Sent: Wednesday, October 20, 1999 10:03 PM Subject: BMT update, T-1. Read this one if you only have One day to go. First a joke sort of thing donated by my long lost 2nd cousin, once removed, I think, a 40 somethingish from Milwaukee. This may not impress the younger ones out there, but it will keep my contemporaries thinking for a while. Subject: Freshmen of 1999 Just in case you weren't feeling too old today, this will certainly change things. Each year the staff at Beloit College in Wisconsin puts together a list to try to give the faculty a sense of the mindset of that year's incoming freshmen. Here is this year's list: 1. The people who are starting college this fall across the nation were born in 1980. 2. They have no meaningful recollection of the Reagan Era and did not know he had ever been shot. 3. They were prepubescent when the Persian Gulf War was waged. 4. Black Monday 1987 is as significant to them as the Great Depression. 5. There has been only one Pope. They can only really remember one president. 6. There were 11 when the Soviet Union broke apart and do not remember the Cold War. 7. They have never feared a nuclear war. "The Day After" is a pill to them, not a movie. 8. They are too young to remember the space shuttle blowing up. 9. Tianamen Square means nothing to them. 10. Their lifetime has always included AIDS. 11. Bottle caps have always been screw off and plastic 12. Atari predates them, as do vinyl albums. 13. The expression "you sound like a broken record" means nothing to them. 14. They have never owned a record player. 15. They have likely never played Pac Man and have never heard of Pong. 16. Star Wars look very fake to them, and the special effects are pathetic. 17. There have always been red M&M's and blue ones are not new. There used to be beige ones? 18. They may have heard of an 8 track, but probably never have actually seen or heard one. 19. The Compact Disc was introduced when they were 1 year old. 20. As far as they know, stamps have always cost about 32 cents. 21. They have always had an answering machine. 22. Most have never seen a TV set with only 13 channels, nor have they seen a black-and-white TV. 23. They have always had cable. 24. There have always been VCR's, but they have no idea what BETA is. 25. They cannot fathom not having a remote control. 26. They were born the year that Walkman were introduced by Sony. 27. Roller-skating has always meant inline for them. 28. The Tonight Show has always been with Jay Leno 29. They have no idea when or why Jordache jeans were cool. 30. Popcorn has always been cooked in the microwave. 31. They have never seen Larry Bird play, and Kareem Abdul-Jabbar is a football player. 32. They never took a swim and thought about Jaws. 33. The Vietnam War is as ancient history to them as WWI, WWII or even the Civil War. 34. They have no idea that Americans were ever held hostage in Iran. 35. They can't imagine what hard contact lenses are. 36. They don't know who Mork was or where he was from. 37. They never heard: "Where's the beef?", "I'd walk a mile for a Camel," or "de plane, de plane!" 38. They do not care who shot J.R. and have no idea who J.R. is. 39. The Titanic was found? I thought we always knew where it was. 40. Michael Jackson has always been white. 41. Kansas, Chicago, Boston, America, and Alabama are places, not groups. 42. McDonald's never came in Styrofoam containers. 43. There has always been MTV As an aside, it is amazing how many of the words in the above are not in my Microsoft Word spell checker dictionary. Wonder the age of the person who put that together! Try it. I turned on the TV when I started to type this. The Roseanne show came on, with Dan, recently heart attacked, laying in a hospital bed connected to his IV machine with about 5 plastic bags being pumped into him. What a wimp. All that for a simple heart attack. This is not representative of my situation, but when he was finally offered real hospital food, he said he wanted his IV back because it was better. The food here is really very good. No complaint on that one. My agenda today includes two 125 ml bottles of Cyclosporine, on my regular schedule of 4 am to 10 am for one and 4pm to 10pm for the second. Today I had a special treat of two more units of whole blood, one from an anonymous donor and the second from another NREL donor whose illegible scrawl looks like Tom (maybe Toni) A?? ????? Please identify him/her and someone buy them a lunch. Also, please print your names on the yellow tags when you donate. It's the only way I can identify donors. Thanks, whoever you are. These units brought my pulseox, a measure of the oxygen carried in my blood, to about 98. It has been down to about 91/92 between transfusions. I celebrated this new record by walking a fast ½ mile in the unit hallway, with liberal dosages of flirting with the nurses. The same sort of personality change after about 3 beers in my college days or the SERI ski club weekends. (just kidding). I am waiting for the second bottle of Cyclosporine. They need to maintain a therapeutic level in my blood, and they are still calibrating the amount I get with the following test results. They need to increase the dose to get me up to the proper levels. I want to get this started, because it will take 6 hours, and it would be nice to try to get a good night's sleep before T=0, tomorrow. I have been very apprehensive before any new procedures are done on me. As soon as they start, though, I realize that to sit back and let it happen is the only reasonable thing to do There is no alternative, and nothing they have done so far has had any serious downside. This may happen, but I have made the decision that it makes no sense to work myself up before every new adventure. I plan this to include the transplant tomorrow, which is supposed to be no more a big deal than the transfusions that I have gone through in the last few days. The implications are much, much greater, but the process is the same. This lack of apprehension also relates to the radiation treatments. I am no longer in the cerebral/nervous/looking for meaning mode when they hit me with the x-rays. Today, I just sat there and enjoyed myself. Listened to Van Morrison's Moondance album in the morning, with nothing significant to report except it was good music. I specifically chose Paul Simon's Graceland for the afternoon, with the first song 'Boy in the Bubble'. "These are days of miracles and wonder" "Medicine is magical and magical is art The Boy in the Bubble" Just seemed appropriate and no need for more Seinfeld jokes. Oh, what; the hell, "the Moops". What I am going through is as much magic and art as anything that my mindset can imagine. You wouldn't believe that people could conceive of all this and pull it off successfully. Most car mechanics can't even get things to work out right the first time, and for me there may not be chances for many subsequent tune-ups if things don't work right for me on the first shot. They have a better batting average here than the Braves or the Yankees, and forget about the Broncos. I sat in the chair for the tbi and frankly did what I usually do when I'm not getting hit by high energy photons. Came up with some design concepts for something I thought about that would help people like me in my situation. Might even become a new business op for me when I get home. My brother, Mike, watched through the TV monitor, safely protected by a 3 foot thick concrete, steel and lead wall. He said that I was bopping my head to the music. I thought he meant like Stevie Wonder on the piano. I just sat through the second zap enjoying the music. During the doses on each side, I felt a sensation of the chair moving, forward on the first dose, and forward or from side to side on the second. It was hard to imagine that anyone would come from behind the radiation barrier to actually move the chair, but it felt real enough that I opened my eyes to see if it was really moving. I asked the radiology nurses about this, and they said they had never heard anything like it before. Wonder if the radiation had some novel effect on my inner ear. Who knows? As to the radiation dosage. I asked my main BMT doctor today about how much radiation I was actually getting. I will check the numbers with him again, because these seem a little high. He said that in the 8 doses I get over the 4 days I will get a total # of rads equal to 2.5 LD50s. To translate, an LD50 is the dose that is lethal to 50% of the people who get that dose all at once. He said that since they stretch this over 8 sessions, the body recovers, so it isn't as bad as it sounds. Doing some simple math, I am getting an LD50/8 each time I get this. If the mortality curve is linear, this comes to an LD6, or 6% dying on each dose. I don't know the real situation, but it is highly unlikely that this is linear, probably a more normal distribution, sort of shaped like half a mountaint. This means that the lower doses are likely fatal to many fewer people than the linear assumption would indicate, very possibly fatal to no one. Still it gives one pause to think about it. In any case, this brings up my thoughts from the last few days on my thanks and good fortune which is due to the many, many people who have had to go through this mess before me. Many of them suffered greatly due to unsuccessful experiments that unforunately for them, and fortunately for me, have proceeded my go at it tomorrow. As Bones used to say on the old Star Trek show whenever he encountered our current, but his ancient, medicine, "How could they use those primitive poisons, knives, etc, when they tried to cure people." ( an extreme paraphrase, but you get the idea). I know that advances in gene technology, clinical experience and everything else will someday make what I am going through look like experiments in a Nazi concentration camp. But they have a real good chance of pulling this off successfully for me (more on that later). Surely they will develop sophisticated genetic scalpels, better information and who knows what else in the reasonably near future. If any of you, or others that you know, ever have to go through anything similar to this, you will benefit from these past and current experiences, maybe even my experience (I am a vegetarian and former marathon runner, organic farmer, etc.) and hopefully, powerful technology advances. Who knows what the Human Genome project will make possible? To give you some idea, the first oncologist, the one who told us of my diagnosis, said that as recently as 5 years ago, about 20% of the people with my condition didn't survive the initial treatment, what I am going through now. We too shocked to ask any details, but he said that only 5% don't make it now. This is not a real good number, but remember that it includes many people who are much, much sicker, older and hopefully, less lucky than I am. Considering this, my current good progress through the chemo and the tbi, and my reluctance to ask any more questions with possibly dire implications in the next few days, I have personally increased my survival odds by about 5% in the last 6 days. They are many more hurdles that I will need to jump over without touching, at least without falling on my head, but I seem to be well on my way. It is definitely going in the right direction. I believe that my attitude is also a big issue that will help me on this score. Not judging myself, the feedback that I am getting from everyone else indicates this is as good as it can be. The nurses and others around here constantly tell me that they cannot believe that I am keeping it so together, all the jokes, frank conversations, lack of fear. I went through the down times a few months ago, and have nothing but high faith that I will be partying, skiing and whatever else with as many of you as want to participate. My brother came in today for his final shot of Nupagen, the chemical that releases the stem cells into his bloodstream. He is due back tomorrow at 6 AM (please take it easy on the north valley highway if you are on the road at that time tomorrow) to start the peripheral stem cell removal, which takes about 4 hours. They need to play their magic on this juice, purifying it only to stem cells and who knows what else. I will go through my final two tbi episodes, finishing at about 2pm. The doctor said that I should expect to get the actual transfusion in the late afternoon, maybe 24 hours from now. I am relaxed and actually looking forward to finally getting on with this. By the way, many of the people around here have commented that more color has come back to my face, I presume they mean more or less reddish or flesh colored and not something they don't want to tell me about. This could be due to any or all of the following: The recent blood transfusions, the flushing of my skin from the Cyclosporine, my recent massive dosage of high energy radiation, who knows what. Except for needing a shave again, two funny plastic tubes coming out of my chest ( I won't mention it, but nipple has been identified as one of the sure fire words in a comedians repertoire, just like words with the letters K and P) and hanging down about 8 inches, my constant companion Robbie, my funny clothes, my perception of a mass movement of body mass toward my stomach, and who knows what else, I look pretty normal. It will likely get even stranger. The hair, which is still intact (I give it a good pull at least once a day) will go away within the next week or two. It turns out that the Cyclosporine that I am getting is a hair growth enhancer, so I might end up even hairier than before. Sorry about that to all those sensitive to this. JoAnne knows places that I have hair growing that she commented on when she found this out. Watch out Lon Chaney. A few words on what to expect in the following weeks. I am going into this now because they tell me that it is highly unlikely that I will be well enough to keep up these long reports, for a period starting sometime next week and lasting maybe two weeks. So here goes. These are things that are 'normal' results of the bmt, and are not particularly dangerous, just real, real uncomfortable. The nurses have characterized this as being real, real sick. The first, and perhaps the worst, problem are the dreaded mouth sores. I assumed that these result from the normal flora (fauna) in the mouth being released from the normal biological controls of my immune system. You come to learn here that the mouth is a real jungle, just like the mouthwash commercials. Without the checks and balances it is reasonable to assume that the little bugs will go nuts and attack any available food sources, which is mainly my mouth tissues and any assorted food particles they can find. For some idea of what it could look like, if you are in the area of my farm, take a look at one of my two organic fields that have been neglected since I got sick in June. Just hope there are no close cousins to Canada thistle or bindweed lurking behind one of my molars. Anyway, I asked the bmt doctor about this. He said that this is certainly an issue, and the nurses have spent a lot of time teaching me and disciplining me to do what can be done to try to deal with this. I am brushing and rinsing my teeth and mouth (mouth care) many times a day with a solution of sodium bicarbonate, which is presumably toxic to the little critters. This is to reduce and maintain them to manageable levels. The brushing is done with a sort of soft sponge on a stick, as brushes would be too abrasive and would lead to small fissures or bigger damage that will lead to real problems in the near future. The doctor also explained a second concern in the mouth. The cells that line the mouth, and those through the entire GI track, are different than most other body cells, different in a way that is unfortunate for people trying to get rid of their bad stem cells. These food digestion related cells are designed to take a lot of abuse and come back strong. Think about it, an animal with a sore mouth or digestive system will soon starve to death. The way these cells take care of it is by reproducing fast, and make fast repairs. Dr. Brunvand, my main bmt doc explained it very well this morning. He said that if you burn your mouth on a hot piece of pizza, it blisters up, but heals within a day or two. You've all done this, so no need to try it out. However, the same blister on your arm may take a week or two to heal the same amount. The mouth cells handle this by reproducing quickly, exactly the same thing that the cancer cells, stem cells, hair cells and a few other types of cells normally do. What is used to kill off the leukemia cells will also act strongly against the mouth and gut linings. The trick here is to try to keep the wear and tear level on these cells as low as possible. I really haven't gotten dietary advice or guidance on this one, but will basically be eating pudding, ice cream and similar goodies for as long as my mouth and insides lets me keep it up. Unfortunately, the anecdotal and total evidence is that no one has ever avoided at least some reasonably severe problems along these lines. As such, I should expect to be on pain killers for the mouth pain, and will also expect to be fed through IV lines, via Robbie, during some of the next two weeks. My same old joke, but I have asked for chocolate, with no comment from the dietician. Now you know why I named Robbie. Better companion than at least one of my 3 dogs, supplies me with life saving materials, and will now proceed to feed me. What a mechanism. I also should expect nausea due to the GI stuff, which can hopefully be treated pretty well with the great drugs they have around here. I have also been told that I will likely sleep for much of the time, undoubtedly drug induced. I asked to be put out totally for the next three weeks, but there are positive medical benefits of my being at least somewhat active and mentally responsive, so they won't do this. I can think of several movies where people had long term alcohol induced blackouts, always with dire consequences (Days of win and roses, weekend, etc.) but the former is not an option and the latter is to be strictly avoided here, although seeing pink elephants and such would likely be a real treat in the next few weeks. This may not be may last long report for a while, but I would like to again thank all you wonderful people out there who have shown such amazing support in my time of need. There are too many now who have done especially wonderful things that I don't have the time to mention them here, but you know who you are. I would also like to thank all the marvelous, caring and amazingly talented medical people who have had some kind of shot at me, so far with tremendous results. For all you non-medical types, these are not like the people you run into in your ordinary business and personal lives. I will remember them for as long as I live, no comment on that statement is needed. I am particularly grateful to the actions and support by my Mother, my Brother and, especially, my Wife, JoAnne. Mae has flown here from Chicago to be by my side in my hours of need, and her words of encouragement are truly what I need to be hearing in the coming days. Mike, the second most important person in this whole thing, as the show won't go on if he doesn't show up here tomorrow morning at 6AM for the platelet apheresis. He has been here every day, supplying his punrific sense of humor, electronic entertainment and support and has sustained more pain than me so far in the process. Finally, JoAnne is the one who really needs your love and support in the coming days. She is dealing with my issues, trying to keep a job, keeping the house and animals going, and trying to not go nuts in the process. I was real fortunate to get together with her on that fateful Winter Park ski trip (can't remember much about the snow conditions) in 1988. We have been married for 9+ years, and my love for her will help to carry us through many, many more. Do what you can for all of them. It may be harder on them than on me. Fill er up with high test, and let's see what happens. Dave