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.”


Anonymous said...


I love your web site and appreciate very much your view on what's going on in your life. I was diagnosed about a year and a half ago and most of the time CLL is pushed into the back of my mind. Every now and then it rises up and I have a bout of sadness mixed with anger. I've not gotten to the point of needing any treatments yet. Your insightful narratives are very helpful.


Anonymous said...

It always bothers me when patients are "supposed to be" upbeat or perky. It's one thing to support a person in finding a way up, another to demand some bizarre facade. A related beef I have is how health professionals frame things. I try to get my peers to understand how patronizing, paternalistic, and disrespectful it is to use words like "compliance" or "non-compliance" to describe the decisions a sick or disabled person makes.

Anonymous said...

The quote here about simultaneously being angry and happy, calm and agitated, optimistic and depressed, and so on, is right on the money for me as well. Since I've live for over 10 years with CLL, I do get tired fighting, but up until the last year, I've done pretty well, in spite of having mostly negative prognostic markers.

Being grumpy is better than being dead, I guess.