Sent: Thursday, November 04, 1999 3:42 AM Subject: T+13, evening, T+14, early morning Well gang, we're getting close to the end of game 1 of the series, and it could be a perfect game if the kid can keep up the pace. Of course, the big news is that I am getting out of here on Friday or Saturday of this week, within the next few days. The exact day depends on my blood counts, specifically my neutrophil? counts. When these get up past a certain level, then it's out of this hotel and into the apartment. My mother and I went through apartment training today, and there are far fewer restrictions than I had thought. The quality of the food and my activities should improve, although there will be daily visits (at least at first) to the clinic at the Rocky Mountain Cancer Center a block from this hospital. The rules are all designed to limit infection issues, and to keep me near the clinic and hospital in case of a crisis, such as a fever indicating a potential infection. We also need to constantly be on the lookout for graft versus host disease symptoms, and a variety of other health related problems. I asked them a number of questions basically meant to see how far I could stretch the envelope without undue risk. Their answers were both encouraging and somewhat surprising to me. I told them that exercise was important to me, and that I had heard that the apartment building had limited facilities, even for the walking I've been doing. They said that there was a small park near the apartment. Now this apartment is not in the best Denver neighborhood, and I think I am ready for something bigger than a small park. I asked if I could go to City Park, a huge area with miles of bike/walking trails. The two women looked at each other and said they could see nothing wrong with that. I just needed to stay away from the zoo there because of fear of weird fungus and other things from the animal droppings. Pushing more I asked it I could run, and they said no. I then asked what if we got an 18 inch snowfall, could I get my x-country skis and ski on the paths on city park. They looked real surprised and turned to each other for guidance. Finally they agreed that this was like walking and they would permit it. So keep your fingers crossed for a major dump here in the city. I might even get to go skiing this season, something that I was sure to be off limits. They said that I should be able to drive a car after being in the apartment for three weeks or so, as long as I wasn't on any drugs that would make it dangerous. This is great news, as it will increase my and my mother's mobility and freedom of choice. I can take her to places like the Cherry Creek Mall, Sam's Club, supermarkets and other places within 15 minutes of the clinic, but I have to wait in the car. When I was 16 I could use my parents car with the proviso that I drive my mother where she wanted to go, usually shopping, as she didn't drive. This was the summer of 1967, and I spent that time in the car listening to Larry Lujack (I think) on WCFL (I think) in Chicago playing the top AM radio rock and roll. The big album that summer was Magical Mystery Tour (more Beatles) with all those great songs. All You Need is Love, I Am the Walrus, etc. It really was a good time for me. Maybe history will repeat itself in the coming time. The car only had an AM radio, and this was way before the concept of album sides. But I think that top 10 songs included about 8 from that album, so it was about the same thing. goo goo g'joob. . Here's a song list from that album, taken not from my memory, but from the web. The links will give you the lyrics to the songs: Magical Mystery Tour The Fool on the Hill Flying Blue Jay Way Your Mother Should Know I am the Walrus Hello, Goodbye Strawberry Fields Forever Penny Lane Baby You're a rich man All you need is Love . One of my NREL friends sent me a more recent CD for a recent artist I have heard of but didn't know anything about. He sent it to me with the advice that maybe it was time to get past the Beatles. Sure, he's right, but I've had other things on my mind recently. Maybe this leukemia will give me the opportunity to do even that. They said I could even go to movie matinees and similar venues if I went during periods when few people would be there. This may be difficult to schedule in with the medical requirements, but it is exciting to think about. Besides these are the best times to see theater movies anyway. Visitors to the apartment are both allowed, and, given my health at any particular moment, encouraged. Please call first, and I will send out a phone number to those I want to see as soon as I get into the apartment. I am particularly interested in people who want to go for walks in the parks around here, especially during the week. I know most of you work, but let me know if this is possible for anyone. I will have to wear a mask whenever I am outside the apartment or visitors are in the apartment, but that's no big deal. If you haven't read it in a previous email, we need more platelet donors and whole blood donors (O neg and pos, A neg and pos) for one of my neighbors, Dario, a 17 year old guy who is going through a real rough time, both here and for the last 7 years. Note these are different blood types than I needed, so it gives other of you the opportunity to get involved. Almost anyone can donate platelets, as the blood type is not important. Email me with you daytime phone number if you want to donate either platelets of blood for Dario. You will be doing a real good thing. Also refer back to past emails or email me if you would want to donate $ for Jessica, the granddaughter of a friend of my mother's who recently had a heart transplant. I will send out the necessary information. There are not recent photos on the web page because the computer dies whenever I try to download the digital camera. I will send the camera home with JoAnne or someone else to see if they can get it to work on another computer. I have about 20 pix in non-volatile memory in the camera, so they should be safe, and have capacity in their for 30 more pix. There have not been too many new and interesting things to take pictures or anyway recently, but this should change when I get into the apartment. I hope to have a practical solution to this problem figured out by then. On another technical issue, the notebook still loses time. However I noticed that after it died after an attempted camera download, It rebooted with the right time. Does this clue give any of you tekkies any bright ideas on what may be wrong and how to fix it. Again, just a nuisance, not a real problem. Finally, several people have suggested that I take all that I have written and other thoughts that I have had, and write a book about the whole experience. My buddy Dario went through some real painful stuff today, it was sad to hear about and sadder still to see him afterward. Basically, all the information that the medical and official support community gives you before you get in here is the potential downside, with little indication about the actual chances that any particular nasty, nasty problem will hit you. When I first read the book from the National Cancer Institute (NCI) shortly after my diagnosis, I was frankly considering my own version of a trip to Dr. Kevorkian, no kidding. If the disease doesn't get you, the chemo might, the radiation might, a reaction to one of the dozens of chemical might, an allergic hit from a blood product might, the gvh can nail your liver, kidneys, or any number of life critical organs, you might not get a donor and you're toast, ordinary, common and normally harmless bacteria, fungus, viruses and protozoa, both inside your body and from outside sources can kill you, a cold can kill you, you get the idea. You feel real unlucky just mysteriously being in the position of having to go through this, and you have little faith that your luck is going to get so much better that you are going to beat every one of these potentially land mines. And then there is the misery that is connected with the normal course of going through a BMT, the stuff that isn't fatal, just real, real miserable, you know, the vomiting, diarrhea, the mouth sores, the throat pain, the chest tubes, being hooked up to your version of Robbie, the total loss of privacy, the lack of sleep, the feeling of helplessness, the lack of control, the boredom, possible isolation from family and friends, etc. The best possible path through this would be the worst possible experience of your life, I compared it to a summer vacation in a Nazi concentration camp. Well, gang I have beaten all of that so far. No fucking big deal. And I want to tell my story so that others going through this can at least hope, can visualize, can have the possibility that it won't really be that bad. I visualized on skiing, hiking in the mountains, finishing Marathons, pizza, good chocolate ice cream, anything that would require me to get out of here to do once again. I want to give the other poor people who find themselves in places like this a little hope that it won't be so bad. Who knows, may I can save a life here and there. I know that my trip through Oz has been far from normal, I just have to look around here to know that. But I have also heard stories from the staff of people who were considered goners, in real bad shape, one's who the staff thought they would not see again when they left after their three day on shifts, who popped back, beat the odds, and walked out of here under their own power. Just like my ordeal is not over, I could still be taken down by some unknown mountain in my path, others who have been considered toast have made it through and are living normal lives Everybody in here, no matter which side of the normal distribution they are on, and no matter how many standard deviations they are from the norm, can either make it or not make it. I want to give everybody, the patients and their families and friends, that little help that may make the difference in them getting out of this in good shape, maybe give them that little boost that gets them through it.