Wiped out! And hammock adventures!

Dave’s Great Adventure
Chapter 2, Verse 3
August 27, 2002
Wipeout!

Well, there is absolutely no doubt that this stuff is doing something this time around. After my first cycle, I was wondering for a while if it was really working, so well was I feeling. This time, however, I started feeling very tired from early on. I mentioned to you that I was so tired that I had to sleep through my infusions last Friday, the 23rd, our 33rd anniversary! I only vaguely even remember writing that letter last week. I had to read it again today to see what I had written. I probably wrote too much; I’m not sure who all Ray had told about what’s going on with him.

I have been so wiped out that I hadn’t even gotten out of the house since Friday night, until I walked to the mailbox to mail some letters this morning. I’ve just been lying around and sleeping or dozing on the couch or the hammock. When I wake up, my appetite is okay, so I’m not losing any weight and Kathy is making sure that I get plenty of good stuff to eat. As with the last cycle, I really don’t feel unwell so much as I just feel very tired and weakened. Still, no nausea, vomiting, etc. I have some vague feelings of being a little warm, but no real fever. I suppose that’s from those damned mouse antibodies running around through my bloodstream!

I feel bad for my buddy Ray. He and I have always gotten along real well. We’re the slightly irreverent, kinda rowdy, beer-drinking part of the Doyle clan. He, I guess, had no idea this was coming. Huntington’s chorea is a genetically linked disease passed from parents (either mother or father) to offspring. It’s the same disease Woody Guthrie died of. Generally it affects its victims starting in their 40s so people see their parents with the disease and have an idea that they may, too, be at risk. But Ray’s mom died relatively young of what was thought to be lupus. They didn’t know what she had. Ray and I really beat the odds, didn’t we? I mean, I picked up a disease that only affects 1 of 30,000 Americans, while Ray gets a disease that only 30,000 TOTAL Americans have! You’d think that we could have picked a more common disease, perhaps prostate cancer or something. With about 1 in 5 American men getting prostate cancer, the odds of us both getting that would have been much greater, but no, we have to go out and get some weird diseases! (I better not ask for trouble--we could both still get prostate cancer!)

Ray apparently got his news the same week I sent out my “Reality/Fears” letter. He and I have been going through some of the same things, wondering...how long?...how bad?...when? I mentioned briefly in my last letter that we talked about end-of-life strategies. In that regard we discussed living wills and the like. Such a document will take the pressure off our families when it’s time to pull the plug. We don’t want them to have to feel guilt or undue pressure when it’s our time to check out. And we’d both like to go out on our own terms, if we have that option. But enough about that for now.

I mentioned that I really haven’t done much over the last few days but rest. Curiously, as tired as I have been, the chemo causes insomnia too! So I go to bed, dead tired (ooh, bad metaphor!) and then after an hour of sleep, get up, being very restless. That’s been dangerous, as a time or two I’ve gone to the computer and logged on to eBay! There’s not too much more dangerous than a tired, fuzzy-thinking guy placing bids on on-line auctions in the middle of the night. So far I haven’t done any serious damage, though. We still own the house and the IRA is intact!

I have, as previously mentioned, been spending a lot of time in the hammock. Sounds boring, but it really can be exciting! Really! Read on....

I got a nice note from Sue McComas, who is a friend of my Mom’s in Muscatine. Sue has had cancer but is doing well now. She noted that while she was in her therapy, she listened to Mozart and also mentioned that there are studies suggesting it may help overall cure rates. I don’t know if there are double-blinded controlled studies comparing the effect of Mozart to Brahms or Mendelssohn, or for that matter, comparing Mozart to Enya or Dire Straits, but the effects of music, the relaxation it can induce, are well known and widely quoted. So I went out on the deck and plugged in my CD player, putting in Mozart’s Symphony 41, “Jupiter.” Now, I had been getting a little achy from lying for long periods in the U-shape that the hammock induces by it’s geometry, so I was gradually tightening it up, so as to try to make the “bed” more horizontal. That, of course, also raised the center of gravity. (Do you see where this is going?) While I listen to my music I generally have on a sleep-mask that we got on one of our airline trips, because it is a bit bright under Colorado skies, even in the shade. The effect is great; I can rest nicely most of the time. The effect, however, is that I have no real idea where I am on the hammock.

I listened to the symphony and relaxed. Then I put on Beethoven’s Fifth and began to rest again. I guess I got a little restless, listening to the more martial tones of the Fifth Symphony, and began to push up more toward the head of the hammock. A little too far, perhaps! I got my body so far to one end that the whole thing went down at the head end! With a great crash, I found myself kinda standing on my head (with a pillow under it, fortunately), eyes covered, with my feet in the air, in the hammock bed. The hammock stand, meanwhile, which is about 12 feet long, had gone through the slats of the arbor over the deck! Kathy had been watching the news when she heard the noise; she looked out and came to my aid. She had wanted to get a picture but was too concerned about me to grab a camera en route. There was no real harm done, other than the damage to the arbor. I’ll work on that some day when I’m feeling better. Maybe I need to get some different music. I’ll bet my friend Kent can recommend some nice relaxing organ and orchestra music that I could relax to. (He did a doctoral dissertation on the topic years ago.) Nothing I’d have to think about too much, though, okay?

Hey, I read in the paper a couple of days ago that there is a company offering to make a loved one’s “cremains” into a diamond. Now, isn’t this an interesting concept! The deceased as jewelry. I told Kathy I’d get her a pendant for our anniversary (a promise not yet fulfilled) but now, maybe I could be the jewelry! Doesn’t that sound neat? Of course, as I told her, any diamond made with my carbon would almost certainly have serious flaws.

Oh yeah, my younger brother Dan, wrote to ask me TO STOP MENTIONING QUITE SO PROMINENTLY THAT HE’S PIRATING CDs for me. He’s afraid the ASCAP lawyers, or whoever, will break down his front door and bust up his little operation. Okay, Dan, I won’t mention it again.

Well, the decorations that our friends put up on our back deck for us last week, on our anniversary, are still up, at least most of them. They look so good we haven’t wanted to take them down. Many have blown down during the afternoon winds, but some are still up. We’re still eating the beautiful little wedding-style cake they brought for us, too. I understand that my wonderful nurse, Debbie, was the prime-mover behind this caper, with help from our friend Joan as well. Thanks again guys. We love you! I had a little fun (as if I wasn’t fuzzy enough) with the helium balloons they left behind. I called Debbie, took a deep breath from a balloon, and left a message for her, in a “Donald Duck” voice, thanking her for all the stuff they had done for us.

I think it’s time for me to end this little verse and put it to bed. I’ll look at it again in a couple of hours and if I still like it, I’ll send it out to my “subscribers.”

Until later,

Dave

“I shall pass through this world but once. Any good therefore that I can do or any kindness that I can show to any human being, let me do it now. Let me not defer or neglect it for I shall not pass this way again.”
--Unknown

(This is a passage I had on my yearbook page when I was a senior in medical school in 1978; it rather summarizes my general philosophy of life. I still like it.)