Kingdom of the Sick 2

KINGDOM OF THE SICK 2

When I was first admitted to St. Vincent's Hospital last November, it was suspected I had chronic leukemia. This is a very serious condition, I was told, but when my low red-blood-cell count improved, I could probably lead a relatively normal life. Because this type of leukemia is a chronic condition, I would have it until I died, but with proper care there was no reason to believe I would die prematurely.

A few weeks later, my blood count was still bad, so my doctor ran more tests. Rather than chronic leukemia, I have something called mantle-zone non-Hodgkins lymphoma, an illness comparable to chronic leukemia in terms of gravity. After more than a month in the hospital, my blood count stabilized and I was released. Though I expected to need more chemotherapy, I assumed the worst was over.

I was mistaken. Mantle-zone lymphoma is, in fact, an illness much deadlier than chronic leukemia. Indeed, the life expectancy is typically two to four years. By reading case histories on the web, I learned that most patients went through various treatments, which brought about temporary remissions. Nonetheless, the disease eventually returned, usually in a more severe form, and more often than not the patient died.

It is difficult to remain optimistic in the face of such overwhelming statistics. But optimism is required. I'm also resilient, and have recovered from each shock. Yet, even on my best days, it has been hard for me to accept the fact that my death may be imminent.

My hematologist, Dr. Ira C. Halperin of St. Vincent's, has decided that after undergoing many months of chemotherapy, I will have two stem-cell transplants, the first with stem cells taken from my own blood, the second with cells obtained from a donor. He hopes to get my lymphoma under control—possibly even cure me. But there are risks involved: Twelve percent of patients given a stem-cell transplant die from complications. And the use of such transplants to treat mantle-zone lymphoma is still in its infancy; although the results thus far have been encouraging, the rate of survival beyond two years is not known.

It's also difficult to remain optimistic when others are so shocked by news of my condition. Occasionally their reactions are unintentionally insensitive. One person told me he had a friend who had undergone a stem-cell transplant—and had subsequently died. Another asked, "Are you sure you're going to be all right?" and then noted, "I mean, lymphoma is a really tricky thing."

I try to push such remarks aside and live my life with as much normalcy and sanguinity as I can muster. After all, I am convinced, that is the only way I can move on.