Sent: Monday, November 08, 1999 1:34 AM Subject: T+17, evening. I get out of here tomorrow. Well folks, I just checked out the weather forecast for Denver for the first time since I got here. It really hasn't been relevant to me until now. I sure did miss an amazing Fall, but the 5 day forecast says it will continue until the end of the week. I look forward to this. I am getting out of here tomorrow at about noon, unless something unexpected happens between now and then. The doctor told my mother today that my progress through this has been phenomenal. Enough said. I will be moving into a nearby apartment as an out-patient for something like the next 2 months. With some more luck, I may be home before Y2K. I really don't know what allowed me to get this far with virtually no problems. It could be anything from my positive attitude to the amazing drugs that they have to control all the downside effects to a wide range of other factors. Most likely it is a combination of many or all these things. Whatever it is I just hope it continues. I am not out of the woods yet, but walking out of here, literally, is a major milestone in beating the leukemia all together. I still have some major mountains to face, primarily now the possibility of infections, severe graft versus host disease and the possibility of relapse. These are things that will hang over me for at least a few years into the future, but, extending the metaphor, Lewis and Clark have gotten up the Missouri River, and are climbing over the Rockies for the relatively easy trip down the Snake/Columbia drainage to the Pacific. The doctor said that there is a 20% to 30% that people who get to the out-patient phase will end up in the hospital again at some point. I have beaten all the odds so far, and am determined to beat this one and any others that are thrown in my path. Just a note for all you Kaiser members. My relatively easy and quick trip through this so far has saved them some money. I'm doing my part to keep your rates down. Now for some important stuff, my hair situation. They threw all they could at me, and I still have an amazing amount of hair. My head is sparse, but there is still a lot there that appears to be firmly rooted and is really not falling out any more. I had a neat experience last week when they took me downstairs for a check-out chest x-ray. I was standing facing the wall about 18 inches away. They use a light that shines in the same location and pattern as the x-rays to position me for the shot. When the light turns on, the shadow in front of me on the wall looks like a light bulb with hair sticking straight out all around. I actually started laughing and they had to delay the shot. I just wish I had a camera to take a picture of that. Most of my body hair is still there, with suffering ranging from some attrition to virtually no difference. These guys couldn't even beat most of my hair genes. Speaking of the camera, you may have noticed that there have been no new pictures on the web site in quite a while. For reasons unknown to any but the bit gods, the camera/software stopped working with my notebook, and I have not been able to download the pictures in the camera to the computer for quite a while. I borrowed another notebook from a neighbor, and this also failed, but for a different error message reason. I sent the camera back to the farm to see if it would work with my desk top, and just got the news that it worked. These pictures may not be spectacular, but should be on the web site within a day or two. Frankly, things have been pretty boring around here lately, with few good photo ops, but I really did want to document my hair loss. I should get the camera back tomorrow, and you can see what I look like then. I will also have personally important pix showing my leaving here and what the apartment looks like. I turned on the TV today when I was going to eat lunch. The New York City Marathon was on, and the particular scene was the lead woman runner crossing mile 16. This particular location, maybe even the exact spot they were showing, has personal importance to me. I ran, well sort of, the NY Marathon in 1980. I had run, well sort of, the Denver Marathon two weeks earlier. The Tuesday night before the Denver race, I was on an easy training run with a friend I had trained with all summer. About half-way through that run, I started feeling sick. It turned out I had the flu, and was sick for 3.5 days, until Friday, with all the usual symptoms, lost a bunch of weight, and had real doubts that I could run the Denver race. I called doctors and the CU distance coach, and the general opinion was that the race wouldn't hurt me, but there was doubt that I would do very well. They were right. At about mile 22, in the middle of Washington Park in Denver, a place I had put in lots of training miles, my body finally had had it, and I sat down under a big cottonwood tree. It was the only Marathon I didn't finish. Back to New York. The week before the race was the 1980 Passive Solar conference at UMass in Amherst. This was likely the high point of the Passive movement, with over 5,000 people at the conference. It was also my first big conference, and I had a great time, presented my first technical papers, ate a lot, drank a lot, partied, slept little, generally had a good time. Another running friend suggested somewhere near the end of the week that we go down to NYC and crash the race, since we were not official runners. He had spent time in NYC, maybe went to school there. He had to go there anyway because he was flying from Kennedy to visit his family in India. We took the bus down, stayed with a friend of his and carbo loaded on about 17 Indian dishes that I couldn't identify. We started the race the next day at about 10 or 10:30 in the morning, a real unusual time to start a marathon. I did fine until crossing a bridge, the 59th St. bridge, I believe, from Long Island into Manhattan. Within a few hundred feet of entering Manhattan, right near where that TV shot was taken, I developed a leg cramp that made the next ten miles the longest and slowest of my running career. Walked 100 feet and ran 100 feet for 10 miles. By the way, one of the only physical symptoms that I am going through now is cramps due to certain drugs preventing absorption of magnesium and all the fluids going through me taking much of whatever gets through out of my body. I was woken up from a sound sleep this morning by a cramp in one of my calves. Now for the long awaited explanation of the graft versus host (gvh) disease and graft versus leukemia (gfl) effect explanation. The gvh is due to my new immune system recognizing my body as a foreign invader which should be destroyed. This should be relatively minimal in me due to the perfect donor match from my brother, but it can range from non-existent in me, which it is not, to real severe. I am experiencing a mild case, which shows up as a skin rash over much of my body. The physical symptoms, the rash, are easily controlled with a steroid cream that I have to put on twice a day. I had thought that gvh was something to be eradicated when it appeared, as severe gvh is a major potential mountain in my path. The docs explained differently. They do have heavy drugs to knock the gvh back, maybe eliminate the mild case that I have. They are not doing this for 2 reasons. First the drug that they use, Prednisone, is a heavy steroid that can produce serious, long term health problems on its own. And secondly, the appearance of gvh also indicates that the new immune system is working and also indicates that the graft versus leukemia effect should also be at work, which they want to keep on working. Basically, as I understand things, people have cancer cells quite frequently, but they are typically destroyed by a healthy immune system. A healthy immune system identifies these cancer cells, as being bad things and does a search and destroy on them. The gvl effect is the third part of the triad in the arsenal, in addition to the chemo and the radiation, to eliminate my old stem cells, the ones with the genetic defect and the cause of my disease. If any of those bastards were lucky enough to survive the first two weapons, the gvl effect of my new immune system, the biological warfare/control mechanism, is used to get rid of whatever is left. The importance of this is huge, because if any of these cells survive, it is more likely that I will relapse, and the leukemia can show up again. The doc said that the best way to implement this control is to have the gvh show up, but to keep it at a low level that doesn't cause major damage to my body, primarily internal organs like my liver, kidneys, and just about anything else. So far I am lucky, since the gvh is at just the right level to maintain the gvl effect without the use of the Prednisone to keep it there. Again, I am right on the correct flight path through the treatment. My situation is likely better than if the gvh never showed up, and is definitely better than if it showed up in a more aggressive manner. Keep your fingers crossed on this one. My major physical symptoms include infrequent fevers that are likely due to the gvh, and the cramps which were mentioned above. I also have a pain in my right bicep which the docs claim they are not responsible for, and is likely due to my typing in a funny position, sitting up in bed. I may be the first person who ever went through a bmt, and the most severe long lasting physical problem was from overuse of muscles, maybe a form of repetitive motion problem. I have seen a physical therapist about this, and the solution is decidedly low tech, a heating pad. Two movies I have seen in here recently that I can highly recommend are EdTV and Adam's Rib. The latter is a Katherine Hepburn/Spencer Tracy movie from the 30's or early 40's that is real clever, funny, and way, way ahead of it's time. Rent it, you will likely really enjoy it. It is real neat to see what they did with just good acting and good writing, before they had special effects. In a completely different vein, I saw parts of Jackie Chan movie today. The title and plot are not important, but Jackie is really amazing. I have seen him in several pictures, from back when he was young and still in Hong Kong, through recent ones with all the Hollywood glitter. The acting is poor, the plots silly, but he does all his own stunts, and some are really amazing. It's sort of like the Kung Fu genre, but really in a class by itself. He can kick you in the head as well as most of them, but the other stuff he pulls off really entertains me. You may not agree on this one, but it may be worth a rental to find out. I just don't know how he has done it for many years and is still in one piece. Swarzenegger? wouldn't risk any of this. The webmaster has been out of town for a few days, and the blood count graph on the website is out of date. I have attached the current excel spreadsheet. Open it if you are interested. Note the white cells and the platelets. FYI, the upper limit of the wbcs is 10, and the lower limit of the platelets is 150. I am above both of these numbers. This is the reason I am getting out of here tomorrow, and am relatively street ready. The jaggedness of the recent numbers is also expected as things sort themselves out. On the subject of my immune system, a dear old friend of mine, Norm Stern is a Ph.D. microbiologist and a world class expert on salmonella and other diseases that people get from eating chickens. I was talking to Norm about my immune system, and told him that I viewed it like the natives in Hawaii when the Europeans arrived, and they lost something like 75% of their population to diseases like measles. He said that this was not entirely accurate. He viewed my situation like a new born child, in that while my immune system does not have the antibodies, etc., to deal with disease organisms that I have not been exposed to, it does have the genetic history and pre-selection that supply the basic mechanisms to deal with what I am likely to be exposed to. In fact, I will be going through a series of immunizations for the common diseases, including the childhood stuff and others. It seems like I am in a little better situation than the open Petri dish image once again. I have not been eating as much as I could, basically because I am getting a little tired of the available foods. One of my favorites here now is my midnight snack of chocolate milk and graham crackers. Because of this I have lost about 7 pounds compared to when I came in here, and am about 16 pounds lighter than my fluid bloated peak earlier in the treatment. This is probably the world's most expensive way to diet. Thinking about buying a telescope, something that will support a hobby that I have had a life-long interest in and something that I should be able to easily handle when I get back home. If you are interested in this sort of thing, check out this web site, one of the best I have ever seen. Read through their primer on how to select a scope, great stuff. http://www.astronomics.com/ By the way, I just watched a PBS show on astronomers studying real deep space, near the 15 billion light year potential visibility horizon caused by the present estimate of the age of the universe. They showed a scene of the control room at the Keck Telescope, located at 14,000 feet on Mauna Kea on the Big Island in Hawaii. One of the astrophysicists said that one of the problems they had, considering the expense and scarcity of available time on this state of the art instrument was that these very bright people couldn't work effectively and tended to make a lot of mistakes, wasting time, money and viewing opportunities, because of the low oxygen at the high altitude. Seems to me that it would be real cost effective to either supply oxygen to these people, as they regularly do for hospital patients, or, even more simply, they should fan pressurize the control room to increase the oxygen partial pressure. Amazing what us lowly HVAC engineers can come up with. That's all for tonight. The next installment will come from my new digs, way up in the air on Park Avenue.