Sent: Wednesday, October 27, 1999 1:03 AM Subject: T+5, evening, maybe 40% of my days here are past. The web site address: http://www.goss.com/david/ On a medical note. My platelets are down to 16,000. I will need a transfusion of them when it is down to 10,000, I suspect tomorrow. I should start getting the juice from all you wonderful donors sometime after the day shift shows up. These numbers were like 250,000 during the summer. I meant to start this one with "I just got out of the shower." That was a long time ago, but let's pretend. "I just got out of the shower." One of the real pleasures is that I can still take showers just like before I came in here. Certainly one of the high points of my day, planned at the end of my 6 hour afternoon stint free from Robby. I don't need to tell you about showers, but I have a few stories about it. If I was a neurotic young male, this would have been the shower from hell. There was enough hair in the drain to choke dozens of cats or one of our horses. My sunscreen bill will have to go up to allow for the increased needed coverage. I have found it interesting that the hair is falling off of different areas at different rates. Right now, it is falling only from the top of my head, and one other location. Maybe I should conduct a poll, send me your choices, leaving these choice areas to your imagination. I have tugged around and all other hairy areas are still held tight. By the way, I am/was a very hairy guy. Some people have sent their regrets that my hair was going. Take heart, this is one of the things that I have been looking forward to, an inevitable result of the chemo and/or radiation. It will grow back, as only the growing tips, like meristematic regions in plants, get apparently regenerated from adjacent tissue. I wonder if this may act like a good pruning, where plants typically come back bushier. Good hair days for me have been few and far between. They say that it is likely that it will grow back differently, maybe better, maybe worse, maybe even a different color. I am hoping for Robert Redford's hair in Butch Cassidy and the Sundance Kid. All things considered, I don't really care if I come back looking like Bozo the Clown. I have had one suggestion of adapting my new head to a pirate look, complete with earrings. The nurses here have suggested a Mohawk. Rest assured that given my ability to grow this stuff back, as evidenced by my beard growth in the web site pictures, I will have a good head of something or other by the time I get out of the apartment in a few months. I had a long telephone call from a long distance friend. We spoke for about 2 hours (he paid the bill) and I actually ran into a possible conflict with the time I needed to get new meds through Robbie. The nurse knocked on the door and reminded me that I needed to hurry up because of my date with Robbie. I spend the time in the afternoon, away from Robbie, doing fun and necessary things, like my walks and taking a shower. I told the nurse that I would hang up right away and be out of the shower, do my tube maintenance and be ready in 15 minutes. She asked me if I needed any help taking the shower. She closed the door and left. I told my friend that this good-looking, friendly young lady just asked me if I needed any help taking a shower. I then asked him which one of us he thought was having a better day. By the way, this was passed by JoAnne before publication. I am not an idiot. I have developed some strange cramps in one foot but mostly in my right arm just at the elbow. They have determined that this is a reaction to the Cyclosporan that is dripped in me 50% of the time. It is not dangerous, and I was concerned that it would hinder my sleep, which is real important to me. They gave me some Percoset as a precaution, and I slept through the night. People have been asking about the germ/isolation issue. I went through this earlier today, and here is a response from one of you, a bone marrow transplant survivor, with additional insight. insight.*********************************************************************************** David: Just some thoughts from my own experience you might be interested in. All of your messages are really bringing back memories of my transplant. When I had my bonemarrow transplant in 1993 at the University of Omaha Medical Center, I was in isolation. Everyone, visitors, nurses and doctors, wore masks and gowns when they came into my room. When I went back for my two year follow-up. I asked if there were any bonemarrow transplant patients who might want to see a surviving patient. They said sure and walked me over to a couple of people who were there getting their chemo as out-patients, and their white counts were 0. I was told that they were doing all their transplants for lymphoma as out-patients and they were no longer using isolation. They had also found out, that they could accomplish the same results with a lot lower dose of chemo than I had been given. Oh, well. It's good to know that the treatment used on me and others at that time period, helped them improve the procedure. procedure.*********************************************************************************** This means that people in the same condition as me today are being treated on an out-patient basis. Amazing stuff. By the way, she also said she is a Trekkie. By the way, Star Trek Resurrection was on the hospital network tonight. I had my first field trip out of the unit yesterday, as they took me down for chest x-rays. These are routine tests and happen every Monday and Thursday. The tech was surprised when I refused the wheel chair and walked down to the 2nd floor, carrying my increasingly heavy chart, and the chart for another patient. The nurses okayed that I only needed a mask to leave the unit. My x-rays went quickly, but the other patient took more time. I decided to explore. I made it to the top of the escalator above the Lobby. Most significantly, I actually saw the front door. It was encouraging that it was still there. I had thoughts of sneaking out for a pizza, but figured it wasn't a good idea. My x-rays all came back negative which is good news. Accompanying the hair loss is the loss of taste buds. I first noticed this several days ago when the spaghetti sauce tasted funny, but I initially dismissed that as a new recipe or a new cook. It wasn't. Interestingly, not all taste goes away at the same time, indicating to me that the different cells are being killed off at different rates. I have limited tastes to taste, but still have existing while diminishing tastes for cheese, noodles, sweets, fruit and chocolate, with the latter being the most authentic, maybe undiminished. I asked a nurse about this. She said that people have reported loss of taste for up to a year, and that she has heard about some tastes going while some remain. While I have much to be thankful for so far in all this, it would be totally amazing to me if the only thing that I can taste for the next year was chocolate. After all, it could have been Swiss Chard. This is a good seque into something I wanted to get into for a while, food. Many people have asked about the food situation in the hospital and for me in particular. Here goes. First of all, I did not come here because they have good food, I didn't expect a 4 star French restaurant. Being a vegetarian requiring an unknown restricted diet due to medical requirements, like no immune system, I was expecting airline food for a month at best, and who knows what at worst. The first time this came up was during my first consult with the BMT team doctors, several months ago. I asked if I could expect to get any decent vegetarian food while in the unit. He laughed and said that you couldn't get decent food of any sort in there, that the food was cooked to insure that it was microbe free, meaning, I interpreted, beyond recognition. Now remember that I was coming from being an organic grower, where left over vegetables, fresh from the garden, as good as any you can buy, stuff that cost an arm and a leg at the health food stores, was daily tossed on the compost pile simply because we picked more than we could eat at the time, and we could always get more, fresh picked stuff whenever we wanted to (at least during the growing season). However, even that early in the process, it was clear that survival was at stake, that the food was a trivial consideration. I would cope, although sometimes I thought that it might be better to get food from the IV than from whatever I was forced to eat. I have been pleasantly surprised. Now what they make here is institutional food, lots and lots of meals every day. When I got here they presented me with a menu, which you are supposed to fill out each day for the next day's meals. Breakfast had the usual stuff, I think my first breakfast was French toast or something, and it wasn't bad. The lunches and dinners were more problematic. They have 20 entrees to chose from, but none was really vegetarian, and none was within my normal food guidelines from before I was sick. The two closest entrees were egg salad, which I have probably not eaten for 30 years, and macaroni and cheese, a little closer to my norm, but still a higher up on the food chain than I usually liked to browse. It looked like I was going to be eating a lot of macaroni and cheese, and childhood memories of Kraft flashed through my head. A little digression on what I really did eat before all this started. I am considered a lacto/ovo vegetarian, meaning that I will eat vegetables, dairy products and eggs. In fact my self imposed guidelines include very little dairy products or eggs, with the former being sometimes eaten with granola or parmesan cheese over pasta, and the latter typically in the context of chocolate chip cookies. Again, I am a vegetarian, but not crazy. The reason for including dairy products involves both some convenience considerations and because it is a good source of vitamin B12, which is hard for total vegetarians to get. Hard, but not impossible. People have asked about my diet and why I am into it. Suffice it to say that I developed this in college days, 30 years ago. Today it is just my lifestyle, the original reasons are not important to me. People ask about if I get enough nutrition, and my sub-3 hour marathon time generally answers that one. I went through the first day, with the French toast and Mac/cheese as the entrees. Both were surprising good. There were also lots of other foods that went with each meal, salads, soups, beverages, the usual stuff. Then there were the desserts, but more on that later. I mentioned to a nurse that my pickings were a little slim and she asked if I had seen the list that would be available once my immune system went away. I was not looking forward to it. Amazingly, this new list, which I could order at any meal, had a reasonable selection of items, many of which were strictly vegetarian. There was spaghetti with marinara sauce, baked potatoes, stuffed shells and sauce, etc. It looked like I would at least be getting some variety, and more things to look forward to as long as I could keep eating. I ordered one of about everything available for a few meals, just to see what was what. They are happy to send you what you ask for, and the cost considerations were trivial, with the cheap food ingredients used here and the incredibly high cost of anything medical. Some things I liked, some I didn't, but the overall prospects looked good, with both variety and reasonable quality. This may sound strange, but I have found that the types and quality of the food here is likely giving me a relative survival advantage over other inmates. First of all, I have always sought out and enjoyed cheap food. The cheapness attitude is best characterized by the Woody Allen line in Annie Hall: Talking about sin with her non-Jewish relatives, he states that it was a sin in his family to buy something retail. ( I've been waiting to throw that line in for days) JoAnne and I regularly go with friends to TraLings, a Chinese cafeteria type restaurant near the Hill in Boulder (commercial endorsement) where we typically have real good food for both of us for about $8, which includes enough food for at least one more lunch for me, and a few more meals for JoAnne. We went with a friend, who had a discount coupon if you bought $20 or more. We literally had to buy food explicitly to take home in addition to our dinners there to find a way to spend the $20. The other thing working in my favor is that I am a vegetarian. Oatmeal for breakfast has been a staple for me longer than many of you have lived. I looked under the lid and said that the oatmeal looked real good. I imagine that most people would look at the same thing and complain about it, adding more stress to this incredible situation, which can only hurt their chances here. Imagine all this stuff, and having to eat what you consider to be crap at each meal. I talked to one of my neighbors here today, asked her how she was doing, and she proceeded to complain about the food for the next 5 minutes. If anything, with the Mac/cheese and the desserts, I am eating higher on the food chain than I did on the outside. Much of this stuff, although not the absolute best quality, would have been considered a treat in previous times. Much of what I eat here now are the desserts, both because they appeal to me and they have the pre-digested consistency that is least likely to hurt my innards. A lot of this is like applesauce and canned pears. You don't know how good this can taste when you may not taste anything for a long, long time. The piece-de-resistance, though, for me has been the much previously mentioned chocolate mousse. I asked if it was vegetarian, and was told that it was, but would have violated my own constraints just to eat this. I figured that the gelatin on the numerous capsules that I take every day already crossed that line, and this tasted much, much better. Besides, it is the only real chocolate taste that I can get in here, but do recommend that you try chocolate milk on your oatmeal once in a while. I don't know if the mousse is any good, relatively speaking. I don't know if it is made from scratch, or comes from a spray can. Who cares, it is doing it's job. I will thank the cooks when I get out of here. As a further aside on this, I generally keep the TV on for companionship in the room, even when doing other things, like right now. I saw Deepak Chopra (maybe misspelled) on the tube and he actually said that he doesn't like sweets, that the only dessert he likes is, you guessed it, chocolate mousse. I rest my case. The Cyclosporan has caused another physical issue that has affected my behavior here. A few days ago one of the nurses said look your hand is shaking. Reacting with my normal reflex I asked it this was a problem. She said that it showed that the Cyclosporan had finally reached the necessary therapeutic levels needed to do its magic. This made me feel better but there have been times, like this morning, when I really couldn't type, just after I had finally gotten used to the tiny keyboard on this notebook. My hands and fingers just didn't work right, missing maybe 2 out of 3 keys I was trying to hit. Not a problem, but it has slowed my cyberwork down a bit. This may be a relief to some of you, but there actually are people out there who wait for and read my every word. Amazing. I am fine now. This is another of those problems, but no big deal. They gave me a new toy to play with today, an exercise spirometer. It's a gadget you suck on, trying to raise a piston in a graduated cylinder. It is intended not to test, but to exercise lungs. When the nurse showed it to me and showed me how to use it, I asked what the normal ranges of use typically were. She said that she had seen as low as 750 and as high as about 3500 ml. I proceeded to peg it at 5000 ml, and she left the room shaking her head. She even left the manual, nerd joy, where I found that my height and age indicated a target of 3050. The maximum on the whole chart is 4000 and that is for a 6 foot 6 inch male who is 20 years old. I am not a much of a sports fan and do not have cable at cable at home. They have espn on the tv here. Mostly it is hard to imagine that people want to watch all that golf, billiards and minor team college football. I did find two new sports that really peaked my interest. How the hell did these guys develop the skills in the various half-pipe contests (bikes, skateboards, in line skates) without breaking their necks. Amazing stuff, but I think I will pass. The other thing that came on today was the Disabled Games sponsored by Tylenol. Lots of Olympics type events, track and field, etc. They said that they have six sponsoring organizations ranging from blind people to amputees to others. Inspiring, especially from where I sit, watching people come up with respectable 100 meter times with one titanium leg. By the way, I would not qualify for this, but there is a Transplant Games every 2 years which I plan to get into. I have heard that the longest foot race is 1500 which used to be a short warm up for me. A survivor I know in the Longmont area has been in this for a few years, and I think he is a sprinter. I am not sure if they are in it, but it seems unfair that I might have to compete against somebody who had a corneal transplant. Just like the Special Olympics, though, the issue is obviously not winning this stuff, but just being able to show up. For you Simpsons fans out there, the best show on daytime TV here really appears to be Matlock. I have not found a channel that shows McGyver.