Miracles, mortality,and me

It's been a month since I posted anything: another case of "no news is good news."

I truly knew what I was thankful for this Thanksgiving.

A week or two ago I read a new report about a French trial of a new chemotherapy drug. The drug company found volunteers and gave them the new drug. A very large number of them died quite soon. The test was immediately halted. As the author of the report wrote, how do you find a way to thank these brave souls (or their families) for their courage, for their contribution to all the rest of us? Sobering to contemplate, is it not?

Tomorrow, December 2nd, I start round three of chemotherapy, with miracle drugs other volunteers tried and survived (most of them, anyway). With luck, this cycle will produce as few negative side effects as the first two rounds did---practically none.

I don't dare get excited, but last night---for the third night in a row---I actually slept more or less like a normal person: horizontally, not sitting up, and no CPAP machine. Wow. Three nights in a row. Let's see if it actually continues for a while.

Chemo: Round 2, Day 1

Yesterday was Day 1 of Round 2 of my chemotherapy. It was, as every first day of the cycles will be, a long day: 8:00 a.m. to 5:00 p.m. But how long it takes is not important, as long as it works. Today I go back for a short session and again tomorrow, and then 30 days off.

It was pretty uneventful. I did a lot of reading as I sat there, which isn't a bad thing. I finally finished a condensed (not very, still 390 pages) compendium of the writings of Thomas Paine (African Slavery in America, 1775; Common Sense, 1776; The American Crisis Papers, 1776; Rights of Man, 1791; The Age of Reason, 1791; and Agrarian Justice, 1797).

"History is to subscribe the American Revolution to Thomas Paine," wrote John Adams, I suspect out of jealousy more than admiration. Common Sense is what he is best known for, but in my opinion the least well written and least powerful of the lot. (The French Revolution was also fueled by his writing, esp. The Rights of Man, which he wrote in France as one of the founding committee of the that revolution.)

Anyway, back to the medical stuff:

I have noticed, now that I have had two experiences of this "day 1 routine," that it affects my lungs and bronchial tubes for a couple of days, a side effect that I have not read affecting anyone else. It's a sort of inner pain that I feel when I inhale deeply, like the linings of all the tubes have stiffened up. The first time, last month, I thought it was a result of having thrown up that first time (not an uncommon reaction) and ingesting a bit of the yucky stuff, but here it is again, without that messy cause. Not a big deal. It's tolerable and should fade away in a couple days, as it did last time

It isn't July. The Tour de France isn't on television, but Lance Armstrong still inspires me. I ride my bike at least every alternate day. As the weather has turned colder and the day length shorter, I have been riding indoors. I mounted an older bike on a device called a "cycle-ops" stand that allows me to adjust the pressure against the back wheel and simulate what it takes to ride outdoors. Then I hooked up a pulley on the ceiling straight above each shoulder, running a rope with a perpendicular dowel handle up through it and six feet back to two other pulleys, and down to a water jug and the end of each. So I can do weight lifting (well, downward, anyway) and stretching in a variety of directions while riding. It's clunky looking, but very effective and cost me about seven dollars for the four pulleys. And I can adjust the weight easily by just adding or removing water. I can feel the difference it is making in my shoulders.

Since January, when I seriously began this bike riding regimen and being much more careful about what I eat, I have gone from 193 pounds (I suspect at least five pounds of that, maybe ten, was swollen lymph nodes and tissue) down to 175. Most days that's where I weigh-in. That is about where I ought to be, anyway. I was looking at an old travel diary I wrote for a 1973 tour group I organized and noted there I weighed 170 then.

I continue to work via Internet from home, in a self-imposed quarantine against both kinds of flu. My employer seems less than thrilled about that, but has accomodated it. I'll monitor the ups and downs of the epidemics and see when it might make sense to return to my office desk.

Thanks for all the calls and cards of encouragement. They are precious.

Good news, mostly

On Monday the 19th of October I paid a visit to my oncologist, Dr. Howard Schlossberg. Before seeing him, I rolled up my sleeve to have more blood drawn, and marveled at two things: (1) the amazing "instant blood test machine," that looks like a slightly enlarged laser printer (put the blood vial in, press the button, and--pow---instant count of white blood cells, red blood cells, and even the kind of white blood cells) and (2) that the highly trained, competent nurses and technicians who draw blood, feed the machine, and even administer the chemo treatments sometimes feel compelled to take second jobs in order to pay their bills. Somehow, that does not seem right.

Enough of that.

Anyway, the results of the blood test are remarkable, although hinting of issues to come. My white blood cell count, which had gone from 6,000 (approx.) before this CLL became an issue, and had begun doubling to 16K to 32K to 69K to 77K. has now plummeted back to 4.1K.

Hey, that sounds pretty darned good. In coarse terms, it means I have less pus running through my blood. And my lymph nodes have shrunk remarkably. You can see it at a glance. And I feel so much more zip, more vitality. Maybe even starting to sleep better.

But---here is that word again---there are several kinds of white blood cells. One is called a neutrophil and the army of neutrophils in one's blood are the ones that fight infection. The new blood test shows my neutrophil level is now below "normal" ranges. That is a definite "uh-oh." It means vulnerability to everybody else's germs, and especially to pneumonia.

Taken together with the observation that a small "cold sore," more accurately called Herpes simplex, has emerged at the corner of my mouth, and maybe (not sharply clear) the increase in late afternoon pain in my back where I had a shingles (Herpes zoster--which almost all of us got as chicken pox as kids) outbreak in late 2007. I have been taking Acyclovir as a preventive measure for the two Herpes possibilities, but, hmmm, maybe inadequate.

There are no surprises in all this (except maybe the nurses taking waitress jobs). All of it was laid out as possibilities from the beginning.

No complaints; I am on the road to lasting remission. I just have to make sure I manage the process carefully.

One Week Later

It seems hard to believe that one week ago, at this moment, I was headed to Riverview Oncology and Hematology in Rexford, N.Y., to begin my first round of chemotherapy. It seems like forever-ago.

A lot has happened in that week. I finished listening to a book on tape: "The Life of Pi." Very strange, mildly thought-provoking book, and nothing to do with 3.14. I have gotten half way through "Common Sense" (surprisingly dull) and "The Rights of Man" (archaic language but overflowing with logic, meaning, and relevance) by Thomas Paine. The Red Sox got blown away by the Anaheim Angels. Obama was awarded the Nobel Peace Prize. Lots of neighbors have so-very-kindly dropped off various home-cooked meals. What great neighbors we have. How lucky we are to have landed in this spot.

For the most part, "so far, so good." On Thursday, the day after the third round of chemo, I felt remarkably good. The swelling in my face had been reduced noticeably, although two big lymph nodes under my chin are still much too big. Friday I felt a bit queasy and headachey, but Saturday, Sunday, and Monday (yesterday), I felt pretty good, enough to take two modestly long (but easy) walks in the newly found Wolf Creek Falls Preserve, about seven miles up the road.

I can't say I am sleeping significantly better. I thought at first I was improving---maybe---in that regard, but I am not thinking that now. Those big nodes in the neck have to shrink more before that can happen, I think.

The most annoying part? Drinking all this water that I am supposed to drink. I keep working at it, and maybe it will become habit. I am told it is important, but it seems like it has to be an unrelenting obsession for me to consume three quarts a day.

So, that's the news for now. Time to go do some office work. Deadlines await.

Why choose what I chose?

There is a daily "list-serv" for folks with CLL, and I have learned a lot from it. So I thought it only fair to post my own experience and observations.

A couple people wrote to me to ask (as I had asked of others), "How did you think-through it all to this decision?"

Here is what I wrote back:

"A very hard decision, indeed. And I asked lots of people whose opinions and analytical skills I had come to trust the very same question. It's a bet, not a sure thing.

For me, it had come down to FCR, FCR Lite, or just R.

Actually, the folks at Mayo Clinic (Dr. Tim Call, who I think is wonderful) I went to see for a second opinion back in May of 2008 recommended PCR. It substitutes Pentostatin for the Fludarabine. But in comparative tests, the PCR, (the Mayo prescription) didn't do quite as well as the FCR (the prescription favored by Keating, Wierda, et al at M.D. Anderson Center in Houston)

I asked Chaya Venkat (who has written extensively about FCR Lite at her amazing Web site at http://www.clltopics.org/) if she could discern any reliable, predictable circumstances under which FCR Lite was a more appropriate choice. She said, in short, "No." The facts are these: It does hammer the immune system less, but it also requires "topping up" with Rituxan periodically forever and the tests were done on a relatively small population and not very long ago, meaning it doesn't have the track record that FCR does.

I wrote to Dr. Terry Hamblin (one of the top CLL experts in the world, in England)---with some guilt, given his own cancer---and posed the same question as I did to Chaya Venkat. I asked if he had done a pros /cons appraisal of FCR versus FCR Lite. He quickly wrote back to say "no, but I am considering it."

I came across some correspondence with Dr. Keating---clearly on the all-star team of CLL experts--- who said that one's reaction to the immune-suppression of FCR is likely based, more than anything else, on the condition of one's immune system before undergoing treatment. And mine has been quite good. I am fortunate in that I have kept myself in resonably good athletic condition over the years, not a tri-athlete, but O.K.

I wrote to Wayne Wells, a fellow patient, one whose writing and analytical skills are sharp and clear. He had just made his own decision and to see his face back in April, you'd know why. He had golf ball lumps all over his neck and cheeks. Very serious. It was Wayne who pointed out to me the short track record of FCR Lite, and I immediately saw the truth in it when I dug to verify it. For him, getting his first treatments by an "ace" was important, so he opted for the long-day's drive from rural, western NY to Columbus, Ohio, and Dr. John Byrd, where they went with a sequential, rather than simultaneous infusion. Wayne's own unique symptoms seemed to call for that, and unfortunately he has had some kidney issues as a result. Latest word: he's doing O.K.

About Rituxan alone: My appraisal, after long hours of study, is that (1) the first blast is the most important and (2) every time you use it, its power diminishes. I met a guy at the CLL Conference in Niagara Falls, back in May, who had just completed his 54th round of Rituxan over the years. I think it is the only medicine he has ever taken for CLL (maybe dietary supplements). He is a diehard road-bike cyclist (the Lance Armstrong sort) and in otherwise good shape, but one could see in his neck and face that he had CLL, and he acknowledged that every time his biking performance was declining, he knew it was time for more Rituxan. He was fervently hoping for Humax to be approved as a replacement for the Rituxan. Long story, but I could not hold him up as a "poster boy" for continued reliance on Riutuxan-alone over the long term, especially compared to other available options.

In short, I guess I evaluated them all much as I might comparative investments in this crazy economy. Downplay the short term performance, look at the real fundamentals, look at my OWN circumstances, and try to predict the long term outlook for the dollar. Add 'em up, recognize that there is no perfect decison---only good ones (and probably more than one good one)---and place your bet.

My decision was complicated by the cloud of H1N1 Flu hanging over us all at this moment. Unfortunately, my symptoms gathered steam now. I could not procrastinate any longer, hoping green tea extract would keep it all at bay until the flu season subsided. It had to be now. So I basically announced to my employer that I would have to work from home via computer for the next few months, in a sort of self-imposed quarantine. He thought I was over-reacting, I think, but said O.K. Yesterday, 25% of the staff was out sick. I think I got that call right.

Since posting my brief decision for all to see, I was contacted by a very kind lady who said she made the same decision I did. She said she has been in complete remission for eight years. One experience such as hers does not make a trend, but it sure was nice to read. Eight years would get me to 71---a far better outlook than where I was last week.


Alan

Round 1 Ends

Each round or “cycle” of chemo is a three-day affair. Day 1 wasn’t horrible, although it didn’t start all that well.

Except for sore bronchial tubes and lungs overnight from Day1, almost certainly from throwing up during that first infusion of Rituxan, Day 2 was uneventful. I felt nothing unusual during the Day 2 infusion of steroids, Fludarabine, and Cytoxin. In fact, on the way home, I was feeling so good I decided to go for a bike ride when I got home. It was a 6o-degree and sunny day and I didn’t want to waste it. There might not be many left this fall.

I rode six miles and felt good. The combination of cool air and exercise seemed to flush out my windpipes and they’ve been feeling good all day.

Today I started taking Acyclovir, an anti-viral intended to keep the shingles (Herpes Zoster, the lingering virus in anyone who has had chicken pox) at bay. I also started taking Bactrim tablets as a precaution against pneumonia, the ultimate threat for anyone with CLL and who further intentionally impairs his immune system with chemotherapy.

Then it was off to Day 3 of chemo infusions. Again, no problems. And there was one very amazing bit of news. A blood test prior to the infusion showed that the first two days of chemotherapy had cut my worrisome white blood cell count from 77,000 to 6,000---practically normal! And there is no doubt: A look in the mirror shows that the lymph nodes are shrinking. You can actually see it.

Now, that is good news, exciting news, even. But it must be tempered with the knowledge that there are more potential hurdles to pass. Among them: sharply plummeting neutrophil count. Neutrophils are a kind of white blood cell that does the immune system work. If the count gets too low---as it well could---then counter measures are taken. Then there is the possibility of what is called “tumor lysis,” which means the kidneys aren’t handling the heavy traffic of dead white blood cell counts. So---the road ahead is still a bumpy one. But then, I have always found dirt roads irrestistible.

Twenty-eight days until Round 2.

Chemo, Day 1

Well, "day 1" is now in the books. Off we went with bags full of "toys:" books, books on tape, Ipod, plus a blanket, since they warned that I might get chills.

Two days ago I started taking a daily allopurinol tablet. It is supposed be like a turbocharger for your kidneys and help them handle all the white blood cells that have been bulking-up my lymph nodes that are expected to come---now quite dead---pouring through the kidneys in the next couple days and weeks ahead.

First came two Tylenol tablets as a guard against fever spikes. Then they stuck the IV needle into my lower arm, and opened the faucet. First came Benedryl to guard against allergic reactions. Then they started some other preliminary stuff (I forget just what at the moment, but I know it was intended to"smooth the way" for what was to follow---Rituxan,) Rituxan is a "monoclonal antibody" made in part from mouse cells (no, I don't want to know the detail of how, either). But you can imagine that human bodies tend to reject that stuff.

Less than ten minutes into it, I did. I barfed up breakfast and V8 juice---more than you wanted to know---and then settled down to twenty minutes of chills, declining oxygen levels, and rising temperature. All pretty typical, they tell me; just quicker in my case.

The rest of the day was surprisingly uneventful, as they opened the spigots on Fludarabine and Cyclophosphamide, the ones that are really considered more damagaing to one's immune system and render one's head quite bald. I wasn't done until 4:30, after starting at 8:30. Long day.

The nurses said I might experience fever in the night, but I didn't.

The only weird "hangover" is that my lungs hurt a bit when I inhale. At about 2:00 a.m. I strapped on my "Top Gun" fighter pilot's air mask for my CPAP machine (which I do many nights to try to sleep), and by 4:00 a.m. my lungs felt not right. Some combination of that air pressure, the treatments, and/or maybe the throwing-up affected my lungs. I could see where V8 going down the wrong pipe could do that to you.

Today should be a lot easier: in by 2:00 and out by 4:00, and no Rituxan. Same thing tomorrow, then 28 days "off."

So, there you have it. So far, so good. Not fun, but odds are that the end result will put me in a better situation than I have been just lately. I hope these lungs clear up quickly.

You know what the toughest part has been? Water. "Drink more water, drink more water," Nancy keeps saying, quoting all the advisory sheets. I know she is right, but how do people do that and get anything else done? Three quarts a day? Geesh, there is no room left for food. I keep trying!

Thanks for all the kind words of support and encouragement. I hear them and appreciate them.

I Decided to Decide

I still feel weird writing these. It seems so ego-driven or self-centered to think that others would want to know about my situation, but I guess "it's the thing to do." At least lots of people in my boat do it to keep friends and family posted on progress. For those who do want to read it, I thank you.

I had another monthly blood test a few days ago and it showed my white blood cell count had risen again, this time from 69,000 to 77,000. That compares to 32,000 in May, 68,000 in June, and 69,000 in July. "Normal" would be less than 10.

Even if the blood test had shown an increase of only another 1,000, as it had last time, I knew it was time to take action. The sleep-upright idea had run its course. It wasn't working any more. The lymph nodes are continuing to swell. The green tea extract has undoubtedly slowed the growth of white blood cells somewhat, but not enough. I can see it in the mirror. I hardly recognize myself when I look in the mirror. Some days I can even feel my eye lids and eye sockets closing in around my eyes.

I remembered some advice given by an ROTC instructor at URI in 1966. I was taking as wide range of courses as possible, avoiding the notion of a "major" completely. I was trying to keep as many doors open as possible. Major John Leach said to me: "You have to decide to decide." He was right; I knew it. And I know it now.

So I decided to decide. I have decided to start chemotherapy. Swine flu on the horizon or not.

Probably it will start about October first.

I have three basic choices: Rituxan (a monoclonal antibody) alone; "FCR"--which is a cocktail comprised of Fludarabine, Cyclophosphamide, and Rituxan; and "FCR Lite", which is the same as FCR, but given at a different strength and over a longer period of time to reduce the strain on the kidneys caused by all the medicine-killed white blood cells running through it.

FCR is the strongest and most stressful on the body, but statistically is shown to produce the longest and deepest remission most often. Also, the first treatment administered in one's lifetime is the most important one.

So, I have decided to hit it hardest and try to do it most thoroughly: FCR.

The schedule is three consecutive days of treatment every month for six months . . . if you can stand it.

So, that's the news from Lake Wobegon (d.b.a. Duane Lake).

Update after more than a year

It's been more than a year since I posted anything here. Maybe I've been too lazy to do it. Maybe I've felt as though I have nothing much to say or to add, Mostly, it just seems a bit vain to think anybody actually would want to read this stuff.

But, anyway, there have been some developments.

In late April 2009 Nancy and I went to a conference at Niagara Falls, Ontario. It was a gathering of CLL patients and doctors and researchers who specialize in CLL. The agenda looked too good to miss.

As one might guess, the interaction with other patients---an amazingly well informed group of people in this case---was at least as educational as the lectures presented by the doctors and researchers.

Certainly the biggest piece of information I brought home was from a chance conversation I had with a fellow patient who had flown up from Santa Fe, New Mexico. He said that a researcher from Mayo Clinic had told him to try taking a concentrated extract of green tea. The researcher was involved with a team that was doing clinical trials of green tea.

Supposedly the green tea extract had shown promise by reducing the swelling of lymph nodes and lowering the white blood cell count.

So, starting May first I began taking a half gram of green tea extract in the morning and another half gram in the evening.

My monthly blood test in June didn't show any positive effect. My white blood cell count was continuing to double just about every thirty days . . . not good.

Around the first of July I obtained a pre-publication copy of the research journal article about this. I learned there that the people who took the highest daily doses---two grams in the morning and two at night---showed the most positive effects. In short, I needed to quadruple my dose. So I did.

My blood test in the middle of August surprised my oncologist. It showed almost zero increase in my white blood cell count over my July test. You have to think it was the increased dosage of green tea extract that was the cause.

But---how come there always has to be a "but"?---as late August rolled into September, some other observations weren't looking so promising.

My "make do" sleeping technique of sleeping in an upright position (so as not to gag from horizontal throat tissues collapsing and blocking my throat) was beginning to seem inadequate. I found I was gagging at night even in a perfectly upright position. That is definitely not good! Plus I could see new lymph nodes beginng to bulge here and there on my neck. My face often itches all-over at about 3:00 a.m.

Plus, I know I am a lot more tired than I was in April. Lack of sleep will do that, as will the weird stuff going on in my blood.

So, here I am, thinking maybe it is time---after all---to begin some sort of chemotherapy.

But.

Another but.

Here comes swine flu. People whose judgment I really trust are showing good evidence that swine flu will be rampant in October and November, decline some, and then come back again a bit in the spring.

One of the realities of CLL is an impaired immune system that makes me extra vulnerable to pneumonia. Chemotherapy seriously adds to the immune system damage. So maybe chemotherapy is not such a good idea right now.

What am I going to do?

I don't know.

I do know I am going to be working from home for the rest of September and all of October, as a sort of self-imposed quarantine. I want to reduce the number of chances that I will come in contact with somebody else's swine flu.

I keep thinking maybe I can string together four or five good nights of sleep and feel a bit rejuvenated. But the more days and weeks that go by without that happening, the more I think maybe I'll have to do the chemo thing, swine flu or not.

We shall see.