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

Revlamid, Steroids, Late Nights and New Toys

I started my second round of Revlimid today, or rather on Friday. The Docs have mentioned several more rounds of it, and I'm not sure what they mean, I hope they don't mean what I'm afraid they mean, pushing the transplant into late this year. I really want to get this done, for my sake, yes, but also for my donor sister. I don't want her to miss work if she does not have to. Ah well, all we can do is wait. Along with the Revlimid come the steroids, so little sleep tonight. That's why I'm posting this at nearly 2:00 AM EDT. I'm up late but I do have a new toy to play with. My wife and I bought the reduced price iPhone today, uh, Friday. No I didn't need it, and in different circumstances I probably would not have bought it. Not to get morbid, I simply decided that I wasn't to going to pass on any new experiences. If I have a chance to go somewhere I either want to see again or have not seen, I'm going. If there are friends I can see and enjoy time with, I will. If there is a meal I really want to try, I will. If there's something I want and it is reasonably possible, I will get it. I really can't be sure if I will get the chance again, so if God blesses me with the opportunity, I'm taking it. Selfish, maybe a little, but trust me I won't get silly, at least not to silly.
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us
Deacon John
Feast of St. Cyril of Alexandria
June 27, 2009 (barely)

Closing in on the Transplant

We are definitely getting closer to the bone marrow transplant. Friday I had two of the tests the insurance company requires to make sure I won’t drop dead in the middle of the procedure. Despite everything my body has been through my organs still seem to be in pretty good shape. So, barring any odd results, we seem to be on the way. Since the tests were ordered, the insurance company must have approved the transplant. That makes it a good end to a not so hot week. Apparently, taking a break from dexamethasone and Revlimid, at least for me, ran me into a wall. The week started very well, but by mid week I crashed. But, I hung in there and I’m ok now. Monday I see my oncologist, to evaluate how Revlimid worked, and to get started on it again. I said last week started well because last Monday my wife and I celebrated our 35th wedding anniversary. That has made me all the more determined to beat Poindexter because 35 years with her simply is not enough. God has definitely blessed me by allowing me to share life with this remarkable woman. I want at least 35 more years, so Poindexter, you just can’t have me yet.

St. Peregrine, Pray for us
Blessed John XXIII, Pray for us
Deacon John
Twelfth Sunday in Ordinary Time
June 21, 2009

Revlimid is OK by Me

Today I saw my oncologist. It also happens to be the end of my second week on Revlimid.This drug is working wonderfully. The oncologist noted that my blood counts remain good, and that the plasmacytomasare going away. The only real side effect bothering me is fatigue. I will admit that I remain very tired, no matter how little I seem to do. Once Poindexter is in control, the dose of Revlimid can be adjusted to help compensate for the fatigue. I have been working part time, but I plan on pushing myself a bit more, and hopefully getting to a full time schedule in a couple of weeks. If, my wife and my boss and my co-workers will let me! The great thing is being nearly pain free. My ribs are still tender from the largest tumor, which is now virtually gone. I'm sure some kind of bone damage must have been done, but that's ok, I'll trade it for the move toward remission. All we can do now is jump through the insurance hoops and wait for the bone marrow transplant, donation courtesy of my youngest sister. I still can't find the words to express how much I owe her, and how grateful I am. I pray God's greatest blessings on her everyday. Ironically, my sister's 89 year old mother-in-law passed away a few weeks ago from...Multiple Myeloma. I think this has given my sister a perspective that no one else shares. Things are lining up, and I fully believe complete remission is just around the corner. Poindexter will not prevail. Keep praying for me as I pray for you.
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Feast of St. Boniface
June 5, 2009