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.

It's Personal

I have been having a discussion of the current healthcare debate with some friends on Facebook, usually a good, calm discussion, though we may disagree. For me this issue has become intensely personal. How many of you know that your health insurance, should you have it, most likely has a lifetime limit on the amount that will be spent on you? If it is like mine, it has a limit that seems astronomical, one million dollars. You'll never use all that, so the limit seems irrelevant. Irrelevant until you come down with a catastrophic disease, like cancer. An incurable, but treatable cancer. You go into treatment and discover that one million dollars isn't very much money at all. I will, should I live a few more years, quite probably surpass that limit. What happens then? No insurance company in their right mind will sell me insurance at any price. I will be too young for Medicare, and ineligible for Medicaid. Where will I go? There must be an option available for people like me. Short of a single payer system (please God)a public option is the only choice. Or perhaps I should simply follow the advice of Ebeneezer Scrooge and "die and decrease the surplus population." I will say that I have like many other cancer patients decided that I will forgo treatment before I put my family into bankruptcy. In the wealthiest nation on earth this is not a choice anyone should have to make. It is not a problem now, we can pay the bills, but who knows? Join me in praying for a solution to this dilemma, not for me, but for those facing that choice now. If our faith in Christ means anything, we must use that faith to bring about good, to influence our society to do what is just. Faith must inform our whole life. Ours is a communal faith. In Genesis Cain asks God, "Am I my brother's keeper?" Much of the rest of Scripture is an answer to that question.
The answer is YES.
Deacon John
The Memorial of the Martyrdom of St. John the Baptist
Aug. 29, 2009
St. Peregrine, pray for us.
Blessed John XXIII,pray for us.

One Year ago Today...

...I was lying in a hospital bed in Chicago. I underwent an autologous stem cell transplant in an attempt to put my Multiple Myeloma into long term remission. I was hopeful then that this day would be a happy anniversary, with old Poindexter down and out. Things haven’t quite gone as planned. Poindexter proved to be a lot tougher than I thought he would be, managing to find a way back despite the transplant. This is certainly not the outcome that I hoped for, but I am not without hope. Treatment with Revlimid has put Poindexter at bay, as I await another attempt for long term remission, this time with an allogeneic bone marrow transplant. I am fortunate to have a donor for the bone marrow, fortunate to have insurance that will help pay for this second chance. I believe that this transplant will take hold and put Poindexter out of commission. Perhaps I am foolish to be so optimistic, but I’ve come to far to stop fighting now. Yesterday I read an obituary in the local paper, a man my age who died after losing his battle with Multiple Myeloma. I know the odds, I’m not a fool. I also know that faith has carried me this far, faith in God, faith in the power of the prayers and love that I have been blessed to receive from my family, my friends, and so many others. I have faith that one year from the day the next transplant occurs I will be able to write about my continued remission.

Deacon John
Feast of St Nemesius of Rome, Deacon and Martyr
Aug. 25, 2009
St. Peregrine, Pray for us.
Blessed John XXIII, Pray for us.

Steroid Saturday

The specialty pharmacy that ships Revlamid and Dexamethasone to me goofed. I should have gotten the drugs on Friday, but they did not come until Saturday. I don't think the day matters as far as treatment, but I would really rather take the steroids on Friday, not Saturday. They definitley make sleep difficult, and I do work every other Sunday. Guess next week I'll take then on Friday, though that is a day early. I doubt it will make any difference. I judt thank God that they are working, holding Poindexter at bay until the bone marrow transplant finally happens.
Deacon John
Twenty-first Sunday in Ordinary Time
Aug. 23, 2009
St. Peregine, Pray for us.
Blessed John XXIII, Pray for us.

My Patience Is...

wearing thin. I still have absolutely no idea when the transplant will occur. This is making my life very difficult as far as planning things. I missed NDICE, a national deacons conference, for the second year in a row, because I was awaiting word on treatment. A young woman from my former parish called to ask me to preside at her wedding, at the cathedral, in October. I was honored she asked, but had to decline because I don't know where I will be in October. This is getting to be more than a little frustrating. I saw my Oncologist today and came away no better informed than I was when I arrived. He says the docs in Chicago will make the call. Unfortunately my doctor in Chicago left for another hospital, so now my case has been re-assigned to another doctor I don't know, haven't met, and have yet to hear from. But the hold up could be insurance, I simply do not know. Tell me who to yell at and I will. AAAAAAGH! Thanks for letting me vent. On the brighter side, I just finished round three of Revlimid, and it is working wonders. My blood counts are good, and the only side affect is fatigue. My wife and I did decide, with the doctors approval, that if it seems the transplant will be in Oct. or Nov. we will ask to put it off until after the first of the year. We would rather not spend Christmas in the hospital. Ah well, at least the tumors are gone, the pain is gone, and other than being tired I feel fine. Thanks for your prayers. Kind of windy tonight, huh?
Deacon John
The Solemnity of the Assumption of the Blessed Virgin Mary
Aug. 15, 2009
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us