Sunday, May 1, 2011

So I am in the process of scheduling my two year anniversary return trip to the Mayo Clinic. Yesterday Jeanine and I traveled to Portland and attended our first Amyloid Support Group meeting. We met at Providence hospital with about 20-25 other Amyloid patients. It was great to network with others who have been on a similar journey. Most of them have primary, or AL, form of Amyloid, so their treatment is different than mine. Most treated with stem cell transplant and chemotherapy much like the Myeloma patients at the transplant house.

The most encouraging thing to me coming out of the meeting was hearing of patients who were 6-8 years post-transplant that had a clearing of their amyloid. In their cases it was heart and kidney involvement, but the fact that there appears to be cases where the amyloid fibrils actually disappeared gives me hope that that can happen for me as well, and that my nerves may some day regenerate.

I have been working more or less full time since last August. It seems my symptoms have stabilized for the most part. Some times it feels that I have more numbness in my legs, but other than that I don't think I am any worse. On the other hand I am not significantly better either. My legs remain very compromised, my intestines remain infected with the amyloid so it is hard to eat or gain weight, and I still have a lot of fatigue. But these are the same symptoms that all the others seem to have as well.

So here I am. Still alive. Trying to remain focused on and embrace all that life still has to offer me rather than mourn the things I can no longer currently do. Patience and trust remain the theme. I will end with the words from a plaque my friends Scott and Gail recently sent me: "Life isn't about waiting for the storm to pass; its about learning to dance in the rain".

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