And Now For Something Completely Different!

Dave’s Great Adventure, Book Two
Chapter 1, Verse 4
December 11, 2003
“And now...for something completely different!”

Hello again. I hope you have recovered from my last epistle and its collection of incompletely thought-out ideas, faulty logic, eclectic philosophy and self-centered whining. I suspect some of you are still sitting in stunned silence after reading my wildly erratic thoughts. But, like I said, it’s just where my mind has been wandering recently. I have to tell you though, that it has been therapeutic for me to put these thoughts down on paper and send them out, discussing them, if you will, with all of you. I’ve stopped obsessing about them for now, now that they’ve been committed to paper, for better or worse. It’s just that you ended up being part of my therapy whether you wanted to be or not.

I heard back from a number of you who have had or were having similar thoughts. My brother Dan, in the Dallas area, whom I quoted in my letter, wrote a nice, long letter telling me that he’d been having many thoughts about death and dying for quite a while. Dan is a great guy and is a happy-go-lucky soul. But Dan has badly damaged kidneys, a problem which was found when he was about twelve or so. I think he’s operating on about a third of one kidney or so, which, fortunately, has been enough to keep him healthy for several decades. But, he’s close to the minimum kidney function needed to keep him alive. He has worried about losing his kidneys and needing a transplant for many years. I never realized he worried so much about it, because he keeps a lot inside of himself. But, I suppose it is a natural thing to worry about. You need kidneys to survive, and kidney transplants are not minor surgeries. And, if you survive a transplant, you have to be on immunosuppressive drugs for the rest of your life, drugs that can make you susceptible to all kinds of other diseases and infections. Like me, Dan has a wife and three kids he worries about and since he has had the kidney problem since childhood, hasn’t been able to get life insurance. He worries about leaving them

Dan had a lot of great thoughts in his letter. “We cannot ever find happiness from external sources. People need to look within. I’ve never had long term happiness from the acquisition of a physical object. Our higher goal is probably acquired by how we treat other people. To be decent, caring neighbors.” And, “One thing about nature, though, everything gets recycled. I wonder if that includes souls? Have you ever read the idea that the function of the brain is simply to be a receiver of the soul. And that soul is attached to that body until the physical connection (life within the body) ceases?” And, “Why are we here? Are we being tested to see if we are worthy to go on. If we are not, do we get another chance or are we tossed out?” Dan also said, “Meaning of life? Well, I guess that depends on your current stage of life. When we are young, we will live forever. Middle age asks us what we did with our youth, and old age prepares us for death. For some time I’ve concluded that old age should make the transition to death easier.”

These are great thoughts! Dan is really the quiet kid brother and doesn’t talk all that much when the family is together, but he has a lot of interesting thoughts going on under his hat. I, too, have thought that old age would make the transition to death easier. I think that’s why my current situation seems to bother me so much; I won’t have the opportunity to get to “old age,” whatever that is.

I also heard from Natalie, our son, Jon’s, fiancee, who lives in El Paso. She’s had similar thoughts, but from a different perspective. Natalie’s dad is, and for a long time has been very ill. He has very bad diabetes and has lost his kidneys, then he had a kidney transplant which has failed. Now he’s on dialysis. He’s had both legs amputated. Natalie has been with her family throughout all his trials. She worries about how long he has left, and thinks about all the things they haven’t been able to do during his lengthy illness. She worries about her mom being alone, about her father suffering. She worries that she’s not doing a good enough job of being there for them, and failing them somehow. She has given up a lot in her own life to be there for her mom and dad over the past several years. She’s a very good person.

And Cindy, also in El Paso, wrote to sat that she’s had some of the same thoughts. Cindy lost both her mom and dad in recent years to cancer. Her mom died of breast cancer a few years ago, and I told you about her dad dying of an aggressive lymphoma earlier this year. She is a Christian, but like many of us, has moments of doubt and wonders why bad things have to happen. Why were her folks taken from her? And with the loss of both her mom and her dad, the reality of death is a daily thought of hers, of leaving this world, of just knowing that it comes with certainty. She said it’s not a fantasy in her world anymore, it's reality. I wrote back and told her I felt bad for her, having to think those thoughts already at her young age, but that I understand how it happens.

And I got lots of messages of encouragement from lots of my correspondents out there, and I appreciate all your thoughts. I heard from my cousins Charlotte Finley, Jean Bieri, and Marie Murray, and from our friend Jane Forte, all up in Iowa. Kathy Roberts, out in Hotlanta wrote, “I know too many of my special friends, and of course family members that have wondered many of the things that you had the courage to say. I “kan't” seem to get to the end of "Deep Thoughts," maybe because no one wants to face the end.....as long as we continue to have HOPE maybe there is no end....WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE? I just wanted to thank you for sharing your thoughts.” Well, my thoughts and philosophies certainly aren’t on par with the great Immanuel Kant, but thanks for the loose connection. Kathy also forwarded us a link to “The Interview With God.“ If you haven’t seen it, I urge you to go to www.theinterviewwithgod.com and look at and read the awe inspiring messages. It’s a stunningly beautiful web site. And finally, Phil Dennis, way up in Juneau, wrote back that I shouldn’t worry about saying things that others may not agree with. He said, “We disagree with you that a single soul should in any way be offended by what you are doing, saying. After all, absolutely no one knows the answers. Those who claim they do are guilty of arrogant ignorance, right?”

What I didn’t get were any rebuttals to any of my hare-brained thoughts and philosophies. I know, I just know that there were a lot of you wondering what I could have possibly been thinking. Among the folks who get this little “publication” are liberals, conservatives, Christians, atheists, Jews, Republicans, independents, Democrats, abortion advocates, creationists, wildlife advocates, young folks, old or older folks, and so on. Many of you get my letters because you’re “obligated to,” because you’re relatives. Others have asked, for some reason, to get them. I know that everyone couldn’t possibly have agreed with all the stuff I said, but no one argued any of the many musings I presented. I suppose that folks didn’t want to disagree with me as I spelled out my thoughts, but I really wouldn’t be offended by different views. I could probably learn something.

I can’t pretend that my views and ideas are correct or that they are even all that important.. That’s why I facetiously called them “Deep Thoughts,” after the name of the serial comedy routine that used to be shown on the late night show “Saturday Night Live.” The host, Jack Handy, would present some inane idea which he thought was very important, a “Deep Thought.” For example: “As the light changed from red to green to yellow and back to red again, I sat there thinking about life. Was it nothing more than a bunch of honking and yelling? Sometimes it seems that way.”

Anyway, I have no special insight into dying, I just think about it more now. I’m like Warren Zevon, the rock star who recently died of lung cancer. When he was being interviewed on the Dave Letterman show, he was asked what his insights were on dying. He said we should “Enjoy every sandwich!” That’s probably about as deep as my thoughts go too, just to realize that I should enjoy every day for what it is, and enjoy the blessings I have while I have them, even if they are something as mundane as a peanut butter sandwich, or as wonderful as being able to hold Kathy’s hand.

Segue!

I ‘m calling this little edition “Something Completely Different” (after the Monty Python series) as, after my prolonged, morose and introspective dissertation of last month, I have some relatively good news. Just before I sent out “Deep Thoughts” I went to see my other oncologist, Jeff Matous, who works at the Rocky Mountain Cancer Center. I’ve been doing a lot research on what my next step should be, and have been asking other oncologists what they think. So, I scheduled a visit with Jeff to talk over potential therapies and transplants. I left feeling a lot better. The thoughts I’ve been having are perhaps too pessimistic. I’ve emotionally been up and down, and, as I told my family, I feel like a yo-yo sometimes.

I’ve said many times that this disease is really going to drive me crazy. Like I mentioned a while ago, there are many variables and unknowns. One of the main ones is my expected longevity, and without having some idea what that might be, I can't really plan much, can I? When I first got sick early last year, my doc told me the average life expectancy was about six years from diagnosis to death. He's either found, or at least said nothing to make me think differently in the last 20 odd months. Meanwhile, my white count doubling times when I first got sick were about 2-3 months, a very bad sign, and now I find that I have this CD 38 antigen, associated with more aggressive behavior of the disease! On the other hand, my disease was extremely sensitive to the chemotherapy, a very good sign. But, it came back so soon, a bad sign, again. I've been gathering information from a variety of sources about what to do next, trying to get some perspective on this disease, since there is no agreed upon "best" treatment. Talking to the husband of one of my colleagues, who is an oncologist with the VA, he noted that the disease is considered incurable and that the oncologist's job, as he joked, was to keep me alive long enough so that I could die of someone else's disease (heart attack, diabetes, etc.). Not really encouraging words.

So, a few weeks ago I had an appointment with my transplanter doc, Jeff Matous. I went there on my own just to talk about transplants and to find out why we couldn't just go ahead and schedule a bone marrow transplant now rather than waiting until I'd failed a couple different types of chemo and, presumably, would be sicker (not that Kathy wants me to do this, the mortality is horrible, but it does give the outside chance of a cure). I also wanted to find out what might be new in the treatment of my disease.

Jeff said that there was really nothing new. He also said that 95% of docs would say that I should do nothing for now! Which is what we're doing, for now. But it's not what I want to do. I want to do something! But he said the policy should be "Don't just do something, stand there!" That kinda means that the risks of further treatment could be worse than what the disease is doing to me right now. Then he added that I could be in this remission (I'm still in remission, just showing early signs of relapse) for several years! Well, I wasn't expecting to be here in several years! Then he said, in no way would he recommend a transplant for me right now. The risks of an allotransplant (someone else's marrow) are too great, the mortality being the 25-50% I've often mentioned. I'm in too good a condition to take those kinds of risks, he said. Then, he said the CD 38 antigen has been discounted as an indicator of aggressive behavior in the disease and should be ignored. And THEN, he said that if he had ten patients in my current condition that he would expect all ten to be alive in ten years!

What?! That's the first time I've heard those kinds of numbers. Then he said he thought we still could collect stem cells and store them away for later, but we'd have to do some novel things. He wants to treat me with two of the drugs I had last year, that worked so well (cytoxan and Rituxan) to "purge" most of the leukemic cells from my circulation, and then collect the stem cells. You may remember that Rituxan is a monoclonal antibody which specifically attacks the CD-20 antigen on my leukemic cells, while not damaging the normal cells. Then the cytoxan forces stem cells out of my marrow and into my peripheral circulation where they can be harvested! So, I'll be seeing my other doc, Brian Koester, again in a couple of weeks to set up the proposed therapy (presuming Kaiser will still pay for it, 'cause now it's going to be even more expensive) for probably about eight weeks from now. I guess I'll lose my hair this time, as we'll be using larger doses of the cytoxan, but, hey, it'll come back and I'll look classy wearing a baseball cap to work for a few weeks. And maybe my hair will come back curly and red!

(I might add at this point that a stem cell collection would be done, not with a cure in mind, but just as another treatment modality. The idea is that if the disease gets out of control, and nothing else works, we can blast my bone marrow, destroying everything in it, and then replace the lost marrow cells with the stored stem cells. We know that there will almost certainly be some cancerous cells collected, which will start growing, too, but the transplant will, in theory, put me back in an earlier stage of the disease.)

So... I've gone from thinking that I had, at most, about three or four years left, to thinking I might live to be old enough to collect some of my social security! Of course, Jeff could be absolutely wrong in his guesses, but it was great to get some apparently good news after hearing just bad stuff for a few weeks. I guess I won't be quite so morose for a while now. That'll be good for all concerned. I just thought I'd pass this most recent news

In other news, last month I was invited by a friend to attend a Veteran’s Day Celebration which was sponsored by the young people of his church. Kathy and I went and it turned out to be a very nice ceremony. There were veterans there from every conflict from World War II to the current Iraq war. I didn’t know until after I’d been invited to attend that I’d also have to get up and give a little speech! Most of you know that I do not do well with public speaking, but I muddled through my experiences in the military and in Vietnam. You know, this was the very first time I’ve been personally invited to a celebration and honored for having spent time in the army and in a war zone. It was nice.

And over Thanksgiving we had a very nice family get-together. My sister Deb and her family from Sacramento came out, and Deb even volunteered to do the cooking! And our daughter Jen with husband Dan and their two kids made the long drive from Dallas, through a blizzard, to be with us. Finally, our eldest, Jon, flew in from Dallas as well. We had a wonderful family time and, as expected, too much food! Plus, Dallas won the football game that day, which was a bonus for all of us.

And I continue to work four days a week, or so. Last weekend I was in the hospital delivering babies, and between deliveries I was watching the local PBS station. They were showing Rick Steves, the travel guide who does shows about places in Europe that he likes to go to. The stories that were showing that day were about Germany. He was showing castles along the Rhein River, the trains, Rothenburg, Munich, Neuschwanstein (the famous castle built by King Ludwig that the Disney castle is fashioned after), the Zugspitz, and more. I sat there getting very homesick, for this foreign country that feels so much like home to me. I didn’t know it at the time, but Kathy was watching the same show at home and was also getting homesick for Germany. We really have such wonderful memories of our years living there! We hope to get back there for a visit next year.

Finally, I wanted to pass on the news that our friends Claudia and Michael Koetzle, who live near Karlsruhe, Germany, had their first baby last month, a little boy named Alexander. New life comes into the world every day, and it’s always special. Isn’t it a wonderful thing? It’s nice to report on a new life for a change; I’ve reported too many deaths in the last year or so.

I think that’s all for now. I’ll be back with another update when there is news to report.

Dave

“We are too soon old, and too late wise.”