September 20, 2010. It is exactly one month since I left NIH. What a rollercoaster ride! I am still transfusion dependent. My neutrophils dropped so much that I am now officially neutropenic for the first time ever. We had hoped to attend a wedding in Los Angeles over Labor Day. Making the decision to go or not to go drove me crazy. At the last minute, I decided it was not wise to venture on an airplane with such a low neutrophil count. I am so grateful I made that decision. Over Labor Day weekend in the Berkshires, I developed a cough and a fever. After calling doctors in New York and locally, I went to the emergency room at the Berkshire Medical Center where I had been getting transfusions. They quickly admitted me and started a four-day regimen of round-the-clock intravenous antibiotics. Although there is was no evidence of a bacterial infection, I was treated as if I had one. When they finally let me go, my neutrophil count was 400 and I left with a ten-day supply of Levaquin (500mg). I also had Neupogen shots for seven days to help stimulate neutrophil growth, but my count stayed the same for many weeks. A week or so later Dr. Roboz put me on Cipro and Fluconazole to prevent bacterial and fungal infections.

November 8, 2010. It is almost three months since the beginning of the trial. My neutrophils are back up to 1400 where they were before the trial and I am off Cipro and Fluconazole. I am still getting red blood transfusions every other week and platelets every week. It is not fun spending one entire day each week being transfused, so we are hoping that the Campath will kick in soon. On November 23rd I will return to NIH for my three-month evaluation. Steve and I are looking forward to hearing what the doctors there will say.

November 23, 2010. After blood tests, an interview and examination by a fellow, and in between the x-ray and scan of my lungs (to see if there is any change over the past three months), an echocardiogram and pentimidine, I meet with Drs. Young and Scheinberg. It has been 11 days since my last platelet transfusion, longer than anytime since I relapsed. My platelets are 15. I can hardly believe that I don't need a platelet transfusion. Seeing that my reticulocyte count is up (these are baby reds that cannot be transfused), Dr. Young is confident that my bone marrow is starting to produce some blood cells. He adds that patients can do well with platelets in the mid-twenties and not to be concerned if they don't get much higher. My RBC is in the low 7's so I get two bags of red in the day hospital. Dr. Scheinberg finds me there to tell me that the chest x-ray and scan are fine and to talk to me and Steve about my condition. He says he is "encouraged" and to expect my counts to go up soon.

December 15, 2010. It is five weeks since I had a platelet transfusion; three weeks since red blood. Last week my platelets were 23; today they are 18. Neutrophils are 1760. And, miracle of miracles, my RBC is 10.4. Excited, I call Dr. Scheinberg. "That is encouraging," he says. "Dr. Scheinberg, you said that before," I respond. "Can't you step it up a bit?" "Okay," he says, "how about very encouraging?" "Can you step it up a little more?" I ask. "How about beyond encouraging?" he says. "Wow, I'll take that. Beyond encouraging is it."

December 28, 2010. The New Year is really looking up. Today, my platelets are 32, RBC is 11.1, neutrophils are 2400, and WBC is 3.4. I email Dr. Scheinberg. His response: "Counts look encouraging."

I knew there was no guarantee that my counts would stay this high but I didn't think that in only two weeks my red and white counts would drop precipitously. It seems that the only thing we can be sure of with this disease is that we never know what the future will bring.

 
On to 2011. For my continued story, see my comment thread.