Hairy Guilt

Sometimes I don’t feel worthy to have leukemia….

I have what might be called a “good” leukemia, which sounds rather oxymoronic if you are the one with it. However, my leukemia responds very well to one round of chemo, 7 days of shots, 28 in all. Then of course I have my neutopenic fevers, caused by low white cell counts and unchained bacteria. But….. when all is said and done, if the chemo has done its job my travails through the valley of Hairy Cells lasts about five months. I go weekly for medical checkups to check my counts, but now as an outpatient who comes and goes and doesn’t eat raw fruit and vegetables, takes a daily shot at home, and swims again. Life returns to normalcy pretty quickly if fevers are kept at bay.
Meanwhile Miguel, my hospital room mate, continues to suffer from lymphoma, will be in the hospital at least a month, is going through a marrow transplant that has left him shaking, coughing and practically bedridden. Some of the patients I began with I still see, without hair, using canes, gaunt and receiving debilitating chemo. One child sits in the waiting room, no hair and with a face mask, while his parents sit next to him and hug him. Marcelo is struggling with his second round of lymphoma, has a wife and young child, and is hoping that a transplant will give him years to watch her grow. One man, what was his name? also struggles with something….what was it? and hopes to watch his children grow.
I feel like a man with a nasty hand burn who needed to go to the hospital burn ward. I took my place among all the burn victims, and the doctors labored to save my hand and help me on the road to recovery. And when I left the ward I left all those who could not heal easily; the disfigured who are condemned and relegated to center their lives around THE CLINIC, while my life I basically label as my own once again.

I have entered a door into a world of great pain and uncertainty, a world controlled by a cruel disease that kills little children as well as leaves widows and widowers to mourn. I entered a world where the future is always in question, where no one is “cured” and where future pains bring out the trembling question, spoken quietly, …. “Has it returned?” This new world is a waiting room where we all sit, and know, although we don’t say it, that some will no longer sit because they will be dead, and others will take there place.

But I, I have a “good” luekemia, and for that I only stand in the doorway of this world, fully expecting to leave it, hopefully for good. And, if I do return again, for a third time, it will most likely be to stand again in the doorway and befriend those who can’t leave so easily, some who won’t leave at all.