Contents

1. The Diagnosis
2. Chemotherapy
3. How Gretchen, Matthew and Hannah dealt with my diagnosis
4. Leaving the Hospital and More Chemotherapy
5. Recovery
6. Choosing a BMT center
7. Current Status

In November, 2001 I did the Team in Training program with the Leukemia and Lymphoma Society and rode in a century (100 mile bike ride) at the El Tour de Tucson. I have written about that experience. This year (2003), I am doing another ride with the Team in Training in Moab, Utah.

This is an account of my battle with leukemia. This was written in late 1996 and early 1997 and some of the events took place more than four years previously, I hope that with the help of my wife Gretchen I have remembered things accurately.

In the beginning of 1992 I was working as a computer researcher with a small company here in Austin. I was also pursuing a Ph.D. in computer science at the University of Texas at Austin. Gretchen had quit her job at the end of 1991 as we felt that with both of us working, our lives had become too hectic. We seemed to have too little time to relax and too little time to spend with our two children, Matthew, then almost four and Hannah, then almost two.

One of the main ways I had formerly occupied most of my free time, as well as a good deal of the time when I should been doing something else, was playing rugby. Something I had started doing in college. I had more or less stopped playing rugby a year or so earlier, as between the two kids, a job, trying to finish my degree, I did not feel I had enough time. When Gretchen stopped working, we decided that maybe I could squeeze in some time to play rugby again and that it was going to be increasingly more difficult for me to play as the kids got older. I decided that I wanted to play one more season.

So in January, I started playing again for my club, the Austin Rugby Football Club. The entire spring season, I never felt like I was able to get into shape. I always seemed to be tired and as the season progressed, the fatigue increased. I thought that I was just getting old, at age 31 and between the job and the kids and school, I just did not have enough time to get into shape.

We had also decided that our 2 bedroom house was getting too small for our family and soon we would need a bigger one. The kids could only share a room for so long. So that Spring, we began to look for a house and got our house ready to sell.

During the last week of March, we found a house that we liked. This week the rugby team was trying to prepare for a big match on March 28 in Dallas. This game was to qualify for the Texas Rugby championships. If we won we were in, if not we were out.

That week at work, I really felt tired and often felt cold. On Tuesday and Wednesday, when I came home, I had a low fever and felt like there was no way I would be able to go through a rugby training. I knew there was a big game, but there was no way I could do it. On Thursday, I felt no better, but knew I really needed to go to the last training that evening. Somehow I made it through that.

On Friday evening, Gretchen, Matthew, Hannah and I drove up to Dallas to spend the night with Gretchen's sister and her family. The kids were, of course, excited to see their cousin, aunt and uncle. That night was a struggle to get them to sleep. No matter what I did they kept talking or getting up. The real problem was I needed them to go to sleep as I was so tired, I was going to fall asleep at any minute.

The next day I woke up and felt no better than I had the day before. While waiting for the time to go to the game, I tried to get some more sleep. We finally left for the game. When I arrived, I told the coach and captain that I did not feel I would be able to play. They wanted me to try and play as long as I could. I managed to play about 15 minutes, more accurately I managed to stay in the game for about 15 minutes. Fortunately I was too weak to actually get in the action. After I left the game, and removed my jersey, several of the other club members who were watching the game commented on the number of bruises I had. I also had a minor bump on the side of my head. It was starting to swell up and I put ice on it.

After the game was over (we lost), the family and I drove back to Austin. The next day, Sunday, I woke up with a really impressive black eye. I still felt very tired. Later that day we met with our real estate agent, we made an offer on a house we liked and also were fortunate enough to get an offer on the house we were living in.

Sunday night I ran a high fever of about 102 (that is about 40 C, for those of you that use sensible units of measure) for the first time.

The Diagnosis

On Monday, March 30, I woke up with a little blood on my pillow from my gums that had started to bleed a little during the night. Gretchen was panicked at this development and wanted me to go to the emergency room immediately. I was quite sure that it was nothing that was serious enough that it could not wait until the doctor's office opened in about two hours. I did call my office to tell them I was sick and tried to get some more sleep.

Gretchen called our family doctor's office as soon as it opened and got me an appointment early that morning. At the doctor's office, I talked to the doctor and described the problems I was having. The doctor and nurse thought my black eye was one of the worst they have ever seen (even though my doctor's husband was also a former rugby player). At the time, I thought the bruising was a different problem from the fatigue and fever. The doctor ordered a blood test (a complete blood count, or CBC) and said she would refer me to a hematologist, a blood doctor. I thought that made some sense, I probably had a blood infection.

We went to the lab and had some blood drawn and then went home. I needed to rest again. While I was resting, Gretchen got out our family medical guide. She looked up my symptoms, fatigue, fever, bruising, bleeding. The diagnosis according to the book, leukemia. Impossible she thought. She only told me about this later. About noon, the doctor called back and said my CBC was abnormal and that she had spoken to the hematologist. He wanted to see me in the hospital that afternoon and would want to do a bone marrow biopsy. Gretchen told me this, although she left out the part about the biopsy. OK, I thought, a few days of antibiotics or something and I would be as good as new.

Later that afternoon we went to the hospital, first leaving the kids with Gretchen's brother. After giving the usual information at the admissions office, we went to my room. I started to think that I was in some trouble when I accepted the offer of a wheelchair to go up to the room. When we got up to the floor, I remember being surprised at the number of posters from the American Cancer Society. Soon after getting to the room, the nurse inserted the obligatory IV in a vein in my hand. She missed the first vein, where I soon developed another bruise, but managed to get it right the second time. Several nurses came in to admire my spectacular black eye, that now covered most of both eyes.

After a couple of hours, the hematologist arrived. He asked a number of questions about my history and symptoms such. Then he said, "We are dealing with leukemia here." We were stunned. Leukemia, I knew vaguely was a type of cancer. Other than that I was clue-less.

I do not recall all of my blood counts from my initial CBC. The numbers were meaningless then. I do know from looking back at some of the lab reports later that at diagnosis my platelet count was 16. No wonder I had so many bruises.

The next 24 hours were fun-filled and packed with excitement. First we tried to call my family. My mother and then my sister Irene, as she is a doctor, a pediatrician. My doctor told us to tell her to have her call him directly as she would want to know more than we could comprehend at that time. That evening I received platelets and two units of red blood -- my first blood transfusions. The doctor came back later that night and said he had determined, from looking at my blood in a microscope, that I had Acute Myeloid Leukemia. We still needed to do a bone marrow biopsy in the morning to confirm the diagnosis. The biopsy, I later learned also was necessary to determine my prognosis. We would start chemotherapy the next day. "There is no point in waiting", he said.

The next morning I called the rest of my family. Gretchen also called her family. This was quite difficult for her. Every time she told someone on the phone that I had leukemia she would start crying. On more than one occasion she started crying so hard, that she had to give me the phone to tell one of her brothers or sisters that I was in the hospital.

In the morning, I had the biopsy. I was given sedation and slept for a couple of hours. Later that morning I got more platelets, the hope was this would boast my platelet counts sufficiently so that a Groshong catheter could be surgically implanted in my chest. This was used to give my chemotherapy and other drugs, to give me blood and to draw blood. A Groshong is a wonderful thing when you need one, I had never heard of anything like it before.

Chemotherapy

In the evening, I started chemotherapy. This was really scary, I wondered would I throw up constantly, would it be painful? It was less traumatic then I thought, only because I had imagined the worst. There was little nausea and no pain. The chemotherapy was the fairly standard AML induction therapy of 7 days of continuous Ara-C with 3 days of daunorubicin.

The next day was April 1st, April Fool's Day. Perhaps someone would come to my room and let us go home and tell us it was all a joke. No one ever came.

With my low platelet count, I had some problems with bleeding. The black eye I received from the rugby game started to get worse. After another day my doctor ordered an MRI to see if I was having any bleeding behind my eye. This allowed me to get unhooked from my IV for an hour. The MRI was negative (or as Dave Barry would say, in layman's terms positive).

More seriously, I also had some bleeding from around my Groshong catheter. I do not remember much about this, but Gretchen remembers it vividly. She had left the room for a while to get something to eat. When she returned she saw the light outside my room blinking, and in the room were several nurses looking at me. The surgeon decided to do exploratory surgery to see if he could find the source of the bleeding. Gretchen did not know what was happening and she sat it the waiting room through the surgery and while I was in recovery thinking the worse. She was afraid to leave, fearing the doctor and the nurses could not find her if they needed to. This may have been the scarcest time for Gretchen, this was one of the only times she thought I was going to die. The surgery opened up the catheter area and did not find any cause for the bleeding. Eventually the bleeding was stopped by keeping me flat on my back for two days and having sand-bags (about 5-7 pounds or 2-3 kilograms worth) to put continuous pressure on the area.

AML has a number of different subtypes. Sometime during that first week, my doctor told us that the bone marrow biopsy had shown Myelomonocytic (M4) leukemia and that I had an inversion in chromosome 16. I would later learn from him and other sources, that the prognosis for AML with an inversion in chromosome 16 is better than most cases of AML.

Eating was difficult while I was on chemo and for most of my time in the hospital after that. Whenever i would swallow something, my esophagus would hurt. It was never determined if this was because of an herpes infection, some other infection or from acid from my stomach. They tried treating all of these will little success.

How Gretchen, Matthew and Hannah dealt with my diagnosis

Fortunately children are very resilient. This was also a rough time for them. At first, I think that they thought it was fun. For the first day or two they were at their uncle's house (Gretchen's brother, the only of both of our siblings to live in Austin). Being at his house with their cousins was always something of a treat. After a few days my mother came to stay with the children, later Gretchen's mother would stay with them. Things were a lot rougher on them then. Their schedules were disrupted, they were feed different things, the grandmothers did not know which sheets to put on their bed, etc. I think that they started to realize something was really wrong at that point. Of course, Dad (that would be me) was not around and their Mom (Gretchen) was seldom there either as she spent most of her time at the hospital. She felt it was important to me both emotionally and physically to be at the hospital as much as possible. I certainly got lonely quickly without her there. When Gretchen was home, she tried to spend most of her time with the kids.

We tried to get books or videos to help explain what was happening to the children. There are not a lot of resources out there that deal with this. We did find a couple of books and a Charlie Brown video from the Leukemia Society of America. The video was about a girl who was a friend of Charlie Brown and had leukemia. Even though it was not about adults, I think it helped out the kids, particularily Matthew. He insisted on buying a red baseball cap for me because he knew I would lose my hair and the girl in the video had worn a red baseball cap on when she lost her hair.

The kids were able to visit me in the hospital. However Matthew would seldom come to visit and when he did he would only stay a few minutes. Although I think he did not understand a lot that was going on, I believe he was not interested in being there because there was not much of anything fun to do. Like things to climb on or places to run. Hannah on the other hand even at age 2 seemed to be fascinated by the whole thing. The catheter in my chest, the IVs, the bandages. She would come to visit much more than Matthew.

Gretchen at first was a mess. Neither of us knew what was going on. It did not help that her impression of what my sister Irene (the pediatrician) told her was that it was very unlikely that I would survive this. The episode of bleeding was also really scary. In addition to taking care of me, she had to make arrangements for taking care of the kids. However after a few days she rallied and I believe it would have been difficult or impossible for me to have made it without her. I do not remember both of us crying at once, however at least once a day, one of the other of us would breakdown.

Gretchen ought to teach classes in patient advocacy. Once she got over the initial shock of the diagnosis and figuring out how to take care of the kids she was truly amazing. There are lots of stories to tell about what she did. The hospital, in order to save money, had decided to temporarily close the diabetes wing of the hospital. Since the oncology wing was the closest wing to the diabetes wing, the diabetes patients were moved into the oncology floor. A number of the diabetes patients had serious infections diseases (in particular C. Diff.), I had no immune system, it had been entirely wiped out by the chemotherapy. The diabetes patients were mixed in with the cancer patients at random and at one point I had the same nurse as a patient with C. Diff. Once Gretchen realized this she got the head nurse to make sure that we would not share the same nurse again. Eventually, largely I believe because of Gretchen the diabetes patients were put at one end of the floor while the oncology patients were put at the other end.

Leaving the Hospital and More Chemotherapy

After spending 24 days in the hospital I got out. I had lost most of my hair and about 25 pounds (11 kgs) as I had not been eating much. My doctor said that I should soon start to feel better then I had for a long time. He was right, I began to feel a lot better very quickly. My appetite came back and I started eating as much as I could. I figured that the next chemo session would be like the first and I would again lose a lot of weight.

The following Monday, which was April 27th, I started back to work again half-time. It would be a week until I started chemo again. My sister Irene was visiting during that week and we both went to the hospital to get our blood drawn for HLA typing to see if she was a match for me in case I needed a bone marrow transplant. Although it took several weeks to get the results it turned out she did not match.

The first week of May I started consolidation chemo, which consisted of 4 days of high-dose Ara-C again, twice a day, 12 hours apart and mitoxantrone on the first three days. Initially the doctor had told us that I would have to be hospitalized to get the chemo, however after we questioned him a bit he said it would possible to do it as an out-patient. For four days, I went into the doctor's office for Ara-C and mitoxantrone (the first three days) as well as hydration and Zofran for nausea. In the evening a home health nurse would come and administer more Ara-C and Zofran. I also had a syringe of Zofran to mix in juice to take during the day (Zofran was not available in oral form at the time). I thought I might be able to work during that time, but I was mistaken. Although I was able to eat this time, the chemo wore me out so much that most of the time that I was not actually receiving medication I was sleeping.

For the first few days after chemo I felt fairly good. I did not go into work, because of worries about infection. I did a little work from home, though. I was still tired a lot. About a week after the chemo ended my counts started to drop. I required blood transfusions on Friday and then again on Monday, May 18th. This required being admitted to the hospital. Monday I ended up in the hospital overnight because it took much longer then usual to get all the blood and then I had a fever. However by morning the fever had subsided and I could go home.

Things were very chaotic at home. Friday May 23rd we were supposed to close on our new house and move. We had been able to get into the new house to have carpet installed and a few other minor repairs by the 18th. Gretchen and her brother were busy going back and forth between the two houses to move some things. I was only able to get in their way for a short time.

A few hours after leaving the hospital, Tuesday afternoon I spiked another fever and had to be re-admitted to the hospital. The problem turned out to be what is called a peri-rectal abscess, in layman's terms this is a pain in the butt, literally. This required surgery to drain the abscess and IV antibiotics. I ended up being in the hospital for about a week. This time, Gretchen was busy moving and getting our new house ready and did not spend nearly as much time with me in the hospital. Being alone in the hospital was a little scary, but it was mostly lonely and boring.

On Friday, May 22nd we closed on our new house. Since I was still in the hospital, Gretchen and someone from the title company came for me to sign all the documents, a friend who is a notary, notarized them. I hope Gretchen read everything we signed, because I sure did not. Saturday the a number of the guys from the rugby club moved our stuff. I guess it was a painless move, but given the choice I would have rather carried all of our furniture myself from the old house to the new.

Monday, May 25th, Memorial Day, I was still in the hospital. This was also our 6th wedding anniversary. By that evening, my fever was mostly gone, my white count was coming back up and I was only on one antibiotic. Unfortunately my oncologist was off that day, and the doctor on-call, who seemed like a nice guy, but was not an oncologist was not willing to release me. He would have given me a pass to get out for a little while but felt that I needed to come back later that evening for another dose of antibiotic.

We spent our anniversary in the hospital. The nurses somehow managed to find a little cake for us and Gretchen brought in a pizza and we spent a quiet evening watching TV in the hospital room. With very few exceptions, nurses are truly wonderful people.

The next day my doctor came and released me. I went home to our new house. It is always a little strange, waking up in a new place. This was even more so, I had not moved anything and did not know where anything was. Where the furniture was, where things in the kitchen were, anything.

Recovery

I was anxious to be finished with chemotherapy and get back to work. Not so much because I had really important things to do at work, but because I wanted to get my life back to the way it was before I had been diagnosed. A bone marrow biopsy done after the chemotherapy was finished had found no sign of leukemia or of the inversion in chromosome 16. As my doctor so dryly remarked, "This was better than the alternative."

My sister Irene, the M.D. had talked to some other doctors she knew. Some had told her that additional chemotherapy might give me a better chance. I was quite upset at this, as I thought that I had finished all the chemo I was going to need. I sought a second opinion from a doctor recommended by my family doctor. After seeing this doctor, I decided that my own doctor knew what he was talking about and that I did not need more chemo.

Around that time, my brother Ralph and his wife Priscilla visited. We took that opportunity to get him tested as a possible bone marrow donor. Although it took a while to get the results back from the HLA testing it did turn out that he was a perfect match. I found this reassuring although I was sure that I would not need to have a bone marrow transplant.

My recovery from the chemotherapy was fairly quick. I was soon able to return to swimming (once I got my Groshong catheter removed) and riding my bicycle. I got back to work full-time, which was mostly working on my Ph.D. dissertation. My only major complaint at this time was the abscess, it had developed into a fistula and required more out-patient surgery in the summer. It healed very slowly and it was only November when it seemed to have healed fully. This was a real pain in the butt!

In the fall of 1992 I managed to finish my Ph.D. dissertation and I graduated in December, 1992. This was the fulfillment of a dream I had had for a long time. It also ended my college career which had lasted many more years that I would like to have thought. At the beginning of December both Gretchen's family and my family came to my graduation ceremony.

In January, I had my monthly appointment with my Oncologist, on a Wednesday. These had become fairly routine by that point and I was not too worried as I felt very good, better then I had in a long while. I rode my bike the 5 or so miles from my office to the doctor's office. The nurse did her usual thing and drew a couple of tubes of blood and ran it through the machine that did the CBC. After she got the printout she asked if I had been sick recently. I answered "No" and asked her why she had asked. My white count was low and when I looked at it I say that my granulcytes in particular were low and my platelets count had fallen to a little under 150 from its usual place around 200.

Then I saw the doctor, I do not recall him being very concerned, although later I knew he was very concerned. He said that he did not like my white count and wanted to do a biopsy. He did say that a virus can cause a lower white count. We scheduled the biopsy for Monday, 5 days later.

It was a long bike ride back to the office and I do not remember much. I still felt fine but I was worried about relapsing. The next 5 days were not too bad, I think I convinced myself it was a virus. I was anxious to have the biopsy over with.

The following Monday Gretchen and I went to the doctor's office for the biopsy. First the CBC was repeated, my platelets had fallen more to around 120, but my white count had recovered slightly. My doctor did not seemed comforted and he mentioned something about seeing an abnormal cell under the microscope. We did the biopsy.

The next 3 days I felt like I was in a trance. The next day I waited for the doctor to call with the results of the biopsy. Finally I decided to call him. He said the results were borderline, the biopsy had shown 5% blasts in the marrow (2-3% are normal, 30% is the definition of leukemia) he said he would have felt the relapse was definite if there were 10% blasts. We had to wait two more days for the results of the chromosomal studies to see if the inversion in chromosome 16 would be detected again.

Two days later my doctor had called and said that the further tests had shown the present of the inversion in 16. I had relapsed. I was devastated. I felt sure that I had beaten the disease and I had really been feeling quite good.

We discussed the treatment options, the only real one was an allogeneic bone marrow transplant. I was terrified. From what little I had read, the treatment killed a lot of people. I was also sure that I would never be very active again. He did assure me that many people are able to be active after a transplant. He also thought that I would have to have chemo to get me into remission and then I would have to go to the BMT center for a BMT. We talked about BMT centers and he mentioned San Antonio and Baylor. I asked which one he would use if it were him and he said Baylor.

There were a lot of emotions going through me then, frustration that I was not through with treatment, the feeling that life was not fair and most of all the fear of the unknown -- a bone marrow transplant. Would I ever feel the same again? Would I ever be able to work again? Play sports again? Would I die?

Choosing a BMT center

We visited both the BMT center in San Antonio and the BMT center at Baylor University Medical Center in Dallas. Baylor was a little more established and larger program. Both of the doctors we saw seemed to say about the same thing. We choose to go to Baylor, mostly because Gretchen's sister lived in Dallas and we felt that this would help in taking care of the kids. It later turned out that this was not as helpful as we would have liked, although otherwise we were happy with Baylor.

Once we had decided to go to Baylor there were still a lot of things that needed to be done. These things needed to be done fairly quickly or otherwise I would need to have more chemotherapy to put me in remission before the BMT. First we had to get the insurance company's approval, something we had heard was not going to be easy. Baylor would not do anything, let alone schedule anything without this. Gretchen called the insurance company, who said that they had paid for transplants in the past. While we were at Baylor, we (Gretchen, the doctor and I) had meet with one of the BMT unit's insurance nurses. She was the one who was suppose to be the point of contact with the insurance company. The doctor had told her that we need to get this done as quickly as possible.

A few days after coming back from our initial visit to Baylor, we contacted the insurance company to see if they had approved the BMT yet. They had not yet received a letter from the doctor at Baylor. A call to Baylor, revealed that the insurance nurse was almost ready to mail the letter to the insurance company. Gretchen had to explain to her that this was a situation in which a fax machine was needed. The insurance company approved the BMT in little more than a day. The holdup in our case was the hospital. It was more then a little frightening to think that yet again a bureaucracy could be life-threatening.

Once we had approval, Baylor wanted to do HLA testing and other tests on Ralph and I. This time the transplant coordinator did not seem to appreciate the fact that we needed to move quickly. We both had to have our blood drawn and then sent overnight to Baylor to be tested in their lab. According to the transplant coordinator the first time this could be done was in a couple of weeks. After several attempts at getting hold of the doctor, he finally called back. Once he found we had not been tested yet things began to happen. Within an hour both Ralph, who lives in Syracuse and I were having blood drawn and then sent off to be tested.

I imagine that transplant coordinators have to deal with a lot of patients who think that things need to happen right away and in many cases there is not that much urgency. Sometimes it necessary to go right to the top to get things done.

The blood tests confirmed that we were a match and it was time to get going. Gretchen organized a large going away party for me. Many of our friends came over to wish us well. We realized that once again we would have to rely on them to help us get through this.

On Sunday, February 14 (Happy Valentine's Day!) we drove up to Dallas to my sister-in-law's house outside Dallas. The next three days, were spent at the hospital for testing, heart, lung, kidney tests, more blood tests. Also Ralph flew in at that time. He also had to have some blood tests and a general physical. We both passed.

On February 18, 1993, which was Hannah's third birthday, I entered the hospital. That day I had minor surgery to have a Hickman catheter installed in my chest. The Hickman is similar to a Groshong and was used to make sure I had a constant companion, my IV pole, throughout the stay in the hospital. The next day, I started on seven days of chemo and radiation -- Two days of VP-16, 2.5 days of Cytoxan and 2.5 days (5 doses of radiation) -- with the transplant on February 25.

I am stopping at this point for now. If I do not stop now, I am not sure I will ever get this up on the web. Suffice it to say that I did make it through the BMT with not too many problems. I left the hospital on Day 22, March 19. There is a lot more that I want to include, the time I thought my kidneys had failed (scary at the time, funny at least to me in retrospect), leaving the hospital, getting CMV, coming home to Austin, the slow road to recovery, returning to work, skin problems that were suspected of being GVHD but were not, the continued need for extra sleep, losing my job and finding out more then I ever wanted to know about COBRA (a federal law that allows you to keep your insurance for a time after leaving) and getting and treating cataracts which is happening now (in early 1997). Hopefully I will be able to complete this in the not too distant future.

Current Status

Gretchen, Matthew, Hannah and I still live in Austin. I am too busy most of the time to update this page as much as I should. I now work for a startup company called Breker Verification Systems, until 2004 I worked at Advanced Micro Devices (AMD) . It has been more than almost 14 years since my diagnosis and more then 13 years since my BMT. Still at times, I think it is only a dream -- a very bad dream. I am sure that there have been some positive things about my experience. I believe that my relationship with Gretchen is stronger then it was previously, my acne has mostly cleared up (I attribute this to the radiation) and I can tell insurance salesman to take a hike and they listen. Still given the opportunity I would rather have not had this experience. I hope that by putting this up on the web that others can benefit from my experience. I also hope that in the not too distant future, new treatments are developed that are as effective as the current treatments, particularly BMTs, but without the devastating side effects.