I told you I was curious
I never said that I was brave
So Long Marianne by LEONARD COHEN
I have leukemia and I am planning a first remission haemopoietic stem cell transplant (like a bone marrow transplant) with no history of any cytotoxic chemotherapy. No heavy drugs at all. Only Rituxan, a mouse antibody that targets my good and bad white cells (specifically my B lymphocytes) and cyclosporin A used to suppress the immune system in transplant patients and auto-immune diseases. I am going for the ultimate weapon in the war on cancer when I haven't once used any of the conventional tools of that war (chemotherapy) This is an aggressive and novel path to a cure. But my CLL (chronic lymphocytic leukemia) is knocked way back. Last year was tough. In hospital 5 times for low platelets from ITP (immune thombocytopenic pupura, a disease where I destroy my own platelets and can have uncontrolled internal bleeding). It is not untrue to say I could have died. But now, my blood counts including my formerly disappearing platelets and pesky lymphocytes are back to normal. My serum chemistries and tumor markers are all within normal limits. My nodes which used to be 5-6 cms are all shrunken. My bone marrow which had 90% cancer, now has 3%. And I feel great. But my cancer is not gone. It is in remission, and its most virulent hordes may rise again. I don't know when, maybe never, maybe soon. So like the Amalekites, I will blot out their memory and kill their children's children. And the only way to be certain it stays gone is eternal vigilance. That means a new immune system, because mine is not up to the task. So I am getting my new blood system from my unknown, out of the country, blessed 22 year old male biological twin. A perfect 12 of 12 match, with even my A- blood type. It is very sobering to be doing this when I feel so well. I am trading off an unknown length remission for a chance at cure The numbers are sobering. Without a HSCT (haemopoetic stem cell transplant), my chances of reaching 65 would be very slim. With it, I have at least a 10% chance of dying in the first 100 days, a 30% chance of severe graft versus host disease, both short and very very long term. Double the death rate even 10 years out. Missing half a year of work wouldn't be a surprise. But it gives me a 50-70 % chance at a cure. Most people wait for their HSCT as a "Hail Mary" desperation last move. I am doing it from a very healthy and quite elective position. I haven't even had any real chemo yet. I have other cards I could play, but I have the perfect donor and a deep remission and my good health so I am gambling it all. The stars are lined up. Would you gamble it all? I am so scared but so convinced that is the right thing to do. I have no doubt I should move from strength to strength. If the transplant is safe for me and the donor, I will soon be writing my most original essay on how I spent my summer! But first I will visit family and friends. I have been crazy busy squeezing much fun and travel into the months before my planned stem cell transplant in June. Just back from Prague and Vienna, before that, Seattle and Vancouver... Next, Baltimore, NYC and Toronto. I am so lucky to get to do all this traveling to see my family or just see the world. After the transplant, I will be content with the view out the window for a while. My point is that CLL forces us to face our mortality, and because our time is limited (Me? I expect I've only got another 40 years or so before I move on), it is too precious to waste. The hardest part for me after the transplant will be not practicing medicine for months. It so defines who I am. I am making this last push of teaching and seeing tons of patients as I also must do my own prep for the transplant. For now I am planning a real-time graphic novel about the transplant with my artist son. How cool is that! Please forgive my bravada. It is my way of coping with my real fears. I have no doubts of my ultimate success and no illusions about my trials.
Brian, 56 yr family doc & father of 4, dx 9/05 with CLL del11q, unmutated CD38+ zap70+
Labels: The Decision