Today I saw my shadow which means, like Bill Murray, I will need to stick around until I get it right. I am always struck how different every day can be. I get the chemotherapy (Velcade and Deexamethasone) every Wednesday. By Friday I feel like 'Death and all his friends' are visiting. It consists of that very uncomfortable feeling where, on the one hand you are hoping for reverse peristalsis (euphemism for vomiting) and simultaneously holding on to avoid the mess. At least it is predictable. I know that no matter how bad I feel on Friday, I will survive and Saturday will see my appetite return. By Monday I'm ready for anything. I know that in life we must have opposition in all things, but I am often struck by its immediacy.
I would have liked to stay home on Friday, but we had our intial appoinments with the Bone Marrow Transplant (BMT) Team at Stanford. Dr Arai, the BMT specialist, oulined what we would be facing in the coming months. I was very pleased that she had been in communication with Dr Lacy and the Mayo Clinic team. They discussed the nuances of my case with regard to the heart transplant and immunosupressive drugs. Then the nurse coordinator, Zoe, listed all of the studies that I would need in preparation for the transplant: Bone marrow biopsy, pulmonary function tests, labs, heart biopsy and an echocadiogram. This was then communicated with Dr Sardar, my oncologist in Roseville and the cardiovascular transplant team at Kaiser in Santa Clara.
When I was in Junior High School, I dreaded P.E. This was because whenever teams were chosen, I was always the last one standing on the sidelines (the irony of being 6' 2" and unable to dribble.) What a difference now, with all of this new-found coordination among all of these teams, this now elevates me as a first round draft pick. I guess I'll be playing for Stanford.
The gameplan will begin, after the preliminary workup, with 4-5 days of stem cell stimulation with a hormone called G-CSF (granulocyte colony stimulating factor). A Hickman catheter (semi-permanant IV) will be placed into my right subclavian vein and and after 5 days the stem cells will be harvested in a process called apheresis. My blood is run through a machine which magically pulls out the stem-cells and puts everything else back, (just like my daughters picking their favorites from a box of See's Candy.) These cells are then frozen. A few days later, I will get a drug called Melphalan which will kill my bone marrow, including the plasma cells responsible for my amyloidosis. Two days later, the stem cells will be reinfused to 'reboot the hard-drive' to a clean, unaffected state. It will take some time, however, for my red blood cells (RBCs), white blood cells (WBCs) and platelets to return to normal. During this 2-4 week period I will be anemic, prone to infections and bleeding. This will also be componded by the fact that I am on immunosuppressive drugs for my heart. Bring it on!
But that is all tomorrow. Today was beautiful; California, in the dead of Winter. It is 70 degrees outside and I went for a bike ride. I rode 5 miles on highway 193 into downtown Lincoln. I felt great. But my atrophied chicken-bone legs were yelling up to my brain, "What the heck is going on here?" Meanwhile my heart was querying, "Are we exercising? No one tells me anything, always out of the loop." My adrenals just rolled over and went back to sleep.
I remember the day after my heart transplant, I realized that I would be able to ride my bike again. I decided to set a goal to ride in the Foxy's Fall bike ride out of Davis, CA in October. I would do the metric century (100 km) instead of the century (1oo miles). I feel compelled to do this to raise awareness for the metric system (and amyloidosis as well) both of which are equally obscure in America. I figure, if I survive the BMT, I will then begin to train for this. I really think I can do it. It is important to have something to look forward to.