Thursday, December 11, 2003

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 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 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.


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.


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

Thursday, November 13, 2003

"Deep Thoughts" (about life and death)

Dave’s Great Adventure, Book Two
Chapter 1, Verse 3
November 13, 2003
“Deep Thoughts”

Over the past several months I have been intermittently writing down my thoughts on the fact that I’m slowly dying, wondering what my life will have meant and what my dying will mean. My thoughts have randomly wandered from very personal feelings to questions of philosophy, religion, touching on politics and more. Given that my thoughts and scribblings are all over the map as it were, and that my “audience” is also all over the map in terms of political leanings, religious beliefs, or lack thereof, etc., I’m sure that this bit of “literature“ will be sure to offend just about everybody in some way. But, it’s just where my mind has wandered in recent months. I’m sure I’m not the first person to have some, or maybe all of these kinds of thoughts. I just think most folks don’t record them and then send them out to lots of folks, exposing themselves to second guessing, criticisms or just showing an ignorance about things religious and/or philosophical. But, I’ll take that risk. For whatever they’re worth, here are the things I’ve been thinking about.

What is LIFE
What is my life?


I’m still young, but I know my days are numbered
1, 2, 3, 4, 5, 6, 7 and so on
But a time will come when these numbers will have all ended
And all I’ve ever seen will be forgotten.

Won’t you come
To my funeral when my days are done
Life’s not long
And so I hope when I’m finally dead and gone
that you’ll gather round when I am lowered into the ground

When my coffin is sealed and I’m safely six feet under
Perhaps my friends will see fit then to judge me
When they pause to consider all my blunders
I hope they won’t be too quick to begrudge me

If I should die before I wake up
I pray the Lord my soul to take but
My body, my body--that’s your job

I can’t be sure where I’m headed after death
To heaven, hell, or beyond to that Great Vast
But if I can I would like to meet my Maker
There’s one or two things I’d sure like to ask

Won’t you come
To my funeral when my days are done
Life’s not long
And so I hope when I’m finally dead and gone
that you’ll gather round when I am lowered into the ground

Crash Test Dummies, 1991

I can’t believe I’m dying. I just can’t!

At our first visit with my doc, over a year ago, I asked him what the average life span was with this disease. He said, “About six years from diagnosis, more or less.” That’s just seventy-two months! And that was eighteen months ago, leaving me with fifty-four more months to go.

I know I’m in remission (this was written before my biopsy of September 2003 which showed a recurrence), and a great remission at that. But I also know, only too well, that there really is no cure for my disease. I fantasize about being cured, but I’m afraid it’s just that; a fantasy. I worry every day that it’s coming back. Like every other cancer patient, I want to believe I’m going to be the exception, that I’ll survive my disease. But I know better. And I worry again and again about leaving Kathy alone. I put on a pretty good show around friends and patients, laughing and smiling, going about the usual normal daily stuff. But I worry every day. Only Kathy knows how sad I still feel inside. Only she sees me crying sometimes, at home, after work.

When I was diagnosed with leukemia last year, I started thinking about dying. That, I think, would be a normal response for most folks who have just found that they have an incurable, terminal condition, the same condition that killed one’s father. But I find, curiously, that it’s hard to imagine being dead. I find it hard to imagine not being here, not existing, not “being.” Of being just a memory to folks who knew me. Just a rapidly fading memory to my young grandkids. Being just a face on a snapshot. Of being a plot in a cemetery. It is just hard to imagine.

I mean, as long as I can remember, I’ve been here! How can it be that there will be a time when I won’t be here, at least in this earthly iteration? The electrical signals that are bouncing around among the neurons between my ears don’t have any idea that they’re not a permanent fixture on this earth.

But I know it’s so, it has to be. I’m a genealogist. I can trace whole lifetimes of many of my ancestors from birth to death in a few minutes. I see the pictures of them, from infancy to young adulthood, with their families, and then to old age, with them holding their grandchildren, and then finally a tombstone marking their final resting place. Sometime soon someone will be doing that with my lifetime. And what will they find? Will my life have been important in any way? Will my having “been” be of any importance in the future? Will it make any difference at all that I lived and died? What will be the meaning of my life? Is it in any way “special?” Am I in any way “special?”

I used to think that my dying was going to be a big deal. After all, I’ve never died before. It seemed as if it would be the biggest thing to ever happen to me. But that’s wrong. Dying has to be a normal part of life. Just in the time since I’ve been writing my thoughts on my disease and what we’re trying to do about it, I have reported also on many people near to me and the folks I know who have died. There was Kathy’s Mom, just last April. And a colleague who died of breast cancer that same month, after a long fight. And the wife of one of my colleagues who had a heart attack in her 40s. And my friend from medical training, who had the blood clot after a simple knee surgery. And the father of two of our friends who had a lymphoma so aggressive he never survived his first round of chemotherapy. And the world has gone on with its daily activities despite the loss of all these wonderful folks, just like it survived the loss of John Kennedy, Gandhi, Mother Theresa, and so many other folks. People die daily here in Denver; I see their obituaries in the paper every day. And people have died, literally by the millions in world wars, yet life went on. So, the world will certainly survive losing me, too.

I have said that I am living with a death sentence. But really, all of us, at the moment of our birth, are given a death sentence, aren’t we?

So dying won’t be the most important thing ever to happen to me. That would be having had the good fortune to meet and marry Kathy, who has been the most wonderful, loving and patient partner for me all these many years since we met in a college dining hall back in 1966. And then to have been fortunate enough to have her stay with me and help me raise a family of three beautiful children, while I dragged her and them all over the globe. The next most important thing to have happened to me was the honor of having been allowed to become a physician and help relive human misery and prolong human life. There are a lot of babies walking around today that wouldn’t be here if I, or someone like me, hadn’t been around to save them.. And there are a number of women out there who would not be alive to care for their kids if I hadn’t been honored to be able to attend to their emergencies.

“Keep Me In Your Heart”

“Shadows are falling ,
and I’m running out of breath.
Keep me in your heart for a while.
If I leave you
It doesn’t mean I love you any less
Keep me in your heart for a while.”
Warren Zevon


But what is my life? I guess my life is a couple of things. First, it is the fact that I am a living thing. I suppose that simply means that I am made up of complex, self perpetuating, interacting chemical reactions. But that also applies to viruses, bacteria and molds too. They are alive as well. So how am I different? I guess it would be the fact that I am aware of the fact that I’m a living thing. Presumably the molds don’t really know they exist at all.

But is the collection of parts and pieces that make up Dave Eckberg unique in any way? Those parts have been around a long time, and I think I’m just using them for a while. As an example, the calcium in my bones has been around for billions of years. The calcium in my body today wasn’t made with me in mind. It was created in the explosions of stars billions of years ago. And it has been used in many other forms throughout the previous millennia. It has been in dinosaur legs, oyster shells, bird eggs, and so on. In fact, all the parts that make up my body, like the iron, oxygen, nitrogen and indeed, the pieces that make up the whole world, were created the same way, in the massive explosions of stars, supernovae. Likewise, remember that our bodies are mostly water, over 90% or so. The water I’m currently using has also been around for a long time. But it’s almost infinitely recyclable. It goes from one life form to another, unchanged. It is very likely that some of the water molecules in my body were in a drink that Julius Caesar had during his lifetime. But I’m currently using them now. The point of this esoteric nonsense is that we and our lives are transient on this earth and in this universe, but the building blocks of our bodies, and therefore our lives, are not. So what makes the building blocks into “life?” Whether your beliefs are that The Master Planner made this happen, or whether you believe that it was the result of some huge cosmic accident, the source of the parts and particles making up my body have been around for billions of years. I just happen to be using them at the present. Some other organism will be using them in the future. So, what is it about the current collection of stuff that I am that makes it special? Is there anything?

When did humans get souls? This is a tough question for someone like me who really believes in evolutionary science. A belief in the literal seven days of creation doesn’t square with all we think we know about how the world works. I do believe, however, that The Creator would use processes familiar to us to make the world work as we know it. That, in my mind, would include the creation of the world, and everything in it, over many billions of years. So I have no problem with the theory of evolution, the ascent of man, etc. But, then, if we slowly evolved out of the “primordial soup,” passing through various stages to arrive at how we look today, at what point were we anointed with a soul to make our earthly travels valuable in a higher plane at the end of our time here? Did the Neanderthals, our ancient German cousins, have souls? If so, did they know it?


Is life itself “special?” Or sacred, or important? Probably not. Nature shows us that life is completely expendable. Most living things seem to exist for just a couple of earthly reasons; to make copies of themselves and, ultimately, to provide nourishment for other living things. Grass is food for deer, which are food for coyotes and cougars, who in turn are food for the grass when they die and decompose. That’s the “circle of life” as they sang about in the movie “The Lion King” a few years ago. And is any life form more important than any other? Well, I have to think that it is not, at least in Nature’s view. Whichever life form is the toughest wins out, at the expense of anything else around it. And if you’re weak, or have a serious disease, you lose out. That’s the natural way of things. So, I lose!


We, as imperious humans, think that we should have some say in what life forms are important. We designate animals and plants as “protected” and nurture them, and then we designate other life forms as “nuisance” as try to exterminate them. Who, indeed, are we to make these decisions? That’s not what Nature would do. Here in Colorado the locals have designated certain plants and animals as “non-native” and are trying to rid our fair state of these life forms. In fact, none of the plants and animals we have here now are truly “native” as they have all immigrated over the last several millennia, replacing the previous inhabitants, the palm trees, dinosaurs and fish. Yet our local wildlife “managers” have placed more value on certain life forms than others. That is a human, and purely political, distinction, not a natural distinction. In nature, probably all life forms are equally important and at the same time equally disposable.

So then, is human life important? We make any number of statements about the sanctity of life, we say that no price is too high to pay “to save one life” (in the case of new, expensive technology, like air bags, expensive medical equipment, etc.), and we pay lip service preserving life at any cost, but these are, again, human pronouncements, not those of nature. We can alter any of these protections with the stroke of a legislative pen. Human life is said to be sacred, yet we execute the worst of our criminals because they worry us and because they are just evil persons we‘d like to forget about. And we abort babies by the millions because they are inconvenient. We create laws to make these activities legal, the legal destruction of the life we hold so sacred. But this is another rationalization humans have created to cover up the destruction of unprotected life for political reasons. And as humans, at the top of the worldly food chain, we can make up whatever rules suit us at the moment, and so we protect life forms that are in our favor at the moment, and seek to destroy those that are not. Currently, purple loosestrife, Russian thistles, prairie dogs, unborn humans, and certain species of mountain goats have no legal protection in Colorado, whereas humans have decided that Rocky Mountain sheep, elk, most wildflowers, eagle and hawk eggs, bristlecone pine trees and Preble’s jumping mouse are worthy of our protection. These are, however, purely human, legal interpretations of life’s value, and have nothing to do with nature’s plans. So, really, is life all that important if we can decide on a whim what is to be protected and what is not?


It would seem that, in large part, our decision to protect life forms depends for some reason on their sizes. What I’m thinking is, we don’t try to protect any bacteria or viruses that I know of. And we pay people to exterminate our termites, spiders, cockroaches, and mice, unless they happen to be an exotic variety. But these life forms are just as natural to the environment and the world as are, say, bald eagles. But, I can’t think of any large mammals, at least in America, that aren’t “protected” in some way. But even these protected species, like moose, bear, elk, etc., are expendable in limited quantities when hunting season opens up and the government, which nominally “protects“ these animals, can sell hunting licenses and create a revenue stream. Of course, certain species of large mammals get no protection at all; think of cattle, pigs, sheep, and in some cases, horses. We raise them just to kill them. All life is precious?


Many of our laws regarding the protection of life are well-meaning attempts to make sure no animal, or plant, for that matter, becomes extinct. As if that were really important! Slowly, every year, new species or sub-species develop from the older more established forms. Under the guise of preserving “diversity” in our plant life, we have made it appear that a major catastrophe would befall us if we allowed yet another life form to go extinct. Yet, something like 99.99% of all the life forms which have ever appeared on earth have already become extinct. Did the world shudder when the last dodo or passenger pigeon was killed? And would we be better off if dinosaurs still strolled in the downtown area of Denver?


“Life is what happens while you’re making other plans.” --my brother, Dan.

That’s really true. If you’re at all like me, you just sort of meander through life, thinking that you have a plan for your life, when in fact, you just have a plan for the next few years. In middle school, we plan to get into high school. In high school, we plan to get straight “A”s (a goal which consistently eluded me) so we can get into college or the career path of our choice. Once we get into college, we plan on getting out so we can make money finally. Real money, not just mowing lawns and baby sitting money. Along the way we start planning for marriage and a family. We find the right person, get married, get a job, and start raising a family. Now we’re planning for a bigger house and the second car. We look forward to the promotion, the new assignment, the new challenges. If we’re really smart, we’re already planning for retirement, but most of us aren’t thinking quite that far forward in the future. We have bills to pay, cars to buy, houses to furnish, kids to send to ballet lessons and, at some point, off to college. We have places we want to see, vacations to finance. We’re busy people!

And at some point, we have everything we ever thought we’d want or need. Then we realize that, there must be something more. Something else that we should be doing with our life. It comes to us that money really doesn’t buy happiness. Unfortunately, many of us don’t realize that until we’ve squandered most of our life chasing short term goals. After we’ve raised the kids, after we’re in our dream home, after we’ve reached the pinnacle of our career , what’s the next goal? I think that realization is why there tend to be more older folks in churches in many cases. It dawns upon us that there is a higher goal, a deeper meaning for our lives than just the stuff that goes on “while we’re making other plans.”

As I’ve said before, based on some anonymous quote, “On one’s deathbed, nobody ever wishes they'd spent more time at the office.”


“...sometimes I suffer from distractions like,
why does God cause things like tornadoes...
and train wrecks?”
Crash Test Dummies

You almost have to believe in an afterlife to make much sense and meaning out of the here and now. If there were to be no afterlife, no higher goal or reason for our being, then you just about have to be a nihilist. If, when I die, that’s all there is, then why did I exist in the first place? It would seem that there would be no reason at all. Some would say that even if there is no higher plane, no afterlife, that the reason for my having “been” was to give rise to my children, who will carry on my genes, my thoughts, my values. And also to have been a good human being, taking care of my fellow humans and doing good for those around me, just being a caring person. But if there is no afterlife, then what happens to those genes, thoughts and values when my children and my friends die, and my grandchildren die, and my grandchildren’s grandchildren die? In the end, there will be nothing at all to have made my life, or theirs, of any value. I’m not, by nature, a spiritual person, but I can find no other real reason for living other than to have some reward at the end of life. Life itself is a gift, but it is also a struggle and at the end, life ends. For all of us, eventually. In fact, for the entire world as we know it. We know that the sun will blow up in a few billion years, and at that time all life on earth will be extinguished. Is that the end for everything?

“There is nothing perfect, there is only life....” from The Secret Life of Bees by Sue Monk Kidd

But, if our reward for being a good and caring person is the promise of an afterlife, then why does God allow such misery in this world? The tornadoes and train wrecks? Why do we all, at some time, experience tragedy, pain, suffering, loss, and ultimately, death. The rewards of life sometimes seem unequally spread around, with people we think of as “bad” sometimes getting a disproportionate share of life’s worldly rewards while we see good folks getting hurt or suffering. Just about every year I see in the news that a bus full of people going to a church outing has crashed, killing several of the faithful. Or, occasionally we see that a storm (a tornado?) has struck on a Sunday morning, blowing over a church and killing several worshippers. Now, why in God’s name should people in a house of worship be struck down while praising Him? Why?

Theologians and philosophers have debated this question forever but haven’t advanced an explanation that seems adequate to me. I was talking about the meaning of life with the host of one of our B&Bs in Alaska last July. Phil Dennis and his wife Clovis run the beautiful Alaska Wolfhouse in Juneau. Phil is a psychologist and, like me, a cynical curmudgeon. But when I was wondering what the meaning of all of this was, he said, “You aren’t supposed to know the meaning of life.” I suppose that’s really the answer.

“For now we see things through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.” I Corinthians 13:12.


“Unless you assume a God, the question of life’s purpose is meaningless.” Bertrand Russell, well-known atheist.


Sometimes I lie awake, wondering if I’ll make it out of here,
but the wind blows ‘round my heels so I stay--
I remember lying there, wishing I could be someone else
trying to find somehow to get away.

If I asked Him nicely d’you think He’d show me how to fly,
‘cause the dust has weighed my wings down, and I’m too tired to try.

Sometimes I sit here hearing voices in my head--
I try to understand, to make some sense.
I wonder, if I had to, would I lie to save myself?
A plea of guilty, but self defense.

If I asked Him nicely, d’you think He’d show me how?
I’m sure He’s up there listening, but He’s too tied up right now
to try
Try, all of my sins
‘cause I can’t stop now,
just don’t leave me behind.

Sometimes I lie awake, wondering if I’ll get out of here,
but the words stick in my throat and I stay
I remember lying there, wishing I could be somewhere else,
trying to find somehow to get away.

If I asked Him nicely, d’you think He’d show me how to fly
‘cause the dust has weighed my wings down and I’m too tired to try.

Phil Collins (with minor changes)


The best I can tell, the purpose of my life is to be good to other folks and to treat folks with love. Not romantic love, except in one case, but neighborly or brotherly love. I love my wonderful wife and want to make sure that she never wants for anything, except perhaps for me, when I’m gone. I love my family and want to try to do good things for them, hopefully without meddling. I want to help the neighbors when I can. I want to help my patients, treat them with respect and tend to their needs. I want to help the community and so I contribute money to any number of charities. And I try to be a good citizen and representative of my community and my country. And I think that makes me a secular humanist who wants to improve the lot of the folks around him by sharing of my talents and blessings. And I think that makes me a “good person,” but I really can’t be the judge of that, can I? Others have to make that determination.

“Love makes the world go round, love is all that we live for.” Anon.

“All you need is love....” The Beatles

“These things continue forever; faith, hope and love. And the greatest of these is love.” I Corinthians 13:13


“Dream as if you’ll live forever. Live as if you’ll die today.” James Dean

That’s more than enough for now. I’ll put this to rest and stop adding to it. I welcome any comments.


Saturday, November 1, 2003

What To Do? So Many Options, But No Cures.

Dave’s Great Adventure, Book Two
Chapter 1, Verse 2
November 1, 2003
What’s Next?

Last month I sent this message to my family, on the day I got the bad news:

“Just like Arnold [ a reference to Arnold Schwarzenegger in “The Terminator“ movies]...he's baaack!!! I just got my most recent bone marrow results back and it's not the news I wanted. The disease has returned and is currently afflicting 5% of my bone marrow. Actually, my doc, in his message, said he'd normally be happy with these results as "good control of the disease." But I don't want control; I want eradication. Anyway, now I have to see if my "transplanter doc," Jeff Matous, will still be interested in collecting some stem cells when they're again infected with the bad guys. Oh yeah, there's more....the recent report mentions that the study shows the leukemic cells have the CD38 antigen, associated with more aggressive progression! Well, just what I wanted to hear! Anyway, I'll be seeing what the next step will be and start putting together another DGA pretty soon, "Book II," I guess. Later, Dave”

So, in the month since I sent all of you my start to Book Two, I’ve been wrestling with what to do next. I mentioned that I knew there were basically the same options we had last year when I began my first treatments. The only difference is that now we know that the treatment I received last year won’t last very long. I was in remission just short of a year with my first course of fludarabine, cytoxin and Rituxan, the treatment that is becoming the standard down in Houston, Texas at the M. D. Anderson Cancer Center. It was developed there and seems to be the most potent and effective combination therapy there is at present, at least in the short term. Of course, there are still no long term studies to see if it will last more than a few years.

My doc, Brian Koester, has talked with my “transplanter” doc, Jeff Matous, who works at the Rocky Mountain Cancer Center, about collecting stem cells from me, now that my marrow is no longer “clean.” The message I got from Brian indicates that they don’t think they want to do it now, but I’ll be meeting with Jeff next week to discuss the possibility in person. There are centers that still would do the collection and then separate the good guys from the bad guys after the collection, saving only the good guys, the normal cells, to be transplanted back at a later time. That option seems still to be open, but it could be expensive if we need to do an extensive separation of cells.

I was talking to another oncologist recently, the spouse of one of my colleagues in the ob-gyn department. I was asking what options he thought there were. He confirmed that there really is no standard treatment and that you can make a case for just about any treatment you want to consider. He mentioned that the job of the oncologist is to keep the patient alive long enough for them to die of some other disease. A little black humor from that profession..

Meanwhile, I have been doing well, at least physically. I continue to work in the clinic four days a week and do pretty well, but having this disease, and thinking about its implications on a daily basis, makes me crazy! I just don’t know what to do with what remains of my life. There are so many unknowns and so many variables. Will I live three more years? Five? Maybe ten? Or will I die during an attempt at a bone marrow transplant next year? Will I somehow achieve a lasting remission? If I do, could I count on it lasting any certain number of years? The answers to all these questions are “We don’t know.”

I really want to get Kathy moved back to Texas before I die. I don’t want her to be stranded out here by herself having to deal with selling the house, sorting out all the stuff we own, settling my estate, moving to Texas where all our children live, and then buying another house, moving in, etc., etc., etc. All of these things happening at the same time as she will have taken a severe emotional “hit” with my death. The problem is, however, that I can’t realistically move right now as my job and my health insurance are here in Colorado.

I had hoped that I would be getting some help from the Veteran’s Administration. They announced earlier this year that vets like myself who had been exposed to Agent Orange (the herbicide used extensively in Vietnam) and who developed chronic lymphocytic leukemia, would be eligible for assistance. It was implied that there would be some disability payment associated with this assistance. I was thinking that with eligibility for medical care from the VA and with some disability payment I would be able to afford to leave my job and move Kathy and me out to Texas, near our kids, within the next couple of years.

So, I dutifully applied for the disability, went through the required physical examination, lab tests and such, and then I waited. That was last July. Yesterday, I finally received a big envelope from the VA. Knowing that I in fact have the disease, and that it is incurable, I knew that I would have to get some sort of disability. I opened the envelope to see what the amount of my “assistance “ might be. Astonishingly, at least to me, the VA found that, yes, I was exposed to Agent Orange, and yes, I have CLL, and yes, I am eligible for care at the VA hospitals, and that my disability rating is 0%! They made note of the fact that when I went through my physical exam in July I was in remission, therefore I was not disabled.

Now, while that is a true statement, anyone with a knowledge of CLL knows that when one is in remission, a relapse is expected. And that means the patient will need more therapy of some kind, up to and including a bone marrow transplant, and during whatever treatment is chosen the patient will be at least transiently disabled, usually at 100% for many months at a time. As an example, I was 100% disabled for work purposes for about six months last year. And if I go for the bone marrow transplant, and survive it, I’ll be out of work for about a year or so. And even if we decide on just more chemotherapy of some sort, I’m going to run out of sick days with another six months out of work. The finding sort of implies, also, that I won’t be disabled until I’m on my deathbed. The VA will provide care for me while I die, but won’t help with any stipend during that time. Thanks for nothin’, guys!

So, while their finding has no real impact on me for the moment, their finding of 0% disability means I won’t get any additional income and therefore won’t be able to leave my job here in Colorado to move Kathy back to Texas anytime soon. It does mean that Kathy will be eligible for a retirement benefit from the VA upon my death, so she will be taken care of between our retirement plans and the VA assistance.

This whole scenario seems ludicrous when you consider that the kind folks at the VA went through my medical records when I retired from the Army ten years ago and decided that I was 20% “disabled” because of hearing loss associated with combat exposure to weapons and helicopters, and because of arthritic changes in my right shoulder associated with having to do mandatory pushups on a regular basis while I was on active duty. They’ve been sending me a check for about $200 dollars every month (which they take out of my army retirement benefits; there are no additional dollars given) for these very minor problems. And yet, they say the disease, which will cut my life about 15 or more years short rates no disability at all. Don’t you love bureaucracies?

So, over the last few months we’ve just been doing blood tests on me every month, checking my white blood cell counts. My doc, Brian Koester, says we’ll likely start treatment again when my white counts get to about 20,000. You may remember that we started a bit late last year, waiting until they surged past 65,000 (with about 10,000 being the upper normal numbers), which altered what we were able to do with my treatments because the numbers were so high. However, over the last three months not only have my counts remained normal, but they’ve actually been declining. From August to now they’ve gone from 4,800 to 4,200 to 4,000. I don’t expect that trend to continue, but at least they aren’t rapidly going up. But since we don’t plan on doing anything until they do, it again makes it harder to know what to do with my life in the near and long term.

Speaking of my life, I mentioned earlier that thinking about my life, my disease and all the unknowns attendant to my disease are making me a bit crazy. Well, I’ve been collecting my thoughts on living with a terminal disease and sometime in the fairly near future I’ll subject you to my rambling, crazy thoughts on the subject of living with a death sentence. And you already thought you’d seen plenty of rambling, crazy thoughts! Just wait!

So, Kathy and I have been trying to live life as normally as possible. We still go out to eat, go to an occasional movie, and travel when we can. We just got back from a trip to San Antonio where I went to the annual military Ob-Gyn docs meeting. I try to go most years to see my old buddies, but each year there seem to be fewer and fewer there as more folks retire and go on to other jobs. I learned something very interesting, medically speaking at this meeting, however. Those of you who have an interest in menopause and hormone therapy may have heard (in fact, you could have hardly missed!) the hysteria surrounding a study which was published last year which purported to show that huge numbers of deaths among women on hormones (at least, that’s what it sounded like in the lay media). Anyway, in August the researchers “revised” their numbers and the risks they were quoting suddenly are no longer statistically significant. So, if you’re a fan of hormone therapy for your hot flashes, etc., you no longer need to feel guilty or endangered.

We plan to have a bunch of folks here for Thanksgiving, including some of our kids and the family of my sister Debra from Sacramento. Then, we are planning to take our family for a vacation in Mexico in early December, to Acapulco. And then, if I’m still doing well, and my condition hasn’t changed substantially, Kathy and I still plan on taking the trip to Antarctica in January which I’ve mentioned in the past. It’ll be about a twelve day cruise. We’ll see how it goes; Kathy doesn’t like cold; I get seasick. Could be interesting.

One other thing I’ve been able to do recently is get back to astronomy and use my telescopes. I’ve been able to get out a couple of times at the new moon, when the skies are dark, and go out to the prairie with some friends, well away from the lights of Denver. We’ve been able to see some fantastic things in the sky. Stars, planets, nebulae, star clusters and more. I keep looking for Heaven up there but haven’t seen it through the scope yet. I do see it daily though, in Kathy’s smile!

I guess that’s enough stuff for now. So, until later, I’ll close this verse of chapter two. I’ll be meeting with my docs over the next few weeks to come up with a plan, and I’ll share all the gory details with you, whether you want them or not, when that happens. Remember that the “delete “ button is always available when this stuff becomes too tedious. In the meanwhile, you may be subjected to my rambling thoughts on life in the near future, when you least expect them!

Until later,


Friday, October 3, 2003

Book Two: Just Like Arnold, It's Baaack!!

Dave’s Great Adventure
Book Two
October 3, 2003
Okay...there’s news.


I’ve been living in a self-induced fantasy for the last many months. Like just about all cancer patients with a terminal diagnosis, I thought I’d be the exception. The treatments would cure me when they couldn’t cure anyone else. I was in such a great remission, and all. My bone marrow tests were completely normal, they couldn’t find any malignant cells at all. What else could I ask for? We were about to collect some of my own stem cells so we could use them in a transplant back into myself in the distant future, if perchance my fantastic remission were to lapse. My white counts were finally normal. Everything looked great!

So last week I had another bone marrow biopsy, just to be sure that everything was okay before we harvested some of my stem cells. How could it not be okay? It was completely normal just last February. The biopsy wasn’t too bad. Sad to say, I guess I’ve gotten used to them and don’t fear having my hip bones pierced with big needles anymore. My doc does a good job of anesthetizing the area and the drugs they put in the IV seem take the worry out of being close to sharp objects.

It took a week to get the results back. I really wasn’t too worried, but I wanted to see the “Normal” result so we could schedule a stem cell collection pretty soon. I kept surreptitiously going into my medical file on the computer to look for the findings. Kathy was in the clinic on Wednesday afternoon, doing volunteer paperwork as she often does. We were ready to go home, but I thought I’d look one more time.

This time the report was there. “Blah, blah, blah...5% malignant cells present...blah, blah, blah.” “Shit!” I couldn’t believe it. I looked completely through the report, but it didn’t change. The evil leukemic cells, which we had just a few months earlier seemingly completely eradicated, were back. And so soon.

I had imagined that I’d get at least a few years out of this remission, and, as above, fantasized about a cure. A self-induced hallucination.

I stood up and went to Kathy and held her. One of my colleagues walked in on us, saw us a bit teary-eyed, and asked if there was a problem. I told her “it” was back. As we left the clinic, we stopped by to talk to Joan, another colleague, and told her the news. We shared a few hugs and a few more tears, then Kathy and I headed for home. We weren’t very hungry, but decided that we wouldn’t go home to make Kathy cook, so went to a new Mexican food place not too far from the house.

I checked my voice mail and found a message from my doc, explaining the news I had already uncovered. He said he was going to see what options were open to us at this time. But I know what the options are, basically. The same as they were the first time. We do nothing, we try more chemotherapy, or we go for the bone marrow transplant.

The next day at work, I felt just about as I’d felt last year when I first got the news about my leukemia. I was sad, slow, depressed. I only worked half a day, then took Kathy out for a movie and dinner. I have a movie recommendation for you; if you get close to a theater showing “Lost In Translation,” I recommend you turn around and go the other way! (Some will disagree with my assessment).

I’ve been all over the web to see what other folks are doing with chronic lymphocytic leukemia. And you know what? They all do something different. There just is no “standard” treatment. That's because, just as with weight loss plans and hair restoration schemes, none works very well.

Today I got another message from my doc. He has been in contact with my ”transplanter doc,” Jeff Matous, to further look into options. They kinda boil down into what I listed above, but with some more specifics.
1) We can go right back to the treatment I just finished last October (cytoxin, fludarabine and Rituxan), as it, in the short term, worked great. But what is the point of another short term treatment?
2) We can try another chemotherapy. Long-time readers of my notes may remember last summer that I mentioned a drug called Campath. It actually is the only monoclonal antibody approved for use in my form of leukemia, CLL, so that’s an option. Its use is, however, associated with high rates of infections, as it non-selectively kills just about all the white cells it comes across.
3) We can collect some stem cells from me, try to “clean them up” with some chemotherapy while they are outside of me, then kill off all my marrow and then put back my “sanitized” stem cells and hope they turn out all right.
4) We can go right to the “mini-allo” bone marrow transplant that I’ve mentioned in the past, using an unrelated donor’s marrow to replace my own. Since my siblings weren’t born with matching marrow, I’d have to find a donor (which my doc thinks would be possible) but the death rate from this kind of transplant is 25-50%. Of course, the death rate from doing nothing is 100% Compared to that, 25-50% looks pretty good.
5) Or we can try something else. I think I want to be VERY aggressive in this next round of treatment. I’ve found a protocol that is being used at M. D. Anderson Cancer Center in Houston where they do steps (1) and (2) at the same time. If that doesn’t work, then roll all the dice and go for the “mini-allo” transplant.

But, I need to see what my doc comes up with in consultation with his colleagues. Sometime next week I’ll talk with him again, after he’s talked to Jeff, and we’ll formulate some sort of plan. I guess there is really no urgency except in my head. The small amount of residual disease, though it seems like a lot to me, is in reality far less than I had when I found I had the disease last year. I had 40% leukemic cells then, and my doc has patients with upwards of 90%. So 5% isn’t so much, at least in the short term. But, I really want to get moving on this next step. Soon.

I think Book II could be a lot more exciting than the first volume, don’t you think?

So, I’ll get this short update out, and let you know, hopefully soon, what we’re going to do next.


Wednesday, August 13, 2003

Postscript Number Four: How I Spent My Summer Vacation

Dave’s Great Adventure
Postscript #4
August 19 2003
No News Is STILL Good News

Hello again, to friends, family, co-workers and those of you receiving my writings whom I may not even have met. I’ve been getting occasional inquiries from folks who wonder what’s going on here in Colorado (with me I mean ) since I haven’t written any updates in about three months now. Fair enough. Just so no one will worry that I’m not doing well, I’ll send a report on what’s been going on with me and the leukemia over the past months.

Not much.

The last major event in my treatment and plan for the future was to try to collect some stem cells from my circulation while I was in remission. You may remember that I had to go through several appeals to get my insurance company to even approve the collection of my stem cells and allow me to bank them away for future use, only to find out that my body wasn’t even making enough stem cells for us to be able to collect them! As of my last message in May, we were waiting for my marrow to recover enough from the abuse at the hands of the chemotherapy to be able to try again to collect the cells. We’re still waiting. My “transplanter” doc, Jeff Matous, wanted my white count to get up at least to 4,000 or so before trying again. So, we’ve been doing blood counts on me monthly but have been seeing my white blood cell counts just fluctuate in the mid-3,000 range since about last April or so. And so, we’ll keep doing these counts until the collection becomes possible, hopefully sometime before the leukemia returns.

What have I been doing with my time? Well, one major thing I did was go to Alaska with Kathy in June/July. I had been mentioning starting to do more traveling with her since last year, when I got the diagnosis of leukemia, since we now know that my life expectancy is likely less than we had planned (though, who really knows what their life expectancy will be, anyway?).

So, we scheduled a trip through a great travel agency called Rainbow Mountain Adventures, run by Collette Murray. Collette put together a wonderful, beautiful, relaxing and varied trip for us. We didn’t go on a cruise, didn’t go with a group, and weren’t on anyone else’s schedule. We were able to do things largely at our own pace and weren’t constrained by a tour director, a cruise liner schedule or by the speed of the slowest person on a bus trip. It was a great time. We went whale watching with two other folks in a small boat, we cruised up fjords to watch glaciers calve icebergs into the sea, we got up close to brown bears, we flew up to and landed on a glacier and walked around on it, we watched bald eagles all day, and much more. And we spent five nights in a very friendly B&B in Juneau, The Alaska Wolfhouse, run by Phil and Clovis Dennis, very nice folks whom I’m now also pestering with my “adventures,” after having discussed my condition, the meaning of life and much more while with them. If anyone out there is considering a trip to Alaska (and I think all of you should; it’s simply grand!) I have to recommend Collette Murray and her crew ( for your planning. They were wonderful. And if you’re going through Juneau, stop in at the Wolfhouse, but do it soon. Phil and Clovis are moving to Washington state next year to be close to their grandkids. Kathy and I have to appreciate that motivation!

I’m still working in the clinic four days a week, with a couple of day shifts on Labor and Delivery per month, on weekends. Work is going well, but as I mentioned a few months ago, I feel tired a lot. Perhaps I know now why, after having an adventure of another sort recently.

About two weeks ago, on a day off, I was doing chores around the house, but feeling extremely fatigued. I came in to sit with Kathy after a bit, and noticed that my pulse was very erratic. My heat was skipping about every other beat. I had Kathy feel my pulse, and she immediately wanted to take me in to the clinic to have a “real” doctor check me out. I told her I’d like to “wait” a while. For what, you ask? As I have told my family many times, “waiting” means I want to wait until the condition gets better or I die, whichever comes first. Well, Kathy wasn’t happy with that, so we ended up going in to see my doc. I figured that he’d listen to my heart, do an EKG and send me home.

But NO....!

As soon as he saw the EKG and listened to my heart, they got an oxygen mask on me, put an IV in my arm and sent me by ambulance to the hospital. There, they were to do a bunch of lab tests to see if I was having a heart attack. I was sure I wasn’t and was therefore confident that I’d soon be going home. Yeah, right. Well, all the lab tests came back normal, and my heart settled down into more of a normal rhythm so I prepared to leave, when the doc in the ER said I’d have to stay overnight for some prolonged monitoring and testing. Just great!

They put me in a back room in the ER and monitored my heart all might long. I didn’t get a lot of sleep. Intermittently they came in to check my blood pressure, pulse and so on, or to draw some more blood for tests. Then, in the morning, they set me up for a “stress test” where they hooked me up to an elaborate EKG machine and then put me on a treadmill for about ten minutes, with gradually increasing speeds, to see how well my heart was functioning. Well, hell, I was stressed even before we started after not having gotten enough sleep the night before, but I’m happy to say that my heart passed the test and I was finally allowed to go home after about eighteen hours in the hospital. Later this week I’m to do a 24-hour monitoring test to see how often my heart is doing these strange things. Then, we’ll see if I need medication to make it more normal.

Another medical misadventure I experienced recently involved some dental work. About ten days before we were due to leave for Alaska one of my two remaining wisdom teeth cracked and was causing me a lot of pain. I didn’t want to be traversing Alaska with a sore tooth so I went to my dentist, who confirmed that the tooth was cracked and needed to come out. He then referred me to a local oral surgeon to get it taken out. Now, I had two of these teeth taken out years ago without any problems and I expected the same with this cracked tooth.

Say it altogether now, “But NO...”

Over the last few decades this particular tooth kinda fused with the surrounding jawbone. The oral surgeon tried to extract it intact, then he cut it in half to try to take out half at a time, then he broke off the top of the tooth and drilled and pried until he finally was able to get all the parts out of my jawbone, where the roots, in addition to fusing to the bone, had curved in towards each other. Thank God for great anesthetic injections.

But that wasn’t all. We went home, with a packing of gauze in the hole in my jaw, which I was to replace about every two hours. The first time I tried to replace it, blood began flowing, literally, from my mouth. I replaced the packing, bit down hard, and was able to stop the bleeding. But every time I tried to replace the gauze the same thing happened. I started wondering if my blood wasn’t clotting properly, as my platelets were a little low, but they should have been more than adequate, I thought, to stop most bleeding.

By nine o’clock at night I was still bleeding heavily every time I tried to take out a pack. So, we called, that is to say, Kathy called the oral surgeon (since I had to keep my mouth tightly shut on the packing) and told him of our problem. He told us to meet him at the office in about thirty minutes, which we did. I got back in the operating chair, opened my mouth so he could take a look, and he said, “Wow, that’s impressive!” Blood was still flowing heavily and rapidly.

What had happened, apparently, was that with all the digging he had to do in my jaw, he cut a small artery, but the artery had been tightly constricted by the epinephrine in the anesthetic, and so had not bled until later when the anesthetic wore off. He quickly packed the bleeding hole with some stuff we use in the OR called Surgicel, which helps make blood clot. Then he packed the hole with gauze again and I bit down hard, to see if the bleeding would stop. While I was biting down, we were discussing what our next step would be. The arteries are hard to stop; they come right out of the bone and can’t be tied off with sutures, etc. We thought maybe we’d have to go to the hospital and have a radiologist put a catheter in the arteries in my neck, then work it up to the jaw to inject stuff to block the bleeder from inside. I didn’t want to think about that possibility.

Thankfully, when I finally opened my mouth, after ten minutes of pressure on the Surgicel, the bleeding had stopped. We left the clinic and headed for Wendy’s for some food, since I hadn’t had anything to eat or drink all day. Kathy treated me to a Frosty, a milkshake dessert for those of you who may not patronize Wendy’s burger places. The food stayed down and the bleeding stayed stopped! It was a long day. The hole in my jaw hurt for weeks, but didn’t delay our Alaska adventure. I just took lots of Motrin.

You may remember that we are suffering quite a drought around here. I’ve mentioned the water use restrictions that have been imposed upon us. Well, the great blizzard of last March helped the situation a bit, and we had a relatively wet spring, but the restrictions remained, and people around here were very compliant with them. So compliant, in fact, that the water company was losing money! Think about that for a moment; what company can possibly stay in business by selling less and less of its product! So, even as they were telling us that the drought was NOT over, they began removing many or even most of the water use restrictions because they needed the income. Interesting local politics!

In other “local news,” our friendly squirrel, Stubby, the one who bit me last spring, has become a neighbor. She used to live in a large cottonwood tree about 200 yards away, but this spring, shortly after she bit me, she took over a magpie's nest in our back yard in which to raise her pups, or kits, or whatever baby squirrels are called. I hope that’s as close as she gets; we don’t want her family moving into our attic.

Going back to the leukemia, for a moment, I found a follow-up report from the M. D. Anderson Cancer Institute, in Houston, describing recent findings on the people they had used the Cytoxan/Fludarabine/Rituxan chemotherapy treatments on, the treatment protocol that my doc also used on me. Three years after the start of their study, they have found that 75% of their patients who went into remission are still in remission. That is extremely good news, as it would seem to indicate that there is a real good chance I’ll still be in remission a couple of more years from now (since I‘ve already been in remission almost a year now). Hey, that means I can plan a few more trips and spend some more money!

To close, I’ll mention the Veteran’s Administration again, as I did several months ago. They have decided that my disease may be Agent Orange related, based on my Vietnam exposure, and therefore I (and Kathy, on my demise) may be able to get a pension based on medical disability. So, I was invited to go to the local VA hospital for an evaluation recently. What they did was a complete, but fairly brief, physical examination and a few lab tests. It was done very efficiently and right on schedule but the whole process was incredibly impersonal. Most of the folks I interacted with hardly acknowledged my presence as they drew my blood, etc. But now it’s over and I’m just waiting for the paperwork to see what it all will mean to Kathy and me. I’ll pass on the news as it comes in.

And I think that's plenty of “update” for now. I’ll close this note and get in off into cyberspace.

Until later,


Tuesday, August 5, 2003

An Adventure of a Different Kind

It's amazing how sometimes things just snowball out of control and one leads to another. Soon you're somewhere you didn't want to be.

Yesterday was my day off. I got up, about 8:00 or so. I felt a little tired, but nothing too unusual. Since it was a day off, after having worked on Labor and Delivery over the weekend, I had a list of things to do. Most were yard things, so I started getting things done. Nothing too strenuous, just spreading some fertilizer, pulling weeds, replacing a couple of sprinkler heads. That kind of stuff. My new mower is not working, so I took it in to Sears for some work too. I was REALLY tired when I got back.

Kathy wanted to go out for breakfast, so we headed out to try a new place in Littleton, but it was closed. So we went to old reliable, El Tejado. Got the usual, huevos rancheros and chilequiles.

After we got back from breakfast, about noon ( a late breakfast, it turned out to be) I went out to do more yardwork. After about an hour I came back in and was exhausted. I sat next to Kathy and said "Feel my pulse." It was very erratic with a lot of skipped beats. She asked what we should do and I, characteristically said we should wait (which means, usually, wait until it gets better or I die, whichever comes first).

But it didn't get better, and I said that I guessed if I had a patient with this I'd send her to internal medicine to get checked out. So, Kathy loaded me up and off to the clinic we went. Without even an appointment! But I figured my doc could work me in, would do an EKG and tell me it was nothing to worry about and tell me to get out of there

I was right about doing the EKG, but I had the second part wrong. He looked at the EKG, asked a bunch of questions, and the next thing I knew they were loading me up in an ambulance and taking me to the ER. Uh, I hadn't planned on that part at all.

So, we got to the ER. There they did another EKG, drew some blood for lab tests, asked me all the same questions, poked on me for a little while and then left us alone, with me hooked up to a bunch of monitors and with oxygen tubes up my nose. Kathy had been able to ride in the ambulance with us, but had to leave the car at the clinic.

Nothing happened for a while, and I was feeling better, ready to go home, though my heartbeat was still a little irregular.

After about 30 minutes they said my labs looked okay and my EKG was showing nothing serious. But to be sure, they ran some medicine in my IV. It was magnesium sulfate. Epsom salts, to many of you. We use it a lot in OB to stop premature labor and to prevent seizures in women with toxemia in pregnancy. It's also a laxative, if taken orally. I didn't know they used it also for irregular heart beats! Made me feel crappy. Now I know what my patients feel like when I give it to them.

So, the medicine worked, my heart rate straightened out, and now I was even more ready to get out of there. Well, the resident, who had been taking care of me turned my care over to the staff doc, who came in to talk to me. She told me all my labs were normal and that my EKG has straightened out. But, I couldn't go home.

She wanted me to spend the night in the "Obs" (observation unit) area so they could watch me for the night, and to draw more blood. So off we went.

The Obs unit is actually in the ER, not on some quiet ward away from the crowds that appear all night long. I did have a room (fortunately) that had a door that closed. A lot of folks I saw were in open bays with just curtains. It was a scary place with a lot of strange looking folks there. Kathy stayed with me until about 10:30, but there really was no place for her to sleep, so we sent her home (with friends who were there also), and I tried to get to sleep. But it was not easy. They came in periodically to draw blood, to get vital signs (pulse, blood pressure, etc.) and to replace heart monitor leads that fell off as I tossed and turned. I finally fell asleep in the early morning hours, only to have them come back in at 5:30 to wake me up! They drew some more blood, did another EKG and took more vital signs. I decided to get up, put my contacts back in and see about breakfast, since I couldn't sleep anyway.

Breakfast!! Well, they wanted me to have stress test, done on a treadmill later in the morning, so, no breakfast for me. They did bring me a tray of "Clears," you know, the jello, chicken broth and juice tray.

Kathy appeared in the room again before seven. She must have really left home early! We turned on a TV they had brought in to me so we could get some news. But we kept falling asleep.
About 9:00 or so they came in to get me for the stress test. I was wheeled up to the fourth floor where the treadmills are and parked in the hallway. They wouldn't let me walk up there. Strange, I thought, since in a few moments they were going to put me on a treadmill and really give me a workout. But I waited, quietly.

Soon they took me into the room, made me sign a permit that said I might die during the testing process, and hooked me up for yet another EKG, which was still showing a number of irregular beats, but not quite as many as the day before. We started the treadmill, I walked, faster and faster. The doc wanted to get my heart rate up to at least 138, to get a good test. I was able to get it up to about 156 which gave her even more info, all of it good. No chest pain, no EKG abnormalities at all!

So I was finally cleared, after all that testing. Twenty four hours later, after I told Kathy my heart was acting funny, we were back home and competely tired out. My heart is still skipping beats, but not nearly as many as it was yesterday. I'll see my doc again and he'll probably do a 24 hour monitoring just to see what it shows.

And I've learned not to mention an irregular heartbeat unless I'm having chest pain with's just too much trouble!


Tuesday, May 6, 2003

Postscript Number Three; The Squirrel Bite, the Snowstorm, and Some Sad News.

Dave’s Great Adventure
Postscript #3
May 6, 2003
No News Is Good News

Hello again, to my friends who may have been wondering what has happened to me in the last couple of months, in My Adventures With Leukemia. Well, the good news is that there isn’t really too much news to report.

The last time I wrote it was to tell you that we had tried and failed to collect stem cells from my peripheral circulation, while I was in remission. I’m happy to report that I’m still in complete remission and overall doing pretty well, but we still haven’t been able to collect any stem cells, cells which would be used to transplant back into me at some time in the future when I relapse. As nice as my remission is, my docs expect a relapse at some point in my future.

My white count has been very, very slow to recover. In February, when I last reported on my adventures, it was about 2,600 or so (normal is about 4,000- 10,000). That was four months after we had finished my chemotherapy. Now, seven months after the completion of my therapy, my white count has only recovered to 3,300 as of the end of April. That is still too low to collect stem cells. My “transplanter” doc, Jeff Matous, would like to see my counts in the 6,000 range, but would be willing to try to collect some cells if I can get up to the 4,500 level some time in the near future. He wants to get a collection done before my leukemia rears its ugly head again. He still tells me, however, that he expects “a good, long remission.” As before, though, when I ask him to quantity “good long remission” in terms of months or years, he just smiles. Truly, since my therapy was based on a study of only 130 people, and was only completed a year and a half before we started my treatments, nobody really has any long-term data on what to expect. So, I guess it’s unfair of me to try to pin Jeff down and give me a number of months/years my remission should last.

I continue to be amazed at how few infections I’ve had during and since my chemotherapy. With my white count so critically low, and having been that way through the cold and flu seasons, I’ve done incredibly well. I’ve had the one short cold I mentioned to you last January, I believe it was, but nothing else. It is true that I’ve been much more careful around crowds, and I’ve assiduously avoided people with obvious colds ever since we started this “adventure.” And I still wash my hands compulsively, keep my hands away from my face and eyes and try not to bite my fingernails. I have been worried that I’d be getting skin infections, lung infections, and so on. My doc still has me taking some antibiotics a couple times a week to help prevent pneumonia that I might be susceptible to.

The only infection I’ve had was one that surprised me. About two months ago my eye started bothering me one night, while I was sleeping. It felt like there was something in it. It seemed to be better by the morning, so I went about my business, but my eye was watering most of the day. I ignored it, though. This went on for a couple of more days, until I took a really good look at my eye. I had examined it a day or two before and had seen nothing. But this time I saw what was essentially a pimple on my cornea! I had visions (no irony intended) of going blind. I hurried in to see my buddy, the eye doc, who examined me, diagnosed an infiltrate, or really “pus” in my eye, and started me on antibiotic eye drops every four hours. He also told me to stop wearing my contacts, which I had already done. Happily, the infection resolved over about five days and I suffered no permanent effects.

Something else happened that I was sure was going to cause me a serious infection. I think I’ve mentioned our “pet” squirrel (Eichhoernchen) which has been coming up on our deck in the back yard for a few years. She’s relatively tame and eats out of our hands. She even will climb up on my lap when I’m in the back yard and eat off my lap. Well, our friend (whom we call “Stubby “ since she lost the end of her tail to a coyote or something) is pregnant again, as she seems to be every year at this time. Yes, I hear you asking how do I know she’s pregnant. Well, I’m an obstetrician, it’s my job to know these things! Really, what happens each year when she gets pregnant is that her nipples get very large. What also happens is that she gets very hungry. You know how we say that a pregnant woman is “eating for two?” Well, Stubby is eating for about eight or so. She become ravenous (heisshungrig).

Last week, before I went to work, I saw Stubby out there, scavenging through some bird seed which we had put out for our feathered friends. I thought I’d give her some peanuts, since they’d be more nourishing for a poor pregnant squirrel than bird seed. I got a handful of roasted peanuts, in the shell, and walked out on the deck, approaching Stubby. She saw me coming, and as I reached toward her with my handful of peanuts, she lunged at me, so anxious was she to get to the peanuts! What she got, however, was not the peanuts. The closest thing to her, and looking something like a peanut, was the end of my fourth finger. Stubby bit hard and deep!!!! I yelled and jumped back, Stubby scrambled away as fast as she could, and I headed back into the house.

I inspected the damage. I had two very deep cuts, a half inch each, one on each side of the fourth finger of my right hand (my examination hand, if you know what I mean), right where the blood vessels are. The cuts were bleeding profusely. I went to the sink to wash the wounds and let them bleed for a long time to wash out the bacteria. I was wondering, “What kinds of germs do squirrels carry? Do they carry rabies (Tollwut)?” I was thinking that we’d have to kill Stubby to see if she had rabies or else I’d have to get the rabies shots, injections which I hear are not at all pleasant.

But a more immediate problem presented itself. I couldn’t get the wounds to stop bleeding. I kept paper towels on the cuts, but every time I removed them, the bleeding continued briskly. I couldn’t even get it slowed enough to apply a Band-Aid. Finally I tightly wrapped a paper towel around the finger and drove to work with my left hand, thinking that I’d need help to get the thing treated properly. And of course, I did. The staff in the emergency area, after snickering over my description of how I received my wounds, tried to dress them. But the bleeding would not stop for them either. Finally, the doc put a tourniquet (Aderpresse) around my finger, irrigated it with a solution, and then put adhesive strips across the incisions to close them before removing the tourniquet. That worked. They then applied a bulky pressure dressing to the finger, and off to work I went.

So, all day long I was answering the question, “You did what?!”

The doc gave me some pretty powerful antibiotics since we didn’t know what germs squirrels carry around with them. And he didn’t seem at all concerned about rabies, since the squirrel wasn’t acting abnormally, so Stubby’s life was spared. I still feed her, but now I’m much more careful about letting my fingers get close to her mouth. I’m very lucky that she didn’t bite my second or third fingers, my “exam fingers.” With the pressure dressing I had to wear, I wouldn’t have been able to do any gynecological exams and would have been out of business for a couple of days. And I remain amazed that the wounds didn’t get infected. Animal bites are probably among the most contaminated wounds you can get.

So how am I doing? Overall quite well. I’m still working four days a week in our clinic and doing a couple of daytime shifts each month on Labor and Delivery on weekend days. I feel tired a lot. I’m not sure what that’s all about. I get short of breath more than I think I should, but I get through the days okay. If this keeps up I may have to go back to my Internist to see if anything else is going on.

But my outlook is much better than it was for so long. I don’t worry about my disease every day like I used to. I’ve even started making longer term plans again. I think I’ve mentioned to most of you that I was thinking about taking a trip to Antarctica next January. Well, we’ve made the reservations. And I’ll be taking Kathy to Alaska in June/July for a 12 day vacation, seeing things we’ve talked about and wanted to do for many years. I’ve now passed the first anniversary of the date I got my diagnosis and I look forward to the first anniversary of my remission in a few months. So far, so good!

Hey, I found out something interesting recently, about one of my chemotherapy drugs. One of the drugs which I’ve mentioned is Fludara, or fludarabine. It’s very active against lymphocytes and is commonly used in treating leukemia. But how it was developed is, I think, interesting. It seems that when doctors were studying patients with severe combined immunodeficiency (Immunitaet-los?) syndrome (people like the “Bubble Boy), they found that they had an abnormal chemical in their circulation which destroyed white cells. They were able to isolate the chemical and then synthesize it, and it became a new drug in the treatment of leukemia, Fludara!

I also found out something else about my disease. The last time I had a bone marrow biopsy done, Jeff ordered a chromosome study done on the cells. It seems there are different chromosomal aberrations seen in chronic lymphocytic leukemia, and they all are essentially different diseases, yet they all manifest the disease in the same way, with an elevated white count. Probably they should all be treated differently, as they can act differently, but this is a brand new finding and the clinicians (those who treat the disease) haven’t caught up with the researchers on this yet, and so they don’t know how to treat the different chromosome patterns. It turns out that my chromosome pattern was a normal 46 XY pattern. That may be good news, as folks with a normal pattern have a life expectancy of about 10+ years, as opposed to the six or so years that the average life expectancy is. Some of the abnormal patterns result in a life expectancy of only two or three years. Anyway, I say that MAY be good news, as my chromosomes were studied at a time when they really couldn’t find any leukemic cells in my marrow anyway. So it may not have been an accurate representation of the cells of my disease. We’ll probably have to repeat the chromosome study again when/if my disease relapses.

I think I had mentioned previously that we are in quite a drought here in Colorado. Our dry summer last year, with all the forest fires, was followed by a pretty dry and warm winter. That is, until March! On March 17th, our son Jeremy and his girlfriend Marisa flew into Denver for Spring Break. They wanted to see Colorado during their vacation from the college grind. That night it started to snow. And it kept snowing for days. By the time it stopped snowing we had three to four feet of snow on our driveway and there were places in the mountains where they had over eight feet of snow. Many, many roofs collapsed in the Denver area from the weight of the snow. The snow was so deep in our neighborhood that I could not get out to go to work. for three days. Finally I had to hike out of the neighborhood to a main street so I could be picked up to go to work. Thankfully, later that day, a snow plow came through and cleared a path out for us. Only then did Jeremy and Marisa get to get out of the house and see just a little of Denver. They never did get to see the mountains. What a great Spring Break! Actually we were glad to have them here. We had someone to play card games with while we were housebound and someone to help us shovel the snow off our driveways and sidewalks.

The huge snowstorm has alleviated a bit of our drought and has replenished our water supplies in the area to some extent, but we’re still under drought water restrictions for the coming summer months, some of which, make no real sense. I understand why they want us to restrict the amount of water we use to wash cars and water our lawns with, but there are other water laws that seem silly. The law says we have the right to use our water one time only. In other words, we can’t take a bath in the tub and then water our plants with the tub water. Or we can’t cool our drinks with ice cubes and then put the cubes in the watering can to do the same. I think that’s wise water conservation. The water authority wants us to put the water back in the drain so they can reuse it. However, I don’t think there are enough police in Denver to track down all the scofflaws who reuse some of their water to water their plants or flush their toilets with bath water.

I would like to finish up this message with some sad news. First, last month Kathy’s mom died, rather suddenly, of a stroke (Hirnschlag). She had been in relatively poor health for a number of years but this was still a surprise and shock to all of us. She was 84 years old. We gathered together in Stillwater, Oklahoma last month for her funeral and to help Kathy’s 92 year-old father get her affairs in order. He’s a lost soul right now. They had been married for 62 years!

Also, the week before Kathy’s mom died, my colleague, Laurel Harkness, who had been fighting breast cancer for a number of years died also. I have mentioned Laurel in my letters from time to time. She helped out in my clinic last year when I was out with my chemotherapy. In fact, we saw each other in the chemotherapy rooms and one day we even sat side by side getting our infusions. But her chemotherapy finally stopped being effective and she developed many metastases to her liver last December. She died at home a few weeks ago at the age of 44, I believe.

And that’s all the news from the Denver suburbs for now. I’ll let you know if there are any changes if/when there is anything to report.


Friday, February 21, 2003

Postscript Number Two; Searching for Stem Cells!

Dave’s Great Adventure
February 21, 2003
Postscript #2
Stem Cells???

Hello again to all my friends around the world who may be interested in reading about my adventures with leukemia. A few things of interest have happened over the past few weeks so I thought I’d send out an update on our activities.

First, at the end of my last message I mentioned that I had gotten a cold, despite my extreme precautions at avoiding crowds, sick folks, doorknobs and money handling. I feared that it might develop into something worse than a common cold, like bronchitis or pneumonia, since my antibody producing cells had, for the most part, been severely damaged by the months of chemotherapy. Well, I’m happy to be able to report back to you that the cold wasn’t all that bad. It lasted about seven days, no more than a usual cold. During that time I was taking a lot of vitamin C, echinacea, the new cold medicine Zicam and zinc, for whatever they’re worth, but they seem to have helped. I’m becoming a believer in some of these homeopathic remedies.

I told you last time that we were trying to collect some of my stem cells while I was in my “fantastic remission” for use in a possible future transplant. Now, my employer/ insurance company denied my doc’s request to have this procedure set up, citing the fact that they didn’t feel it was an “evidence based” treatment. That led to a lot of things happening.

I was called by a person who worked on my request, the very same person who signed the letter denying the treatment, and she suggested that I appeal the decision immediately! I found this to be a bit curious and asked her why she recommended this. She said that “given my circumstances” that it might be reversed. She didn’t explain what she meant by that and didn’t say the decision would, in fact, be overturned, but it gave me the definite impression that if I pushed the issue, the company was willing to give in. So I immediately appealed the decision and proceeded with plans for harvesting my stem cells. The plans, unfortunately included getting another bone marrow biopsy and a whole bunch of blood tests. I didn’t count on another bone marrow biopsy!

But I got the blood drawn for all the tests and endured yet another bone marrow biopsy, which this time will include testing the chromosomes on my marrow cells. We set up the “apheresis” to collect the stem cells for last Monday through about Wednesday of this week, all the time expecting that the insurance company was going to come through for me. I also had to start giving myself more shots of Neupogen, the same stuff I was injecting last October when my white count dropped to 1,000. This time, however, I had to give myself three times as much each day.. The five day course of the medication cost about $4,000! It is used to force stem cells out of my marrow into the bloodstream where they can be collected by the “apheresis” machine, basically a centrifuge which sorts cells by their size and weight.

While we were doing all this I got a long letter from the company explaining, again, why they were turning down our request. That was an unexpected surprise, as I really thought they were going to help me. In addition, by now I found out that my guess that the procedure would cost about $6,000 or so was way off. In fact, it’s more like $16,000! The letter explained that I had one more appeal that I could use if I wanted to. Well, I wanted to! Otherwise I told Kathy that I’d have to put her out on the street selling muffins and lemonade to help pay for the collection. I’ll get back to that last appeal later.

I started giving myself the Neupogen last week and immediately noticed that the side effects were much more noticeable than with the smaller dose I had used earlier. There was a lot of weakness, fatigue, and bone pain as the marrow started cranking out lots of white cells and, hopefully, stem cells. My bones actually throbbed in pain when I moved around very much. There’s always something new, isn’t there? I was, however, able to work through the side effects for the most part. They didn’t really get bad until almost a week into the therapy. By then I was starting the apheresis.

I had decided that I was going to get the stem cells collected whether the company paid for it or not. I needed to collect them now, not later when my blood was again filled with leukemic cells. So, we went ahead with the plans for the apheresis, at $4,000 a day. Yes, $4,000 a day! I was scheduled to start last Monday.

At about 6:45 in the morning we showed up at the hospital across the street from where I work; it’s called Presbyterian-Saint Luke’s Hospital. We went to the apheresis room where this contraption is located. The machine is about four feet tall, four feet wide and about three feet deep. It’s an impressive bit of equipment. The medical techs drew some blood for various tests and then began hooking me up to the tubing. Now, this is nothing to be taken lightly! They put in two very large intravenous needles, one in each of my arms. One to take blood out and send it to the machine, the other to put the processed blood, from which the stem cells had been extracted, back in my other arm. Since they had bare needles in my arms, not the plastic “intracath” tubing that I’m used to, I could not move my arms very much at all. If I did, the tip of the needle could move and penetrate my vein! The procedure takes about four hours!

So, I was relatively immobile. The problem was, they had told me to drink a lot of fluids before the procedure so they could get the access lines in my veins. Well, what happens after you drink a lot? I have had experience with this during my chemotherapy sessions, and perhaps you have had experience with this after too much beer or lemonade. Of course, after drinking a lot of fluids, I had to “excrete” a lot of fluids. But my hands were not available to help myself with this problem. And I couldn’t move around very much. And the folks running the machine were not nurses but medical techs. What to do? Well, they said they would step out while Kathy helped me with this “problem.” So Kathy got to “play nurse” with me, undoing my pants and helping me point “Rover” in the right direction. We did okay with this process, but I’d hydrated myself so well that an hour later I needed to do it again! So Kathy again came to my aid.

I’d been on the machine about three and a half hours when one of the techs came in and said we’d have to stop the collection. It seems that one of the tests we had done that morning showed that my stem cell count was too low to be collecting them! There is a test which I’d never heard of before, called a CD-34 assay, which measures the level of stem cells in one’s blood. The level should be about 10 or greater to be doing the collection efficiently. My stem cells were only at 3. Much too low. The doc who was running the show that day ( my doc was skiing that morning; there was great fresh snow in the mountains!) said I should keep giving myself the Neupogen shots and we would try again the next day, but we would get the CD-34 test results back before we put the machinery in action. That would keep us from using up $4,000 of machine time for nothing. The Rocky Mountain Cancer Center, where the “transplanters” like my doc, Jeff Matous work, gave me another day’s worth of Neupogen (about $1,000 worth) for free and we went home, disappointed.

The next day we again showed up at about 6:45 but instead of going straight to the apheresis machine we did a CD-34 assay. It takes about three hours to get the test back so we didn’t find out until after ten that it had gone up, but only to 5. My doc, who had returned from skiing, was encouraged by the rise and said we should keep giving the Neupogen in hopes of getting up to 10. So they gave me another $1,000 worth of Neupogen and we went home again. I decided that if I wasn’t going to be on the machine I might as well be working. I went by the my clinic and asked if they needed any help and of course they did, so I added myself into the afternoon schedule, then went home to change clothes and take a nap.

I slept for just a short time, but when I awoke to go to work for the afternoon, I felt just awful. The Neupogen effects were really kicking in. My bones, especially my breastbone, were hurting much more, and I felt extremely tired. But I went in to work, and though we had a full clinic, I managed to get through it. But I was exhausted when I got home.

The next day was a big day. We were to be at the hospital at the usual time, while it was still dark. We had to get the blood drawn and then wait the usual three hours to find out the results. Meanwhile, a committee that was going to evaluate my final appeal on whether the company would help pay for the collection was meeting a couple of hours later, across town. I had written a couple of letters to the committee explaining why I thought they should pay for it, but I had been told I could also attend the meeting if I wanted to. I really didn’t want to. I was feeling bad and didn’t want to answer questions at a committee meeting, not knowing if they’d be hostile or friendly, but I figured I should be there so I could defend my position as to why I thought the company should pay.

So after giving up another blood sample, we drove across town with my letters and some medical literature in support of the collection. I went to the clerk's office and explained that I really didn’t feel well, but I thought it would be best for me to at least be there when the meeting was held. She agreed and told Kathy and me where to sit, near the conference room. A few minutes later she invited me into the room to meet the committee. I didn’t know any of the folks there, but I recognized their names as two Kaiser Permanente doctors and an administrator. I was prepared to answer questions, but was taken by surprise when they told me to make my “presentation.” I hadn’t planned on making a presentation.

But I started talking, telling them what I had learned about leukemia, what the possible treatments were, why there was no real “standard” treatment, and why I thought collecting my stem cells now was as reasonable a plan of treatment as any other. It didn’t hurt my case at all that I seemed to know a whole lot more about leukemia and its treatment than they did. I made my case as best I could and then answered their questions. They told me that they would have an answer for me in about five days. I left, not knowing what they would decide, but I thought that they seemed open to the possibility of doing the stem cell collection. We went back across town, back to the hospital to check on my blood test. It had gone up again, but only to 6. They said to keep going. I got another $1,000 worth of Neupogen and went home and went to bed.

The next day, Thursday, Kathy and I again went to the hospital, which is in downtown Denver, to get my CD-34 test again. By then my doc had decided that if it went up at all we’d start collecting again, so Kathy and I waited around the hospital until the results were back, expecting that I‘d be on the machine before long. Bad news. It went down! To just 3 again.

My doc now decided that my bone marrow was just too beat up to make stem cells right now, even though it had been four months since my last chemotherapy, so we’d have to postpone the collection for a couple of months or so. Man, that was a disappointment for several reasons. First, I’d wasted four days hoping to get the cells collected. Secondly, though I hadn’t yet had to pay anything, we had used up about $7,000 worth of Neupogen, $4,000 of apheresis machine time, plus we’d been doing blood tests every day which I hadn’t yet paid for and I had heard I was probably going to have to pay for the bone marrow biopsy too. We could potentially be out thousands of dollars and we hadn’t really accomplished anything except gathering the very few cells we had gotten on the first day. What helped a lot, however, was that the docs said they would waive their fees for me, the hospital told me that since I didn’t have insurance for this they would “only” charge me $2,000 a day for the apheresis procedure, and that the clinic had given me three doses of the Neupogen for free, about $3,000 worth. I didn’t know what all the blood tests would cost, however.

That brings us up to today. I went back to work today, still feeling pretty tired from all the Neupogen I’d been giving myself. We had a relatively light day so I did okay despite my fatigue. The phone rang at about 10:30. It was the clerk from the appeals committee. She said that the committee had approved my request to have the company pay for the stem cell collection after all! That was great news. However, the bad news is that I don’t have any stem cells to collect right now.

So, I have been in contact with the transplant clinic again. We plan to try the apheresis again in two or three months, when my marrow will presumably have more stem cells. But we have to start from the beginning. I’ll have to have another bone marrow biopsy, all the lab tests will need to be done again, and I’ll have to start injecting another $4,000 worth of Neupogen. It’s just incredible to think that each injection is almost $1,000.

But now we have a plan in place, and I’ll have help in paying for the process. I don’t mind the wait too much, as long I don’t somehow relapse during that time. And that is not expected to happen. We’ll keep checking my white count each month until the next time we try to harvest the cells to see what they do. Oh yeah, I mentioned in my last letter that my white count had dropped down some more, unexpectedly, to around 2,200 or so. Well, after seven days, and $7,000 worth of Neupogen, my white count is up to 27,000! (Normal is up to about 10,000 or a bit more) I guess I’m not at too much risk of infection right now.

Well, that’s our latest adventure. And it’s plenty long enough so I’ll close while I still have a few readers who haven't drifted off to sleep. But, as Arnold Schwartzenegger says, in the movie “The Terminator,” “I’ll be back!”

Until later,