Friday, October 10, 2008

chronic life

Earlier this week we spent a day at the hospital, seeing Dave's doctor and then sitting in the infusion center while Dave got his Rituxan. There were minor problems, as usual, which turned a three hour process into an all day undertaking. It's been eight weeks since the last infusion and it will be eight weeks until the next one (in early December.) At the first of the year, we meet the doctor for a discussion of the next steps.

Dave's immune system is operating almost normally now, and his anemia has completely cleared up. The blood clot in his leg is still a problem, but not a major hindrance to daily activities. All in all, things are much better than I expected them to be at this point. Just being alive and well enough to enjoy the ordinary things seems like a windfall. And yet . . .

While chronic illness is preferable to acute fatal illness, it ain't no walk in the park. It seems churlish to bellyache about the rising costs of medication and treatment co-pays, minor (or major) side effects, hours in hospital waiting rooms, and so forth . . . when you consider the alternative. So we don't. Or we try not to. Unless we're with fellow travelers.

Pauline Chen, a transplant doctor, wrote an essay in the New York Times yesterday, about her struggle to understand why some of her patients resist or reject the post-transplant life. She talked with Amy Silverstein, who wrote “Sick Girl” (Grove Press, 2007.) Silverstein said, “There is a taboo in our culture against a sick person, post-transplant or otherwise, being honest about how difficult it is to live with serious illness and to live on the verge of death. These folks admit to feeling grateful and sad, joyous and angry, optimistic and defeated, all at the same time; yet only half of their emotions are acceptable in the public eye.”