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.

1 comment:

  1. A three legged dog walks into a bar and says, "I'm looking for the man who shot my pa(w).

    Superluminal (faster than the speed of light, meaning time travel is possible) neutrinos were thought to have been recently discovered at CERN.

    Bartender says, "We don't serve no stinking neutrinos in this bar."

    A superluminal neutrino walks into the bar.

    Hey, it's a good joke if you tell it to your physicist friends.