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