Life on the treadmill

I've lost 10 pounds so far and sometimes I feel like the guys in the video below.

I've also trained myself to eat less -- "they" say it takes about a month to do -- and life is easier because I'm spending less time digesting. As they say in Okinawa, "hara hachi bu," or "eat until you are eight parts full (out of ten)." One thing I have noticed is that my energy level is more constant, more even, with fewer peaks and valleys. This is also in part because I am eating healthfully and have pretty much stayed away from sugar except in the form of an occasional orange. My blood glucose level, which was a little high while I was on big doses of steroids, is now well within normal. (I am currently down to one methylprednisolone pill -- 4 mg a day -- to guard against AIHA.)

There is a life-affirming element to all this, a decision to get my physical temple in order, and by extension my spiritual one. I think most of us are probably affected by CLL in a lot of subtle ways we don't consciously recognize. For me, a sense of abandon when it came to eating was one way of coping. When I was a kid and had a rough day in school, I would buy three or four candy bars on the way home and settle in for a little stress reduction, much like adults enjoy a martini after work.

With CLL this sort of thing returned at times. Marilyn and I are both pretty good cooks; we did, in fact, write a cookbook, or most of one. It was pulled by the publisher at the last minute because of a dispute with the California Milk Advisory Board over photo rights but it is apparently still "available" in Canada. We also know a fair amount about wine and are capable of whipping up a pretty decent meal to go with a bottle, with an utter obliviousness to the amount of butter and fat involved.

Good eating has its place, of course, but too much of a good thing is not so good. It is often the case that any method of escape -- be it food, alcohol, drugs, smoking, what-have-you -- only works so much before it becomes self-defeating. For me, the world of food, compounded by lack of exercise, became both a release and a trap.

So now Marilyn and I are exploring opera. It's not fattening and it's not ultimately depressing, even though the heroine always seems to die in the final act.

Metabolic madness

I used to have a pretty fast metabolism. Despite a propensity for sloth, accompanied by an appreciation for dining, fine and otherwise, I never managed to get too overweight.

Until I stepped on the scale April 9 and felt the planet tilt in the direction I was leaning.

218!

I had not weighed myself since January 31 and had, much to my horror, gained one pound a week. I now weighed more than I ever had in my life. At 6 feet tall, my Body Mass Index was 29.6 -- just .4 away from what the charts define as “obesity.”

Those charts put the high end of acceptable, "normal" weight for someone of my size at 184. Since my diagnosis with CLL in 2003, my weight has generally been in the high 190s or low 200s. Not perfect, but not way out of line, either. I was merely “overweight,” not even close to “obese.” My grandmother, familiar with the famines of old Russia, would have approvingly called me "zaftig."

Now, at the rate of a pound a week, I was heading down the slippery slope. I was threatening to get Jerry Springer Show big, Discovery channel documentary beached-on-the-bed big.

And the funny thing was, I hadn’t been eating more than usual. February was not Cheese Appreciation Month. March Madness did not come in the form of ice cream with a red licorice chaser.

But my clothes had been getting tighter. A long time ago I had reluctantly gotten myself used to size 38 pants, and now the prospect of 40 was looming. Size 40, which brought to mind images of the Stay-Puft Marshmallow Man, was a psychological barrier that I refused to cross.

The good news, as I stood on the scale, which is located next to a treadmill, is that I felt good enough to do something about it. This ability to exercise, which I had once taken for granted, had been closed to me for most of the preceding 13 months. Autoimmune hemolytic anemia, or AIHA, had robbed me of my red cells. There was a time last fall when merely walking up the stairs was an accomplishment.

But thanks to my R-CVP chemotherapy, which commenced October 22 and ended December 3, I was in a good remission that has, like a fine wine, only gotten better with age. Indeed, on this month's CBC, my red blood count, hemoglobin, and hematocrit were all in the “normal” reference range for the first time since January 2007. My ALC was stable at 12,000. My lymph nodes are not coming back, as near as I can tell.

So the numbers tell me I’m feeling more energetic, and my body has been telling me also, despite the additional pounds. It was time to start exercising every day, and also to eat more wisely. I began that very night, April 9, and my weight is now 212.

Some of you may recall that, when I first went on high-dose steroids and Rituxan to combat the AIHA in March of last year, I lost 20 pounds in nine days. I was at 184 before I knew it. As the steroids were tapered, the weight loss stopped.

I assumed that a lot of what I had lost was CLL from bulky lymph nodes, as well as body fat. But much of it was no doubt muscle, which is often one of the first things to go when people are put on high doses of steroids. And I was on high-dose steroids more than once last year. This year, as I was feeling better and able to do more, I began to notice that my thigh and calf muscles were considerably weaker than they had been before all this began. If I squatted down in front of the refrigerator to get a carrot out of the vegetable crisper, I needed to pull myself back up by holding onto the kitchen counter.

And then I ran across a fact that might explain why I was gaining weight while not eating any more than usual. For every pound of muscle you have, you burn 50 calories a day. If I had lost, say, 10 pounds of muscle in 2007, I was burning 500 calories less each day. And, you guessed it: Taking in an extra 500 calories a day will cause you to gain one pound a week.

Now that I know the game, I can play it. My goal is nothing short of weighing 184 or less, and of gaining back the muscle I lost and more. I am enjoying the exercise, which actually helps me feel more energetic. I am also enjoying eating less, and more healthfully. It may take a long time to reach my goal, but this is a lifestyle change, not a diet.

This is also a life-affirming act, for it is the start of preparations for the stem cell transplant that I expect to face in the not-too-distant future. Being in shape will help me avoid comorbidities -- such as heart problems, diabetes, and obesity itself -- that have been shown to reduce one's chances of transplant success. It will also help me weather the experience more easily. For example, if I am given a drug such as cyclosporine, which raises blood pressure, it makes sense for my blood pressure not to be high to begin with. Thanks to the new regimen, my blood pressure is already dropping.

So when I’m on the treadmill, I’m running for my life, literally. Or at least walking fast.

A spider-hunting we will go

The Irish have given us Yeats, Guinness, The Pogues, and some excellent cheese. Now it is time to add the Spider Catcher to that hallowed list.

I am a fan of gadgets, not for the sake of gadgetry -- though cleverness is always to be admired -- but for their utility. There are successful gadgets, such as the self-opening trash can I bought at Costco last year. It is still going strong and brings a frisson of pleasure whenever it opens its rather odiferous trap.

A less successful gadget is the hand-held, battery-operated "One-Touch Can Opener" -- as seen on TV! -- that I purchased at Bed, Bath and Beyond. You place it on the top of the can, making sure it has gripped the rim, then you press a button and it slowly whirs around until it has sliced the lid clean off. This works wonders -- and for some time kept me from despoiling the kitchen with tuna juice -- until the batteries run low. Then it stops in the middle of what it is doing, clings to the lid for dear life, and has to be removed by means of a screwdriver and pressing a less-than-efficient reset button. Cursing doesn’t actually help, though it passes the time faster. Somewhere during this process you realize that the time the can opener has saved you is nothing compared to the time it takes to deal with the battery problem.

One of the simplest yet most useful things Marilyn and I have ever run across is the Spider Catcher, billed as “the world’s friendliest way to catch and release insects.” Here in Arizona we get all kinds of interesting bugs in the house. You’ve got your brown spindly-legged spiders, which are about two or three inches in diameter. There’s the oblong "house centipede" that seems to breed in our stairwell. There’s Sparkle and Midnight, which are the names we have given to the two colors of Oriental cockroach -- known in polite company as "water bug" -- that make their appearance downstairs in the spring (and, of course, the roach that looks like a mix of the two, which we call The Unholy Love Child of Sparkle and Midnight). Finally, of course, there’s the occasional visit from that most disconcerting of desert dwellers, the scorpion.

The Spider Catcher, which hails from County Cork, is up to the task of managing them all. It’s easy and efficient, as well as humane, for you can walk the offending beastie out to the edge of the street and release it into the wild. Our old method, the empty yogurt container and piece of cardboard system (photo below), sometimes resulted in loss of limb if the bug ran a little too quickly in the wrong direction. Scorpions, which used to be subject to a relentless pounding by the nearest shoe, are now free to return to nature and infest the neighbor’s house as they see fit.

The Spider Catcher comes with a black plastic spider to practice on, which has been left here and there around the house. Marilyn sometimes stumbles upon it and forgets that it’s not real, which is always good for few moments of amusement.

Inventor Tony Allen presented a Spider Catcher to Prince Charles, who, I imagine, does not personally remove offending insects from his castles. In which case he is missing out on all the fun.

Barack Hussein Dukakis

I have always felt that the Democratic Party represents the better angels of our nature, and therefore I have always voted Democratic, at least on the state and national level. (I did vote for a Republican for mayor of Sedona once but it was a nonpartisan race and I didn’t hold it against him.)

The hardest vote I ever had to cast was in 1988, when Michael Dukakis was running against the first George Bush. By election day, Dukakis had proven himself to be an inept candidate, aloof and out of touch. Some of you may recall his advice to farmers in Iowa to grow more Belgian endive. What sealed the deal with the public was his answer to CNN reporter Bernard Shaw’s question in the last debate, in which Shaw asked, "Governor, if Kitty Dukakis were raped and murdered, would you favor an irrevocable death penalty for the killer?" Dukakis’s emotionless, analytical reply -- a rehash of his views on capital punishment -- missed a golden opportunity to connect with the public on an emotional level. Instead, he appeared to confirm insinuations by the GOP that he was an “ice man,” too out of touch with the average American to be trusted to lead the country.

Barack Obama has a lot more going for him than Michael Dukakis, both as a candidate of intellectual breadth and depth and as a warm, witty, and emotional human being. One of his gifts, up to now, has been his ability to connect to voters. And then he went to Marin County, California, and gave a speech. Marin County, for those who don’t know, is just north of San Francisco, and is, if possible to imagine, filled with even more wealthy liberals than San Francisco. It does not surprise me that Obama was attending a fundraiser there.

I had a friend in college named John who hailed from Marin. His parents had a lovely home and were gracious people, even if one had to remove one's shoes at the door so as not to despoil the pristine white carpet. His father was a doctor, his mother a psychiatrist, and they played string quartets on the weekends -- no, not on the stereo, but in their living room, with instruments and two friends. John’s high school chums lived in a house I will never forget, perched on a hilltop in Sausalito with a commanding view of San Francisco, worth well more than a million dollars even in 1976. These people were well-tanned and drank an enormous amount of white wine on their stunning terrace. I recall going to Grace Slick’s house to meet more of John’s friends, walking down the stairs past gold records hanging on the wall.

Marin, to my eyes, was a wealthy, wondrous, and insulated world. But the experience of growing up there had led John to rebel; he became interested in his religious roots and studied to become a rabbi. Beyond that, he fell in love with New Mexico and wore cowboy hats and boots and blasted Country-Western music on the radio to the consternation of his parents. His hero was Kinky Friedman. Eventually John settled in Albuquerque. He was still a liberal and dedicated Democrat. But culturally, Lone Star beer in hand, he was somewhat the opposite of where he was raised.

And FYI, for those on distant shores -- and this includes New York and Los Angeles -- a lot more Americans can relate to John than to his parents.

Apparently Barack Obama may not be one of them. I was more than a little distressed when my party’s likely nominee went to Marin County recently and rolled this oratorical gutter ball:

"You go into some of these small towns in Pennsylvania and, like a lot of small towns in the Midwest, the jobs have been gone now for 25 years and nothing's replaced them. And it's not surprising then they get bitter, they cling to guns, or religion, or antipathy to people who aren't like them, or anti-immigrant sentiment, or anti-trade sentiment as a way to explain their frustrations."

Ouch. Dukakis-in-the-tank ouch. Dukakis failed the gut test. Obama is starting to require a little too much Pepto-Bismol for comfort.

It's not that Obama said people are bitter. We all understand that unemployment can send people into anger and despair. Nor does anyone argue that there will always be people who will take their frustrations out on others, however unfairly. The history of this country is filled, after all, with far too many examples of xenophobia and racism.

The problem is that Obama went one step further, ascribing people's passion for things that some Marin-ites might dismiss as "downmarket" -- such as guns and religion -- to a negative motive: bitterness about economic decline. The implication was, whether he meant it or not, that if their economic situation improves, residents of these towns would become less interested in guns and God and more tolerant of illegal immigrants. Perhaps this sort of armchair sociology appeals to a closed-door audience in Marin, but it is wrong on so many levels and betrays a lack of understanding of what makes this country tick.

One reason John and I could relate is that, for the most part, I grew up in small-town Arizona. Around actual cowboys. And Indians. And people who have guns. People who go to church. Like John, my experiences led me in somewhat the opposite direction from where I was raised. That's how I ended up in Santa Cruz, California, where John and I went to college.

But I've been to the rodeo as well as the opera. And I can tell you that most people do not have guns because they are bitter. They have guns because they like to hunt, or because they like to shoot bottles off fences like I did when I was a kid -- every boy I knew had a BB gun -- or because they view guns as a means of personal protection. They go to church, not mainly because they are upset about things -- though religion certainly is a means by which some people cope with the question of why bad things happen to good people, such as those who come down with leukemia. They go because it gives them comfort and structure and community and an answer to cosmic questions we all wonder about. They are not anti-immigrant because they are frustrated -- they are frustrated with illegal immigration, largely out of principle, because they believe other people should obey the laws just like they have to. This is called “fairness.” And when it comes to trade policies, many Americans think a goal of these policies should be to safeguard American jobs, rather than see them shipped overseas to the benefit of multinational corporations looking for cheap labor. Is this clinging to a sentiment out of frustration, or is it -- oh, I don't know -- common freaking sense? (For an excellent analysis of the full range of problems with Obama’s comments, read this at Politico.)

Obama’s remarks made me cringe because they remind me of the misunderstanding some people in my party have of what it means to live in Flyover Country -- that is, the space between the two coasts. What Obama doesn’t get, apparently, and what he needs to get if he expects to be president, is that rural and/or red state voters are a lot more complex than he gives them credit for.

We are all products of our experiences, and one reason I give Obama a pass on the Rev. Jeremiah Wright issue is that I do not know in my heart what it means to be black in America. But I can see, given our history and the struggles for Civil Rights that I witnessed as a kid, where the bitterness of some African-Americans comes from.

Conversely, understanding towns like those I grew up in, or those in which people in rural Pennsylvania live, is a bit out of Obama’s experience. The problem is that he is running for president and cannot win the election without the votes of at least some of those denizens of Possum Hollow.

All this may drive me to drink, as it has Hillary Clinton, who is now a good ol' girl who downs shots of whiskey and tells stories of her duck hunting days of yore. This is Clintonian political theater at its most entertaining, and Obama’s remarks may yet save her candidacy.

And the irony in all this is that if Obama is the nominee, Republicans -- the party of tax breaks for the wealthy, corporate welfare, and fringe social policies -- will again have the opportunity to portray the Democrats as the ones who are out of touch.

That's not reality, really. Which is why I vote Democratic. And perhaps this year, given the state of the economy and the endless war in Iraq, people will overlook some inappropriate comments. Even so, I'll be clinging to prayer if Obama becomes the nominee.

Dr. O’Leary’s bull, or when “normal” isn’t normal

I keep my CLL history -- things like CBC results, FISH tests with xeroxed blotches that are supposed to signify something, lengthy dissertations by experts and not-so-experts upon my condition -- in file folders, organized by year.

The year of diagnosis, 2003, doesn’t have much in it. By now, in 2008, the files are 2" thick when stacked on top of one another. The year 2007, in which autoimmune hemolytic anemia greeted me like the Huns greeted Rome, accounts for fully half that thickness.

And speaking of thick, let’s open that file for a minute, shall we? I recently got the complete physician’s notes from Dr. O’Leary, the man who managed, and then mismanaged, my AIHA. O’Leary was nothing if not thorough in these reports, each titled “Follow-Up Office Visit” and most of them making reference to my node-filled “bull neck.” Well, moo. Or snort. Or something.

I remember a couple of times during these visits talking to O’Leary about my haptoglobin, a protein that people hip to the terminology abbreviate as “hp.” When your hp tanks, as measured by a blood test, you’re in trouble. When red blood cells are actively being destroyed, hp disappears faster than it is created.

I had noticed, at one point during my travels, or travails, that my hp was declining, even though it was within the “normal range” (or “reference interval”) of 34 to 200. I had the sense that this could be a problem, and I asked O’Leary about it. He replied that there was no need to worry, it was within the normal range.

Later that day, after I left, he made his dictation, which contained this comment:

“We discussed at length his other laboratory tests. His haptoglobin remains normal, although it is drifting down a bit. It was around 170, then it was 67 and now it is down to 49, although it is normal.”

Well, you guessed it: It continued to drift down. Four weeks later all hell broke loose and the AIHA was pounding at the city gates again.

There are a number of lessons to be learned here. One: Patient, trust your intuition. Two: Just because a result is “normal,” that does not mean an important trend can’t be identified and appropriate action taken. Three: I really wonder whether O’Leary should be practicing medicine. In the United States. On people. (Drifting down “a bit”!)

But let’s focus on number two: Reference intervals, normal values, and the like are not licenses to not worry.

Some of this depends on what is being tested: ZAP-70, for example, is positive once it passes a certain point, usually 20%. It doesn’t matter whether you are 22% positive or 82% positive, you are positive. As far as I can tell, and I once asked Dr. Terry Hamblin about this on the ACOR CLL List, the level of positivity does not count as much as the fact that you are positive.

Red blood counts are another matter. Many of us see our hemoglobin drifting down as the disease progresses, a result of marrow impaction. Your HGB might be 15.6 one year, 14.3 a year later, 13.1 a year after that. These numbers are all within the “normal range” but they signify a trend that tells us something important.

The same is true with haptoglobin. That is the point of this post. In your test results, look for trends. Do not be lulled into thinking that just because the result is still “normal” that you don’t have anything to worry about. (I know it is especially hard to argue with doctors about this sort of thing. O’Leary may have thought I had a bull neck, but I think he was bull-headed; he tended to dismiss my concerns, which almost ended in disaster, and which did end with me switching doctors.)

I have alerted Dr. Belle to all this, and we are watching my hp for any signs of a downward trend. We are also keeping track of my LDH, which would increase with hemolysis, and my bilirubin, which would do so as well.

And so far, so good. I continue to show improvement in the red counts, which are either "normal” now, or tantalizingly close. The icing on the cake is that my lymphocyte count has slowly drifted downward since my last cycle of chemo four months ago.

My only discomfort is in knowing that somewhere out there Dr. O’Leary is telling a cancer patient not to worry, that their test results -- despite evincing a trend that, if it had a mouth, would bite them -- are “normal.”

Al Gore on the second ballot

Well, a boy can dream. I’ve always liked Al. Behind that stiff exterior lies a man with a good sense of humor and a good head on his shoulders. I’m not going to rehash the travesty that was the election of 2000; suffice it to say that the past eight years would have been infinitely better for our country had Gore been in charge.

Now there is an ever-so-slim hope that he might yet mount a white horse, Nobel Prize medallion around his neck, sun block on his face to filter out the effects of ozone depletion, and ride to the rescue of the Democratic Party.

It looks like we may need it.

Not that we don’t have two good candidates -- it’s just that the longer they stay in the arena, flailing away like punch-drunk prizefighters, the more battered and bloodied and uglier they become.

On the one hand we have Barack Obama, whose ability to inspire is equaled only by what we don’t know about him. The Rev. Jeremiah Wright affair should have been a wake-up call, at 3 a.m. or otherwise. Not the obnoxious things Wright said. Not the fine speech Obama gave on race relations. But the fact that Obama knew it was coming, had known it for a year, and did nothing to nip it in the bud.

"If Barack gets past the primary," Rev. Wright told the New York Times in April 2007, "he might have to publicly distance himself from me. I said it to Barack personally, and he said yeah, that might have to happen."

So my question is, what else does Barack know is coming? What other distancing does he have backup plans for? (I am just a tad uneasy about this Tony Rezko trial, for example.) Obama is an interesting figure. He’s bright, he’s personable, he's full of potential. But I fear he could also be full of surprises. After all, he’s a politician (which will come as a shock to those of you who think he’s the Second Coming of Kennedy). Politicians spin things for the best, and they hide things they think might hurt them.

Speaking as a Democrat, it matters when these things rear their heads and hurt us as a party. (Is there a New York governor in the house?!)

Which brings us to Hillary Clinton, who has been well-vetted, and who we know, warts and all. Obama, who began this year on a pedestal, has nowhere to go but down. Clinton, who has endured often unfair sniping for almost two decades, has nowhere to go but up.

But that doesn’t mean she’s going anywhere, her campaign having blown it in the dozen or so states immediately following Super Tuesday, creating a pledged delegate shortfall that she can’t overcome without a miracle. (As Bill recently said, “It's the caucuses that have been killing us.”)

That won’t keep her from trying, of course. She plans on winning the nomination -- if not this time, then perhaps in 2012. It has been suggested, and not without some plausibility, that Clinton would rather see Obama lose the general election to John McCain than win it. This would, after all, make her the frontrunner for the party’s nomination four years hence, when Americans would be really, really, REALLY tired of Republican rule.

Is she that ambitious? I’d like to think not, but I don’t know. What I do know is that they’ll probably have to carry her out of the Denver convention in a straight jacket to get her to give up the fight. She has been waiting all her life for this, folks, and will not go gently into that good night.

Clinton’s recent approach to winning has been called the “Tonya Harding strategy” -- bash him on the kneecap and hope for the best. And the things that might still make her the nominee -- Obama’s inexperience or skeletons in his closet or a gaffe of some kind -- are the same things that the Republicans are counting on to help them win in November. So her strategy dovetails into their strategy, which is to create the perception that Obama is not ready to be president. This is not helped, of course, by anything that Obama might do to confirm that he is unprepared or too risky to take a chance on.

So we have a situation where two candidates, who are increasingly polarizing supporters on the other side -- witness the Carville/Richardson “Judas” dust-up -- will arrive in Denver without enough pledged delegates to win the nomination.

The superdelegates will have to come up with something, and I am not alone in wondering if Gore might be the answer. Back in the old days, conventions would sometimes select a dark horse on the second, third, fourth, or even later ballots.

Al Gore is hardly a dark horse. He is well known, experienced, a proven popular vote-getter, and more respected today than he was eight years ago. Al could mount that white horse, ride in to unite the party, and gain his rightful place in the Oval Office.

It probably won’t happen, of course, because politics is not like the movies. It is not like fiction. It is stranger.

Life's little annoyances 1

I have decided to embrace my inner curmudgeon and, from time to time, provide a list of some things that are annoying me. If you disagree with my choices, then you are annoying me also. Here, in reverse order of blood boilage, are today's nominees:

5. High fructose corn syrup. Does it have to be put into everything? (Well, apparently, yes.) Is it possible that there are people who might not want the empty calories, or who, if they are willing to risk the calories, might want the taste of real sugar? Here in Arizona you can get Coca-Cola made in Mexico with cane sugar; it tastes like Coke did when I was a kid, before the company switched to corn syrup in the US. . . Try finding a barbeque sauce, or a salad dressing, or even a can of soup or loaf of bread at your average supermarket that does not have corn syrup in it. It will be a miracle, and you should build a shrine.

4. Muzak. The other day I was at the dentist’s office and heard, in treacly, instrumental form, “Give me the beat boys/And free my soul/I wanna get lost in your rock and roll/And drift away.” Could there be a more grotesque irony? Satan himself could not have conjured up anything "better" to play in the waiting room in Hell. This beat didn't get me lost in anything, except laughter and a certain degree of existential despair.

3. Hotels where the windows are sealed shut. God forbid anyone would want some fresh air, especially if the place has been renovated and the carpeting, paint, and luxurious particle board furnishings are outgassing their share of “sick building syndrome” fumes. What does the management think we’re going to do? Jump out the window when we get the bill?

2. Store loyalty cards. So now I have to carry a card for every supermarket I frequent if I want to get the sale price on merchandise at checkout. Ooh, I’m a member of the “Safeway Club.” How nice of Safeway to want to keep track of everything I have purchased, feed it into their computer, and target me with mailings. Why, it even tells the checker my name so they can add that "personal" touch and mispronounce it as they thank me for my purchase. (Sheesh, people, "Arenson" is not rocket science. It's "Air-in-sun," not "Arn-eson" or "Air-EN-son" or that pronunciation of people who just don't try, "Anderson.") Privacy? People have forgotten that one of the treasures of being an American is your ability to be anonymous. Think I'm paranoid? Read this and this and this.

1. Ads for TV programs inserted into other TV programs. Marge Simpson recently asked: “Can’t anyone just watch the show they’re watching?” Well, can’t we? It started with those jarring little logos that networks show on the bottom right of the screen. Now it has gotten way out of hand -- little people walking onto the screen amid flashing graphics to advertise their upcoming shows. Fans of Kids in the Hall will understand when I say "I want to crush their heads." Maybe in this age of multitasking and multimedia people are used to absorbing endless quantities of visual clutter. I want to throw a brick at the television.

Here we go again . . .

Flame me all you want but I am here to make the point again: We Americans must do SOMETHING to guarantee access to health care for all, including those with preexisting conditions.

Dr. Terry Hamblin recently posted to his blog about problems with the UK's public health service, the NHS. (Follow this link and search for "Travails of the NHS.") He describes the messes that can be created when bureaucrats, including committees of doctors, attempt to decide on treatment without expert knowledge. If it were not so sad it would be funny: Terry quotes one doctor who read about CLL briefly and said: "I have been reading about this subject for two hours. I am now an expert in the condition."

What is the take-home lesson here? I think it is pretty clear: The best standard of care requires that doctors with (genuine) expertise in a given condition be allowed to make the decisions.

But a couple of those who posted comments about Terry's piece drew another lesson, seen through the filter of their myopic glasses: "Cautionary tales such as this make me oppose national health systems being imposed in the US, " wrote one. "I'm not sure why there is such a hue and cry over the 'failure' of the American health care system when it is in many cases the envy of the world. . . . Changing to a bureaucratic-run system will be made at the peril of the patient."

Hmm. Somehow American veterans have managed to survive the bureaucracy at VA hospitals, and somehow elderly Americans have managed to cope with Medicare without keeling over in large numbers.

But those are asides. The essential point is this: The failures of bureaucracy do not mean that the US should not have a health care system that provides access to all. Access to health care is a moral issue independent of the manner in which it is instituted.

And bureaucracy is not the province of government-run care alone: We have all heard of -- and indeed, many of us have experienced -- cases in which bureaucrats working for health insurance companies in the US make ridiculous calls. They deny treatment, refuse to approve the right treatment, or reject an appropriate test. (Ask the family of Nataline Sarkisyan, or ask Hilary Skvov and then read this.) Indeed, the bozos making these decisions in the US often have no medical training at all; their job is counting beans. They could read about a given condition for two hours and still not know their asses from a hole in the ground, nor would they care. (A committee of doctors -- we should be so lucky!) In America, the fox guards the henhouse. The quality of our care may be excellent but getting access to it is another matter entirely -- even if you have insurance.

Ignorance is ignorance, be it in the public or private sectors. When it comes to patient care, doctors should be calling the shots. Coming up with a fair, workable system may be tricky but it is not impossible. We sent men to the moon, ferchrissakes. Americans want as much freedom of choice as possible, and as light a regulatory touch as possible, but they also want to be able to get the care they need. I have enough faith in my country to believe that we can finesse these matters and devise a system that works reasonably well for all.

None of this takes away from the fact that access to health care is a moral right in a civilized society. I will never forget the post I saw from a CLL patient who lost his job because of his condition and, having also lost his health care, was trying to combat his CLL with herbs. I am almost as sick and tired of those who use "bureaucracy" as an excuse to deny their fellow citizens coverage as I am of CLL.

Transplants and the treatment balancing act

If we’re smart, we CLLers look down the road and think ahead. A question we should be prepared to answer is this: Might I need a stem cell transplant at some point, or is there a reasonable possibility that I can ride this thing out without one?

Chances are, if you are younger than 60 and have unmutated chronic lymphocytic leukemia, you might well need a transplant if you want to become the eccentric old codger you were meant to be. I, for one, look forward to spending my 80s with Marilyn and too many cats while yelling at kids to get off my lawn. I have no intention of letting CLL interfere with those golden years.

Further signs that you might need a transplant -- and, by the way, transplants are now being done on patients well into their 60s if they are in otherwise good health -- are these: Risky abnormalities per FISH test, such as 17p, 11q, and perhaps Trisomy 12; ZAP-70 and/or CD38 positivity; clinical symptoms that show disease progression on many fronts; relapse from treatment, especially after a shorter-than-average remission.

For such young-uns with uncooperative CLL, the stem cell, or bone marrow, transplant is a light at the end of the tunnel. For some, this light may have the characteristics of an oncoming train, but I prefer to look at it as a potential cure.

Harvey ponders the path to success

Anyone looking down this road should keep up with Harvey’s Journal at CLL Topics. Harvey is a somewhat hypothetical fellow who is about to undergo a cord blood transplant. A recent journal entry, Planning for Success, describes the logic of achieving a CR ("complete response") prior to transplant, as well as the ways in which our treatment choices over time can reduce our ability to achieve that CR. The facts presented led to a little surprise and consternation among some readers.

Chaya Venkat, the Topics writer who, like Elwood P. Dowd, enjoys the delusion that there is a Harvey in the house, cites a study from the Fred Hutchinson Cancer Center. It shows that entering a transplant with bulky disease puts you at a disadvantage: after two years, 14% of patients with lymph nodes less than 5 cm at transplant had relapsed, compared to 52% of those with nodes greater than 5 cm. She further cites another study from the Hutch, albeit with a small sample, showing that, in her words, “the risk of relapse in CLL patients going into the transplant with full blown CR was zero, none, nada.” If you think about it, that makes sense: the less CLL the new immune system has to fight, the better the odds of achieving a successful graft vs. leukemia effect.

Chaya also provides data from a 2005 study by MD Anderson, which I have discussed in the past and which can be found in detail here. It shows the CR rates in previously treated patients who are given FCR, which is today’s gold standard of chemotherapy. While 70% of those using FCR as their first treatment get a CR, that number drops in previously treated patients: to 29% in those who have used single-agent Rituxan; to 28% in those who have used an alkalyting agent such as chlorambucil or cyclophosphamide; to 24% among those who have used fludarabine and cyclophosphamide together. Table 3 of the study has details on fludarabine sensitivity: 31% of those considered sensitive achieved CRs, as opposed to just 5% of those who were refractory to the drug. (A note here: Only seven patients in the study had used single-agent Rituxan. That's not a huge sample but it's the only one we've got.)

So what is a patient -- especially one who thinks they might need a transplant one day -- to do?

The treatment conundrum

The question of which treatments to have, and in what order to have them, is much debated among patients -- I have written my share about it in this blog -- as well as their doctors. As Dr. Terry Hamblin has pointed out, the studies are just not there to show us what combination, and in what order, leads to the longest overall survival.

Chaya delineates the problem as it relates to transplant: “Getting that CR ahead of the transplant may prove to be more difficult than you thought. Waiting too long to make the transplant decision may end up costing you. If you become a truly refractory 'salvage' case, it may not be possible for you to get a good remission no matter what you try. Too few bullets left, and too strong an enemy, the window of opportunity to get a successful transplant may not last forever.”

Dr. John Byrd has been quoted as saying that your first treatment is the most important because your first remission will be your best. And if transplant success were the foremost goal, then we would all have transplants following our first treatment, and we would all insure that our first treatment is the one that gives us the best chance of a CR.

Indeed, the day may come when 1) we can predict a person's disease accurately enough, and 2) transplants are safe enough, to make that a routine course of action for those with aggressive disease.

But we are not there yet, and transplants are still risky: There is a 20% chance that a transplant will shorten your life and another 20% chance of relapse, those statistics according to UK CLL expert Dr. Andrew Pettitt. (The good news, according to Pettitt, is that 60% are successful.) With the possible exception of 17p-deleted patients, those with the most aggressive CLL, most top doctors hesitate to recommend a transplant at first remission. They are more commonly recommended at second remission in patients with rather aggressive -- perhaps I should say "assertive" -- disease. Still other doctors, those who do not see the transplant glass as half full, recommend transplants only as a last resort, after any number of therapies have been tried. In all these instances, treatment with something as conditioning for the transplant will be required.

And if there is one thing we do know -- just look at that MD Anderson data -- it is that treatment with any drug(s) sets up a disease resistance situation where second treatment is likely to be less effective.

Acceptable (?) risks

So, if we assume that for most of us a transplant at the outset is too risky but may become a desirable risk later, how do we plan? How do we still get treated but avoid becoming salvage patients on whom nothing really works?

There are a couple of points worth noting here:

First, there is no guarantee of getting a CR with your first treatment, even if you use FCR. Thirty percent fail to get a CR in such cases.

Second, according to MDA, 25% of pretreated patients achieve a CR with FCR. Who does the best? Single-agent Rituxan users (29%) and the fludarabine sensitive (31%).

How do you know how you will respond? You don't, but we can hazard a couple of guesses. If you are 17p deleted, you will have a harder time getting a CR. Those with huge lymph nodes may have trouble since it is that much harder to get rid of them. The NCI guidelines say you don't need to treat lymph nodes until they achieve a mass of 10 cm, but as a practical matter many patients report problems reducing nodes that big to an acceptable size. Keep that in mind if you, like me, have a largely node-centered disease (which is, by the way, a trademark of the 11q deletion).

Speaking of nodes, let us recall the data from the Hutch: 14% with nodes of less than 5 cm relapsed. 52% relapsed whose nodes were greater than 5 cm.

Given the risks of a transplant, and the fact that you may be able to keep the disease at bay for many years with treatment, does this data suggest what might be the reasonable standard, the compromise point, which one should aim for? In other words, preserving your ability, to the best of your ability, to reduce your nodes to below 5 cm (and perhaps to get a CR to boot)?

I think "yes" is a reasonable conclusion. I also think the data suggest that two things will be of particular help in preserving this ability: using Rituxan as your treatment of choice and maintaining your sensitivity to fludarabine.

(As always, my opinions are my own: There are wiser people who may well disagree with me. You could be reading the ravings of a madman here; remember that propensity for copious quantities of cats.)

The treatment blue plate special

Harvey the Hypothetical had six years of good quality of life (QOL) with the “soft glove” monoclonal antibodies Rituxan and HuMax-CD20 -- especially helpful as he had no donor match and had to wait until cord blood transplants could be made reasonably safe.

Rituxan and HuMax are not free lunches, as Chaya points out, but I think they at least qualify as the blue plate special. To paraphrase Churchill, they are the worst drugs to use, except for all the others. These monoclonals can plug the holes in the dike without being as immunosuppressive as the alternatives, without being mutagenic, and without building quite so much disease resistance. (Cases of especially aggressive disease, such as the 17p deleted, are the exception here. Studies suggest that 17p-deleted CLL clones are pretty resistant to Rituxan, as well as to fludarabine; in these cases, the start-with-big-guns then straight-to-transplant-at-remission plan makes some sense.)

The MDA data show a CR of only 5% for the fludarabine refractory. It is possible to become fludarabine refractory after your first treatment, although you may luck out and respond two, three, or more times. In the 2004 ASH Education Book, Dr. Byrd noted that "at the time of relapse from initial response to fludarabine, 40% can be retreated and will respond again to the same regimen." He went on to say that "ultimately, virtually all CLL patients who are treated become fludarabine-refractory." (It is generally accepted, by the way, that if you achieve a long remission the first time, your chances of a good response the second time are improved.)

So, are you better off playing for time by using single-agent Rituxan? Or should you start your treatment career with FCR, which obviously carries a greater risk of making you fludarabine refractory? (Of course, even Rituxan can make your disease somewhat resistant to fludarabine; CLL is not black and white. Our stock in trade is shades of gray.)

Let's look a little further at the MDA study: Let's add together the percentage who got either a CR or an NPR (nodular partial remission -- patients with no swollen lymph nodes who would have achieved a CR but for some nodules in the bone marrow). The responses were as follows: 58% in Rituxan users; 40% in those who had alkalyting agents; 39% in the FC group; 48% in the fludarabine-sensitive group; and just 16% among the fludarabine refractory.

The takeaway here is that those who did best -- and now we're talking half of previously-treated patients that managed to get rid of those pesky nodes -- were those who had used single-agent Rituxan and those who were fludarabine sensitive.

So, if I were playing the odds, using Rituxan while trying to preserve fludarabine sensitivity by not using it is the way I would go. In fact, it is the way I had been going, until AIHA intervened and forced me to use cyclophosphamide and a touch of vincristine. (Not everyone should play it this way; Rituxan is still a soft-glove treatment and if you arrive at the treatment door needing something stronger to deal with the problems your disease is handing you, by all means use it.)

It is important to note that your previous treatment is not the only factor that influences your ability to get a CR or NPR with FCR. Do read the MDA article, which I linked to above; it goes into other significant factors, including age, stage, and number of previous treatments. For example, your chance of a CR with FCR is reduced significantly if you have had more than two previous treatments. (Does single-agent Rituxan, with its lighter touch, carry the same weight as other treatments, I wonder?)

Type A personalities, welcome to the seventh circle of hell

We can parse the data all we want, but it's important to remember that what Rowan and Martin of TV's Laugh In called the “fickle finger of fate” is also at play here. Harvey, for example, was not particularly fludarabine-sensitive out of the gate, while many patients are. None of us knows how we are likely to respond to drugs, despite what statistics may tell us.

The good news is that Harvey managed to get close to a CR with Revlimid, got those nodes down to well under 5 cm, which is also the cutoff point at which Campath will work on nodes. Since we’re talking hypotheticals here, he perhaps could have followed up with Campath to clear the nodes further, though this sets up a risk of immunosuppression, infection, and viral reactivation. HDMP was another option that he did not use that might have shrunk the nodes significantly. He could have opted for R-CHOP (or H-CHOP) or Hyper-CVAD. (One consideration, of course, is that the more immunosuppressive, toxic drugs you use to nuke the CLL with, the greater the chances of a side effect or complication. And transplants are complicated enough as it is.)

My point is that there are several ways to search for that node reduction and/or CR when the time comes (and, like all CLL treatments, each comes with its risks and rewards). And in the interim I think there is a reasonable middle ground -- exactly the ground Harvey has trod. He got close to a CR after six years of good QOL with monoclonals, and he saved fludarabine for the end. That last gamble didn't work out as well as he hoped, but welcome to CLL.

Hindsight is 20/20: At the beginning of his CLL career, Harvey had only the favorable 13q deletion and was IgVH mutated to boot, so it seemed his disease course would be rather indolent, in which case a transplant seemed unthinkable. It was only as time went on and clonal evolution to 11q occurred and his mutated status proved less significant than problematic clinical symptoms that the transplant option became more attractive. This concept -- “things can change” -- is important to keep in mind. It bolsters Chaya’s argument that one should not wait too long; I can tell you from personal experience, as well as the experience of many patients I know, that once the disease starts to progress, things do not get better. They get worse.

One of the biggest challenges of living with the "new normal" of CLL is that we are forever making decisions without knowing what our disease will do, or what the drugs will do. This is not a disease for Type A personalities. Fortunately, I have always been more of a roll-with-the-punches type of guy. My view is that we patients are dealing in real time, and we make the best choices we can. We should not fault ourselves for making one choice and then finding out that "had I known what I could not possibly have known I might have done things differently."

Chaya's journal entry gives us good food for thought. There is no such thing as a CLL treatment that is risk free or that will not have consequences down the road. No matter what you do, there is no treatment that will not make retreatment more difficult. It is all a matter of balancing the risks and the rewards, playing the odds, and a little luck.

And speaking of which, good luck to Harvey as he heads north to a cure! I confess to having seen him myself a few times. Must be chemo brain . . .

I gob a cobe

Or I should say, I had a cold. In the “life with CLL” category, “new normal” division, file the “common cold.”

What is a common event for most people is always threatening to take an uncommon turn in CLLers. The first symptoms bring a lot of questions to mind: How long will it take to get over it? What if it gets really bad and turns into pneumonia (which, by the way, is the leading cause of death of those with CLL)? Could this possibly be the flu? Will my lymph nodes balloon? Will my lymphocyte count boom?

None of this is paranoia. Any or all of the above can happen. The last time I had a cold, in early 2005, my lymph nodes grew dramatically as the dimwitted B CLL cells went into a reproductive frenzy in an attempt to fight it. My absolute lymphocyte count shot up. After I got over the cold, the nodes reduced to where they had been at the start, as did the count. (This is typical of what can happen to CLLers with infections. Usually the nodes and count reduce to where they had been at the outset, although there is no guarantee of a complete reversal. I must admit that one of my fears as the cold took hold was that it would ruin my so-far good and stable partial remission achieved through R-CVP.)

My first symptom this time was a mild sore throat. I wondered if it would get worse. (Strep throat, anyone?) Then, almost as quickly as it came, it went away. My symptoms turned to a runny nose and sneezing, which later morphed into a cough, which was only occasionally productive. I battled this with Marilyn's tomato-garlic soup, bed rest, zinc lozenges, and augmentin, an antibiotic.

Colds, being caused by a virus, tend to be resistant to antibiotics, but since I wasn’t sure what I was dealing with, throwing the augmentin at it made sense. And the yellow and green, um, expectorations did clear up rather nicely once I started the drug. So it is possible that I had some sort of infection that mimicked a cold. Unlike most colds I have had in the past, this one was not accompanied by a fever or chills. Some CLLers, especially those who are more immunocompromised and in later stages, may not experience common symptoms because the body is unable to mount an immune response. Fortunately, I don’t think I’m at that stage yet.

The good news is that what started on a Tuesday pretty much ended by Saturday morning. And it appears that there was no increase in the size of my lymph nodes. (Unlike two years ago, the neck nodes started out being undetectable thanks to R-CVP, and they remained that way through the cold. Even the abdominal nodes I can palpate did not appear to increase.)

So I am a happy camper, or as happy as I can be with CLL having gone through a cold.