewalt expected. It looks like he is responding to the steroids. He has not had a fever in about 36 hours.

However, I know better than to be overly optimistic. He had good days at Hopkins, too. As Dr. Stirewalt said to Tom, “You have a long way to go.”

Later in the day, Tom’s nurse beckoned to me. “Let me show you something,” she said, logging in to the computer in Tom’s room. “Look at his counts!” She was genuinely excited. “They’ve started to come up.” Because Tom is now in intensive care, they are taking labs twice a day. Tom’s absolute neutrophil count had jumped to 70. We were ecstatic. At least they are starting to go up.

Tom spent the day peeing. His liquid input, which includes not only what he drinks, but all the fluids he gets intravenously (a copious amount), was two liters positive. They were desperate to get all the extra fluids off him, so it would not end up in his lungs. They gave him lasix and alternated it with another drug. I spent the night to make sure he was able to get some sleep. He was able to get about 6 hours. He still has a huge sleep deficit. Two nights ago, he got only about one hour of sleep. There is no way his body can mend without more sleep. Of course, we do not want his lungs to fill up, either.

January 21, 2002: Monday. Day 23. Martin Luther King day. ANC was up to 140 this morning! Tom was much better today. He was able to go off oxygen for about two hours. The pulmonary team came in and performed a bronchoscopy to see whether he has an infection or some sort of inflammatory reaction. Afterward, during rounds, Dr. Stirewalt said that Tom had hemorrhagic alveolitis. Apparently his alveoles bled, most likely as part of the idiopathic pulmonary syndrome. Dr. Stirewalt said that in about 50% of cases, the prednisone clears up the problem and the patient survives.

Chad, Tom’s day nurse also raised the issue of intubation (going on a ventilator)—he said just don’t do it. Avoid it at all costs—transplant patients don’t come off ventilators. Serious conversations, and we don’t like the odds. At this point, Tom is doing well, but it will be a matter of time. The hope is that he can be weaned from the steroids without a recurrence of hemorrhage.

He is in a very precarious position, and any setback could push him over the cliff. It was fortunate that they were trying to keep his platelets above 50. Otherwise, his hemorrhage could have been much more serious.

In the evening, he had Ken, the same nurse as last night. Despite the fact that Ken had done a great job last night getting fluid off him, giving him all the drugs he needed, and allowing him to get some sleep, I was nervous about coming back to the Pete Gross House, but I needed more sleep and clean clothes. Susan Shirley gave Phil Valvo and me a ride back. She had the same experience that I had—the regular oncology nurses are not always able to keep up with all the medications that patients like Tom or her husband Steve need. It takes a very delicate balance to get all the meds in without overhydrating (giving too much fluid), get them in on time, in a way that they don’t fight with each other.

Linda, Chris Mesaric’s mother, stopped by to see how Tom was doing. She had heard he was in intensive care. Chris is about to get out of the hospital! He will be going back to Pete Gross House. He and his wife Robin plan to continue taking care of their two children. Looks like Joanne and Chuck will be going home this week. Almost everyone had peripheral stem cell transplants, which allow the transplanted cells to engraft faster.

January 22, 2002: Tuesday. Day 24. ANC down again, back to 70. Very discouraging. Finally during rounds today, we got a more detailed explanation of what was going on with Tom’s lungs. He has idiopathic pneumonia syndrome. His alveoli hemorrhaged, probably over a period of time. Wendy Norris, the pulmonary fellow, says that somewhere between 60 and 75% of his lungs are white on the x-ray and CT scans. When she performed the bronchoscopy, each time she put fluid in Tom’s lungs, more blood came out. The mortality rate for this pneumonia is between 50 and 70 percent, and is higher when it occurs in the first month after transplant.

There are two possible outcomes: 1) Tom does well on the steroids, they are able to wean him off of them, and there are no more hemorrhages, so he survives. 2) Tom does well on the steroids, but when they wean him off, he starts hemorrhaging again, and does not survive. So far he is doing well, but they are keeping him on an extremely high dose of steroids.

They have decided to take Tom off of rapamycin, one of the drugs he is getting to combat potential GVHD. Tom shows no sign of GVHD at all, but he is also not showing much sign of engraftment, either. Dr. Stirewalt claims that he is still in the period where engraftment could occur, but they will do a bone marrow biopsy tomorrow to see what is going on there.

Tom ate two bowls of mushroom soup today, along with orange juice, milk, and some Gatorade.

Chuck DeVere, who is in the room next to Tom, went home today—home being the Pete Gross House. They are in the one bedroom apartment next to ours at Pete Gross. Jo is disturbed but philosophical about the effect steroids are having—her legs are swelling and her face is a bit rounder. Otherwise, she seems to be doing fine.

Rode back to Pete Gross House with Susan Shirley again. After, that is, a kind stranger changed a tire on her rental car. There was a nail stuck right in it—presumably from the construction near Pete Gross. (Like everyone else here, he had a story, too. His wife has been here since January 3^rd, with pancreatitis. She was on a ventilator more than three weeks. He works for a railroad, can only be here part of the time. He is from the Eastern side of the mountains, and had to drive over the Snoqualmie Pass (was snowing last night). He had all his tools with him, a heavy-duty jack, and even a jump suit, expecting to have to put chains on his truck to get over the pass. He looked like Wilford Brimley, the actor. Just a few days ago, his wife got off the ventilator. He was taking boxes of donuts for the nurses. Very kind hearted and sweet, would not accept any money for what he did.)

January 23, 2002: Day 25. Wednesday. ANC up a little: 180. Walked 286 feet. Hopefully this is the start of a trend. Based on this, Dr. Stirewalt put off Tom’s bone marrow biopsy until tomorrow. He says Tom is doing as well as can be expected, considering his condition. He encouraged Tom to walk, exercise, and use his spirometer. They are very pleased because Tom is finally urinating enough to lose some extra fluid.

That’s good, but unfortunately he doesn’t sleep much because of it. Today he has an unsympathetic nurse who said, “He shouldn’t sleep during the day. He should sleep at night.”

I totally agree! However, I know from past experience that keeping him from sleeping during the day just results in his getting more and more sleep deprived. It is very rare that a nurse’s priorities include sleep for a patient. By the end of the day, I hoped I would never see this nurse again.

He has blurry vision so now will have an eye appointment at the opthalmology7 clinic downstairs. Because Tom is still neutropenic—ANC less then 500—they stuck us in a hall to wait. Eventually he saw Dr. Broom, who had seen him for his pre-transplant evaluation. Tom’s eyes, like his mouth and skin, are very dry and have lines (like wrinkles) on the corneas. In addition, the high doses of steroids he is taking can make the shape of his eye change so his glasses don’t work right. This should all be temporary, but it is highly ironic that we worked hard to get back to room 8210 for its view, and Tom can’t make it out. His corrected vision with glasses was about 20/30; now it is 20/80.

Shower when we got back—this is a major energy drain for Tom. But it was his first real shower since going into intensive care on Saturday, and he really enjoyed it. The nurse made him promise to sit, but as soon as the door was closed, he stood up.

In the meantime, his air mattress had arrived. The nurse had put it on upside down, so the hard edges underneath would have been next to Tom. I showed her, and she argued with me, but eventually helped switch it over.

Susan Shirley, whose husband Steve is in the room next to Tom, gave me a ride home. We stopped at the drugstore—both of us needed bottles of Biotene, a special mouthwash for people suffering from dry mouth. I also needed to get Tom some hot water bottles (our low tech solution to shoulder muscle and hip pain). We actually enjoyed being someplace other than the hospital. Steve, whose story is chronicled on Susan’s web page, has had a very rocky time. He is 11 days ahead of Tom in the process, and was already having problems when Tom arrived at the hospital on December 25^th.

After I got back to the apartment, I read about post-transplant lung problems in one of the medical books about transplants. I found the exact description of

January 24, 2002: Day 26. Thursday. ANC=190. Climbing slowly. Very slowly. Tom didn’t get much sleep last night. He switched back to oxycodone as painkiller. Sandy called. Aunt Betty (who has lung cancer and emphysema) is in the hospital with pneumonia. Sandy has been taking care of her since December. Ordinarily I would be able to help her, but can’t since I am out here with Tom. We were still talking when the docs came in for rounds; I had to hang up rather abruptly.

Today, they said they were lowering the dose of steroids. They'll perform a bone marrow biopsy about 3:00 p.m. Tom asked about the condition of his alveoli—would they recover? If he had a lot of inflammation, it could scar his lungs, Dr. Stirewalt told him. But he could recover with no residual problems. “You are doing better than we expected, Tom,” he concluded.

Almost as soon as they left, Andrea, the physical therapist came in and made Tom do 20 reps of his arm and leg exercises. This is really important now because the steroids waste muscles. Then Tom ate a bowl of Frosted Flakes and milk. Then we did an entire lap (1/10^th) of a mile, more than double yesterday’s walk.

Then it was time for a nap. I chased everyone I could away from his room. Bruce, the platelet nurse, stopped by, and so did the infectious diseases team. They aren’t sure Tom doesn’t have any infections, but they haven’t cultured any (good news!). Once his ANC goes over 500, the infectious diseases doctors will start backing off on the antibiotics and other anti’s (currently he is taking cipro, ablecet, vancomycin, nystatin, and valacyclovir). “Have you had a flu shot?” one of them asked. I said that both Tom and I had. She cautioned me about getting too close to other families, since they could be symptomless and still be getting sick. Alas, that is true of anyone who comes in contact with Tom and the other transplant patients. Flu is now going around in Seattle, and they don’t know yet whether it is covered by the shot this year.

For now, Tom’s recovery is a waiting game. Waiting for the new marrow to engraft, waiting for his ANC to come up, waiting to see whether his lungs will recover from the inflammation that caused the diffuse alveolar hemorrhage. Waiting to see what results come back from the “mixed chimerism” blood test—a test which shows whether Tom’s cell lines or his donor’s cell lines are predominating.

Tom did another lap and a half, ate some mushroom soup and Boost. He still has a lot of pain in his esophagus, so still doesn’t eat solid food.

January 25, 2002: Day 27. Friday. ANC=240. At least it seems to be going up, however slowly. Tom is in slow motion today. It took an hour and half for him to take his morning pills. He can’t seem to keep his mind on what he should be doing. He ignores me when I ask him questions. He had to sit several times to make it through two laps.

Then it was time for a shower—very slow and very exhausting for Tom. Finally, about 1:00 p.m. he could finally get to sleep—now I discover that he has an ultrasound at 2:00.

The ultrasound showed that Tom has “sludge” in his gall bladder, along with a small stone. They will give him a relatively benign drug to get the gall bladder moving. The TPN (intravenous feedings) and having no fat going through his stomach probably caused the sludge.

January 26, 2002: Day 28. Saturday. Good news and bad news. The good news is that Tom’s ANC jumped to 710 today. That is evidence that the donor marrow has engrafted (although, Dr. Tse told me, there are occasional late graft rejections). Also, they have preliminary results on Tom’s bone marrow biopsy. There are not blasts in the bone marrow. Tom’s lungs looked better on today’s chest CT scan than last weeks.

The bad news is that Tom is really out of it. He has a hard time paying attention and can’t answer most questions. During the afternoon, he was able to get out of bed, sit in a chair, look out the window while it was snowing. He ate some mushroom soup, cranberry juice, and orange juice. The nurse seemed to think that it was his last burst of energy before the end.

January 27, 2002: Day 29. Sunday. ANC over 2000! Tom has definitely engrafted. But he is too sick to know it. Tom had a horrible night. He was unable to get comfortable the entire night. He probably slept only one hour. Tom’s liver is not functioning well. His BUN and creatine are higher. His LDH (lactase dehydrogenase—which measures in part how many red blood cells are destroyed) was around 1200 yesterday, was 2358 in the morning, and over 3000 in the evening. His liver function tests are very bad. They are not sure whether the problems are caused by VOD (veno-occlusive disease), graft versus host disease, or some other issue. Tom is too weak to do a liver biopsy. His condition is deteriorating rapidly. His fingers and toes are bluish, and he has mottling over most of his skin. While he is not exactly unconscious, he is not always clear about what is going on. At one point, he could not remember my name.

January 28, 2002: Day 30. Monday. Tom is even more unstable than yesterday. He is bleeding somewhere in the GI tract, bleeding somewhere in the urinary tract, his breathing is rapid and shallow, much worse than yesterday. His LDH is 5334. His bilirubin (liver function) is down; his kidney function is slightly worse. Today he will get 2 units of blood and 4 units of plasma. He will be moved to an intensive care unit later today. Tom’s prognosis is poor. It appears that at least two, and possibly three of his major organs are failing. The nurses can’t help themselves, they are sure he is dying and wanted to make sure I knew it, unfortunately they said so in front of Tom. One nurse actually said it didn’t matter whether he went into the ICU or not, the end result would be the same. Now it is a waiting game to see first of all, what is wrong, whether they can fix it, and whether Tom can hold out that long. If he has to go on a ventilator here, with multisystem organ failure, his chances of surviving are less than 2 percent. Seeing Tom this way again, and worse than last time, is breaking my heart.

We went down stairs for chest and abdomen scans, Tom on a gurney with two poles, one with blood, the other will all his other drugs and TPN. Tom was pretty much out of it. Dr. Tse accompanied us down. I was amazed. Everyone here really does try very hard to help Tom.

Later. As the day enfolded, the situation just got worse and worse. About 1:00, Dr. Stirewalt told me Tom was breathing about 60 times a minute—very dangerous. Also, Tom could not keep this up for long—maybe only half an hour or so. The time had come to make a very difficult decision—go on a ventilator or not? The statistics here suggest that almost no one actually makes it off the ventilator alive. Dr. Stirewalt could only remember two, one of whom is Steve Shirley, Susan’s husband. Steve is still recovering.

Tom and I discussed it last night. Then he said he was tired (of fighting). But in the past, he always made it clear he wanted every measure taken to keep him alive. I asked Tom, “Are you willing to go on the ventilator?” He squeezed my hand, which I took to be “Yes.”

“We will do everything we can for him, full court press,” Dr. Stirewalt said.

Tom was intubated about 1:30 p.m. Within a short time, his breathing was slow and steady. He actually looked peaceful for the first time in days. I was unhappy about the amount of sedative they are using—Tom is unresponsive when I speak to him. However, as events unfolded it was clear to me that Tom needed the rest desperately.

To recap, the day began with the information that Tom was bleeding in the gut based on his stool. This was confirmed by the fact that his hematocrit dropped from 29 to 18 overnight. With the exception of his hepatic (liver) functions, Tom’s other tests were sky high. Example: Myoglobin, which measures destruction of muscle, was 67660 at 4 p.m., down from 90,000 at noon. Doctors piled into Tom’s new room, an ICU room. Then Dr. McDonald, a Graft Versus Host Disease and gut expert came in and after examining Tom, said that there was evidence that Tom had GVH: high volume of stool, intestine is full of fluid, serum albumin level. GVH in the gastrointestinal system can harm or, if serious enough, destroy the lining of the gut. All the other wacky numbers, he speculated, are from a major infection that has not been picked up on the almost daily blood cultures they do on Tom.

Then came the news that Tom had had a heart attack, most likely because of low blood flow to the heart. Aspirin, the treatment of choice can’t be used because Tom’s clotting factors are low (thus the bleeding in the gut). Tom is at risk for another heart attack. However, the cardiologist said, Tom could live with the damage to his heart, if he recovers from whatever his problem is. They don’t know when he had the heart attack, but it was before noon today.

Then the surgeons came in, to see whether Tom should have exploratory surgery. No, it wasn’t indicated and it was too risky.

A cadre of nephrologists (kidney doctors) trooped in, with the news that Tom’s kidneys had shut down. He will need dialysis, most likely by tomorrow. They tried to reassure me that the kidneys should be able to recover, if the underlying process that is causing them to shut down is corrected.

Throughout the day, his doctors came in, over and over, just to check in on Tom and let me know what they were doing and thinking. Late in the afternoon Dr. Stirewalt came in and mentioned the dreaded words, DIC, disseminated intravascular coagulation (a disorder of platelets and clotting factors, which allows too much bleeding, which uses up all the clotting factors). In my research on blood infections, DIC was an ominous sign. Dr. Stirewalt was not sure Tom had DIC, but Tom has some features of it.

In the meantime, Tom is still bleeding somewhere. They are giving him blood and plasma, so far two units of blood, four of plasma. They are hoping that the plasma will provide the clotting factor that his body is not making.

The odds against Tom recovering continue to rise. From what the doctors are saying, the likelihood is extremely slim—maybe one or two percent. I just hope his body can hold out until they can figure out what is going on and can treat it.

January 29, 2002: Day 31. Tuesday. Early AM: Tom is still alive. He is on much less oxygen, but most of his lab values are worse today than yesterday, including the very critical BUN, creatinine, and bilirubin. In addition, his kidneys are clogged with myoglobin. To clear them, he needs a lot of fluids, but his heart can’t handle them.

During rounds, Dr. Stirewalt said last night, he only gave Tom a 50% chance of making it through the night, as did Dr. McDonald, the GVHD specialist. Nonetheless, he was encouraged this morning that Tom’s oxygen rate was only 35% instead of 100%, and that his hematocrit seemed to be holding up, suggesting that the bleeding had slowed. He put out some urine, but will still need to be put on dialysis today. In addition, they would like to do a colonoscopy to check for GVHD, if Tom is strong enough. His bilirubin is better. The cardiologist came by and said his heart was good today. At least there is some good news. But it is clear that something catastrophic happened to Tom this week—most likely an infection? A drug reaction? No one really knows. In the meantime, if he has GVHD, he will need to be put on another immunosuppressant drug to combat the GVHD, which could keep his body from fighting infection.

Late this morning, they turned Tom onto his left side. He started having trouble breathing, and “desatted”—the percentage of oxygen in his blood decreased to about 70%, (they like it to be above 90% all the time, and it had been in the high 90’s for several hours). Now he is back on 100% oxygen. Not a good sign.

1:30 p.m. The renal fellow just came in to talk about dialysis—they want to put it off until tomorrow if possible because it could cause a heart attack (Tom’s adoptive father died of a heart attack during dialysis.).

About 3:45, the pulmonary fellow came to put an arterial line in Tom’s arm so they can monitor his blood gases more easily. After six tries, she gave up. I was rather angry that she was unable to get the line in. I wanted her to stop and get someone else after the third failed attempt.

As I write this, Dr. McDonald, the GVH expert is about to take a couple biopsies to check for GVHD. Tom is still hanging in. I haven’t seen the evening labs. I am wearing Tom’s lucky shirt, “Survival of the Biggest.”

Tom’s fingers and toes are still blue, and getting worse. Charles, his night nurse tonight, says the circulation is greatly reduced, and this is a feature of septic shock. Unless they can cure the cause of it (an infection), the circulation won’t come back.

Charles said, “We can’t perform miracles.”

I said, “It looks like Tom needs a miracle now.”

Charles replied, “Believe me, Ma’am, he does.”

If you are interested in the stories of other transplant patients, you may want to log onto:

http://joann.hypermart.net

http://home.att.net/~ski2X5/wsb/html/view.cgi-home.html-.html

Received from Caroline Mack on 14 Jan 2002:

Tom is hanging in so far. This is day 16. His transplant has not started

to engraft yet, but hopefully will soon. He is at great risk of infection

until it does. He does have a blood infection and some fluid on his lungs.