Sent: Thursday, December 23, 1999 1:12 AM Subject: T+ 62, Winter Solstice Today is a sort of special anniversary for me. I was diagnosed with the leukemia on June 21, the summer solstice. Today, represents two complete seasons that I have been living with it. It's been a while since sending out any information on my progress. Frankly, I had gotten sort of burned out on all the email, it started seeming like a job after a while, particularly after things got reasonably routine and somewhat boring. I have been receiving emails asking how things are going and why nobody has heard from me for a while. Here is what's going on in my life, with emphasis on the medical stuff. Basically, my health and progress are still excellent, way ahead of any expected schedules and any other superlatives you can think of. I have been home for over 3 weeks, and couldn't be happier. I am mobile, both on foot and by car, go out for walks and birdwatching, run errands to stores during off hours, can see visitors, am eating much better in terms of quantity and variety, and am generally somewhat bored. Now don't take this last comment as a negative. I view that there are three situations I could reasonably expect to be in at this time. These include being not alive, being in some dire medical situation, or being bored, resting and recovering. Being bored is obviously the preferred situation. I am generally energetic every day, although some days I am just beat and rest up. However, I have walked as much as 5 or 6 miles at a time, have climbed snow covered hills and done all kinds of things that probably should not be expected for a bmt survivor until about 6 or 10 months from now. I've got no complaints about my progress. I will ski in the hay field if we get a decent snowfall out here. I do need to avoid crowds of people, and situations where people may get me sick. I have refused visits from folks if there is anyone sick in their family or workplace. I go shopping, King Soopers for example, during early morning hours and avoid getting close to anyone in the stores. Anyone who visits me has to take off their shoes and wash their hands before they come down to my basement sanctuary, which I have come to call my Fortress of Solitude. Hopefully before getting out of this situation it won't turn into the Bizarro world version of the same. My medical situation is right on track, with a few problems that have shown up, nothing serious, but they do need to be dealt with. First, the graft versus host disease (gvh) is still being treated with a steroid. The skin rash and GI tract problems that resulted from the gvh have disappeared, and they have reduced the dosage of the steroid. They cannot just cut out this drug because there are withdrawal type side effects. It seems like I will be on the steroid for another month or so if the gvh symptoms don't reappear as they lower the dosage. Again, the gvh is accompanied by the anti-leukemia effect (gvl) so keeping it going for a while is actually a good thing, as long as they keep the symptoms in check. Continued blood tests indicate that the gvh is not causing any other mischief in my body, so this is going very well. About 3 weeks ago the blood tests indicated that a virus has activated in my body, one that can potentially cause a fatal pneumonia. The culprit is call the ctyomegalovirus (cmv) and it hangs out in about 80% of all people. I could have had it in me before the bmt, or it could have come from my donor. Given the 80% chance of being in me or the donor, the odds of getting this are quite high. It usually doesn't become active except in immunosuppressed people like transplant patients, AIDS victims, etc. When the tests showed that it activated, I had to go on a new drug regime, which includes twice a day IVs containing Gancyclovir. The schedule requires that I give myself the IVs at home. This is a little inconvenient, but it's sort of neat doing medical procedures on yourself. It takes about 45 to 60 minutes to drip the stuff in, and my present schedule is to do it at about 10 AM and 10 PM every day. It's actually going in me right now. I get a new blood test every Monday, and they get the results back on cmv by Wednesday or Thursday. When these tests show that the cmv is no longer active, I will be reduced to once a day IVs for a week or so, and this should be over. My last email said that I was disease free. This is true as far as they know. However, the bone marrow biopsy that they did included sticking me in one place with a needle and taking a tissue sample. This is a one-point test, and there is a possibility that there may still be old leukemia cells lurking somewhere else in my body. This raises the possibility of a relapse, or a return of the disease. I believe the odds of this to be relatively small, particularly given the early onset of the gvh, but it is something that can happen. The implications are significant, and would include a return to fairly major medical intervention with associated dangers and other problems. Keep you fingers crossed on this one, as it is really only a matter of luck one way or the other. The other two potential big deal medical issues that I face are infections and a recurrence of more sever gvh. I am doing everything I can to avoid infections, by staying isolated, very frequent hand washing, real careful food preparation and selection, avoiding unknown people, keeping my environment clean, and other things. I am, for example, susceptible to childhood diseases, and will receive a wide range of vaccinations for measles, chicken pox, etc., in about 10 months. These are supposed to hurt. The recurrence of gvh is not under my control, and my happen. I presume that the relatively mild case that I had indicates that a major problem with this is unlikely, but this may not be true. The chances of any of these dire problems occurring does drop with time, but I likely need to keep a reasonably constrained life style for another year or more, depending on what happens. This obviously keeps me from doing some things I would like to do, but there is no real choice. If anyone wants to join me in local outdoor activities, feel free to contact me. I wouldn't mind the company. I am considering thinking about getting some business work done after the new year. If anyone has anything for me to consider working on, you know who you are out there, let me know, I will be honest if I think I can do it or not. I am also open to activities that are quite different than my normal business (building energy analysis, monitoring, design, etc.) and can do many kinds of math related projects, software development, instrumentation development or any other business and technical activities that may be interesting. My major pleasure in life is still waking up each morning to find out I am still breathing. I am amazed to find myself this healthy this soon after the bmt, and am particularly happy likely see whatever happens with the Y2K thing. I think that January 1 will have some of the most interesting news that has happened in a real long time. I certainly did not expect to be alive to see it 6 months ago. Personally, JoAnne and I are staying home and will likely watch a good movie. Finally, I want to again thank everyone for their interest and support during this ordeal. Have a wonderful and safe holiday season, and stay away from crowds on New Year's Eve. Dave ps: I will not likely need any additiona blood or platets, so anyone who wants to donate can feel free to do so. A special thanks to all you volunteers.