Falling Into a Medical Abyss

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal-medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward—oncology because there are no wards for aplastic anemia—four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system—you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.