I'm Feeling Much Better Now....

Yesterday we completed another whirlwind trip to Chicago (nothing like spending 10 hours in a car) in order to meet the new transplant doctor and make some decisions based on the insurance company’s denial of coverage for the allogeneic transplant. We came away from the meeting with Dr. Artz feeling much better than when we went in. We had many questions, all of them were answered. Dr, Artz stated up front that my treatment is not part of the clinical trial being conducted, they simply want to use that protocol because they feel it will be the most effective. I felt better because I came away feeling that I was not simply a number in a study, but a person that they cared about. As far as the insurance denial Dr. Artz said not to worry, he would get it approved. He had his appeal letter ready, he simply wanted to talk with us first and make sure of what we wanted to do. He said he is a bulldog about these denials and assured us once he pushed the red tape aside and talked to the insurance company’s medical director, he would get approval. As far as any drugs they find objectionable, that can be fixed. He told us to call back in a month, he will have it approved by then. Impressive. We discussed a variety of treatment options, and why this option is the best at this time. When we asked him the question no doctor likes, what would you do, he hesitated a bit then said that with all I have going for me, a perfect donor match, being relatively young for a myeloma patient, and being otherwise in generally good health, knowing all the risks involved, he would not hesitate to do it. I believe him. I am once again convinced God led us to the right place, that this is where we will get the best treatment, this is our best chance at success. We definitely feel much better now, and are ready to move forward.
Deacon John
Feast of Sts. Cosmas and Damian
Sept. 25, 2009
St. Peregrine, pray for us
Blessed John XXIII, pray for us

I Found One.....

a real "death panel!" Only its run not by the government, but by the nameless, faceless bureaucrats at my health insurance provider. OK, enough foolishness. I am angry, damned angry. The insurance company I thought so well of last year seems to have changed. Today I learned that they are denying coverage for my allogeneic stem cell transplant. The reason? They disagree with the cocktail of drugs the transplant team at the University of Chicago wants to use in preparation for the transplant. So just who is coming between me and my doctor? Either one drug in the mix, or the entire mix, or the procedure itself using this mix is still considered experimental, a phase 2 study. They will not budge, apparently, refusing to even consider allowing this. The transplant team in Chicago assured both them and today me, that this procedure is, despite the study, the now standard of care for an allogeneic transplant for someone with my condition. Research as I may, I cannot find anything stating just what the standard of care is for relapsed MM. The docs obviously (to me) don't want to use the same drugs as were used in the autologous transplant last year. They didn't work! As I see it now these are the only possible outcomes. I can appeal, but after speaking to someone in authority I am not optimistic about that possibility. The transplant docs in Chicago can relent, and change either the drugs or the treatment to be used. We are going to Chicago next week to discuss these possibilities. I did find this article on the value of a second autologous transplant, http://www.bbmt.org/article/PIIS1083879105011614/fulltext, but, oops, another study. No treatments for this disease other than transplant have good long term outcomes. So I suppose I could simply do as I stated in an earlier post and follow Scrooge's advice and reduce the surplus population. I, however, would rather listen to Dylan Thomas and refuse to go gently into that good night. I will rage against the dying of the light. All I want is time, to stretch the time I have to allow more time for a cure or at least more treatments to be found. Sorry, not very prayerful or trusting tonight. Maybe when I calm down. Maybe.
Deacon John
Feast of St. Joseph of Cupertino
Sept. 18, 2009
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.

People have asked me...

since your relapse why aren't you angry? Why aren't you angry at God for allowing this to happen to you? How can you keep praying, how can you still believe in a loving God? Well, of course I was angry, I was disappointed, I was upset, and wondered why. But I don't blame God. Disease is just a part of the human condition. While I would like my life back, the one I had 21 months ago before this disease, in many ways I would not trade the experiences I have had over that time. The last 21 months have been a great learning experience. I would not trade the illness, the transplant, even the pain (well, maybe the pain). I have learned much about myself that i never would have had the opportunity to learn. I have learned much about love, the love of family, friends, my beloved wife, and God. I am sorry for all that this has put others through, especially my wife. But I have grown, my belief in God's love for me has grown. Imagine the person you love most in the world. For me it is my wife. I melt just at the sight of her, the sound of her voice touches my soul. Even when we are talking about nothing, it is everything. I realize that is how God feels about me, only magnified beyond all understanding. God's love isn't so much parental as spousal, a desire for us, to be with us, to have us. My only hope is that I can return that love, though I know I fail often. This growth, this lesson about God's love, makes the past 21 months worth everything.

Deacon John
Saturday of the 22nd Week in Ordinary Time
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.