Seven

(August 2008) CLL is all about waiting. Since they don’t treat the disease until you either have symptoms or your blood lab results are bad, you’re in a period everyone refers to as “watch and wait.” Some people watch and wait for years. Not me. I started my chemotherapy one year after my diagnosis. Seemed long enough.

I made a conscious effort to be in good spirits when I went for chemotherapy. If I walked with a little spring in my step it would be clear that I was healthy and getting healthier. When they called my name, the assistant who escorted me to the infusion center would always say hello and ask how I was feeling. “I’m fine,” I’d say. “I can’t imagine why I’m even here.”

Chemotherapy infusion centers are not as dreary and dismal as you might envision them to be. There are some women with scarves on their heads and men with hollow eyes and skinny arms. But many of the patients don’t look any different than anyone else. And the conversation is pretty amazingly supportive.

Sitting in the waiting room, patients would greet each other as though they were long lost friends. Some weren’t feeling all that well, while many others felt fine, like me. But there was a common bond in what we were going through and, I think, a sort of resolve that we were going to come out on the other end of the treatments better than we went in.

Every nurse I had was great. In sixteen treatments, I only had the same nurse twice. There were times when they couldn’t find a vein and had to ask someone else to poke around for one, but that’s not a reflection on their ability. Some days, veins are just more stubborn than other days.

I’m not saying it’s the sort of place I’d like to go if I didn’t have to, but it’s not particularly hospital-like. There were volunteers walking around asking if you wanted more coffee or juice or if they could get anything for you. They had been through chemotherapy and other cancer treatments and were cured, and they came back to be with others. Wonderful people, those volunteers.

I didn’t find chemotherapy all that unpleasant. People would tell me they were sorry I had to go through it, or were happy for me once it was over. But to me, it was a four day work week, and two of those four were just half days. I read books, watched TV, kept up with my office e-mail, got waited on hand and foot (mostly hand, since that’s where they put the IV) and read a lot online. If only there had been a putting green.

So in the middle of June it all came to an end. For all I’ve said about how little it bothered me, I walked out of there pretty happy. My nurse told me to come back to visit and I said “thanks, but as nice as you’ve been to me, my plan is never to see you again in my life.”

My blood test results are coming around, but more slowly than I hoped. According to the treatment plan, I wasn’t supposed to have to come in for blood tests for three months. But with my white count still hovering near bubble boy, they wanted me to come back every couple weeks. My platelets had gone up and then dropped down again. No one seems to be particularly concerned about any of this, and they play down the significance of it, but if there’s really no problem, why am I going in for extra blood tests?

We won’t really know how well the chemotherapy worked until the first of October. I have another bone marrow biopsy in the middle of September and then get the results two weeks later. I’m not expecting good results. I’m expecting great results.

In April of 2007 I had a bone marrow biopsy that showed 79 percent—four out of five—of my white cells were leukemia cells. A year later, after three cycles of chemotherapy, the biopsy results came back with .04 percent—four out of ten thousand—of my white cells were leukemia cells. My doctor looked at that and said all we needed to do with cycles four, five and six was “mop up.” Less than one cell in ten thousand is considered a complete response, and in the closest he comes to a definitive statement my doctor said he is expecting a complete response.

In the meantime, I wait.