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?
AT MY FUNERAL
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
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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?
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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?
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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!
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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?
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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?
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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?
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“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.”
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“...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.
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“Unless you assume a God, the question of life’s purpose is meaningless.” Bertrand Russell, well-known atheist.
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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)
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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
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“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.
Dave
Thursday, November 13, 2003
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,
Dave
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,
Dave
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