Friday, February 20, 2004

Back on Hold Because of the RSV!

Dave’s Great Adventure, Book 2
Chapter 2, Verse 4
February 20, 2004
Back on “hold”

Well, about twelve hours after I hit the send button to let you kind and patient folks know that I was back on track with my treatments, I’m no longer back on track. I’ll explain momentarily, and I’ll give you a new vocabulary lesson, but first I want to go back to yesterday’s letter.

I have to admit to writing “under the influence.” Of Nyquil, that is. You know, “The nighttime, sniffling, sneezing, coughing, aching, stuffy head, fever so you can sleep medicine.” It doesn’t mention anywhere in the fine print that it helps improve one’s writing skills. Going over last night’s message, I made a number of points, all valid to some degree or another, but didn’t get to any real conclusions. Then, I just signed off without even a closing. Sorry. I talked about “what’s the point of life,” then went to what I think is a great little piece on death. Sounded almost like a suicide note!

Which it wasn’t, ‘cause I’m still here, bending your figurative ear with my literary attempts. My first point should have been the conclusion that I really think there is more to life than just being alive. All my career I have seen unfortunate folks who were handed a death sentence in one form or another, and have seen many of them go to extraordinary lengths to try to cheat death. We can’t do that indefinitely, of course, but I’ve seen folks go through multitudinous, horrible, ravaging treatments, just to try to stay alive another week, another day. Just a few years ago, I saw one of my colleagues, who was within days of dying of prostate cancer, go through intensive radiation treatments to try to hold off death for just a while longer. I’ve always felt that when living had no more joy, then it was time to count your blessings, smile at your family and check out. I just don’t think that life at any cost has any value. It’s hard to know when that point has come, I suppose. We’ll see how brave I am at stopping my treatments when I get to that point.

I’m not nearly to that point, of course. Thus far my treatments, though extensive and expensive, haven't been nearly as bad as a lot of folks have had to go through. And, most importantly, they allow me to live a normal life between them. Kathy and I are still having lots of fun. The trip to the Antarctic, for example, was wonderful. And just as important, while we were traveling there, I hardly thought about being sick at all. That's the reason for living, I think, to enjoy being alive, not just to be alive.

And the Extra Credit Reading Assignment? Well, I just think that Dr. Lewis made some very interesting and valid points about dying. Especially the sentence, toward the end, that says, “We will have to give up the notion that death is catastrophe, or detestable, or avoidable, or even strange.” It really isn’t strange at all, is it? We just don’t like to think about it.

Now, back to breaking news. Kathy and I went in to the clinic today. I was still feeling better, and my chest had almost cleared. We were to start the cytoxin today, the nasty stuff, so that we could proceed with the stem cell collection in the next ten days or so. I saw Jeff walk in, toward me, shaking his head. “It’s RSV.” he said. “You kidding me?” I asked. But he wasn’t. The tests they had done the day before, for various viruses, had come back positive for RSV, respiratory syncytial virus.

Now many of you have never heard of this, but most of you have had it. It’s a very common cause of illness but mostly among children, leading to bronchitis, wheezing, coughing, and even death, especially in small kids. If you are a teacher, as I know some of you are, or if you work with kids a lot, you’ve had it, probably recently too. When the nurses at work heard I had RSV they told me it was because I’m still a little boy at heart!

Now, RSV in adults isn’t usually a big deal. But if your immune system is compromised, as mine was about to be, it can lead to serious respiratory problems, and death. So, Jeff said we should hold off on the cytoxin. I’m disappointed that we’re going to have to delay the process, but certainly understand. Kathy is relieved that we’re not going forward with things while I’m feeling sick! Since the incubation period of the virus is about 3-5 days or so, and I started feeling ill the first day of the treatments, it’s likely that I got it from one of the patients I saw during the week between Antarctica and the chemotherapy. Our patients are always bringing their sick kids in with them, when they can’t go to school, or to the sitter, because they are sick!

So, since we weren’t going to spend our day at the clinic getting the chemotherapy, Kathy and I thought that we might go to the Denver Museum of Nature and Science. They are putting on a major exhibition about Machu Picchu, about which I have a great interest. They have artifacts from all over the world and some wonderful historical displays. We thought that it should be quiet there, on a Friday morning. Wrong! There must have been ten or more buses of kids there on field trips, seeing the same things we wanted to see. We decided I didn't need to be around kids, either to give them what I had or to get whatever they might be carrying. We left and will go back sometime when it really might be quiet.

And that’s about all the news. But, I thought some of you might be interested in this “central line” that’s in my chest. Most of you probably have no idea what the thing even looks like. My co-workers were interested, and they see stuff like this more than most of you, so let me describe it to you (if you care to read about it; if not, that's all there is to this letter).

I mentioned that the reason for it was twofold; one was to be able to put highly toxic chemicals into my body through a very large blood vessel, where it would be rapidly diluted. The second purpose is to be able to withdraw large amounts of blood from me to collect the stem cells, presuming we are able to mobilize enough of them with this therapy. What you see, externally, is a tube extending out of my upper chest, on the right side. If I had a breast, it would be coming out just above the breast (well, speaking of breasts, when I’m getting steroids, I gain weight and in fact do develop little boobies, but they’re only temporary!). The tube is a total of about 7 inches long, and goes down and divides into a “Y,” leading to two tubes, a red one and a blue one, signifying the inner and outer of the two lumens, or tubes. The thing is stitched to my chest with two sutures that drive me nuts! (I asked my doc today if we could take them out [the stitches] but he wouldn’t.) From where the tube goes under the skin of my upper right chest, it tunnels up my chest to where my collarbone joins my breastbone, then goes over the end of the collarbone. You can feel all this just under the skin! Then it hooks around the bone and goes straight down into the jugular vein in the neck, which leads to the superior vena cava, which leads to the heart. After tomorrow, I can shower normally and get it wet, but I’ve got to keep it clean, obviously. For “maintenance” I have to flush each tube out with an anticoagulant solution every day, and treat the wound where it enters the chest with an antibacterial coating each morning. I can feel the thing when I lie down in bed, and haven’t gotten used to lying on it yet. It still hurts a little bit, and I notice it most when I cough. I don’t really care for it, but as I've said before, lots of folks have gone though far worse than this. And this is nothing as compared to what I’ll have to go through when I need to take back my stem cells at some point!

And, that’s all you get for now. We’ll update what’s going on as things change.


“We make a living by what we get. We make a life by what we give.”
--Winston Churchill