Friday, April 2, 2004

Hair Loss, Alaska, Drugs and The Best Time To Die.

Dave’s Great Adventure, Book Two
Postscript 2
April 2, 2004
Just some follow-up

My last letter, my “postscript,” generated a number of queries about several things, things which I thought I’d address in a follow-up postscript, if you don’t mind. A lot of folks had questions or comments about similar things which I hadn’t mentioned. I really had intended to mention a few more things in that last letter, but I thought it was getting to be too long, so I didn’t. So, now you get more stuff, even though I don’t really have any new “stuff“ for you.

I had questions about my hair, or lack of it, the patterns of loss, and a couple of requests for pictures. I’ll attach a couple of pictures at the end of this letter. The hair loss started several weeks ago, as I’d previously mentioned. I got my head shaved about two and a half weeks ago, when hair began falling out by the “handsful” (spellchecker doesn’t like that word, but I’m SURE it’s right) and I began fearing I would soon look like I had mange or something. I then shaved my head with a razor, as the stubble kept falling out and going down my neck. That didn’t solve the problem, however. The stubs of the hair shafts still continued to fall out by the hundreds, mostly after the morning bath, for some reason. Every little hair shaft was complete with a tiny little bulbous end, the root which was coming out with the hair shaft.

Meanwhile, other body hair was falling out, but not nearly so dramatically. The faster the hair grows, the more it’s affected by chemotherapy. So, hair like my eyebrows and eyelashes weren’t affected much at all, since they are very slow growing, and so they still seem to be pretty much normal. The same can be said for the hair on my arms and legs. Now, the hair in my armpits and, uh, (ahem) lower areas has thinned quite a bit, but is not entirely absent. I think that if I’d had multiple doses of Cytoxan, as do many cancer patients, I would have eventually lost every bit of body hair.

One place that my hair seemingly hasn’t been affected at all is in my ears! The damned ear hair continues to grow merrily as the rest of my body sheds. Is God playing a joke on me?

It has now been exactly a month since I received the single dose of Cytoxan which was responsible for this hair loss phenomenon. My head has all but stopped shedding at this point and I am seeing the first little wisps of pale, downy, new hair growth. One has to look very closely, but it is there. Meanwhile, my beard is showing signs of renewed life. I have only been shaving every several days, but I do have a very fine stubble after that length of time. I have about one pale bristle for about every square half inch of my cheeks. My chin, for some reason, remains as soft as a baby’s butt.

For whatever reason, I really never got “the fuzzies” with this last treatment. I have to guess that was because I only got one, intense dose, and not several doses over several days, repeated every month. The only thing that I did that was weird after this last treatment happened the week after the Cytoxan. I was sitting at the dining room table. looking at old photos and labeling them. I was developing a headache and decided I needed to go upstairs to get some medication before it got too bad. So, I went upstairs, went to where the medicines are, but inexplicably picked up the watering can, mixed up some Miracle Grow in it, watered all the plants upstairs with the appropriate mixture, using several watering cans full of the mixture and then returned downstairs. When I sat down, I thought, “Man, I’ve got an awful headache.” Chemo brain!

I got a couple of messages from some friends and a cousin up in Iowa about my mention of giving my excess medications away, to be used for folks who couldn’t afford these same medications. In Iowa City, at the University hospital, a couple of nurses have been recently fired for using left-over medications that some patients didn't need, and providing them to patients who could not afford them, much like I did, apparently. There has been quite a row and lots of letters to the editor in the local papers over the firing of these nurses who were just trying to help poor people.

Now, in my last letter I did mention that I asked the Rocky Mountain Cancer Center if they could use the drugs, and if it was legal for them to take them. I’m honestly not sure that it was technically legal for them to take these meds, but I didn’t ask too many questions as I want them to get used. However, I’m not a pharmacist, and so I can’t legally dispense drugs. And the person I gave them to is not a doctor, and so can’t legally prescribe or dispense the drugs. And, the drugs have been out of a pharmacy, so if I had some evil intent, I could potentially have adulterated them and made them dangerous to others. There are lots of laws surrounding the handling of drugs, to make it difficult for people to illegally get drugs (as a doc, I can’t both prescribe and dispense drugs) or to steal or mishandle drugs. It’s just that all these laws, designed to keep your drugs safe, often get in the way of common sense when it comes to redistributing leftover drugs to others who might need them. I’m guessing that the nurses in Iowa City ran afoul of these laws, but were able to get away with it until someone, for some reason, blew the whistle on them. It’s too bad that there’s not a good, legal way to use these very expensive drugs when they're left over and not needed.

I received a number of very nice comments about my last letter, complimenting me on my descriptions of Alaska and some of the things we’d seen. My biggest fan, my Mom, wrote, “I enjoyed your letter about your trip to Alaska. It made me feel like I was there.” Sister-in-law Kristy said just about the same thing. Phil Dennis up in Juneau gave me high marks also. “Just finished reading one of your best pieces of writing. Your nature descriptions both scintillating and clean as a whistle.” His wife, Clovis suggested I start writing for the Juneau chamber of commerce. “I loved your latest piece of writing. Beautiful, just beautiful descriptions. Never seen it written better. You should be working for the Juneau Chamber of Commerce.” My friend Shara, down in Castle Rock wrote to say, “I love your vivid descriptions!” (Shara and her husband and I have known each other for years. She’s been a favorite patient, and we’ve been through a lot together; surgery, pregnancies, both good and bad, her MS and my leukemia. We know each other well. She recently wrote that we needed to get together for brunch or something, so we could spend some time talking. “The only times I ever get to see you, I’m naked!” she wrote. How many of you have THAT problem?)

Well, I really appreciate all the wonderful comments about my writing, and I have to tell you, I really enjoy doing the writing, but I suspect that for every person who thinks it’s great, there are probably three who roll their eyes when I launch into my best Bulwar-Lytton excess. But, it’s just that I think I see more detail in the things around me now, and want to record the things I see. I could have written so much more about that scene on the beach but I felt I’d probably gone on too long as it was. As I was standing on the boulders on the beach, I was noticing all the different strata in them, and all the different colors, shapes and structures of the rocks around me. And all the birds in the distance, and the island across the channel with waves crashing along its shore too. I just seem to sense more and feel more than I ever have before, probably because I now realize, only too well, that I no longer have an unlimited life span, as I once imagined I had.

I felt the same way every day at breakfast in the Wolfhouse. The breakfast area in that wonderful B&B is just about completely glassed in. You can look from your place at the table and see through the trees to the Gastineau Channel. The channel is always active with birds of many types, almost always including bald eagles, which not uncommonly fly directly over your head as you watch them. Whoever decided to glass in the room was a genius. But, beyond the Gastineau Channel is Douglas Island. I described its shore. But it has mountains, beautiful mountains. And when we were there, they were all snow capped, “the mounts vanilla atop black granite,” as Phil has described them. I’d look and look at them every day, though they were always the same. I took many, many pictures, but they just don’t capture the feeling of seeing the beauty so close. Alaska has so much natural beauty, that they don’t even name all the mountains, glaciers, sounds, etc. There are four lovely unnamed mountain peaks across the Gastineau Channel from the Wolfhouse. Since no one has taken the time to name them, Phil took it upon himself to name them Wolf, Bear, Eagle and Peregrine Peaks.

I want to tell you about something we saw on this trip to Alaska which I’ve never seen ever before, anywhere. Imagine you’ve planted some grass seed in the spring, watered the seeds, fertilized them, protected them. In a week or so, they sprout, so you have small clusters of green, thin blades of grass. Now, imagine that instead of blades of grass, you are seeing crystals of ice growing out of the ground. We saw that in multiple places along the trails on Douglas Island. The ground is beginning to thaw at this time of year, but the air temperature overnight and in protected, shady areas, is still below freezing. Small seeps of water, micro-springs if you will, rise to the surface but the water freezes on contact with the air, and the resulting crystal is pushed out by the force of the water below to grow longer and freeze more. I was amazed. I’ve never seen that in Germany or any other place we’ve lived. But the locals see it all the time and weren’t impressed.

Last weekend, Kathy and I took a very quick trip to Stillwater, Oklahoma to visit her dad. We hadn’t seen him since last summer, and wanted to see how he was doing. We had hoped to go earlier in the month, but the delays in my therapy pushed back all our plans. We actually weren't going to go at all, but United surprised us with a weekend special e-fare, so we decided to buy the tickets and then go, or cancel, depending on how I was feeling. I was feeling somewhat stronger by the time we were to go, so we went.

Kathy’s dad is 92 years old. He has always been a strong, independent man who took care of himself and the other members of his family when they needed help. He mowed his own lawn up until about two years ago. But time caught up with him and his wife of 62 years, so last year they moved into a very comfortable assisted living home. Then, his wife died suddenly of a stroke. I mentioned that event last year in these letters. It is remarkably sad how much Kathy’s dad has now declined since losing his wife eleven months ago. Functionally, physically and mentally, he is not the same person. He remembers his daughters, for the most part, but easily confuses the supporting cast, the grandchildren, sons-in-law, etc. He generally doesn’t know what time of day it is, what meal is coming up, etc. It is so sad. But, all too predictable. Statistically, I think most elderly surviving widowers die within one to two years of losing a long time spouse.

Which made me wonder, again, when is the “best” time to die? Is there a “best” time? For Kathy’s dad, it would have been when his wife died. He even said as much, that if he could have, he’d have gone with her. But we don’t generally get to make those decisions. Now, it would seem that life has no joy or meaning for him. Disabilities and infirmities will eventually affect us all. When should we go? What’s the best time?

When we left Stillwater to go back to Oklahoma City, to catch our return flight, we arrived at the airport and checked in a record three hours and twenty minutes early! As I’ve often mentioned, my wife wants to make sure we never get anywhere late. Our children would be proud.

One last thing: over the many months I’ve been writing these letters I’ve often mentioned our friend Jane who lives in Iowa most of the year, and in Florida in the winters. Jane’s son Randy turned fifty a few months ago. He promised himself that when he turned fifty he’d get a prostate check and a full exam. His prostate test, the PSA (prostate specific antigen) was abnormal. He underwent a full workup and eventually had surgery not too long ago for prostate cancer. Now he’s been found to have metastasis to a rib, which has been removed, and now he’s getting hormonal treatments. If you’re the praying kind, please remember Randy tonight. He, his wife and parents have had a rough time lately. Thanks.

And, I went to work today. I had a fairly light day, but now I am very tired. Tomorrow will be a very busy day, so I’m going to try to get to bed early tonight. So, I’ll close and I hope to remember to scan and attach a couple of “bald” pictures as requested by several folks.

Until later,