Monday, November 29, 2010

Limbo


Still stuck in the hospital. Probably they will not let me out until my neutrophils hit 0.6. So yesterday's 0.4 and today's 0.3 look like setbacks. Still, the average case starts seeing a neutrophil rebound on day 21, which will be tomorrow.

That's an average, so I might be slower, but I do think it's coming soon. I've felt stronger today and yesterday. And the real harbinger is the platelets at 133, up 23 points from just 2 days ago. The platelet concentration dropped for a while after my transfusion, but that's because they were diluted by the new red blood. (All the measures are X per unit of volume, so if you add one thing the concentration of everything else drops.) Since platelets are the first cell line to come back after chemo, this is a very good sign.

Finally got a nurse who really responded to my request for people to stay the f- out of my room in the middle of the night, so I slept OK between 11:30 and 6:40, and then went back to sleep until 9 even with a few further interruptions for blood draw, vitals, and pills.

On the pneumonia, still waiting for a final call. The infectious disease doc says the high-res CT shows a slight improvement over the NIH scan from 2.5 weeks ago. That's good news. The problem is that it's not definitive for fungal vs. bacterial pneumonia. The CT people lean heavily toward bacterial, but there is some nodularity that could indicate fungi. My ID doc is discussing today with a pneumonia specialist, but she thinks they will probably keep me on VFend (antifungal) for a while just in case.

This drug's nasty side effect is "visual disturbances." For me, that meant reading along on a black and white page and suddenly seeing everything highlighted in gray. It looked so much like MS Word highlighting that I actually held the page up to the light backwards to see if the highlighting was real. Then colors became lighter and somewhat attenuated, and everything shimmered slightly. Fortunately this only lasted about an hour. Another, much more fun effect appeared when going to sleep. In the half-awake state you reach on the way down, vivid color images materialized, shifted, grew. I soon realized I could control them, to a degree — distort them, morph them into new images, alter the colors. Interesting, and might make for some nice high-res color dreams. I once took mefloquine, an antimalarial, for 6 weeks and got this effect. Some of the coolest dreams of my life, much enhanced by having them in a tent under the stars of southern Madagascar.

They've backed off the VFend dose and we'll see how that goes.

Hoping to get some work done today, but I can feel a headache looming and think I'd better try to sleep some more first.

Saturday, November 27, 2010

Lift team

I live in a fat state. In 2009, over 70 percent of Michigan men and 56 percent of Michigan women were overweight or obese. We don't have the highest rates in the nation — that would be Louisiana and Mississippi — but we're right up there. When you think Michigan, think big chunky cars and big chunky people.

Those figures are probably even higher here in the hospital, not just among the patients but among the hospital staff. I've had over a dozen nurses, male and female, since I've been here and only two them even approached a normal body mass index. Practically everyone I see on the floor here is carrying a substantial spare tire. Or two, or three or four. One nurse (probably 5'5" and pushing 300 lbs) was so heavy she literally couldn't stand up for long; every time I saw her she was leaning or sitting on something. This woman didn't breathe. She panted.

One nurse told me that they used to train in how to lift patients, but in recent years they have started doing "lift teams" instead. Partly this is to protect the nurses' backs. But it's also about the fact that the patients have gotten too heavy for anyone to lift alone. And the fact that the nurses themselves are now too heavy and out of shape to lift people anyway.

I find the American obesity epidemic deeply frightening. We're living through what Diane Vaughan called the "normalization of deviance." Now that the majority of people are fat, it's coming to seem normal. Imagine: our children are growing up obese. They never, ever experience how it feels to live in a body that's not overburdened. I have relatives who are way overweight; if you dare to bring it up with them, they'll blame the body mass index tables (certainly approximative, but still a good guide). They just don't take into account a build like mine, they'll say. I don't see that much fat on me. (Those are quotes.) They literally don't see it.

It's infrastructural now. Japanese car manufacturers make bigger seats for the American car market. Clothing manufacturers change the standards for sizes so bigger people can continue to feel the same size. Plates and bowls get larger, so they can fit more food, so we eat more. (And in fact the size of the plate or bowl directly affects how much people eat before they feel full.) Tent-like clothing — vast hoodies, giant T-shirts, baggy pants — has become fashionable. And so on.

I've gained and lost 20+ pounds, so I know a little bit about how it feels to live in a body that's too heavy. It sucks. You're sluggish, you feel vaguely disgusting, you eat all the time because you can't tell the difference between feeling bad and being hungry. You can't tell when you're full. Your thighs rub together when you walk. Your activity level drops, which makes you fatter, which makes your activity level drop more. I've had all those experiences at only 20+ lbs above my best weight. I can't begin to imagine what it's like to be 100 lbs or more overweight. To hazard a guess, I'd think you just stop feeling your body very much.

I also know how hard it is to take off weight, and how easy it is to give up the effort. And I can't imagine how much harder that effort would be if you needed to lose not 20, but 70 or 90 or 150 pounds. Better to stop the problem at the source, in childhood — but overweight parents raise overweight children, and the cycle goes on.

If we could just get rid of calorie-laden "drinks," that'd be a start. Just before they try to supersize you, the fast-food people always ask: Do you want a drink with your meal? They're not asking if you'd like some water. They want to know if you'd like 200-300 calories' worth of corn syrup.

Nobody's overweight because they like it that way. This is a social disease, not an individual one. Worse, it's a disease that has been sold to us in the guise of instant happiness and convenience. Engineered flavors, designed to be addictive. Fabulous packaging. Advertising that links junk products to joy and bliss, much of it aimed directly at children.

As Joseph Stiglitz puts it, the American economic system privatizes gains, but socializes losses. Unfortunately, with respect to obesity it's the other way round. Your weight gain is delivered practically gratis by a society that's normalized it (massively abetted by the food industry and its relentless marketers), but when it comes to weight loss, you're on your own.

I've struggled with it too, for many years. Everything I've learned boils down to two simple principles: energy balance — the fundamental input-output equation — and frequent feedback. Things like the Atkins diet hold a few nuggets of useful knowledge (e.g. what kinds of foods reduce hunger most, thus helping you stick to a reduced calorie load). But no matter what anybody tells you and how badly you want to believe it, there's no magic combination of foods that will keep your weight down permanently if you don't pay attention to the only things that matter: honestly accounting for how many calories you take in and how many you put out (energy balance), and weighing yourself every day (feedback).

Recently the Tap&Track iPod app has been doing the job for me. It's an amazing tool, because unlike traditional diets where you limit your calorie count to a fixed number each day (thus starving on days where you do a lot), you keep a running daily count of calories (energy) in and exercise (energy) out. So if you want to eat more, you can burn more and buy yourself a cookie, or whatever. "Exercise" here includes all kinds of things, like cleaning the house, mowing the lawn, and raking leaves, as well as the usual sports.

Is there hope? Maybe. I've started seeing calorie counts displayed directly on menus (in Maryland, not in Michigan). There are rumblings about a federal soft drink tax as part of a solution to our budget crisis. Foodies continue to revive the joy of slow food, eaten slowly, for nourishment and deep sensual pleasure rather than an ersatz flavor fix.

But the problem is so damn big. I fear it's even bigger than we are. So to speak.

Friday, November 26, 2010

Fever

It's late and I don't have much energy to write tonight. Long story short, went home for a lovely Thanksgiving dinner, but by the time it was over I was running a fever of 101 and had to go right back to the hospital. Been there ever since. Another hellish night. Fever at 3:30 AM, stayed up until 5:30 AM, nurses came in for drugs and blood tests starting at 6:30 AM. Zoned out all day as a result. Working my way through an entire season of Lie to Me on Netflix.

Gabrielle rescued the CD of my chest CT scan from Fedex. The hospital mail service was not open today, so they weren't planning to deliver it until Monday. She brought it in and we paged the docs. That got their attention fast, partly because Gabrielle leaned over the nurse's shoulder while she wrote the page and ordered her to label it "urgent" (respond in 5 min)— as opposed to "routine" (respond in 30 min) or FYI (no need to respond). The two attendings came in together less than half an hour later. They say the scan shows a substantial lung infiltrate, but it does not look like a typical fungal infection. They want to do another CT scan, this time a high-res one.

They've put me on an antifungal in case that's the cause of the pneumonia. Tomorrow's CT results should help them decide whether to keep me on that for a long time — 3 months (!!) — or for a much shorter time. Since antifungals can fry your liver and make you hallucinate, the tradeoff against the substantial radiation dose from the high-res CT seems worth it.

So as of today, my daily drug regime is:
  • Zosyn: antibiotic, one of the ones they hold in reserve for drug-resistant bacteria
  • Bactrim: antibiotic, prophylactic against certain strains of pneumonia
  • Acyclovir: antiviral
  • Vfend (voriconazole): antifungal
  • Heparin: to prevent blood clots from all the lying around in the hospital. Given by injection. Burns like liquid fire. They prefer to give you shots in the belly; more effective there, according to the nurse. Ow, ow, ow.
  • Norco: painkiller, hydrocodone plus acetaminophen. Very nice, but like all narcotics if you use it more than a few times in a row you start having to jack up the dose to get the same effect.
Neutrophils holding steady at 0.5. Slight upticks in the WBC, RBC, and hemoglobin. Hope those turn out to be trends.

More tomorrow.