Friday, February 27, 2004

Death, Taxes and Home Maintenance

Dave’s So-So Adventure, Book Two
Chapter 2, Verse Six
February 27, 2004
Still (cough) on hold.

Well, this little RSV is kicking my butt. I thought I was getting better last Monday, in fact tried to convince the doc to get on with the show, but after making me listen to my chest, we put it off. Then, I got worse over the next couple of days. I was a little better again yesterday when we went in to the clinic, but had just had the worst night of coughing yet. I was still wheezing, raspy, tired. The nurses called the on-call doc and they decided to hold the cytoxan again, and reculture me for RSV, to see if it was still hanging around or whether my symptoms were just leftover effects of the infection. You know, I do some things in my clinic that folks might consider gross, but when they squirt that saline up my nose and have me blow it back that’s gross!

So we came home and I tried to rest, but my wheezing is worst when I lie down (or is it “lay” down?). I’ve been using an albuterol inhaler, which Jon and Rose-Ellen will be very familiar with. It’s a drug which dilates the bronchioles, making it easier to breathe. Breathing’s a good thing.

So, sickness and chemo or not, life goes on. Now, there are certain things in life that one cannot escape. Do you remember what they are? Those of you who said “Death and Taxes” are not home owners, because Home Maintenance is the third thing that you can never avoid, no matter what else is going on.

We have single pedestal chairs around our dinette, with casters on the base. The chairs rock back and forth, a bit. So, we came home from the clinic and I was sitting in my chair. It seemed to be leaning back a bit more than usual. I looked at it, it looked normal. I tightened up the adjusting screw that tightens the spring resistance and sat back down. And then, the seat fell off the pedestal, and I was on my butt, on the floor! Fortunately, I was still in the seat, which protected my butt from impaling upon the remains of the pedestal! Damn, now what?!

Well, the connecting rod had broken off completely from metal fatigue. Just what I needed. But, we have a few similar chairs in the basement that have various injuries, most suffered at the hands, or weight, of our youngest, who sits down rather heavily. I thought I'd go down to the basement to see if I could find some parts to salvage with which to repair the broken one in the dinette.

Which I did. I was in the basement, checking out the inventory in the chair junkyard when I noticed a puddle of moisture under the water heater nearby. Oh no! I got a flashlight to more closely inspect the much needed and much used item. And, you home owners know what was going on. It was rusting out and leaking! “How could this be,” I thought. “It’s only ten and a half years old.” I went upstairs to check the warranty. You homeowners know what it said, don’t you? It was good for ten years.

Well, I went to the daily paper looking for a sale on water heaters, and there were none, of course. I went out to walk over to the mailbox to get the mail while I mulled our options. We had to do something soon, because after Monday, I’d be out of circulation, sort of under house arrest, if you will, for at least a few weeks while my marrow recovered from the cytoxan.

It has been rather windy recently, as it often is here in the spring. I opened the front door and there were two shingles greeting me on the front steps!! Interestingly, we’re one of the few remaining communities in which the local design codes require you to cover your roof with tinder. We have cedar shake shingles on the roof, and they, too, are ten and a half years old. And a few tend to blow off every time we have high winds. We now have to call the roofer, who can never go away until he’s found at least $500 worth of shingles to replace. Arghhh!

Since I can’t do too much, I brought one of my telescopes inside to mess with it. I have three ‘scopes; small, medium and big. I love looking through the scopes, seeing ancient worlds in the heavens. It’s just fascinating, mesmerizing. I brought in the big scope to do some maintenance on it. It’s fully computerized and can find things that I can’t, but it needed to have the finder scopes adjusted and aligned. But when I turned it on, it blew a chip! It just up and quit! Wouldn’t do anything at all. Great.

So, yesterday, Kathy and I went to Sears, found a water heater on sale for $400, plus $200 installation, of course, plus fees and taxes. It was installed very quickly, I’m happy to say. And then I took the scope to my local telescope shop where I bought it. They fixed it, under warranty, even though it was out of warranty, and I brought it home. And I patched together the chair with some other parts. Now we just need to call the roofer.

I’m still coughing today, but not nearly as badly, and I fully expect that we can proceed with the cytoxan on Monday. I’d like to get this “adventure” back on track. It’s been going much too slowly.

And so we’ll get this update out to all you folks so everybody will know of our latest activities. And lack of progress. Until later....


Monday, February 23, 2004

This Is An Adventure?

Dave’s Great Adventure, Book 2
Chapter 2, Verse 5
February 23, 2004
This is an adventure?

I guess I can’t use the Robert Burns quote again...the “aft aglay” thing...been too recent that I used it. Maybe I can do a search of Burns’ stuff to find something that counsels patience.

We stayed home this weekend waiting for me to get better, and slowly I did. I woke up Sunday morning with a clear chest, but by the afternoon I was again wheezing and coughing. I was disappointed. I called the RMCC on-call folks and told them that I was still sick and would be unlikely to be able to get the cytoxan the next day, so that they would cancel the orders and all the meds wouldn't get brewed up in the pharmacy unnecessarily, and then get wasted.

But today, I woke up with an absolutely clear chest, no congestion and feeling great! I thought, hey, all Kathy’s hot tea has fixed me. I can get the stuff today after all. So we went in ( I had an appointment anyway to get checked out, to get the catheter flushed, etc.) and were there by 9:30. We went to the back where I was to get the cytoxin and the other meds, but first we had to discuss the fact that I had put everything on hold. I told them I felt just great today, but after a couple of calls, they decided to have the doc in the clinic, Doc McSweeney, check me out first. He’s the doc that first put everything on hold last week after I showed up on their doorstep with my cough. Pete’s from New Zealand.

We talked about how I was feeling and I told him I felt just fine. Then he checked me out. He looked in my eyes, in my throat and then listened to my chest. Then he said, “ ‘ave yoo listen’d ta ya chest?” I looked a little puzzled. “Wi’ a ste' oscope?” he continued. I admitted I hadn’t. He insisted that I do just that and handed me his stethoscope. I applied it to my chest and with one breath was hearing wheezing!

Damn! I only THOUGHT I was better.

“Tha’ was better than tellin’ yoo , wasn’ it?” he said. Indeed, how could I argue with what I was hearing. Pete then said we needed to wait longer, perhaps until this coming Thursday, to see if my chest truly would clear. So we made more appointments, Kathy and I proceeded home and she started fetching me more hot tea!

So goes this very slow “adventure.” But something else happened today, only Kathy didn’t realize it at first. Today was our 34 1/2th anniversary. I took Kathy out for a late breakfast at El Tejado, where she ordered chilaquiles, her favorite Mexican breakfast. Then, this afternoon a bunch of flowers arrived for her, reminding her of this rather obscure anniversary. I figured that was the least I could do for her after all the caring she’s done for me over the last two years, not to mention the previous three decades! It really has been quite a ride for us. When we met, I was an ROTC cadet and she was a student teacher in a small college in west Texas. Now, decades later, we have three kids, a nice home, and because of a love of traveling I got from my parents, we’ve been all over the western hemisphere. I guess we’ve been as far west as Hawaii and as far east as Moscow, and from the Arctic Circle in Norway to, more recently, the Antarctic region. Quite a ride.

So, today I found that my family has been up to its usual pranks. A couple of boxes appeared in the mail. The larger was labeled, “Open in case of baldness.” Well, I’m not yet bald but expect to be soon, so I opened the boxes.

I’m now ready for any situation involving baldness and an unprotected head. The box contained a Broncos hard hat, a coonskin cap, a classic ABA Nuggets baseball cap, a Viking horned helmet, a cowboy hat, a Burger King crown and a “write-your-own-message” ball cap with detachable letters. The prepared message on it says “Chemo Victim.” Plus, there were a couple of baggies with hair from our granddaughters with a bottle of Elmer’s Glue with which to apply it to my bare pate. And that wasn’t all. If you’ve seen ads for the movie Calendar Girls, it involves a group of middle aged women who pose undressed in calendar pictures to raise money for leukemia research after the husband of one of them found he had this diagnosis. Well, I’ve now got the calendar! Proceeds of the sale of the calendar still go to leukemia research. Look for one at I asked Kathy. She said she wouldn’t pose nude in a calendar for me! How about that?

Plus, I’ve been getting daily get well/ thinking of you cards from my friends and co-workers, Joan and Debbie. Thanks, guys. I look forward to your daily messages.

Meanwhile, I’m almost getting used to having the silly tube hanging out of my chest. It still bothers me, but I can ignore it for the most part. I shower daily with it hanging out, washing carefully around it, and then I have to put a bactericidal potion on the wound every day. I also usually sandwich the thing between two layers of gauze and tape it to my chest to keep it from flopping around too much and tangling in my undershirt. I hope to get it taken out in just over two weeks. When I asked how it is taken out, the doc said, “We yank it out.” Ouch! I can’t wait.

Recently a couple of folks have told me, after reading the stuff I churned out from the Antarctic, and from this never-ending “adventure” series, that I ought to be a writer. Can you believe it? Hey, folks. I AM a writer. Is there any doubt that I write a lot of stuff? It’s just that nobody will actually pay to read my stuff. I have to inflict it on friends and family. Actually, you can all blame the aforementioned Joan for having to hit the delete button so often when you see the dreaded letters “DGA” in an incoming e-mail. Back in July 2002, when I was about to start my first round of chemotherapy, she asked, “Are you going to keep a journal?” And I did. And you’re still getting it.

And just last weekend I found out why. In an article in the Denver Post book section, the Books Editor reviewed a book by a doctor Alice Flaherty, a neurologist, about a condition called “hypergraphia“ which is a compulsion to write. Dr. Flaherty has this affliction. (I’m not making any of this up.) Her book is called The Midnight Disease. It turns out that brain damage or disorders may be a cause of hypergraphia. Many famous writers, like Dostoevski, Lewis Carroll, Tennyson, Poe and others were epileptic. Also, manic depressives tend to write a lot. Flaherty noted that while in a depression support group, all the manic depressives were keeping memoirs. Hmmm. So, did one of the many rocks that hit my head during my childhood cause all this, or is it just my latent manic-depressive personality that’s to blame?

I’ll leave you to ponder this interesting question. And, of course, there’ll be more later.


Friday, February 20, 2004

Back on Hold Because of the RSV!

Dave’s Great Adventure, Book 2
Chapter 2, Verse 4
February 20, 2004
Back on “hold”

Well, about twelve hours after I hit the send button to let you kind and patient folks know that I was back on track with my treatments, I’m no longer back on track. I’ll explain momentarily, and I’ll give you a new vocabulary lesson, but first I want to go back to yesterday’s letter.

I have to admit to writing “under the influence.” Of Nyquil, that is. You know, “The nighttime, sniffling, sneezing, coughing, aching, stuffy head, fever so you can sleep medicine.” It doesn’t mention anywhere in the fine print that it helps improve one’s writing skills. Going over last night’s message, I made a number of points, all valid to some degree or another, but didn’t get to any real conclusions. Then, I just signed off without even a closing. Sorry. I talked about “what’s the point of life,” then went to what I think is a great little piece on death. Sounded almost like a suicide note!

Which it wasn’t, ‘cause I’m still here, bending your figurative ear with my literary attempts. My first point should have been the conclusion that I really think there is more to life than just being alive. All my career I have seen unfortunate folks who were handed a death sentence in one form or another, and have seen many of them go to extraordinary lengths to try to cheat death. We can’t do that indefinitely, of course, but I’ve seen folks go through multitudinous, horrible, ravaging treatments, just to try to stay alive another week, another day. Just a few years ago, I saw one of my colleagues, who was within days of dying of prostate cancer, go through intensive radiation treatments to try to hold off death for just a while longer. I’ve always felt that when living had no more joy, then it was time to count your blessings, smile at your family and check out. I just don’t think that life at any cost has any value. It’s hard to know when that point has come, I suppose. We’ll see how brave I am at stopping my treatments when I get to that point.

I’m not nearly to that point, of course. Thus far my treatments, though extensive and expensive, haven't been nearly as bad as a lot of folks have had to go through. And, most importantly, they allow me to live a normal life between them. Kathy and I are still having lots of fun. The trip to the Antarctic, for example, was wonderful. And just as important, while we were traveling there, I hardly thought about being sick at all. That's the reason for living, I think, to enjoy being alive, not just to be alive.

And the Extra Credit Reading Assignment? Well, I just think that Dr. Lewis made some very interesting and valid points about dying. Especially the sentence, toward the end, that says, “We will have to give up the notion that death is catastrophe, or detestable, or avoidable, or even strange.” It really isn’t strange at all, is it? We just don’t like to think about it.

Now, back to breaking news. Kathy and I went in to the clinic today. I was still feeling better, and my chest had almost cleared. We were to start the cytoxin today, the nasty stuff, so that we could proceed with the stem cell collection in the next ten days or so. I saw Jeff walk in, toward me, shaking his head. “It’s RSV.” he said. “You kidding me?” I asked. But he wasn’t. The tests they had done the day before, for various viruses, had come back positive for RSV, respiratory syncytial virus.

Now many of you have never heard of this, but most of you have had it. It’s a very common cause of illness but mostly among children, leading to bronchitis, wheezing, coughing, and even death, especially in small kids. If you are a teacher, as I know some of you are, or if you work with kids a lot, you’ve had it, probably recently too. When the nurses at work heard I had RSV they told me it was because I’m still a little boy at heart!

Now, RSV in adults isn’t usually a big deal. But if your immune system is compromised, as mine was about to be, it can lead to serious respiratory problems, and death. So, Jeff said we should hold off on the cytoxin. I’m disappointed that we’re going to have to delay the process, but certainly understand. Kathy is relieved that we’re not going forward with things while I’m feeling sick! Since the incubation period of the virus is about 3-5 days or so, and I started feeling ill the first day of the treatments, it’s likely that I got it from one of the patients I saw during the week between Antarctica and the chemotherapy. Our patients are always bringing their sick kids in with them, when they can’t go to school, or to the sitter, because they are sick!

So, since we weren’t going to spend our day at the clinic getting the chemotherapy, Kathy and I thought that we might go to the Denver Museum of Nature and Science. They are putting on a major exhibition about Machu Picchu, about which I have a great interest. They have artifacts from all over the world and some wonderful historical displays. We thought that it should be quiet there, on a Friday morning. Wrong! There must have been ten or more buses of kids there on field trips, seeing the same things we wanted to see. We decided I didn't need to be around kids, either to give them what I had or to get whatever they might be carrying. We left and will go back sometime when it really might be quiet.

And that’s about all the news. But, I thought some of you might be interested in this “central line” that’s in my chest. Most of you probably have no idea what the thing even looks like. My co-workers were interested, and they see stuff like this more than most of you, so let me describe it to you (if you care to read about it; if not, that's all there is to this letter).

I mentioned that the reason for it was twofold; one was to be able to put highly toxic chemicals into my body through a very large blood vessel, where it would be rapidly diluted. The second purpose is to be able to withdraw large amounts of blood from me to collect the stem cells, presuming we are able to mobilize enough of them with this therapy. What you see, externally, is a tube extending out of my upper chest, on the right side. If I had a breast, it would be coming out just above the breast (well, speaking of breasts, when I’m getting steroids, I gain weight and in fact do develop little boobies, but they’re only temporary!). The tube is a total of about 7 inches long, and goes down and divides into a “Y,” leading to two tubes, a red one and a blue one, signifying the inner and outer of the two lumens, or tubes. The thing is stitched to my chest with two sutures that drive me nuts! (I asked my doc today if we could take them out [the stitches] but he wouldn’t.) From where the tube goes under the skin of my upper right chest, it tunnels up my chest to where my collarbone joins my breastbone, then goes over the end of the collarbone. You can feel all this just under the skin! Then it hooks around the bone and goes straight down into the jugular vein in the neck, which leads to the superior vena cava, which leads to the heart. After tomorrow, I can shower normally and get it wet, but I’ve got to keep it clean, obviously. For “maintenance” I have to flush each tube out with an anticoagulant solution every day, and treat the wound where it enters the chest with an antibacterial coating each morning. I can feel the thing when I lie down in bed, and haven’t gotten used to lying on it yet. It still hurts a little bit, and I notice it most when I cough. I don’t really care for it, but as I've said before, lots of folks have gone though far worse than this. And this is nothing as compared to what I’ll have to go through when I need to take back my stem cells at some point!

And, that’s all you get for now. We’ll update what’s going on as things change.


“We make a living by what we get. We make a life by what we give.”
--Winston Churchill

Thursday, February 19, 2004

Back on Track! (And Your Reading Assignment!)

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.

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.)

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.

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,


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,


“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....”


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.