Monday, July 21, 2008


Dave’s Great Adventure, Book Three
Chapter 5, Verse 2
July 21, 2008

When our family was very young, many years ago, we did a lot of camping in a great big blue tent.

I’m not exactly sure how we came to be campers because neither my family nor Kathy’s were campers. I did enjoy some camping during my high school years in Germany, when a couple of friends and I would go out in the forests and just lay our sleeping bags on the ground. It wasn’t really legal to camp in the forests in Germany except in designated camp grounds, but we were out where no one could see us and we did no harm. We carried along Korean War vintage army C-rations, which were great fun for teenage boys to go through, because they all included small packs of cigarettes in them, plus petrified bars of dark chocolate which were close to being inedible. We also heated canned soup on Sterno stoves and ate some of the C-ration delicacies; lima beans and ham, beans and franks, turkey loaf, canned bread and the like. Sometime we got lucky and found canned peaches, a real treat. One night we heard a beast of some sort near our little encampment, coming slowly toward us. The rustling in the brush got closer and closer, scaring the heck out of the three teenage camper boys, until the “beast” entered our campsite and turned out to be a “ferocious” hedgehog, all of about ten inches in length. Hey, it SOUNDED a lot bigger than that. Hedgehogs, or “Igels,” as they’re called in German, are supposed to be good luck. I guess our luck that it wasn’t a wild boar!

Kathy and I were married in 1969 and just under a year later I was in Vietnam, leaving her with a newborn to care for. We didn’t plan things that way, but it was for the best as having a child to care for kept her mind off what I might be doing during my year away. I did a little “camping” during my time in Vietnam and was reintroduced to army C-rations, which hadn’t changed an awful lot. However, by now the army had also introduced LRRP (Long Range Recon Patrol) rations, which were freeze dried and lighter to carry around. They were naturally called “lurps” and were highly prized as they at least seemed to taste better than the more familiar C-rations.

When I returned to the states I was assigned, by choice, to the military hospital in El Paso, Texas, then called William Beaumont Army Hospital. As a “reward” for my service in the war I was made the aide-de-camp to the commanding general, supposedly a plum job but one I really hated. I really had very little to do except go around to various functions with the general and his staff and open doors, read certificates at promotion and award ceremonies, show VIPs around, and sit at my desk. Later I got promoted out of that job and got to work around the medical clinics and the emergency room, which crystallized my interest in medicine as a career.

But, on the weekends, if the general wasn’t busy with some function, Kathy and I would get into our light blue 1965 Plymouth Valiant and head north to the mountains and into the Gila National Forest, in southern New Mexico. This was the area Billy the Kid lived in during some of his younger years, and the Indian chief Geronimo and his braves lived in the area as well. The mountains were thick with tall pines and I loved driving the winding roads through the forests. There were also ancient Indian cliff dwellings with which I was fascinated and many, many beautiful places along the Gila River, which was more of a stream really, which beckoned with numerous camp sites. I thought we ought to camp there sometime.

Coincidentally one of the more senior officers at Beaumont was selling all his camping stuff, since he was graduating to a camping trailer. I was just a lieutenant, making maybe $1000 month or something so he gave us a great deal on all of his stuff. We bought all his stuff for $50 and that started our camping career. That’s where we got that big blue tent, which was maybe eight by eighteen feet, with three rooms. It was huge! We started camping in those beautiful spots along the Gila River when our eldest son was just over two years old, back when he was afraid of the stream for fear that there were sharks in it. How did he get that idea? We started camping along the banks of the stream, which was sandy with rounded river rocks. Across the water were large pines, cottonwoods and behind the trees magnificent yellow limestone cliffs rose up a couple of hundred feet. Later we camped all over southern New Mexico, west Texas and up into the Midwest in that huge tent. We had some great times, but Kathy also has very unpleasant memories of trying to cook on our small camp stove while we were camped in the Badlands of South Dakota in that tent and the wind was blowing probably fifty miles an hour.

But our favorite place to camp, above all others, was an isolated primitive area in the Gila (“HEE-la”) National Forest, about two hundred miles north of El Paso. It was great to camp there because our special place wasn’t really even a camp ground. Therefore it didn’t attract a lot of people. It was fifteen miles of bad road off any pavement and was hidden down in a small valley which had a small, intermittently running stream. We sometimes went the whole weekend without seeing another person or car when we were there. It was so absolutely quiet and peaceful that you could hear the hummingbirds zipping around and the calls of the other birds in the area. Since it wasn’t developed and there usually weren’t other folks around, the kids couldn’t hurt anything. They could throw rocks, build dams in the creek, and use the hatchet on tree stumps and to chop up firewood. They could eat with their hands, they could play in the stream, they could get messy, pee in the woods and generally do lots of the things that kids are told they can’t do around the house or in the neighborhood.

The central part of our camping area was always the campfire. It was invariably a primitive fire within a stone fire ring, and we used it for heat, cooking and entertainment. We’d cook hot dogs on a stick or burgers on a small grill which was perched upon the rocks. We could heat up chili or stews in pans set among the coals. After we ate, the kids just loved to play around the fire, adding firewood to make it burn larger and more brightly, melting plastic spoons into long white strands or watching molten blobs of the fiery plastic bomb the firewood, melting pennies on the rocks, and burning the trash we’d generated. It was tremendous fun. As the night got longer the fire would burn down but we’d stir it up to make it blaze again, enjoying the light and heat until it once again started to burn down. We’d stir the coals repeatedly until it got close to time to go to sleep, but by then the bonfire would have been reduced to just a few glowing cinders.

In a way, my marrow has now been reduced to a few cinders as well. We’ve been “burning” my marrow with the chemotherapeutic drugs for over five months now, but whenever my white counts dropped too low, we could “stir up the fire,” if you’ll allow me to use that metaphor, with Neupogen. Generally with a course of that white cell stimulating drug my white counts would go from perhaps 1,200 up to 25,000 or so in just a few days, and they would be mostly bacteria fighting neutrophils.

When I last told you about how things were going I mentioned that my white counts had dropped to about 700, about as low as they’ve ever been. That is a critically low number. In fact, it has been entertaining, in a dark sort of way, seeing the labs folks draw my blood, run it through the Coulter Counter, or whatever device they use these days to generate blood counts, and then quickly hand deliver the results to my nurse with the word “Panic” written at the top. Critically low or high lab test results are called “panic values” as they represent potentially life threatening problems. And you see, whenever the laboratory comes up with any such result, the folks there have the responsibility to get it to the patient’s doctor or nurse immediately. Not until they do are they relieved of the responsibility, and legal liability too, for handling the results. So, they hand-carry my lab test results right to my nurse with something like “Panic, Delivered to Nurse Johnson at 9:23am” written at the top of the sheet. That gets the monkey off their backs.

So, a couple of weeks ago my white counts were (again) at those “panic” levels. But I had planned to go to Colorado for a friend’s wedding the following week. Being closed up in an aluminum tube with 85 other people during a flight to Colorado with a white count of only 700 was a recipe for infections and wasn’t a good idea at all. I was actually surprised when the clinic folks didn’t immediately put me back on the Neupogen, as low as my numbers were, so I called the next day to ask if I could get my counts rechecked in a few more days, rather than waiting the normal full week, to see if the counts were recovering or not. That’s all it took for them to reconsider and put me immediately on the medication. So I went in to the clinic, got my prescription for $9000 worth of Neupogen (manufactured by Amgen) filled, paid my co-pay of $9.00 (amazing!) and went home to begin my daily injections.

And it worked, but not nearly as well as it had been. After the usual five days of injections, my white count was up, but only to about 5,000, not the usual 25,000. The “cinders” just couldn’t generate many white cells this time. But that was high enough, and actually in the normal range, so my doc let me fly to Colorado with “precautions.” I did carry a mask in my pocket and actually would have put it on if I’d seen any germs coming my way. Really! Since my counts generally drop fairly rapidly after I finish the injections, I tried to stay away from too many folks at the wedding, but it was really hard to do with so many old friends around. We also didn’t get out to see our Denver area friends while we were in town as we’d planned because the trip fatigued me more than I expected it to. I did okay, and didn’t get sick but probably wouldn’t have even thought about making that trip if it had been in the wintertime cold and flu season.

But back to the cinders; I’ve now taken a couple more courses of Neupogen since I got back from Colorado and my white counts are looking okay. But my platelets are still low. My marrow can’t make them right now. They’ve been low, in the 60,000 to 70,000 range ever since my last round of drugs. That’s too low for even the M. D. Anderson folks. I was to have started my sixth and last (!) round of chemotherapy last week, but on Monday, and again Wednesday and then last Friday, my platelets were too low. I’m going in again tomorrow to get a blood count and if my platelets have managed to creep up to at least 75,000, we’ll start the drugs flowing. I can’t wait! I say that both with sincerity and, at the same time, with sarcasm, as I don’t look forward to it, but I want to get it done.

The day after I sent out my last little letter an article came out in our newspaper, and likely yours too, questioning the cost-benefit value of Avastin. As I said, it has become very, very popular but is very, very expensive. It is now being used on many folks who really have no hope of survival but it extends their life by a short time, sometimes a few months. How much is a few more months of life worth? Can we put a value on it? Tony Snow was almost certainly taking Avastin for his bowel cancer. He’s one of the first I heard mention using drugs to turn a malignant condition into a chronic disease, yet he died recently, as you know. It’s not a magic drug which can cure everything. In fact, as I mentioned, it really doesn’t cure anything. Genentech sold $3.5 billion worth of Avastin last year. There are probably very few of us, certainly no one I know, who could afford to pay for the stuff on our own, so the taxpayers end up with the tab. How much can we afford?

I’ve got to cut this off. I’ve been trying to get this written for a week or so now, so I’m going to put a stop to it at this point and get it sent out soon. I’ll keep you updated as to how things go. More later….


“Live everyday as if it’s your last and one day you’ll be right.”—Harry “Breaker” Morant, Australian Bushveldt Carbineers

Thursday, July 3, 2008

Uncharted Waters

Dave’s Great Adventure, Book Three
Chapter 5, Verse 1
July 3, 2008
Uncharted Waters

A few years ago I traveled to Antarctica with my brothers. We went aboard an ice-class ship to visit one of the most extraordinary and wonderful parts of our globe. That part of the world is a long way away and is out of the normal lanes of traffic, and it’s very hard to get there. It’s probably about 8,000 air miles from Dallas and takes about fifteen hours of flight time to get to Ushuaia, at the tip of South America, before you can get on the ship that takes two days of sailing across what can be the very rough waters of the Drake Passage, just to get you to the continent’s outer islands. Until a few years ago only about 250,000 people had ever set foot on the continent. It is an incredible voyage that few people have been fortunate enough to experience.

But in my mind, it’s very much worth the long, tiring trip. I have described Antarctica as “otherworldly” as it has scenery and vistas found nowhere else. There are barren islands, with black volcanic beaches littered with huge whale bones. There is a still-active volcano with a caldera about nine miles across. One side of the caldera has collapsed and so it has filled with sea water. Your ship can sail right in most of the time. And there you can, if you want, bathe in some hot springs on the black beach. Meanwhile, just yards away the Antarctic Ocean which fills the caldera is a very cold 32 degrees. Back at sea, there are huge, miles long (!) icebergs that your ship sails by, and millions of smaller icebergs and “bergy bits” that bounce off the sides of the ship as it plows through the ice-filled waters. The icebergs are mostly bright white, but there are also deep cobalt blue icebergs and ones with all manner of dark stripes in shades of black, brown and blue.

On many islands there are colonies of tens of thousands of varying species of penguins, who allow you to walk among them without any alarm whatever; they think you’re one of them since all their predators are either in the water or in the air. To them, if you walk, you’re a penguin. There are also seals by the hundreds, whales here and there, and albatrosses, petrels, terns, skuas and gulls. In the waters off the penguin colonies leopard seals, which survive by eating penguins, patrol back and forth, waiting for their next meal. The penguins know the leopard seals are there, but the penguins must eat too, so they gather by the dozens along the water’s edge, needing to get to the krill and small fish. They are afraid to enter the water, but finally the crush of penguins along the shore pushes a few in and then, quickly, they all go in, knowing that the leopard seal can catch but one. Meanwhile, while the adults are away, the petrels and skuas try to steal penguin chicks and strip away their flesh while they’re still trying to escape. Nature at its rawest.

You can take off your parka, because it does get “warm” in the bright Antarctic sun when you’ve been hiking for a while in deep snow, and sit in a snowbank at any of hundreds of locations along the coastline and look for miles and miles around you and see nothing but islands of black volcanic rock jutting from the dark indigo-blue water, and mountains all around covered with snow and ice. The views are simply stunning. The sea is filled with ice in all sizes and in uncounted fantastical shapes. As you survey the incredible panorama you notice that you hear nothing but the wind, the gentle surf and the ice it carries, softly grating against the usually rocky shore, and depending on where you are, you hear the humming calls of the penguins. There is no sound except that of nature. No airplanes overhead. No cars in the distance. No air conditioner compressors droning. No garbage trucks, no music from someone’s boom box, no dogs barking. There are no contrails in the sky, no roads, no buildings. It’s just you and your shipmates at the end of the world.

While moving among the various landing spots, the ship’s crew navigates by intense observation of the seas and shores, by radar and, I think by sonar too. They need to know exactly what is in the area and they can’t plot a course simply by following the sea charts, because we’re, as mentioned, at the end of the world. There are, in fact, maps of the area, but since we are so far from civilization, there has been no need to accurately survey the oceans. I visited the bridge during one of our sailings from one spot to the next and looked at the captain’s sea charts. I found out why I always saw one or two crewmen on the bridge looking out to our direction of travel with binoculars. It was extremely important that they were looking out at all times. All along our course, the sea charts warned, “Uncharted… uncharted… uncharted.”

And so I’ve also entered uncharted waters, in a way. I have now completed five rounds of chemotherapy, of a new and untested regimen which has been given to but six other patients before me (I have to presume the other six are doing reasonably well and that no one has died from the therapy because they haven’t stopped the clinical study). I’ve never completed more than four rounds and four months of chemotherapy in years past and that seemed like more than enough at the time. Four rounds were enough in 2002 to make my doc stop the drugs for fear that we were going to destroy my remaining stem cells. But this time we’re going on for a total of six rounds. I’m finding that things have changed a bit with my extended exposure to the various toxic substances I’ve been getting. The recovery from my Rounds Four and Five went pretty well once I got over the incredible fatigue that hits a few days after we start. I had most of the usual symptoms of shedding hair, fatigue, achy joints, hoarse voice, etc. But a couple of new symptoms turned up as well, this time. First, I have been starting to have small mouth ulcers, something I’ve been warned I might get since my first chemotherapy back in 2002, but I never had any. Well, things are catching up with me now. I had a cluster of small mouth ulcers, very much like small canker sores, for those of you who are aware of what those are, but they remained small and generally not too much of a problem, being more of an irritant than a seriously painful problem as so many other folks have experienced. They healed over in about ten days or so.

And another strange symptom has cropped up as well. I have been having an altered sense of smell and taste. More often than not I sense the odor of what is rather like stale cigarette smoke when I’m nowhere near cigarettes and in places where no cigarette has ever been lit, like in our home. And some flavors have become strangely unpalatable, like cola drinks, which now taste bitter and unpleasant. And it’s the same whether the drink is a diet or regular drink, so it’s not the sweetener as I supposed at first. Because of this we bought some raspberry flavored water for me to drink during my last round of drugs and I couldn’t drink it, it tasted so awful to me. When I mentioned this to my doctor he remarked, “Oh, yeah, that’s very common.” Now, I don’t remember ever hearing about this possibility but if I did I long ago forgot completely about it. Fortunately, most foods still taste normal so I can freely indulge in BBQ and Italian foods, among other high calorie dishes. I still haven’t lost any weight.

And another thing I’ve experienced is a small case of shingles, the sometimes very painful eruption of blisters on the body, generally on the trunk. Shingles is (are?) caused by the activation of the virus varicella zoster, which is the same virus that gave me chicken pox many decades ago. Well, when the chicken pox went away, the virus didn’t. It’s been hanging out in my body, like it is in yours if you’ve had chicken pox, just waiting for a chance to come back. Generally it comes back in folks when they’re stressed, very tired, elderly or, in my case, immunocompromised (AND I’m semi-elderly, stressed and very tired too!). Fortunately my case was very mild and short-lived, probably because I’m taking the anti-viral drug Zovirax on a daily basis.

Other things have happened as well. Remember Rosanne Rosannadanna? She was the Gilda Radner character who was always finding that things didn’t go just right. “It’s always something” she’d say. That’s what it was like trying to get my fifth round of drugs going. It was always something! First, when I saw my doc to get prepared for that round, my white count was lower than he wanted, so he put me back on Neupogen again. Then, just a couple of days later I was called and told that my magnesium levels were low and that I needed to take supplements. I wasn’t crazy about that idea as most magnesium products are also laxative in nature, but then I decided I could see certain advantages in that action, especially during the infusions, given the well-known “brick-making” side effects of the anti-nausea medications.

The day we were to start Round Five, more complications arose. My platelets, which had been low but adequate at about 80,000 (normal is about 150,000 to 300,000) the week before, were found to have dropped when we did the blood test to see if my white count had risen. The white count had indeed risen, but now we had other issues to deal with. Now, the guidelines of the Texas Cancer Center—Denton don’t permit chemotherapy if the patient’s platelets are below 100,000. M. D. Anderson is a bit more cavalier with their guidelines and permits the infusions down to a level of 75,000 platelets. My level had dropped to 74,000, just shy of the lower limit. Many phone calls between Denton and Houston ensued. Since my numbers had been trending downwards for a couple weeks, they decided to postpone the infusions and I had to come back in two days to see what the trend was. Well, two days later the count was still 74,000! More phone calls. Finally the folks at M. D. Anderson decided that though my count was low, it wasn’t still dropping and they gave the go-ahead for Round Five. And so we spent three days getting the usual infusions.

The recovery from that round wasn’t as bad as I’ve had in past rounds. First, the headaches have been much, much less severe and don’t last nearly as long since we made the change from the anti-nausea drug Zofran to Kytril. Secondly, the body aches over the last couple of rounds haven’t been nearly so bad and the joint pains actually seem to be resolving. And the days of extreme fatigue, which have routinely been knocking me flat for several days after the infusions are much fewer now. I really only had one really bad day after the last cycle.

But, my marrow is screaming for mercy! I can’t actually hear it screaming but I know it is. I get blood counts done weekly, and Monday, just three days ago, my counts were about as low as they’ve ever been. Remember that my white count was about 100,000 when we started this regimen in February, and that a normal white count is about 3,000 to about 10,000 or so. Well, as of Monday my white count was only 700, with just 100 of the bacteria fighters, the neutrophils. This is incredibly low, and I continue to wonder why I haven’t gotten any serious infections, abscesses, colds, etc. A large part of the answer is that Kathy watches me like a hawk, and is always ready with hand cleaner for me, she keeps me out of stores, opens the doors, etc., to protect me from too much exposure to environmental bacteria. But, just like anyone else, I have bacteria all over the outside and inside my body, yet my few bacteria fighters have done an amazing job of keeping me well, despite their depleted numbers. At any rate, we’re “calling up the reserves,” and so I’m on Neupogen again for five days to give my white count a boost.

If things continue to go well, I’ll be getting my sixth and final round of this chemotherapy in about two weeks and then all I have to do is recover from it and the extended effects of all six rounds of the drugs. I really am getting tired of always feeling tired, and of having to sit for hours in the infusion chairs, knowing what’s coming after, which is that I’m going to be sick again. And I’m tired of being confined to our home for a couple of weeks at a time and having to schedule our lives around my drug regimens. But, I am so fortunate to be able to participate in this remarkable drug study and find that it seems to be working so well. We really won’t know precisely how well it’s working, however, for many months, or even (hopefully) several years after we finish, because the measure of success will be to see if I can again get into remission and if I do, how long will the remission be. Will FCR/Avastin be better, the same or worse than the standard FCR regimen? Or just more expensive. That’s what we’ll be trying to find out.

I’ve told you about the bevacizumab, or Avastin, that I’m getting as part of my drug regimen at $30,000 a dose. And I’ve told you that it’s made by Genentech, the same folks that make the Rituxan I get at about $2000 or so per dose. Well, if you haven’t done so, you might take this opportunity to buy some stock in Genentech, because just in the few months I’ve been taking the Avastin, I’ve seen more and more indications for its use. First it was added for breast cancer, then cervical cancer, then other lung cancers and apparently almost any solid cancer, like bowel and pancreatic, etc. Now I have read that Senator Kennedy may be getting Avastin for his brain tumor. It’s even being used to treat non-malignant conditions like macular degeneration. Now, the thing about Avastin is that it doesn’t really cure anything, as far as I know. What it does is prevent the growth of the blood vessels that let tumors grow and spread. It contains the cancer, but doesn’t kill it. It turns a deadly disease into a chronic illness. So a patient is unlikely to get a six month course of Avastin and then go on their way, cured. More likely it will require repeated treatments for the rest of the patient’s life. And if that’s so, Genentech is going to sell a lot of their very expensive drug. And if the study I’m in, with Avastin being used for chronic lymphocytic leukemia, pans out as an improvement, there will be yet another huge market for the drug! Hey, the stock market is down these days. It’s an opportunity to get some stock cheap, probably (I say, without having looked it up to have any idea what it costs per share).

I received a most wonderful, kind and completely unexpected e-mail a couple of days ago from, as I told her, a “perfect stranger.” (She wrote back that she wasn’t perfect but had some folks fooled). This woman was a grade school friend of my younger sister some forty years ago and was trying to catch up with her using search engines when she stumbled into my blog. Part of what she wrote was: “Although you and I do not know each other personally, I felt compelled to email you…. Your blog is engrossing, touching, and, when one is just about overwhelmed at reading what you have endured, includes welcome levity. I admire your strength, attitude, sense of humor, and the fact that you allow yourself to feel & express your thoughts, fears, and emotions. I once read that we are all here to learn &/or teach in an attempt to perfect ourselves. (Kubler-Ross or Wayne Dyer I think) If that premise is true, you have had to learn way too much already. However, you are teaching many through your excellent example of how to deal with extreme adversity. And surely others will be helped by all that has been learned through your experience with CLL and Rx. It is my sincerest hope that your CLL will promptly slither back into remission and that your future will be filled with much more pleasant experiences.” I am very gratified to hear this from her and know that my experiences can be instructive and of interest to others, which is one reason I put it into the blogosphere (with much encouragement from our daughter). As I told her, also, I tend to be more open and honest in my writing many times than in person, where I will generally deny feeling crappy, tired, sick or whatever. The things I’m learning are the same things so many others before me have had to learn as well. If I can help other folks with CLL understand what they’re going to go through and what they can do in their own behalf I will be very satisfied with the blog. And I like her description of the CLL “slithering” back into remission.

Kathy and I are looking forward to being done with these treatments and being free to do the things we enjoy most, like travel. I already have a number of things in mind that I’d like to do, mostly in terms of trips to various places, but Kathy keeps warning about trying to do too much too soon. I will still be immunocompromised for many months and weak and with a reduced stamina for quite a while as well. I do need to pace myself, but it’ll be nice to be able to plan for the days when I can break out of my treatment confinement.

Speaking of planning, we’re going back to Antarctica again next February!

That’s all for now. But, of course, there’s always more, sooner or later.


“Do a little more each day than you think you possibly can.”—Lowell Thomas