Sent: Tuesday, October 12, 1999 5:58 PM Subject: Bone Marrow Transplant Update, 10/12/99 Well, I'm getting down to the home stretch here, and decided to explain in more detail what I will be going through. I may not have time later in the week, and may or may not be able to deal with this for some time after I go into the hospital on Friday. While this has been, and will continue to be, a reasonably terrible situation, there have been some real positives. The outpouring of support and feelings from old and new friends has been truly life affirming. In my past I've been a reasonably cynical guy. I've had many bad situations dealing with bureaucracies, former bosses, realtors and others that really forced JoAnne and me to not trust a lot of people. This includes betrayal by supposed friends and being cheated for no apparent reason. This is a major reason why I have been working for myself for the last 7 years. However, all the wonderful folks who have gone out of their way to be concerned with my problem or to take time from their lives to express their love and provide other support has been truly overwhelming. I see myself coming out of this a better person, perhaps thinner and balder, but a better person. Another major positive: Nobody give you a hard time when they know you have leukemia. I don't expect that one to stay the same when I recover. Then there's the jokes that you wouldn't possibly come up with any other way: What did the mosquito order when she landed on my arm? Blood Light. I didn't say the jokes were any good, but I tried. Let the games begin! I go to the bone marrow transplant unit at Presbyterian St. Lukes Hospital in Denver at 7:30 on Friday morning. The first procedure is to be fitted with 2 catheters. These tubes are inserted near my collar bones in front, and threaded into large blood vessels near my heart. The purpose of these catheters is twofold. First, they allow for the very frequent addition or removal of fluids without having to be repeatedly stuck with needles. I've been thinking that I should get a copy of "Young Frankenstein" for viewing at the first possible time after they insert these. This will be done with me completely drugged out, so I shouldn't feel a thing. I asked the nurse on Monday for drugs that would keep me out for the next few months, but she said they couldn't do that. The second purpose of the catheters is to allow the introduction of these chemicals into blood vessels with higher flow rates, thus diluting the chemical to lower concentration levels. This is particularly needed for the chemo drugs and other nasty things. After the catheters, I go in for my first dose of chemotherapy. This brings up something that I have told some of you over the phone, but I have been saving until now. I will not be going through the mini-transplant that I discussed earlier in the summer. After thorough discussions with the doctors, it was decided that my higher blast counts made the mini much riskier. There really is no evidence that the mini can eliminate all of my bad marrow cells. If any are left, recurrence of the leukemia, or relapse, is always possible. If relapse would occur, then my only recourse would be a second, traditional, bone marrow transplant. Because of this, I will be going through the full bone marrow transplant. This means that higher chemo dosages will be applied and I will be going through total body irradiation (TBI) in an attempt to totally eradicate all of the marrow cells the first time. This is called myeloablation. The higher risk associated with the full transplant was balanced against the better chance of actually curing the problem, and the mini lost out. The more you get into this, the more you realize that it really turns out to be a long, long series of coin flips, decisions based on probabilities, rather than anything absolute. To paraphrase WC Fields again, "Frankly, I'd rather be in Las Vegas." Now, back to the chemo. I will be receiving Cytoxan, which selectively poisons some part of the DNA replication process. Since the stem cells reproduce much faster than most body cells, this chemical tends to kill them very effectively. However, there are two major impacts on the other parts of my body, the parts that I would like to keep. First, there are other cells that also reproduce quickly, and these will also be affected. This is why your hair falls out when you get chemo. Maybe I should look into forming Dave's Hair Club when I get out. It turns out that the cells that line your digestive tract also reproduce a lot, and these will be damaged by the chemo. I will have mouth sores and general digestive distress for quite a while. They will be feeding me through an IV, and I just hope they've got whatever they feed me in chocolate. I haven't asked about the vegetarian brand. Anyway, I expect to lose a bunch of weight from all this. Seems like a lot of trouble to go through to go on a diet. The chemo also attacks other body cells, because most all of them are also reproducing, albeit at slower rates. The problems here generally arise in the organs that the body uses to get rid of toxins. The liver tries to destroy toxins. This is why, I believe, that alcoholics have liver problems. The kidney/bladder system is used to eliminate toxins from the body. The reason that these organs are at risk from the chemo is because in the course of them doing their jobs, the Cytoxan gets concentrated, and the higher concentrations do more damage than at lower levels. They will be fighting these effects in several ways. First, dilution is the solution to pollution, remember that one. I will be receiving massive amounts of fluids, by mouth or IV, to flush the chemo drugs from my system. No need to explain that one, but if you visit, don't get between me and the bathroom. They also give other drugs that chemically bind up the chemo drugs, making them harmless. There is one of these that is used specifically for the bladder, and maybe others for other organs. The reason that all this is necessary is that they will be giving me much higher levels of Cytoxan than one gets for a normal chemo treatment. People with other cancers can go through chemo for weeks or months. The trick there is to give doses that will kill of the tumors, but not the healthy stem cells. In me, there are no tumors, just the bad stem cells. The goal is to blitzkrieg them into nonexistence in a few days. My understanding is that the Cytoxan dosage is about 10 times that given to normal chemo patients. It will not be a fun weekend. I go through the chemo on Friday and Saturday. I will be highly drugged up, not out, but responsive. Sunday is a rest day. I don't know if this is a medical necessity or if the staff likes to watch the Broncos. In any case, keep hoping for the Broncos to win, because I suspect this will put the staff in a much better mood. On Monday, another round of fun activities begins. I will be going through the TBI, twice a day for four days. When they described this to me, I asked if they used Cobalt 60 as the radiation source. The doctor chuckled and said that they used to, but they sent that equipment off to third world countries. Now they use a linear accelerator. Basically, this is an electron gun where the electrons are accelerated up to very precise energy levels by a series of magnet coils. There is something similar, pointed right at you head, in the back of the monitor you are looking at, LCDs excluded. I am not sure if the electrons (beta particles) are used directly for the radiation treatments, or if there is an intermediate target where some other form of radiation is produced. In any case, the energy level of the radiation is selected to break specific chemical bonds in the fast reproducing stem cells, while leaving most of my other cells alone. Again, this is not 100% efficient, and there may be unwanted damage. I believe that one of the potential problems with this is cataracts, which are reasonably easy to deal with. I will be going in tomorrow (Wednesday) for a consult with the physicists who operate this equipment. I always wondered where physicists get real work. They will measure me and set up their equipment to produce even irradiance through my entire body. I have been told that they pack you in rice to mitigate the radiation to produce this even exposure. As usual, I will ask for brown, but who knows. A few asides. When JoAnne and I were in Hawaii last month, I tried real hard to stay out of the sun, since I figured that a burn couldn't do me any good. I may end up with a very expensive tan. My science project in high school involved the invention of a linear accelerator for large objects. This was the sixties, and I envisioned shooting stuff back from the moon to the earth. I put a series of coils around a glass tube, and energized them sequentially with a cam, switches and motor arrangement. You put a metal "bullet" in the tube, and, if things were timed right, it shot out the other end. Worked like a charm. I talked to a physics professor at MIT about it when I got there, and he thought it was a bad idea. It died there for me. However, I have seen the concept many times over the years, including both the exact application I had come up with and others. In particular, this is real similar to the linear motors used for the maglev trains that have been under development for decades down in Pueblo. Another application is seen in some of the SDI weapons. If Reagan thought it was a good idea, it must have been a good idea. The doctors at PSL like to use the radiation because they believe that it is more controllable and fine-tuned that a second chemo drug. They said that it should produce a similar level of risk, with higher effectiveness. This is hard to evaluate, but, and this may be difficult to relate to, once you decide to literally put your life in someone else's hands, you just gotta believe that they know what they are doing. I will get the TBI for four days. Thursday, October 21 is the transplant day. My brother will go in next Monday, and receive a shot of drugs to release more of his stem cells into his blood stream. He will get more shots during the week. On transplant day, he will have these peripheral blood stem cells extracted by exactly the same process as they extract platelets from all the donors out there. They do whatever they do to treat the extracted stem cells, and then they transplant them into me through an IV drip. I have been told that the donor stem cells look like beer, about 1.5 liters of beer. I wish I could join you, but feel free to join me a drink that afternoon. No matter how much you may drink, take heart in the fact that I will feel worse the next morning than you do. On the other hand, I will be getting much better drugs than aspirin and tomato juice to deal with the problem. Make sure someone is the designated driver. This is also when I will start needing platelets. I gave the platelet donor list and the whole blood donor list to the hospital staff yesterday. I sent out an email yesterday telling the whole blood donors to contact the hospital to make appointments. The whole blood donations will be stretched out over several weeks, to keep the blood fresh. I have not heard from the platelet people at the hospital, and they may contact people on the list directly. Platelets only last for a few days, so these donations will also be stretched out over some period of time. I have been told I will be incommunicado for at least several days after going in. I will try to get these emails back on-line as soon as I can. JoAnne, my mother or my brother may sit in as my ghost author for a while. Who knows? More info may be available at my web site: David Wortman Photo Gallery . This will get better as time goes on. I always found it interesting that while the English language uses good-bye, many other languages use until I see you again. Auf Wiedersehen, hasta la vista, etc. Keep me in your thoughts and give JoAnne whatever she needs. Dave Ps: Dig up a copy of In My Life by The Beatles. It really seems to have been written for what I am going through right now.