Riding the Rollercoaster in Leukemia Land

When we spoke to the oncologist on November 5, he told us that it is EXTREMELY unusual to see a systemic relapse after a stem cell transplant. The CNS relapse is more common, but still rare. In order to know just what we were dealing with, Dr. G. order more tests on Tim's blood. One of these tests, done on Tim's blood, is called a PCR test. (No, I don't remember what PCR stands for, other than something with chromosomes.) Anyway, the first PCR test results came back negative. For one whole day, we thought that maybe things weren't so bad. Maybe the leukemia was just in the CNS and Tim wouldn't need a stem cell transplant. However, on Friday, Dr. G. performed a bone marrow biopsy. They found leukemia cells in the bone marrow. So Tim does, indeed, have a systemic relapse and will need a stem cell transplant.

That's life in leukemia land for you. One day things are looking up. You feel good or you have the time to do something you really enjoy. You can actually go for hours without feeling totally miserable. Unfortunately, you always come crashing down again at some point. You feel that things will never get better. You'll never get enough sleep, you'll never get caught up on the chores at home or that you (or your spouse) will never get better. The trick is not to get stuck at the bottom of the hill. You can't be happy all the time, but you also don't want to be crying in the pit of despair, either.

Tim and I call it "closing the box." We try to put all the worries and bad feelings away in a little box, put the lid on it and go do other things. Watching funny movies or sports on tv is a good way to close the box. One of the best ways to close the box is to get out of the house or the hospital and do something. Since that usually means you don't feel very sick on those days, it's easier to close the box on those days. Tim is much better at closing the box than I am. His box has a tighter lock, too. Mine never seems to shut completely and I'm always peeking at it to see if bad things are leaking out.

People are always asking me to open my box and tell them how things are going. Sometimes, if I've finally managed to close it, I don't want to open it. So don't be surprised if I tell you that I don't want to talk about how things are going or I don't answer your email or phone call. That's what this blog is for: a way for you to open my box and look inside without my being there.