Give Me an “R”; Give Me an “E”; Give Me an “M”…

May 10, 2007 at 1:34 pm (Uncategorized)

Yesterday I had the most expensive two-and-a-half hours of my life. I (or those acting on my behalf) have certainly spent more total dollars than last afternoon consumed – for instance, my wedding, my PET scan, and long hospitalizations have all cost more in absolute terms – but in a price per minute equation, I think I set a new personal record. $6,000 odd dollars for my first Remicade infusion. $6,000 to watch a bag of what looked like saline drip into my arm. $6,000 to sample the most powerful in the new line of anti-TNF agents that are proving effective against inflammatory auto-immune diseases such as sarcoidosis. My husband Jay kindly noted that we would save out insurance company a lot of money if I simply got infused with say, heroin or cocaine.

I’m not usually a superstitious person. I walk under ladders, have watched a black cat cross my path, and have even broken a mirror. (Hey, maybe that’s why my life sometimes feels like demons have possessed it!) But today, in the wake of my $6,000 Remicade fix, I am feeling touchy about pushing my luck. I am loathe to mention that I am feeling good. (Make sure to read the “good” with a whisper. We don’t want to summon forth the broken mirror sprites). The docs said that if the new treatment is likely to work, I should feel positive results sooner, rather than later. I awoke today and noticed that the joints in my feet weren’t throbbing. I also noticed that I could bend my fingers, and, as the day progressed, that my fatigue didn’t threaten to devour me in its gaping maw. It’s startling to realize that the way I remember feeling in pre-sarcoidosis days isn’t a false memory – similar to how we all start “remembering” high school as fun around the time we turn twenty-two. No, I actually did used to have energy and mobility.

I am not jinxing myself. I know I have a long road ahead with the Remicade to even determine if it works. Two weeks from now, I’m due for my next infusion. Maybe it’s not the Remicade easing my pain and fatigue today. Maybe some other poor shmuck broke a mirror and the naughty gnomes of chaos are visiting her today, only to return to my knuckles and ankles tomorrow. Maybe the good effects will wear off in a few hours. Maybe the stars have realigned in a new formation. Maybe I spontaneously went into remission at precisely the time they dripped $6,000 worth of immune-suppressants into me. Who knows? But if living in chronic town has taught me one thing it is this: I must appreciate every good day that comes. Extrapolating the causes and consequences of my good day is up to my doctors. My job is to live it.

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