Wednesday, February 29, 2012


Never will I be so happy to see a month go! February has sucked. I won't go into the litany of all the things that have gone wrong this month, just trust me when I say March 1 can't come fast enough.

My amyloidosis is back with a vengeance. I am back on chemo, this time Melphalan. This is the same stuff they had me on for the stem cell transplant. I begged Dr. Buadi not to put me on steroids and he agreed to try it but I’ve found a new doctor here who strongly urges me to reconsider. So I have been looking fondly in the mirror trying to enjoy for the moment the face I have in preparation for the bloating and misery of life on steroids.

I don’t want to go into all the details of my lousy prognosis from Mayo. I’m exhausted and depressed by it. I feel like it’s 2 steps forward 3 steps back. Whereas before I had Amyloidosis with kidney involvement I now have Amyloidosis with kidney failure.

Here’s the thing. I am consulting with some new doctors at Loyola for second opinions and I am feeling less hopeless about things. However I am not in a great place in dealing with this latest spate of bad news. I’m working on it but it’s a process and Amy and I have been at war now for three years.

While I hope I will be kept in your thoughts and prayers, please, please, please, I beg of you, no platitudes, nor emails of people handling adversity well or even ones that are supposed to be life affirming. I am in a place right now where all these things do is make me feel worse about how much trouble I am having right now accepting all this. I will get to a better place. I am getting help and as I said feel more hopeful. All I need from my family and dear friends is understanding and patience. I good joke or two wouldn’t hurt either.