March 6 Transplant Day +92

Now I am over three months post transplant. The issues I am working on are recovery from the chemo, orthostatic pressure (light headedness) and retention of Potassium and Magnesium. This past Monday during a clinic visit my blood pressure was pretty low, 91/58. The nurse did not want to release me until she gave me some fluids. I was able to come home where I got a liter of saline and potassium and magnesium and was feeling a bit better after the four hour infusion.

I have been reading a book on cancer, “The Emperor of all Maladies” by Siddhartha Mukherjee. Today I came across a portion where the author interviewed a survivor of leukemia that was treated as a child in the early 1960’s. The state of cancer treatment back then was terribly brutal. New combinations of chemo were being tested and the mortality rate was 95% after 12 months. Toxicities were experimental and many patients died because the treatment was either too hard or not intense enough. The author interviewed a lady who was the only survivor of all the young friends she had made while in the hospital. After all this time she was still struggling with why she was alive. “I feel as if I slipped through…” “I don’t know why I diserved the illness in the first place, but then I don’t know why I deserved to be cured.” As I reflected on this statement I was sitting in a lobby of the housing that is part of the Seattle Cancer Care Alliance. People have come here from all over the world to be treated for cancers, many for bone marrow cancers like leukemia. Some are going through treatment for the first time while others are back for a second series of treatments because of a relapse. Most are positive about the future and have hope. Some are angry at the world for their unfortunate circumstances and bad luck. AL or Primary Amyloidosis is not considered a cancer but it is treated like a cancer. The survival rates of patients that have been diagnosed with this disease and get through as far as I have gone are poor. I do not know why I got this illness, nor do I know why I am alive today. A young man died and I was fortunate enough to receive his heart back in September 2009. I do not know why I have made it through two bone marrow transplants. To go through all of this brings one to pause and ask questions that have no answers. I do know that each day brings small blessings that keep me going. This week I had some very nice moments as my son, daughter-in-law and two grandkids stopped over. I also received a card from a friend back home and visited with a good friend on the phone. My perspective has changed on what is important and what matters.

One more thing… Now that my hair is coming back, I have an interesting patch in the back of my head. Not all my hair is gray but one patch is dark. I guess I look like a palomino from the back. I wonder if I can get my drivers license description changed to reflect that.