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.”