Monday, January 29, 2007

Under New Management

I went to my new doctor today. I had to say goodbye to Hottie Hebrew Hematologist for reasons of irreconcilable differences. Those differences boiling down to the fact that he couldn't commit. Story of my life, but more on that later.

The short-story-long of it is this: there is a medicine that can help raise your white blood counts. White blood cells (neutrophils to be precise) are what fight infection. Low neutrophils mean you end up with fevers of 103.9, in the hospital, risking sepsis, and getting your advanced directive in order...once a week for a g**d*mn month and a half. Low neutrophils mean you have to wear a mask whenever you leave your house so you don't breathe in any germs, particulates or godknowswhat. So, it's not even about avoiding sneezes. It's about avoiding construction sites, car exhaust, everything, because of the potential for spores and whatnot. In short, it's effing misery without actually making the decision to live in a bubble a la John Travolta circa 1976.

HHH wouldn't give me that white cell-assistive medicine because it might cause leukemia with long-term use. When I was at NIH this past week with my 103.9 fever and my neutrophils in the toilet, they gave me two shots of that medicine because there was no way I was going to get better with antibiotics alone. I needed it and I got it. And today, my friends, my neutrophils had jumped from 200 to more than 800.

Don't get me wrong. 800 is still really low. It's not a number any normal person should aspire to. But the difference between 200 and 800 is quite simple for someone like me: it's the difference between potentially dying of infection and septic shock--and living an almost-normal life. Seriously. It's that black and white. I ate Japanese food tonight for dinner. Take out. Miso soup. Tofu. Veggies. From a styrofoam container not prepared by my own triple-sanitized hands. 'Cause you can't eat at a restaurant or get takeout when you have no neutrophils. You can't eat fruits or vegetables without pummelling the very life out of them. You can't eat out of the same container as anyone else in your family, so you have to have "your" peanut butter and "your" bagel chips. You can't eat feta or brie. You can't eat any meat or fish product that is not cooked beyond dryness. Same with eggs. You can't bake bread because live yeast is dangerous to the immune-suppressed. You can't eat anything that hasn't been brought to a rolling boil. You can't just pick up a coffee and a muffin at a coffee shop because you can't verify who has touched the muffin, whether it has been handled by only clean hands, who has breathed on it while it sat there, how long it has sat there, what has landed on it while it sat there. And the worst part is that you don't actually lose weight. You GAIN it, because you can't eat salad, can't easily eat an apple with cheese for a snack, can't eat anything The Bambina put her mouth/fingers/hands on first. So you eat bagel chips with peanut butter. Potatoes for dinner with bread. You become the Carbs With Preservatives Queen, so you're not only stuck at home, you're a fattie boombalattie.

As you can tell from that interminably long paragraph, having low neutrophils seriously cuts into your life in ways large and small, where every single food item that you don't purchase, wash, cook like hell and then eat off "your" plate with "your" fork and knife is the scariest thing you think you've ever faced. You get so justifiably afraid of food that you even Fear The Muffin. That delicious-looking blueberry, probably-harmless muffin. Being stored at some dangerous bacteria-forming temperature though, I bet, under that plastic case. Probably got sneezed on by the delivery guy, put on the tray with the finger and thumb of the pimply-faced kid behind the counter who MAY have washed his hands after taking a whizz this morning. Should I do it? {Flash to a hospital being told to get your affairs in order...} Naah. I'll go home and make toast. Sh&t! The only jam we have The Bambina licked the spoon and put back in the jar! Do I have any condiments that are mine? No. Okay, dry toast it is.

All of which is to say that I'm glad I'm back at NIH. I completely believe that HHH is probably right; he's a world-class researcher and physician, and I have no doubt that his opinion is rooted in something solid. I am absolutely at peace should something terrible happen in 2012 and I'll look back and say, "Dude. Thank you for totally having my back on this in 2007." But you know what? I'll be saying that because I'll be (barring any bizarre Ewan McGregor Fan Club bus accidents or bagpipe malfunctions) ALIVE in 2012 to send the thank you note!

So, as is my wont, I'm sure I will have other, future posts about me being back in the hospital. Rare progressive diseases are what they are and can't ever be considered "handled" in the classic sense of the word. But what they can be is managed aggressively. And I think that aggressiveness (aggression?!) is what I've been lacking in the past year.

So. This disease, as of this 600 point jump in my counts, is under new management. Time to get back to work. Without a mask!!

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