Declining Fortunes

It has now been eleven months since my stem cell transplant. This means that the time is closely approaching for my 1-year evaluation. On the week of June 26th, I return to Boston Medical Center for three days to confirm if the treatment is continuing to keep my light-chain levels down. They will essentially perform the same tests that they did not be in January -- a ton of blood tests, a 24-hour urine collection, and of course, the dreaded bone marrow biopsy.

While the 6-month mark is a good barometer on the progress of the treatment, the 1-year really confirms it. If your light chain count is within normal range at the 1-year mark, the doctors say you have had a "complete response". Personally, I find that holding off on this diagnosis until the one-year mark is arbitrary, as you can still relapse after this point. I've met a couple of other patients who have had two stem-cell transplants, and they had relapsed anywhere between 6-months and 4 1/2 years from their first treatment.

I had been feeling good and flying high until my last appointment with my kidney doctor two weeks ago. It was at then that I had learned that my kidneys were not improving at all. This really brought me down, and has had me surprised, since I felt that until then I was doing very well. It has change my outlook on my upcoming evaluation. Before that appointment, I was cautiously optimistic. Today, I am anxious and somewhat worried at what they will find.

To make matters worse, I seem to have peaked in my recovery. My stamina and energy levels seem to have stabilized, and my edema has not changed -- if anything, it has gotten worse. These last few days I have found myself upping my Lasix dosage to keep up the increased fluid in my legs. Since I have been tracking my weight and medicine intake for the last year in my daily log, I can tell when things are acting a little wacky. It was only a month ago that I had finally succeded at finding a standard dosage to keep the edema in check. Now, I am having trouble again, and I am unable to tell yet if this is just another 'hiccup' or the beginnings of a problem. I'll be able to get more information by how I manage during the week.