So we have made it back. July 7th will be three years since my transplant. We are back for the annual check up, but more importantly, to get some objective information about the possible progression of my disease and pick the brains of the amyloid specialists. And for me, to restore my sense of hope.
We have settled in once again at the Gift of Life House, the original building we stayed in when we first came back for the transplant. I look back and see that I haven't posted anything since September when my friend Jeff passed away. I had planned to write again the next month after Jeanine and I traveled to Chicago for a biannual convention for people with my particular disease as well as the doctors and researchers that are working to save our lives. The reason I didn't write anything back then or since was because of the information I received at that conference: that I wasn't going to get better. Over the years I have had my share of physical injuries and setbacks. Through all of the broken bones, stitches and surgeries that I have had I have always been able to convalesce, rehabilitate and restore my health and physical abilities. In facing the transplant three years I assumed I would do the same thing. That I would get through the surgery. That the transplant would stop the progression of the disease. And that through physical therapy and a positive mindset, I would get better.
As the conference approached, and as I read more and more about the ongoing research and trials, it became apparent that the prevailing thought is that the transplant is not a cure, and that the hope is to merely slow the spread of the amyloid. I really didn't want to go back and hear that not only would I not get better, I will get worse. But the opening words of one of the foremost doctors in this area said that very thing: it is an insoluable substance that is progressive in nature and transplant can only hope to slow the process. And although there was encouraging news about clinical trials that might help future victims of the disease, there was virtualy nothing held out for those who have already had their transplant.
And since those opening words my biggest challenges have been mental, emotional and spiritual. They said it is a disease that takes you an inch at a time. The prospect and challenges of living with it are more fearful to me than the idea of dying from it. That is the other thing I saw in Chicago, those who suffer from the progression of the disease: the wheelchairs, loss of bowel contol, and the continued emaciation of the body. An inch at a time.
I have always started my daily meditation by invoking the prayer of St. Francis. Particularly relevant is the part that asks to restore "doubt with faith, despair with hope, and darkness with light". And trust me, I have had many moments of doubt, despair and darkness since October. Especially several months ago when it become apparent that I am getting more symptoms: I need braces to walk, and I am losing sensation in my arms and hands. Yet I am committed to living in the place of faith and hope and light. It takes so much work to try and overcome the information from that conference that I found so discouraging. And so here I am again at Mayo. This place of so much healing and so many miracles. Looking to meet others on paths of healing in the face of overwhelming challenges. To talk to the doctors that have helped me so much already. To find that place of peace and hope in the eye of the storm. My love to all, Rick