Dave’s Great Adventure, Book 2
Chapter 2, Verse 3
February 19, 2004
Back on track?
“Omigod, that’s not an Optiflow!”
It has been very interesting for me to be, as it were, on the other end of the stethoscope in the last couple of years. I’ve mentioned in past letters little things that haven’t gone as they should, things that many patients may not have picked up on like discrepancies in drug doses, pre-meds, etc. But today, anyone would have noted that things weren’t going exactly as planned.
Kathy took me in to have them change the dressing on my “central line,” the catheter that goes into the upper chamber of my heart. That’s all we were to do. But there was great confusion for some reason about why I was there and who was to do what. After waiting for a while (who doesn’t wait when they go to the doc’s office?) we got to where we needed to be, the same place we’ve gone each time over the last week. My nurse coordinator, my doc, the infusion nurse and another gal who I took to be someone in training, gathered in the room. I took off my shirt to show them the results of yesterday’s surgery. That’s when my nurse uttered the phrase above. I sensed it was not a good thing that I didn’t have an Optiflow.
The four of them kinda stepped back, looked at each other and then again at the tubing protruding from my chest, a bit as if it were an alien creature emerging from my skin. I asked plaintively, “This doesn’t mean we have to replace it, does it?” There were some muffled discussions, but the upshot was that they could make do with the catheter that had been placed. I have the impression that I have a whole lot more tubing than I need.
So, Jeff was there today. We talked about my cough, and I seemed to be doing a lot better. He listened to my chest and said we could go forward with the Rituxan. Great news to me, though I hadn‘t expected to get any chemo today. But, I didn’t want to put this stuff off. My infusion nurse was an older guy today, Rich is his name. He set up the Rituxan and said, “Man, you’ve been getting a whole lot of pre-meds you don’t need.” I agreed. He gave me some Tylenol and Benadryl to take orally, then started the infusion. We skipped the steroids, Ativan, and Anzemet. I didn’t miss them. Three hours later we walked out with no problems and seemingly back on track. We go back tomorrow to see if I can get the cytoxin or not. It will depend upon how my cough is doing and the results of a test we did today to look for dangerous cold viruses which can do bad things to chemo patients. And that’s today’s report.
..........................................................................
Since this was a very short report, it gives me some space to launch into my random philosophic musings. What I‘m thinking, this time, is that I’m extremely glad that the treatments seem to be working, and I’m extremely glad to be able to be working on a plan for the future, when the treatments will, at least in theory, not work any more. But sometimes I think, “What’s the point?”
We went through multiple rounds of very expensive cutting edge therapy starting about 20 months ago. This was devised to keep me alive long enough to get to where we are today, collecting some stem cells so that I can again be rescued at some point in the future. At that point, I’ll be brought back to the stage where I am today, just to resume the merry go round. And this round of therapy is costing probably $30,000 or so!
Now, it’s not that I’m anxious to check out or anything. I’m very happy to be alive and thereby be able to be with Kathy and explore the wonderful world we have around us for a while longer, but the bottom line, at some point, is going to be the same. We’re just treating me with this and with that to keep me alive long enough to need more treatments in the future. At some level that doesn’t seem to make sense, and is just a lot of expense. As I’ve told my friends at work, I’m a “bottom line” kind of guy. What’s the bottom line, and why don't we cut to the chase? So far, so good, and I feel well, but when life stops being fun, well, why bother?
Nothing we are doing, or are ever going to do, will “save” my life. We are trying to prolong my life, but to what end? If it is just to allow us to do more treatments, at great cost, then, again, what's the point. But, I guess, that’s what we do in medicine, isn’t it. We don’t “save” lives, we try to prolong them. When I speak of having “saved” a baby’s life by doing an emergency C-section when it was at death’s door, what I really did was to prolong its life, perhaps by seventy years or so, if the child is lucky. And when I’ve “saved” a mother’s life by removing the uterus that was bleeding her near to death, I again have merely helped prolong her life. The death rate for humans is still 100%, is it not (less one person, depending upon your religious persuasions)?
So, in my case, and many others, it’s just like my oncology doc friend said a few weeks ago. The oncologist’s job is to keep his patient alive long enough to die of someone else’s disease.
So, that brings me to a SPECIAL DGA EXTRA CREDIT READING ASSIGNMENT!!!
A few months ago when I was immersed in despair and doubts about life, its meaning, and the meaning, if any, of my life, my brother Doug, way out yonder in South Carolina, told me of a great little book I ought to read. This book, The Lives of A Cell, was written by a physician named Lewis Thomas and I can recommend it to all of you as well. The book is actually a collection of short essays he wrote for the New England Journal of Medicine in the ‘70s. There is a brief essay which I’d like to share with you, called “Death in the Open.” It’s only three pages in the book, and will be a quick and, hopefully, interesting read for you. It just makes a lot of sense out of the imponderables of life and death. (It has been very slightly shortened in this transcription.)
DEATH IN THE OPEN
Most of the animals you see dead on the highways near the cities are dogs, or a few cats. Out in the countryside, the forms and coloring of the dead are strange; these are the wild creatures. Seen from a car window they appear as fragments, evoking memories of woodchucks, badgers, voles, snakes, sometimes the mysterious wreckage of a deer.
It is always a queer shock, part a sudden upwelling of grief, part unaccountable amazement. It is simply astounding to see an animal dead on the highway. The outrage is more than just the location; it is the impropriety of such visible death, anywhere. You do not expect to see dead animals in the open. It is the nature of animals to die alone, off somewhere, hidden. It is wrong to see them lying out on the highway; it is wrong to see them anywhere.
Everything in the world dies, but we only know about it as a kind of abstraction. If you stand in a meadow, at the edge of a hillside, and look around carefully, almost everything you can catch sight of is in the process of dying, and most things will be dead before you are. If it were not for the constant renewal and replacement going on before your eyes, the whole place would turn to stone and sand under your feet.
There are said to be a billion billion insects on the earth at any moment, most of them with very short life expectancies by our standards. Sometimes it has been estimated that there are 25 million assorted insects hanging in the air over every temperate square mile, in a column extending upward for thousands of feet, drifting through the layers of atmosphere like plankton. They are dying steadily, some by being eaten, some just by dropping in their tracks, tons of them around the earth, disintegrating as they die, invisibly.
Who ever sees dead birds, in anything like the huge numbers stipulated by the certainty of the death of all birds? A dead bird is an incongruity, more startling than an unexpected live bird, sure evidence to the human mind that something has gone wrong. Birds do their dying off somewhere, behind things, under things, never on the wing.
Animals seem to have an instinct for performing death alone, hidden. Even the largest, the most conspicuous ones find ways to conceal themselves on time. If an elephant missteps and dies in an open place, the herd will pick him up and carry the body from place to place, finally putting it down in some inexplicably suitable location. When elephants encounter the skeleton of an elephant in the open, they methodically take up each of the bones and distribute them, in a ponderous ceremony, over neighboring acres.
It is a natural marvel. All of the earth dies, all of the time, in the same volume as the new life that dazzles us each morning, each spring. All we see of this is the odd stump, the fly struggling on the porch of the summer house in October, the fragment on the highway. I have lived all my life with an embarrassment of squirrels in my back yard, they are all over the place, all year long, and I have never, anywhere, seen a dead squirrel.
I suppose it is just as well. If it were otherwise, and all the dying were done in the open, with the dead there to be looked at, we would never have it out of our minds. We can forget about it much of the time, or think of it as an accident to be avoided, somehow. But it does make the process of dying seem more exceptional than it really is, and harder to engage in at times when we must ourselves engage.
In our way, we conform as best we can to the rest of nature. The obituary pages tell us the news that we are dying away, while the birth announcements in finer print, off at the side of the page, inform us of our replacements, but we get no grasp from this of the enormity of scale. There are 3 billion of us on the earth [note: in 2004, it is 6.3 billion], and all 3 billion must be dead, on a schedule, within this lifetime. The vast mortality, involving something over 50 million of us each year, takes place in relative secrecy. We can only know of these deaths in our households, or among friends. These, detached from our minds from the rest, we take to be unnatural events, anomalies, outrages. We speak of our own dead in low voices; struck down, we say, as though visible death can only occur for cause, by disease or violence, avoidably. We send off for flowers, grieve, make ceremonies, scatter bones, unaware of the rest of the 3 billion on the same schedule. All that immense mass of flesh and bone and consciousness will disappear by absorption into the earth, without recognition by the transient survivors.
Less than a half century from now, our replacements will have more than doubled the numbers. It is hard to see how we can continue to keep the secret, with such multitudes doing the dying. We will have to give up the notion that death is catastrophe, or detestable, or avoidable, or even strange. We will need to learn more about the cycling of life in the rest of the system, and about our connection to the process. Everything that comes alive seems to be in trade for something else that dies, cell for cell. There might be some comfort in the recognition of synchrony, in the information that we all go down together, in the best of company.
...... Lewis Thomas died in 1993.
Thursday, February 19, 2004
Wednesday, February 18, 2004
The Best Laid Plans of Mice and Men....
Dave’s Great Adventure, Book 2
Chapter 2, Verse 2
February 18, 2004
“... gang aft aglay...”
Monday February 16th was a Rituxan day. I’m going to get four total infusions of just Rituxan while we’re “priming” my marrow for the collection. This drug is, again, a pure antibody against one specific protein that CLL cells have. It attaches to that specific protein and then my immune system, if it’s working right, will attack and destroy the cell, thinking it’s a foreign cell. I mentioned a long time ago that Rituxan is actually a murine antibody. That means it’s derived from mouse cells. Yeah, mouse cells. Yet I keep going down in the basement and setting traps for those little guys who come in out of the prairie behind our house in the winter looking for some warmth, while their cousins are producing antibodies to try to prolong my life. Like I’ve said, many times; life's not fair.
We had to get to the Rocky Mountain Cancer Center by 8AM for my appointment. Now, those of you who know my wife know that we NEVER get anywhere late. We usually get places quite early. Like, to the loading gates at the airports about two hours before loading times! Monday was about the same at the RMCC. We got there at about 7:30 and had to wait for the staff to show up to check me in.
Then we went to the infusion area. Today my nurse was a nice young gal named Krista, a very young nurse. I think she’s a rookie. And I think someone told her I was a doc, so she was acting a little nervous and intimidated, even though I didn’t growl, scowl or even mention my profession. Krista had to start my IV today.
I’m surprised that the nurses at the RMCC don’t seem to like to start IVs, and don’t seem especially expert in the skill. I think a lot of their patients already have central lines of some kind and all they have to do is plug the IV into the hub of the central line and it’s all hooked up. It takes more preparation if you have to put in an IV line, however.
Now, I really have great veins. That is, if you’re into veins, as nurses should be. When warm, they bulge out all over the place. Rarely do nurses miss my veins when starting IVs or drawing blood. Back in ‘02 when I was getting my first series in infusions at Kaiser, I found that every time I went in to get my drugs, the nurses would apply a warm moist heating pack before starting the IV, to make the veins stand out even more, making it easier for them, and me too, frankly. They do that routinely, for everyone.
So, last Thursday when I went in to the RMCC, it was 6 degrees (-14 C) outside. I was cold, and when one is cold, your veins collapse and blood is shunted to the interior of your hand and arm conserving warmth. I expected the heating pad treatment, especially since it was cold, but instead, my nurse, a real nice gal named Kelly, took a look at my hands and arms and said, “You’ve got lousy veins!” Uh, excuse me, but when it’s 6 degrees outside everybody has “lousy veins.” Kelly didn’t even try to put in an IV. She called for Patty, whom she said was their expert in starting IVs.
Patty came over, looked at my arms and hands and agreed with Kelly that my veins were bad, but she applied a tourniquet and found something she thought would do. But she didn’t like it...too many “nubbies” she said. But she managed to get a small IV line started in a vein that normally is about the size of a ten penny nail. It shouldn’t really have been hard at all.
So, on Monday, Krista is getting ready to start my IV. I had learned by my previous experience and was wearing warmer clothing and Kathy drove in so I wouldn’t be having to hold onto the cold steering wheel. My hands were warm and my veins were lookin’ good. But, Krista was, as mentioned, a bit nervous. She kept looking for a suitable vein. I suggested using a vein on the back of my left hand that looked about the size of a pencil, which, really, anyone should be able to get into, even without a heating pad. Krista started preparation. She was pulling out a small IV needle, a piece of tape, an alcohol swab. I was looking around...I didn’t see an IV pole, any bags of fluid, or the multiple pieces of tape that are usually used to hold the IV in place when you finally get it there. But, I figured, she really couldn’t do too much harm.
She started placing the IV. She got it close to the vein, which is really huge by IV standards. She even got the tip of the needle in, but that’s about all. A little blood came back out, but not much. She couldn’t advance the needle, so I guess she was going to see if she could expand the vein or something by pushing in some fluid from a syringe she had. “Pop” went the vein! Krista called Patty for help. Patty went back to my other arm and quickly got a line in, but again mentioned my “bad veins,” “bad valves” and such. She attached the syringe of fluid since there still was no IV set up.
So we went into one of the infusion rooms, I read a bit while we waited for Krista to come in, and after a bit she came in with the IV setup, the drugs and the pump. We talked a little about the drugs and I’m happy to tell you that I was able to talk her out of giving me the Ativan, the sedative tranquilizing drug. It was ordered to be used “as needed” anyway. And I didn’t think I needed it. Krista got a lot of help from Kelly in setting up, the pump, setting the infusion parameters, etc. That’s okay for Rituxan, ‘cause everybody’s got to learn their stuff somehow, but when I get the Cytoxan (cyclophospamide) later this week, I want someone with a little gray in their hair. If that goes in wrong, too fast, etc., well, that’s where you could encounter some pretty serious side effects.
So, they started the drugs, the Benadryl knocked me out in a hurry, and I went to sleep, as expected. But without the added Ativan, I was awake in about two hours and feeling pretty well. We were out by a little after noon. As we left, Kelly, noting that I’ll have a central line by the next visit, said that the next time everyone will want to take care of me ‘cause I’ll be so easy. Hmmm. I didn’t think I was hard to deal with at all, but I guess the absence of that line makes a big difference up there.
Lunchtime! Kathy took me to a little place near the barbeque place we went a few days ago that is said to have the best burgers in Denver, The City Grille. Now, I don’t usually trust places that spell “grill” with an “e” on the end. Usually that means that there’s going to be a lot of fru-fru, or that the menu will have been “Californicated,” as the locals like to say. But, this place had good food, real burgers without the guacamole-picante-cilantro blue cheese spread and gorgonzola wine sauce on top, or whatever. We’ll probably go back after some other treatment in the near future.
And, for the rest of the day, I felt well, not drowsy as I had after the first time, when I had been given the Ativan. I’ll remember that.
I felt well again the next day, Tuesday, not so flushed and tired as I had after the first Rituxan infusion. Kathy and I did a few chores and then went to a movie, “Mystic River.” A very well done movie, moving and suspenseful. We’ll not be able to do much in the next couple of weeks, so we wanted to get things done while I was still able to get out. Meanwhile I was dreading the next morning when we would have to get up early, about 5AM or so, to get down to the Cardiovascular Lab at Presbyterian-St. Luke’s Hospital for the placement of the double lumen (a tube within a tube) catheter in my chest.
But, as Robert Burns said, as “translated” from the original Scottish, “The best laid plans of mice and men often go awry.” The little scratchy throat I’d had a few days ago developed into a deep cough. I began coughing Tuesday afternoon, and Wednesday morning, when I went to PSL to have the central line, the catheter placed, I was still coughing deeply. I wondered if they’d put it in, if I was sick. But after talking to the folks there, they went ahead with the procedure. “Don’t cough while I’m placing the catheter in your jugular,” said Doc Jamboz. I assured him I wouldn’t. And he got the thing inserted, tunneling through the chest wall up to the jugular, and got the tip of it placed in the upper chamber of my heart within a few minutes. It was just about painless, too, except when he put a couple of stitches in my chest without anesthesia. But, the drugs they had put in my IV made even that tolerable.
But I was still coughing. I really wondered if I shouldn’t start some antibiotics if I were to get two more doses of chemotherapy in the next two days. Doc Matous’ office is just a couple of blocks from PSL, so Kathy and I walked over there to see if I could ask Jeff about the need for antibiotics or something. This is where things began to go awry. Jeff wasn’t in, so his nurse had me see one of his partners, who listened to my chest, ordered an X-ray and postponed the next two days of the chemotherapy!!!
Now it really makes sense to insure that I’m healthy before I get drugs which are going to seriously damage my immune system. But I didn’t expect him to stop the therapy; I thought he’d just add more drugs to protect me. But, now the whole process of the collection, where each appointment depends upon the one before it, is on hold. I have appointments for each of the next four weekdays to be reevaluated, have the dressings on the catheter changed and to see when we can restart the chemotherapy regimen. I hope it will be soon!
So now I’m at home and my chest hurts a little, I don’t want to move my right arm because it makes the insertion site painful, and I’m upset ‘cause the collection process isn’t going forward as we had planned. I’m hopeful that this cold will blow over rapidly and we can get on with this stuff. I’m forcing fluids, taking echinachea and sucking on zinc lozenges, for whatever they’re worth. I’ll keep you updated.
Meanwhile, my sister Diane, out in Crockett, Texas, wrote that she was the person who ordered the Irish cap for me to keep my noggin warm when the hair falls out. Thanks Diane. I owe you one.
And I had a question about my patient and friend, Marlene, who now has CLL too, and recently lost her son and brother-in-law. I made it sound as if they had died together, in a car wreck, or something. In fact, they died in separate incidents a week or two apart. Her 41 year old son died suddenly of a heart attack, and her brother-in-law died of a seizure. I hadn’t mentioned that she lost her husband last summer! I called her last week. “God is testing me,” she said. This wonderful woman, who had a Mass said for me in her church, told me that she has been so worried about ME! I’m simply amazed that she can think of anyone else when she’s had so many personal tragedies in just the last few months. It shows you what a wonderful person she really is.
I think I’ve written enough for now. I’ll attach another picture from Antarctica for you, a picture of a friend we made on South Georgia Island!
Until later,
Dave
God, give us the grace
to accept with serenity
the things that cannot be changed,
courage to change the things
that should be changed,
and the wisdom to distinguish
the one from the other. Amen.
---Reinhold Niebuhr
(this is the original, uncopyrighted version
of this famous verse, which was written by Rev.
Niebuhr in about 1943)
Chapter 2, Verse 2
February 18, 2004
“... gang aft aglay...”
Monday February 16th was a Rituxan day. I’m going to get four total infusions of just Rituxan while we’re “priming” my marrow for the collection. This drug is, again, a pure antibody against one specific protein that CLL cells have. It attaches to that specific protein and then my immune system, if it’s working right, will attack and destroy the cell, thinking it’s a foreign cell. I mentioned a long time ago that Rituxan is actually a murine antibody. That means it’s derived from mouse cells. Yeah, mouse cells. Yet I keep going down in the basement and setting traps for those little guys who come in out of the prairie behind our house in the winter looking for some warmth, while their cousins are producing antibodies to try to prolong my life. Like I’ve said, many times; life's not fair.
We had to get to the Rocky Mountain Cancer Center by 8AM for my appointment. Now, those of you who know my wife know that we NEVER get anywhere late. We usually get places quite early. Like, to the loading gates at the airports about two hours before loading times! Monday was about the same at the RMCC. We got there at about 7:30 and had to wait for the staff to show up to check me in.
Then we went to the infusion area. Today my nurse was a nice young gal named Krista, a very young nurse. I think she’s a rookie. And I think someone told her I was a doc, so she was acting a little nervous and intimidated, even though I didn’t growl, scowl or even mention my profession. Krista had to start my IV today.
I’m surprised that the nurses at the RMCC don’t seem to like to start IVs, and don’t seem especially expert in the skill. I think a lot of their patients already have central lines of some kind and all they have to do is plug the IV into the hub of the central line and it’s all hooked up. It takes more preparation if you have to put in an IV line, however.
Now, I really have great veins. That is, if you’re into veins, as nurses should be. When warm, they bulge out all over the place. Rarely do nurses miss my veins when starting IVs or drawing blood. Back in ‘02 when I was getting my first series in infusions at Kaiser, I found that every time I went in to get my drugs, the nurses would apply a warm moist heating pack before starting the IV, to make the veins stand out even more, making it easier for them, and me too, frankly. They do that routinely, for everyone.
So, last Thursday when I went in to the RMCC, it was 6 degrees (-14 C) outside. I was cold, and when one is cold, your veins collapse and blood is shunted to the interior of your hand and arm conserving warmth. I expected the heating pad treatment, especially since it was cold, but instead, my nurse, a real nice gal named Kelly, took a look at my hands and arms and said, “You’ve got lousy veins!” Uh, excuse me, but when it’s 6 degrees outside everybody has “lousy veins.” Kelly didn’t even try to put in an IV. She called for Patty, whom she said was their expert in starting IVs.
Patty came over, looked at my arms and hands and agreed with Kelly that my veins were bad, but she applied a tourniquet and found something she thought would do. But she didn’t like it...too many “nubbies” she said. But she managed to get a small IV line started in a vein that normally is about the size of a ten penny nail. It shouldn’t really have been hard at all.
So, on Monday, Krista is getting ready to start my IV. I had learned by my previous experience and was wearing warmer clothing and Kathy drove in so I wouldn’t be having to hold onto the cold steering wheel. My hands were warm and my veins were lookin’ good. But, Krista was, as mentioned, a bit nervous. She kept looking for a suitable vein. I suggested using a vein on the back of my left hand that looked about the size of a pencil, which, really, anyone should be able to get into, even without a heating pad. Krista started preparation. She was pulling out a small IV needle, a piece of tape, an alcohol swab. I was looking around...I didn’t see an IV pole, any bags of fluid, or the multiple pieces of tape that are usually used to hold the IV in place when you finally get it there. But, I figured, she really couldn’t do too much harm.
She started placing the IV. She got it close to the vein, which is really huge by IV standards. She even got the tip of the needle in, but that’s about all. A little blood came back out, but not much. She couldn’t advance the needle, so I guess she was going to see if she could expand the vein or something by pushing in some fluid from a syringe she had. “Pop” went the vein! Krista called Patty for help. Patty went back to my other arm and quickly got a line in, but again mentioned my “bad veins,” “bad valves” and such. She attached the syringe of fluid since there still was no IV set up.
So we went into one of the infusion rooms, I read a bit while we waited for Krista to come in, and after a bit she came in with the IV setup, the drugs and the pump. We talked a little about the drugs and I’m happy to tell you that I was able to talk her out of giving me the Ativan, the sedative tranquilizing drug. It was ordered to be used “as needed” anyway. And I didn’t think I needed it. Krista got a lot of help from Kelly in setting up, the pump, setting the infusion parameters, etc. That’s okay for Rituxan, ‘cause everybody’s got to learn their stuff somehow, but when I get the Cytoxan (cyclophospamide) later this week, I want someone with a little gray in their hair. If that goes in wrong, too fast, etc., well, that’s where you could encounter some pretty serious side effects.
So, they started the drugs, the Benadryl knocked me out in a hurry, and I went to sleep, as expected. But without the added Ativan, I was awake in about two hours and feeling pretty well. We were out by a little after noon. As we left, Kelly, noting that I’ll have a central line by the next visit, said that the next time everyone will want to take care of me ‘cause I’ll be so easy. Hmmm. I didn’t think I was hard to deal with at all, but I guess the absence of that line makes a big difference up there.
Lunchtime! Kathy took me to a little place near the barbeque place we went a few days ago that is said to have the best burgers in Denver, The City Grille. Now, I don’t usually trust places that spell “grill” with an “e” on the end. Usually that means that there’s going to be a lot of fru-fru, or that the menu will have been “Californicated,” as the locals like to say. But, this place had good food, real burgers without the guacamole-picante-cilantro blue cheese spread and gorgonzola wine sauce on top, or whatever. We’ll probably go back after some other treatment in the near future.
And, for the rest of the day, I felt well, not drowsy as I had after the first time, when I had been given the Ativan. I’ll remember that.
I felt well again the next day, Tuesday, not so flushed and tired as I had after the first Rituxan infusion. Kathy and I did a few chores and then went to a movie, “Mystic River.” A very well done movie, moving and suspenseful. We’ll not be able to do much in the next couple of weeks, so we wanted to get things done while I was still able to get out. Meanwhile I was dreading the next morning when we would have to get up early, about 5AM or so, to get down to the Cardiovascular Lab at Presbyterian-St. Luke’s Hospital for the placement of the double lumen (a tube within a tube) catheter in my chest.
But, as Robert Burns said, as “translated” from the original Scottish, “The best laid plans of mice and men often go awry.” The little scratchy throat I’d had a few days ago developed into a deep cough. I began coughing Tuesday afternoon, and Wednesday morning, when I went to PSL to have the central line, the catheter placed, I was still coughing deeply. I wondered if they’d put it in, if I was sick. But after talking to the folks there, they went ahead with the procedure. “Don’t cough while I’m placing the catheter in your jugular,” said Doc Jamboz. I assured him I wouldn’t. And he got the thing inserted, tunneling through the chest wall up to the jugular, and got the tip of it placed in the upper chamber of my heart within a few minutes. It was just about painless, too, except when he put a couple of stitches in my chest without anesthesia. But, the drugs they had put in my IV made even that tolerable.
But I was still coughing. I really wondered if I shouldn’t start some antibiotics if I were to get two more doses of chemotherapy in the next two days. Doc Matous’ office is just a couple of blocks from PSL, so Kathy and I walked over there to see if I could ask Jeff about the need for antibiotics or something. This is where things began to go awry. Jeff wasn’t in, so his nurse had me see one of his partners, who listened to my chest, ordered an X-ray and postponed the next two days of the chemotherapy!!!
Now it really makes sense to insure that I’m healthy before I get drugs which are going to seriously damage my immune system. But I didn’t expect him to stop the therapy; I thought he’d just add more drugs to protect me. But, now the whole process of the collection, where each appointment depends upon the one before it, is on hold. I have appointments for each of the next four weekdays to be reevaluated, have the dressings on the catheter changed and to see when we can restart the chemotherapy regimen. I hope it will be soon!
So now I’m at home and my chest hurts a little, I don’t want to move my right arm because it makes the insertion site painful, and I’m upset ‘cause the collection process isn’t going forward as we had planned. I’m hopeful that this cold will blow over rapidly and we can get on with this stuff. I’m forcing fluids, taking echinachea and sucking on zinc lozenges, for whatever they’re worth. I’ll keep you updated.
Meanwhile, my sister Diane, out in Crockett, Texas, wrote that she was the person who ordered the Irish cap for me to keep my noggin warm when the hair falls out. Thanks Diane. I owe you one.
And I had a question about my patient and friend, Marlene, who now has CLL too, and recently lost her son and brother-in-law. I made it sound as if they had died together, in a car wreck, or something. In fact, they died in separate incidents a week or two apart. Her 41 year old son died suddenly of a heart attack, and her brother-in-law died of a seizure. I hadn’t mentioned that she lost her husband last summer! I called her last week. “God is testing me,” she said. This wonderful woman, who had a Mass said for me in her church, told me that she has been so worried about ME! I’m simply amazed that she can think of anyone else when she’s had so many personal tragedies in just the last few months. It shows you what a wonderful person she really is.
I think I’ve written enough for now. I’ll attach another picture from Antarctica for you, a picture of a friend we made on South Georgia Island!
Until later,
Dave
God, give us the grace
to accept with serenity
the things that cannot be changed,
courage to change the things
that should be changed,
and the wisdom to distinguish
the one from the other. Amen.
---Reinhold Niebuhr
(this is the original, uncopyrighted version
of this famous verse, which was written by Rev.
Niebuhr in about 1943)
Saturday, February 14, 2004
Chemotherapy, Again.
Dave’s Great Adventure, Book 2
Chapter 2, Verse 1
February 14, 2004
Round Two
And so, last week, I went in to see Jeff, for my pre-procedure counseling, physical examination, and official signing of permits. I really like Jeff. He’s very informative, but he’s also humorous and personable, like I’d like to think I am. He went over what we were going to do and why we were going to do it, what the benefits were, and then, what the risks were. He started out with all the usual things I expected to hear: nausea, vomiting, diarrhea, hair loss, weakness (which the official permit described as “aesthenia“) and sterility (oh no!). But then he got down to the serious stuff. Possible loss of all marrow function, need for transfusions, irreversible damage to the heart, and a few other things before he got to the ever-popular “death.”
Now, I’ve had patients sign such forms for me for a couple of decades before I do their C-sections (Kaiserschnitt), hysterectomies, removal of an ovarian tumor or an ectopic pregnancy, or just about anything else. I have always known that the more serious complications are extremely rare, but I also know that they can happen. The patients have not, generally, been in a position to judge whether they are at significant risk for the more serious complications or not, however. They have trusted me and signed the permits, and thankfully, I have never killed anyone with a surgical mishap. Which is not to say that I haven’t had some surgical mishaps, just none that I couldn’t fix.
Likewise, I am not in a good position to have a feel for the likelihood of any of these complications either. It was, even for me as a doc, frightening to see all these things in black and white. But, I just trust that they really aren’t likely and that, ultimately, I have to do this stuff anyway. So, I signed the form.
Then, a couple of days ago, Kathy and I went in to the Rocky Mountain Cancer Center for the start of Round Two. We had to be there at about 8AM for the start of the first infusions. As previously mentioned, this was to be the first of four infusions of just Rituxan (rituximab), to try to “purge” my marrow and blood stream of leukemic cells. They had my dose precisely measured, based on my height and weight (which was documented by two nurses who had to be in agreement with the numbers, so critical can overdoses with chemotherapeutic drugs be) and had all the premedications ready.
I found it interesting how different they did things at this center as opposed to the way they had been done at my last set of infusions way back in ’02. For my Rituxan infusions back then, I was pre-medicated with acetaminophen and Benadryl (diphenhydramine) and nothing more. And I did fine. This time, I got both of those drugs plus everything I had gotten for the more toxic drugs, plus even more. I got steroids (decadron), Anzemet (dolasetron) for nausea, and then, as if the Benadryl wasn’t going to make me tired enough, they gave me a dose of Ativan (lorazepam). Ativan is a tranquilizing drug, but it is also used to quell nausea. I hadn’t expected nausea to be a problem after just the Rituxan, but I guess they didn’t want any puking docs in their clinic.
The Rocky Mountain Cancer center has an open bay area, with about a half dozen or so recliners for some of the chemotherapy patients. But they also have a series of small rooms, cubicles about ten feet square, or so, with a bed in them. I was put in one of the cubicles. It was a good thing, I guess. I had brought along a few things to read, plus the Discman. However, it didn’t take long after the drugs went in for me to realize that I wasn’t going to get any reading done, so drowsy was I. I put the magazines away, put on the Discman playing some peaceful music, and I went to sleep. I wasn’t much company for Kathy!
When I woke up three hours later, it was all over. No nausea, pain, diarrhea, no nothing. Just residual tiredness from all those drugs. Kathy drove us home.
But what do we do after a successful round of chemo? We go out to eat! Kathy drove us to a hole-in-the-wall barbeque place she had read about recently, right near the capitol building, and I had a rib dinner. Pretty good! Then we came home and we both napped.
And that’s been about all there has been. Friday I felt a little flushed and tired, like I was coming down with a cold, which can be side effects of the Rituxan. Of course, it could also have been the fact that I really was coming down with a cold, too. But that’s about all that has happened, I’m happy to say. And we do it again on Monday.
So, I guess I’ll close this short edition of the DGA report. I’ll get back again by about the middle of next week or so. That’s when things really start to get exciting. That’s when I get the line in my chest, and the nasty drug, the large dose of Cytoxin.
Before I close, I have a question. This week I received a package in the mail, with a very nice Irish cap in it. It was sent from a vendor in Ohio. A message enclosed said, “Keep your head warm” but there was no name. Does anyone out there know who my benefactor was?
And, we’ve been inundated with requests for pictures of us in Antarctica. Well, not exactly inundated... okay, we had one request. But for Kathy, out in Atlanta, and anyone else who is interested, I’m going to attach (if I don’t forget) a picture of Kathy and me on Coronation Island in the South Orkney Islands about two weeks ago. Those are seals and penguins on the beach in the background.
Enough for now,
Dave
“Health is merely the slowest possible rate at which one can die.”
Chapter 2, Verse 1
February 14, 2004
Round Two
And so, last week, I went in to see Jeff, for my pre-procedure counseling, physical examination, and official signing of permits. I really like Jeff. He’s very informative, but he’s also humorous and personable, like I’d like to think I am. He went over what we were going to do and why we were going to do it, what the benefits were, and then, what the risks were. He started out with all the usual things I expected to hear: nausea, vomiting, diarrhea, hair loss, weakness (which the official permit described as “aesthenia“) and sterility (oh no!). But then he got down to the serious stuff. Possible loss of all marrow function, need for transfusions, irreversible damage to the heart, and a few other things before he got to the ever-popular “death.”
Now, I’ve had patients sign such forms for me for a couple of decades before I do their C-sections (Kaiserschnitt), hysterectomies, removal of an ovarian tumor or an ectopic pregnancy, or just about anything else. I have always known that the more serious complications are extremely rare, but I also know that they can happen. The patients have not, generally, been in a position to judge whether they are at significant risk for the more serious complications or not, however. They have trusted me and signed the permits, and thankfully, I have never killed anyone with a surgical mishap. Which is not to say that I haven’t had some surgical mishaps, just none that I couldn’t fix.
Likewise, I am not in a good position to have a feel for the likelihood of any of these complications either. It was, even for me as a doc, frightening to see all these things in black and white. But, I just trust that they really aren’t likely and that, ultimately, I have to do this stuff anyway. So, I signed the form.
Then, a couple of days ago, Kathy and I went in to the Rocky Mountain Cancer Center for the start of Round Two. We had to be there at about 8AM for the start of the first infusions. As previously mentioned, this was to be the first of four infusions of just Rituxan (rituximab), to try to “purge” my marrow and blood stream of leukemic cells. They had my dose precisely measured, based on my height and weight (which was documented by two nurses who had to be in agreement with the numbers, so critical can overdoses with chemotherapeutic drugs be) and had all the premedications ready.
I found it interesting how different they did things at this center as opposed to the way they had been done at my last set of infusions way back in ’02. For my Rituxan infusions back then, I was pre-medicated with acetaminophen and Benadryl (diphenhydramine) and nothing more. And I did fine. This time, I got both of those drugs plus everything I had gotten for the more toxic drugs, plus even more. I got steroids (decadron), Anzemet (dolasetron) for nausea, and then, as if the Benadryl wasn’t going to make me tired enough, they gave me a dose of Ativan (lorazepam). Ativan is a tranquilizing drug, but it is also used to quell nausea. I hadn’t expected nausea to be a problem after just the Rituxan, but I guess they didn’t want any puking docs in their clinic.
The Rocky Mountain Cancer center has an open bay area, with about a half dozen or so recliners for some of the chemotherapy patients. But they also have a series of small rooms, cubicles about ten feet square, or so, with a bed in them. I was put in one of the cubicles. It was a good thing, I guess. I had brought along a few things to read, plus the Discman. However, it didn’t take long after the drugs went in for me to realize that I wasn’t going to get any reading done, so drowsy was I. I put the magazines away, put on the Discman playing some peaceful music, and I went to sleep. I wasn’t much company for Kathy!
When I woke up three hours later, it was all over. No nausea, pain, diarrhea, no nothing. Just residual tiredness from all those drugs. Kathy drove us home.
But what do we do after a successful round of chemo? We go out to eat! Kathy drove us to a hole-in-the-wall barbeque place she had read about recently, right near the capitol building, and I had a rib dinner. Pretty good! Then we came home and we both napped.
And that’s been about all there has been. Friday I felt a little flushed and tired, like I was coming down with a cold, which can be side effects of the Rituxan. Of course, it could also have been the fact that I really was coming down with a cold, too. But that’s about all that has happened, I’m happy to say. And we do it again on Monday.
So, I guess I’ll close this short edition of the DGA report. I’ll get back again by about the middle of next week or so. That’s when things really start to get exciting. That’s when I get the line in my chest, and the nasty drug, the large dose of Cytoxin.
Before I close, I have a question. This week I received a package in the mail, with a very nice Irish cap in it. It was sent from a vendor in Ohio. A message enclosed said, “Keep your head warm” but there was no name. Does anyone out there know who my benefactor was?
And, we’ve been inundated with requests for pictures of us in Antarctica. Well, not exactly inundated... okay, we had one request. But for Kathy, out in Atlanta, and anyone else who is interested, I’m going to attach (if I don’t forget) a picture of Kathy and me on Coronation Island in the South Orkney Islands about two weeks ago. Those are seals and penguins on the beach in the background.
Enough for now,
Dave
“Health is merely the slowest possible rate at which one can die.”
Monday, February 9, 2004
We Have A Plan!
Dave’s Great Adventure, Book 2
Chapter 1, Verse 5
February 9, 2004
“...let the games begin....”
Hello.
It’s been a while since I bothered you with one of my messages. I’ve been thinking about getting an update out for several weeks, but there’s been SO much going on that I’ve just sort of been preoccupied. Gosh, just think of the things that have happened. There was that poor Britney Spears who accidentally got married in Las Vegas a couple of months ago. Gosh, then she had to go through the trauma of a divorce just a couple of days later. She must have been devastated! And I guess she had to buy her “Ex” a Porsche too, just as a Happy Divorce present, or something. And, what did you think of the Bennifer breakup. Oh, my! How could that happen to SUCH a nice couple? I heard that JLo said the 6.1 caret ring Ben gave her was “cursed” or something. I would have thought it might cause carpal tunnel syndrome or a dislocated elbow or something, but “cursed?” Then there is the sad story of Janet Jackson who has been having trouble keeping her clothes on while in public. She must be absolutely mortified that her clothing has been “malfunctioning” while she has been on live television. Sadly, I was on an airplane during this unfortunate event and was unable to witness it! Dave Lettermen, however, said he was glad it happened. At least for one day, he said, he wasn’t the biggest boob on TV!
Such amazing things are going on in the world!
Now, the real reasons I haven’t gotten an update out sooner have been that (1) my docs have been debating what we were going to do and (2) Kathy and I have been out of the country for the last couple of weeks. Let me tell you about (1) first.
A couple of months ago I mentioned that my transplanter doc, Jeff Matous, said that despite the fact that the leukemic cells were again invading my marrow, there was still a way that we could harvest some stem cells from me to use in an “autologous” stem cell transplant (meaning a transplant using one’s own cells) sometime in the future, when I might be failing other treatments. The problem was that if we harvested the cells now, there would be more of the “bad guys” in there and it would just cause the disease to return that much earlier. So he proposed that we “purge” my marrow before collecting the cells.
In fact, that’s what we’re going to do, starting next week. Long-time readers of my “Adventures With Leukemia” series may remember my frequent mentions of a drug called Rituxan. This is actually an antibody which specifically attacks certain abnormal white blood cells, like leukemic cells. What Jeff has proposed is that we pre-treat me with a series of Rituxan infusions before doing the collection. This raised the cost of the collection considerably, so there were some prolonged discussions about whether my insurer/employer would bear the additional cost. In the end they agreed to do so, and the procedure is planned for most of this month, going through the first week of March. I’ll be getting the Rituxan infusions every four days, starting this Thursday. In the midst of these infusions, I’ll be getting a large IV line placed in my chest in a couple of weeks. That will be used to infuse another drug, Cytoxan, into the big blood vessels near my heart, where it will be rapidly diluted. If large amounts of Cytoxan were put into an IV in my hand, for example, it could leak out and destroy the skin in that area. The cytoxan will destroy most of my stem cells (Cytoxan = “cyto” which means cell, and “toxin” which means poison). But, then the remaining stem cells will begin rapidly reproducing and it’s during this time that they can most easily be driven out of my marrow, into my blood stream for harvesting. The harvesting will be done by collecting the cells from the same large IV line that was used for putting in the cytoxan a couple of weeks before (is this technical enough for you... and is anyone still reading this?).
So, about a month from now, I should be finished with the whole process. The only thing is, this will be a shorter but much more intensive process, so I’m more likely to have more side effects, like nausea, hair loss, etc. I may (or may not be) bald this time next month. I’m wondering what I should do about my appearance when I go back to work. One of my colleagues has a great idea. I’ll get a series of wigs: I’ll have an Elvis wig for Mondays, an Afro wig for Tuesdays, a Lyle Lovett wig for Wednesdays, and so on.... What do you think? Great idea or what!
In preparation for all this I got to have another bone marrow biopsy last month, on Kathy’s birthday, of all days to have it scheduled. That’s number 5, if anyone’s counting. We needed to see how fast the leukemia was coming back. I had had a couple of normal bone marrow biopsies in late 2002 and early 2003, but then found that last September about 5% of the cells in the marrow were again leukemic. The most recent biopsy was done just a few days before Kathy and I left on a trip which I’ll mention momentarily. Since we were gone for a couple of weeks, I didn’t get the results until I got back to town. I was busily trying to catch up with a lot of things in the clinic, and pulled up the biopsy, and a few other labs, on the computer, to see what they said. I scanned through the report as I listened to voice mail messages and read stuff on my desk. The next day, I was thinking, “Did it really say what I thought it said?” I pulled it up again.
“No diagnostic abnormality.” That’s what it said. Now, when we get lab reports back from the pathologist they come in three parts. The first part is a one line summary, which is followed by the details, the “fine print” if you will. Finally, there are any explanatory comments which may be needed.
“No diagnostic abnormality” is med-speak for “normal.” That would be a better report, with less leukemic cells, than was reported four months prior. That, in truth, would not be likely. Now, the second part, the “fine print,” mentioned looking through all the cells, noting normal cell growth, etc. Then it said there was “a minute focus of lymphoid aggregate consistent with a low grade lymphoproliferative process such lymphoma/CLL.” So, they in fact found something that could be leukemic, but they had to look hard to find it. That alone is, I think, great news. At least it shows that the leukemic cells are not growing rapidly and that my remission will, hopefully, not be over too soon. And it means that we should be able to collect a high proportion of normal stem cells with this upcoming procedure.
Man, I better stop spending my money so fast. I may live longer than I thought I was going to!
Speaking of spending money, last year when I achieved a complete remission after my first rounds of chemotherapy, Kathy and I decided that we would do some things that we had always wanted to do “sometime.” You know, while I was able to do them, not really knowing how much time I had left. One of those things was to see Alaska. The other was to see Antarctica. I’ve mentioned that trip a few times in this series of messages, and it finally happened. We made the reservations almost a year ago and went during the second part of January. Kathy was the reluctant participant in this venture, but ultimately had a good time.
We spent a couple of weeks on this trip, a cruise actually, and had the most fascinating time among the penguins, icebergs and seals. It was such a nice trip, seeing almost nothing that was man-made, and so much that was in its pristine, primitive state. It was a nice, mostly relaxing, and very educational trip that I really would have to recommend to any of you who have any interest in nature, geology, natural history, etc. It was just fabulous to be walking around on beaches with penguins and seals. The penguins mostly ignored us; the seals were, at times, aggressive and a bit irritable. The place is just incredibly beautiful and rugged. (We sent a series of about eight or so e-mails to family members about what we were seeing on this trip. If anyone who didn’t get them has any interest at all in Antarctica and what we saw/did, I’d be happy to send these messages to you too.)
That's just about all the significant news from here for now. I did, however, want to mention one other thing. Most of you probably remember that I found I had leukemia after getting sick when I had a hepatitis A shot. When that happened, I got lots of help and support from my friends at work and from lots of my patients. One of those patients is a lovely lady named Marlene, who kept in touch and sent me cards, etc. Marlene is about 68 years old. Well, Marlene got her flu shot a few months ago. Shortly thereafter she started getting sick, with low grade fevers, swollen lymph nodes and feeling weak. After getting worked up for this, we have found out that she, too, has CLL! So now Marlene and I have lots to talk about, and have been comparing notes, talking about treatments, etc. I just think it’s so ironic that this wonderful patient, who has given me so much support, should end up having the same damned disease. She says that seeing me doing so well gives her a lot of encouragement and that because of this, she isn’t at all afraid. Wow, I guess it’s a good thing she didn’t see me when I was weepy and depressed!
(I wrote the above just yesterday) Today I heard from Marlene again. She was going in for chemotherapy, single agent fludarabine, one of the drugs I got during my first round of chemotherapy. Marlene told us that her son, and her brother-in-law had died suddenly! God, my heart goes out to that poor woman. The same month she starts chemotherapy for a fatal disease she loses a son and a close relative. It’s true...”stuff” happens to people who really don’t deserve it.
This reminds me of a wonderful essay on death that I recently read. I think, if you don’t mind, that I’ll write it up and send it out to you kind folks in the near future. Maybe as a supplemental reading “assignment.”
I’ll be back sooner than you think, with a report on how the new round of chemotherapy is going.
Dave
Chapter 1, Verse 5
February 9, 2004
“...let the games begin....”
Hello.
It’s been a while since I bothered you with one of my messages. I’ve been thinking about getting an update out for several weeks, but there’s been SO much going on that I’ve just sort of been preoccupied. Gosh, just think of the things that have happened. There was that poor Britney Spears who accidentally got married in Las Vegas a couple of months ago. Gosh, then she had to go through the trauma of a divorce just a couple of days later. She must have been devastated! And I guess she had to buy her “Ex” a Porsche too, just as a Happy Divorce present, or something. And, what did you think of the Bennifer breakup. Oh, my! How could that happen to SUCH a nice couple? I heard that JLo said the 6.1 caret ring Ben gave her was “cursed” or something. I would have thought it might cause carpal tunnel syndrome or a dislocated elbow or something, but “cursed?” Then there is the sad story of Janet Jackson who has been having trouble keeping her clothes on while in public. She must be absolutely mortified that her clothing has been “malfunctioning” while she has been on live television. Sadly, I was on an airplane during this unfortunate event and was unable to witness it! Dave Lettermen, however, said he was glad it happened. At least for one day, he said, he wasn’t the biggest boob on TV!
Such amazing things are going on in the world!
Now, the real reasons I haven’t gotten an update out sooner have been that (1) my docs have been debating what we were going to do and (2) Kathy and I have been out of the country for the last couple of weeks. Let me tell you about (1) first.
A couple of months ago I mentioned that my transplanter doc, Jeff Matous, said that despite the fact that the leukemic cells were again invading my marrow, there was still a way that we could harvest some stem cells from me to use in an “autologous” stem cell transplant (meaning a transplant using one’s own cells) sometime in the future, when I might be failing other treatments. The problem was that if we harvested the cells now, there would be more of the “bad guys” in there and it would just cause the disease to return that much earlier. So he proposed that we “purge” my marrow before collecting the cells.
In fact, that’s what we’re going to do, starting next week. Long-time readers of my “Adventures With Leukemia” series may remember my frequent mentions of a drug called Rituxan. This is actually an antibody which specifically attacks certain abnormal white blood cells, like leukemic cells. What Jeff has proposed is that we pre-treat me with a series of Rituxan infusions before doing the collection. This raised the cost of the collection considerably, so there were some prolonged discussions about whether my insurer/employer would bear the additional cost. In the end they agreed to do so, and the procedure is planned for most of this month, going through the first week of March. I’ll be getting the Rituxan infusions every four days, starting this Thursday. In the midst of these infusions, I’ll be getting a large IV line placed in my chest in a couple of weeks. That will be used to infuse another drug, Cytoxan, into the big blood vessels near my heart, where it will be rapidly diluted. If large amounts of Cytoxan were put into an IV in my hand, for example, it could leak out and destroy the skin in that area. The cytoxan will destroy most of my stem cells (Cytoxan = “cyto” which means cell, and “toxin” which means poison). But, then the remaining stem cells will begin rapidly reproducing and it’s during this time that they can most easily be driven out of my marrow, into my blood stream for harvesting. The harvesting will be done by collecting the cells from the same large IV line that was used for putting in the cytoxan a couple of weeks before (is this technical enough for you... and is anyone still reading this?).
So, about a month from now, I should be finished with the whole process. The only thing is, this will be a shorter but much more intensive process, so I’m more likely to have more side effects, like nausea, hair loss, etc. I may (or may not be) bald this time next month. I’m wondering what I should do about my appearance when I go back to work. One of my colleagues has a great idea. I’ll get a series of wigs: I’ll have an Elvis wig for Mondays, an Afro wig for Tuesdays, a Lyle Lovett wig for Wednesdays, and so on.... What do you think? Great idea or what!
In preparation for all this I got to have another bone marrow biopsy last month, on Kathy’s birthday, of all days to have it scheduled. That’s number 5, if anyone’s counting. We needed to see how fast the leukemia was coming back. I had had a couple of normal bone marrow biopsies in late 2002 and early 2003, but then found that last September about 5% of the cells in the marrow were again leukemic. The most recent biopsy was done just a few days before Kathy and I left on a trip which I’ll mention momentarily. Since we were gone for a couple of weeks, I didn’t get the results until I got back to town. I was busily trying to catch up with a lot of things in the clinic, and pulled up the biopsy, and a few other labs, on the computer, to see what they said. I scanned through the report as I listened to voice mail messages and read stuff on my desk. The next day, I was thinking, “Did it really say what I thought it said?” I pulled it up again.
“No diagnostic abnormality.” That’s what it said. Now, when we get lab reports back from the pathologist they come in three parts. The first part is a one line summary, which is followed by the details, the “fine print” if you will. Finally, there are any explanatory comments which may be needed.
“No diagnostic abnormality” is med-speak for “normal.” That would be a better report, with less leukemic cells, than was reported four months prior. That, in truth, would not be likely. Now, the second part, the “fine print,” mentioned looking through all the cells, noting normal cell growth, etc. Then it said there was “a minute focus of lymphoid aggregate consistent with a low grade lymphoproliferative process such lymphoma/CLL.” So, they in fact found something that could be leukemic, but they had to look hard to find it. That alone is, I think, great news. At least it shows that the leukemic cells are not growing rapidly and that my remission will, hopefully, not be over too soon. And it means that we should be able to collect a high proportion of normal stem cells with this upcoming procedure.
Man, I better stop spending my money so fast. I may live longer than I thought I was going to!
Speaking of spending money, last year when I achieved a complete remission after my first rounds of chemotherapy, Kathy and I decided that we would do some things that we had always wanted to do “sometime.” You know, while I was able to do them, not really knowing how much time I had left. One of those things was to see Alaska. The other was to see Antarctica. I’ve mentioned that trip a few times in this series of messages, and it finally happened. We made the reservations almost a year ago and went during the second part of January. Kathy was the reluctant participant in this venture, but ultimately had a good time.
We spent a couple of weeks on this trip, a cruise actually, and had the most fascinating time among the penguins, icebergs and seals. It was such a nice trip, seeing almost nothing that was man-made, and so much that was in its pristine, primitive state. It was a nice, mostly relaxing, and very educational trip that I really would have to recommend to any of you who have any interest in nature, geology, natural history, etc. It was just fabulous to be walking around on beaches with penguins and seals. The penguins mostly ignored us; the seals were, at times, aggressive and a bit irritable. The place is just incredibly beautiful and rugged. (We sent a series of about eight or so e-mails to family members about what we were seeing on this trip. If anyone who didn’t get them has any interest at all in Antarctica and what we saw/did, I’d be happy to send these messages to you too.)
That's just about all the significant news from here for now. I did, however, want to mention one other thing. Most of you probably remember that I found I had leukemia after getting sick when I had a hepatitis A shot. When that happened, I got lots of help and support from my friends at work and from lots of my patients. One of those patients is a lovely lady named Marlene, who kept in touch and sent me cards, etc. Marlene is about 68 years old. Well, Marlene got her flu shot a few months ago. Shortly thereafter she started getting sick, with low grade fevers, swollen lymph nodes and feeling weak. After getting worked up for this, we have found out that she, too, has CLL! So now Marlene and I have lots to talk about, and have been comparing notes, talking about treatments, etc. I just think it’s so ironic that this wonderful patient, who has given me so much support, should end up having the same damned disease. She says that seeing me doing so well gives her a lot of encouragement and that because of this, she isn’t at all afraid. Wow, I guess it’s a good thing she didn’t see me when I was weepy and depressed!
(I wrote the above just yesterday) Today I heard from Marlene again. She was going in for chemotherapy, single agent fludarabine, one of the drugs I got during my first round of chemotherapy. Marlene told us that her son, and her brother-in-law had died suddenly! God, my heart goes out to that poor woman. The same month she starts chemotherapy for a fatal disease she loses a son and a close relative. It’s true...”stuff” happens to people who really don’t deserve it.
This reminds me of a wonderful essay on death that I recently read. I think, if you don’t mind, that I’ll write it up and send it out to you kind folks in the near future. Maybe as a supplemental reading “assignment.”
I’ll be back sooner than you think, with a report on how the new round of chemotherapy is going.
Dave
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 end.....as long as we continue to have HOPE maybe there is no end....WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE? I just wanted to thank you for sharing your thoughts.” Well, my thoughts and philosophies certainly aren’t on par with the great Immanuel Kant, but thanks for the loose connection. Kathy also forwarded us a link to “The Interview With God.“ If you haven’t seen it, I urge you to go to www.theinterviewwithgod.com and look at and read the awe inspiring messages. It’s a stunningly beautiful web site. And finally, Phil Dennis, way up in Juneau, wrote back that I shouldn’t worry about saying things that others may not agree with. He said, “We disagree with you that a single soul should in any way be offended by what you are doing, saying. After all, absolutely no one knows the answers. Those who claim they do are guilty of arrogant ignorance, right?”
What I didn’t get were any rebuttals to any of my hare-brained thoughts and philosophies. I know, I just know that there were a lot of you wondering what I could have possibly been thinking. Among the folks who get this little “publication” are liberals, conservatives, Christians, atheists, Jews, Republicans, independents, Democrats, abortion advocates, creationists, wildlife advocates, young folks, old or older folks, and so on. Many of you get my letters because you’re “obligated to,” because you’re relatives. Others have asked, for some reason, to get them. I know that everyone couldn’t possibly have agreed with all the stuff I said, but no one argued any of the many musings I presented. I suppose that folks didn’t want to disagree with me as I spelled out my thoughts, but I really wouldn’t be offended by different views. I could probably learn something.
I can’t pretend that my views and ideas are correct or that they are even all that important.. That’s why I facetiously called them “Deep Thoughts,” after the name of the serial comedy routine that used to be shown on the late night show “Saturday Night Live.” The host, Jack Handy, would present some inane idea which he thought was very important, a “Deep Thought.” For example: “As the light changed from red to green to yellow and back to red again, I sat there thinking about life. Was it nothing more than a bunch of honking and yelling? Sometimes it seems that way.”
Anyway, I have no special insight into dying, I just think about it more now. I’m like Warren Zevon, the rock star who recently died of lung cancer. When he was being interviewed on the Dave Letterman show, he was asked what his insights were on dying. He said we should “Enjoy every sandwich!” That’s probably about as deep as my thoughts go too, just to realize that I should enjoy every day for what it is, and enjoy the blessings I have while I have them, even if they are something as mundane as a peanut butter sandwich, or as wonderful as being able to hold Kathy’s hand.
Segue!
I ‘m calling this little edition “Something Completely Different” (after the Monty Python series) as, after my prolonged, morose and introspective dissertation of last month, I have some relatively good news. Just before I sent out “Deep Thoughts” I went to see my other oncologist, Jeff Matous, who works at the Rocky Mountain Cancer Center. I’ve been doing a lot research on what my next step should be, and have been asking other oncologists what they think. So, I scheduled a visit with Jeff to talk over potential therapies and transplants. I left feeling a lot better. The thoughts I’ve been having are perhaps too pessimistic. I’ve emotionally been up and down, and, as I told my family, I feel like a yo-yo sometimes.
I’ve said many times that this disease is really going to drive me crazy. Like I mentioned a while ago, there are many variables and unknowns. One of the main ones is my expected longevity, and without having some idea what that might be, I can't really plan much, can I? When I first got sick early last year, my doc told me the average life expectancy was about six years from diagnosis to death. He's either found, or at least said nothing to make me think differently in the last 20 odd months. Meanwhile, my white count doubling times when I first got sick were about 2-3 months, a very bad sign, and now I find that I have this CD 38 antigen, associated with more aggressive behavior of the disease! On the other hand, my disease was extremely sensitive to the chemotherapy, a very good sign. But, it came back so soon, a bad sign, again. I've been gathering information from a variety of sources about what to do next, trying to get some perspective on this disease, since there is no agreed upon "best" treatment. Talking to the husband of one of my colleagues, who is an oncologist with the VA, he noted that the disease is considered incurable and that the oncologist's job, as he joked, was to keep me alive long enough so that I could die of someone else's disease (heart attack, diabetes, etc.). Not really encouraging words.
So, a few weeks ago I had an appointment with my transplanter doc, Jeff Matous. I went there on my own just to talk about transplants and to find out why we couldn't just go ahead and schedule a bone marrow transplant now rather than waiting until I'd failed a couple different types of chemo and, presumably, would be sicker (not that Kathy wants me to do this, the mortality is horrible, but it does give the outside chance of a cure). I also wanted to find out what might be new in the treatment of my disease.
Jeff said that there was really nothing new. He also said that 95% of docs would say that I should do nothing for now! Which is what we're doing, for now. But it's not what I want to do. I want to do something! But he said the policy should be "Don't just do something, stand there!" That kinda means that the risks of further treatment could be worse than what the disease is doing to me right now. Then he added that I could be in this remission (I'm still in remission, just showing early signs of relapse) for several years! Well, I wasn't expecting to be here in several years! Then he said, in no way would he recommend a transplant for me right now. The risks of an allotransplant (someone else's marrow) are too great, the mortality being the 25-50% I've often mentioned. I'm in too good a condition to take those kinds of risks, he said. Then, he said the CD 38 antigen has been discounted as an indicator of aggressive behavior in the disease and should be ignored. And THEN, he said that if he had ten patients in my current condition that he would expect all ten to be alive in ten years!
What?! That's the first time I've heard those kinds of numbers. Then he said he thought we still could collect stem cells and store them away for later, but we'd have to do some novel things. He wants to treat me with two of the drugs I had last year, that worked so well (cytoxan and Rituxan) to "purge" most of the leukemic cells from my circulation, and then collect the stem cells. You may remember that Rituxan is a monoclonal antibody which specifically attacks the CD-20 antigen on my leukemic cells, while not damaging the normal cells. Then the cytoxan forces stem cells out of my marrow and into my peripheral circulation where they can be harvested! So, I'll be seeing my other doc, Brian Koester, again in a couple of weeks to set up the proposed therapy (presuming Kaiser will still pay for it, 'cause now it's going to be even more expensive) for probably about eight weeks from now. I guess I'll lose my hair this time, as we'll be using larger doses of the cytoxan, but, hey, it'll come back and I'll look classy wearing a baseball cap to work for a few weeks. And maybe my hair will come back curly and red!
(I might add at this point that a stem cell collection would be done, not with a cure in mind, but just as another treatment modality. The idea is that if the disease gets out of control, and nothing else works, we can blast my bone marrow, destroying everything in it, and then replace the lost marrow cells with the stored stem cells. We know that there will almost certainly be some cancerous cells collected, which will start growing, too, but the transplant will, in theory, put me back in an earlier stage of the disease.)
So... I've gone from thinking that I had, at most, about three or four years left, to thinking I might live to be old enough to collect some of my social security! Of course, Jeff could be absolutely wrong in his guesses, but it was great to get some apparently good news after hearing just bad stuff for a few weeks. I guess I won't be quite so morose for a while now. That'll be good for all concerned. I just thought I'd pass this most recent news
In other news, last month I was invited by a friend to attend a Veteran’s Day Celebration which was sponsored by the young people of his church. Kathy and I went and it turned out to be a very nice ceremony. There were veterans there from every conflict from World War II to the current Iraq war. I didn’t know until after I’d been invited to attend that I’d also have to get up and give a little speech! Most of you know that I do not do well with public speaking, but I muddled through my experiences in the military and in Vietnam. You know, this was the very first time I’ve been personally invited to a celebration and honored for having spent time in the army and in a war zone. It was nice.
And over Thanksgiving we had a very nice family get-together. My sister Deb and her family from Sacramento came out, and Deb even volunteered to do the cooking! And our daughter Jen with husband Dan and their two kids made the long drive from Dallas, through a blizzard, to be with us. Finally, our eldest, Jon, flew in from Dallas as well. We had a wonderful family time and, as expected, too much food! Plus, Dallas won the football game that day, which was a bonus for all of us.
And I continue to work four days a week, or so. Last weekend I was in the hospital delivering babies, and between deliveries I was watching the local PBS station. They were showing Rick Steves, the travel guide who does shows about places in Europe that he likes to go to. The stories that were showing that day were about Germany. He was showing castles along the Rhein River, the trains, Rothenburg, Munich, Neuschwanstein (the famous castle built by King Ludwig that the Disney castle is fashioned after), the Zugspitz, and more. I sat there getting very homesick, for this foreign country that feels so much like home to me. I didn’t know it at the time, but Kathy was watching the same show at home and was also getting homesick for Germany. We really have such wonderful memories of our years living there! We hope to get back there for a visit next year.
Finally, I wanted to pass on the news that our friends Claudia and Michael Koetzle, who live near Karlsruhe, Germany, had their first baby last month, a little boy named Alexander. New life comes into the world every day, and it’s always special. Isn’t it a wonderful thing? It’s nice to report on a new life for a change; I’ve reported too many deaths in the last year or so.
I think that’s all for now. I’ll be back with another update when there is news to report.
Dave
“We are too soon old, and too late wise.”
Chapter 1, Verse 4
December 11, 2003
“And now...for something completely different!”
Hello again. I hope you have recovered from my last epistle and its collection of incompletely thought-out ideas, faulty logic, eclectic philosophy and self-centered whining. I suspect some of you are still sitting in stunned silence after reading my wildly erratic thoughts. But, like I said, it’s just where my mind has been wandering recently. I have to tell you though, that it has been therapeutic for me to put these thoughts down on paper and send them out, discussing them, if you will, with all of you. I’ve stopped obsessing about them for now, now that they’ve been committed to paper, for better or worse. It’s just that you ended up being part of my therapy whether you wanted to be or not.
I heard back from a number of you who have had or were having similar thoughts. My brother Dan, in the Dallas area, whom I quoted in my letter, wrote a nice, long letter telling me that he’d been having many thoughts about death and dying for quite a while. Dan is a great guy and is a happy-go-lucky soul. But Dan has badly damaged kidneys, a problem which was found when he was about twelve or so. I think he’s operating on about a third of one kidney or so, which, fortunately, has been enough to keep him healthy for several decades. But, he’s close to the minimum kidney function needed to keep him alive. He has worried about losing his kidneys and needing a transplant for many years. I never realized he worried so much about it, because he keeps a lot inside of himself. But, I suppose it is a natural thing to worry about. You need kidneys to survive, and kidney transplants are not minor surgeries. And, if you survive a transplant, you have to be on immunosuppressive drugs for the rest of your life, drugs that can make you susceptible to all kinds of other diseases and infections. Like me, Dan has a wife and three kids he worries about and since he has had the kidney problem since childhood, hasn’t been able to get life insurance. He worries about leaving them
Dan had a lot of great thoughts in his letter. “We cannot ever find happiness from external sources. People need to look within. I’ve never had long term happiness from the acquisition of a physical object. Our higher goal is probably acquired by how we treat other people. To be decent, caring neighbors.” And, “One thing about nature, though, everything gets recycled. I wonder if that includes souls? Have you ever read the idea that the function of the brain is simply to be a receiver of the soul. And that soul is attached to that body until the physical connection (life within the body) ceases?” And, “Why are we here? Are we being tested to see if we are worthy to go on. If we are not, do we get another chance or are we tossed out?” Dan also said, “Meaning of life? Well, I guess that depends on your current stage of life. When we are young, we will live forever. Middle age asks us what we did with our youth, and old age prepares us for death. For some time I’ve concluded that old age should make the transition to death easier.”
These are great thoughts! Dan is really the quiet kid brother and doesn’t talk all that much when the family is together, but he has a lot of interesting thoughts going on under his hat. I, too, have thought that old age would make the transition to death easier. I think that’s why my current situation seems to bother me so much; I won’t have the opportunity to get to “old age,” whatever that is.
I also heard from Natalie, our son, Jon’s, fiancee, who lives in El Paso. She’s had similar thoughts, but from a different perspective. Natalie’s dad is, and for a long time has been very ill. He has very bad diabetes and has lost his kidneys, then he had a kidney transplant which has failed. Now he’s on dialysis. He’s had both legs amputated. Natalie has been with her family throughout all his trials. She worries about how long he has left, and thinks about all the things they haven’t been able to do during his lengthy illness. She worries about her mom being alone, about her father suffering. She worries that she’s not doing a good enough job of being there for them, and failing them somehow. She has given up a lot in her own life to be there for her mom and dad over the past several years. She’s a very good person.
And Cindy, also in El Paso, wrote to sat that she’s had some of the same thoughts. Cindy lost both her mom and dad in recent years to cancer. Her mom died of breast cancer a few years ago, and I told you about her dad dying of an aggressive lymphoma earlier this year. She is a Christian, but like many of us, has moments of doubt and wonders why bad things have to happen. Why were her folks taken from her? And with the loss of both her mom and her dad, the reality of death is a daily thought of hers, of leaving this world, of just knowing that it comes with certainty. She said it’s not a fantasy in her world anymore, it's reality. I wrote back and told her I felt bad for her, having to think those thoughts already at her young age, but that I understand how it happens.
And I got lots of messages of encouragement from lots of my correspondents out there, and I appreciate all your thoughts. I heard from my cousins Charlotte Finley, Jean Bieri, and Marie Murray, and from our friend Jane Forte, all up in Iowa. Kathy Roberts, out in Hotlanta wrote, “I know too many of my special friends, and of course family members that have wondered many of the things that you had the courage to say. I “kan't” seem to get to the end of "Deep Thoughts," maybe because no one wants to face the end.....as long as we continue to have HOPE maybe there is no end....WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE? I just wanted to thank you for sharing your thoughts.” Well, my thoughts and philosophies certainly aren’t on par with the great Immanuel Kant, but thanks for the loose connection. Kathy also forwarded us a link to “The Interview With God.“ If you haven’t seen it, I urge you to go to www.theinterviewwithgod.com and look at and read the awe inspiring messages. It’s a stunningly beautiful web site. And finally, Phil Dennis, way up in Juneau, wrote back that I shouldn’t worry about saying things that others may not agree with. He said, “We disagree with you that a single soul should in any way be offended by what you are doing, saying. After all, absolutely no one knows the answers. Those who claim they do are guilty of arrogant ignorance, right?”
What I didn’t get were any rebuttals to any of my hare-brained thoughts and philosophies. I know, I just know that there were a lot of you wondering what I could have possibly been thinking. Among the folks who get this little “publication” are liberals, conservatives, Christians, atheists, Jews, Republicans, independents, Democrats, abortion advocates, creationists, wildlife advocates, young folks, old or older folks, and so on. Many of you get my letters because you’re “obligated to,” because you’re relatives. Others have asked, for some reason, to get them. I know that everyone couldn’t possibly have agreed with all the stuff I said, but no one argued any of the many musings I presented. I suppose that folks didn’t want to disagree with me as I spelled out my thoughts, but I really wouldn’t be offended by different views. I could probably learn something.
I can’t pretend that my views and ideas are correct or that they are even all that important.. That’s why I facetiously called them “Deep Thoughts,” after the name of the serial comedy routine that used to be shown on the late night show “Saturday Night Live.” The host, Jack Handy, would present some inane idea which he thought was very important, a “Deep Thought.” For example: “As the light changed from red to green to yellow and back to red again, I sat there thinking about life. Was it nothing more than a bunch of honking and yelling? Sometimes it seems that way.”
Anyway, I have no special insight into dying, I just think about it more now. I’m like Warren Zevon, the rock star who recently died of lung cancer. When he was being interviewed on the Dave Letterman show, he was asked what his insights were on dying. He said we should “Enjoy every sandwich!” That’s probably about as deep as my thoughts go too, just to realize that I should enjoy every day for what it is, and enjoy the blessings I have while I have them, even if they are something as mundane as a peanut butter sandwich, or as wonderful as being able to hold Kathy’s hand.
Segue!
I ‘m calling this little edition “Something Completely Different” (after the Monty Python series) as, after my prolonged, morose and introspective dissertation of last month, I have some relatively good news. Just before I sent out “Deep Thoughts” I went to see my other oncologist, Jeff Matous, who works at the Rocky Mountain Cancer Center. I’ve been doing a lot research on what my next step should be, and have been asking other oncologists what they think. So, I scheduled a visit with Jeff to talk over potential therapies and transplants. I left feeling a lot better. The thoughts I’ve been having are perhaps too pessimistic. I’ve emotionally been up and down, and, as I told my family, I feel like a yo-yo sometimes.
I’ve said many times that this disease is really going to drive me crazy. Like I mentioned a while ago, there are many variables and unknowns. One of the main ones is my expected longevity, and without having some idea what that might be, I can't really plan much, can I? When I first got sick early last year, my doc told me the average life expectancy was about six years from diagnosis to death. He's either found, or at least said nothing to make me think differently in the last 20 odd months. Meanwhile, my white count doubling times when I first got sick were about 2-3 months, a very bad sign, and now I find that I have this CD 38 antigen, associated with more aggressive behavior of the disease! On the other hand, my disease was extremely sensitive to the chemotherapy, a very good sign. But, it came back so soon, a bad sign, again. I've been gathering information from a variety of sources about what to do next, trying to get some perspective on this disease, since there is no agreed upon "best" treatment. Talking to the husband of one of my colleagues, who is an oncologist with the VA, he noted that the disease is considered incurable and that the oncologist's job, as he joked, was to keep me alive long enough so that I could die of someone else's disease (heart attack, diabetes, etc.). Not really encouraging words.
So, a few weeks ago I had an appointment with my transplanter doc, Jeff Matous. I went there on my own just to talk about transplants and to find out why we couldn't just go ahead and schedule a bone marrow transplant now rather than waiting until I'd failed a couple different types of chemo and, presumably, would be sicker (not that Kathy wants me to do this, the mortality is horrible, but it does give the outside chance of a cure). I also wanted to find out what might be new in the treatment of my disease.
Jeff said that there was really nothing new. He also said that 95% of docs would say that I should do nothing for now! Which is what we're doing, for now. But it's not what I want to do. I want to do something! But he said the policy should be "Don't just do something, stand there!" That kinda means that the risks of further treatment could be worse than what the disease is doing to me right now. Then he added that I could be in this remission (I'm still in remission, just showing early signs of relapse) for several years! Well, I wasn't expecting to be here in several years! Then he said, in no way would he recommend a transplant for me right now. The risks of an allotransplant (someone else's marrow) are too great, the mortality being the 25-50% I've often mentioned. I'm in too good a condition to take those kinds of risks, he said. Then, he said the CD 38 antigen has been discounted as an indicator of aggressive behavior in the disease and should be ignored. And THEN, he said that if he had ten patients in my current condition that he would expect all ten to be alive in ten years!
What?! That's the first time I've heard those kinds of numbers. Then he said he thought we still could collect stem cells and store them away for later, but we'd have to do some novel things. He wants to treat me with two of the drugs I had last year, that worked so well (cytoxan and Rituxan) to "purge" most of the leukemic cells from my circulation, and then collect the stem cells. You may remember that Rituxan is a monoclonal antibody which specifically attacks the CD-20 antigen on my leukemic cells, while not damaging the normal cells. Then the cytoxan forces stem cells out of my marrow and into my peripheral circulation where they can be harvested! So, I'll be seeing my other doc, Brian Koester, again in a couple of weeks to set up the proposed therapy (presuming Kaiser will still pay for it, 'cause now it's going to be even more expensive) for probably about eight weeks from now. I guess I'll lose my hair this time, as we'll be using larger doses of the cytoxan, but, hey, it'll come back and I'll look classy wearing a baseball cap to work for a few weeks. And maybe my hair will come back curly and red!
(I might add at this point that a stem cell collection would be done, not with a cure in mind, but just as another treatment modality. The idea is that if the disease gets out of control, and nothing else works, we can blast my bone marrow, destroying everything in it, and then replace the lost marrow cells with the stored stem cells. We know that there will almost certainly be some cancerous cells collected, which will start growing, too, but the transplant will, in theory, put me back in an earlier stage of the disease.)
So... I've gone from thinking that I had, at most, about three or four years left, to thinking I might live to be old enough to collect some of my social security! Of course, Jeff could be absolutely wrong in his guesses, but it was great to get some apparently good news after hearing just bad stuff for a few weeks. I guess I won't be quite so morose for a while now. That'll be good for all concerned. I just thought I'd pass this most recent news
In other news, last month I was invited by a friend to attend a Veteran’s Day Celebration which was sponsored by the young people of his church. Kathy and I went and it turned out to be a very nice ceremony. There were veterans there from every conflict from World War II to the current Iraq war. I didn’t know until after I’d been invited to attend that I’d also have to get up and give a little speech! Most of you know that I do not do well with public speaking, but I muddled through my experiences in the military and in Vietnam. You know, this was the very first time I’ve been personally invited to a celebration and honored for having spent time in the army and in a war zone. It was nice.
And over Thanksgiving we had a very nice family get-together. My sister Deb and her family from Sacramento came out, and Deb even volunteered to do the cooking! And our daughter Jen with husband Dan and their two kids made the long drive from Dallas, through a blizzard, to be with us. Finally, our eldest, Jon, flew in from Dallas as well. We had a wonderful family time and, as expected, too much food! Plus, Dallas won the football game that day, which was a bonus for all of us.
And I continue to work four days a week, or so. Last weekend I was in the hospital delivering babies, and between deliveries I was watching the local PBS station. They were showing Rick Steves, the travel guide who does shows about places in Europe that he likes to go to. The stories that were showing that day were about Germany. He was showing castles along the Rhein River, the trains, Rothenburg, Munich, Neuschwanstein (the famous castle built by King Ludwig that the Disney castle is fashioned after), the Zugspitz, and more. I sat there getting very homesick, for this foreign country that feels so much like home to me. I didn’t know it at the time, but Kathy was watching the same show at home and was also getting homesick for Germany. We really have such wonderful memories of our years living there! We hope to get back there for a visit next year.
Finally, I wanted to pass on the news that our friends Claudia and Michael Koetzle, who live near Karlsruhe, Germany, had their first baby last month, a little boy named Alexander. New life comes into the world every day, and it’s always special. Isn’t it a wonderful thing? It’s nice to report on a new life for a change; I’ve reported too many deaths in the last year or so.
I think that’s all for now. I’ll be back with another update when there is news to report.
Dave
“We are too soon old, and too late wise.”
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?
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
*************************
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.
Dave
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
*************************
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?
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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!
*******************************************
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.
Dave
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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