2 down...

and I don't know how many to go. Yesterday, Dec. 7, marked the two year anniversary of my Multiple Myeloma diagnosis. It has indeed been an eventful two years. Since my diagnosis I have undergone several rounds of chemotherapy, an autologous stem cell transplant, remission and relapse, and more chemotherapy. Now I find myself in a literal life and death struggle with my insurance provider.
My best option for further treatment is an allogeneic stem cell transplant, with stem cells provided by my younger sister.
I know the statistics, I've read the literature, I understand the life expectancy of a person with this disease. Even knowing all of this, even in the face of the insurance company's intransigence, I still have hope, I still believe. I believe that I will be fine no matter what happens. I heard a great sermon this morning about unloading all of your baggage by giving it to God. I have tried over these past two years, not always succesfully, to give the baggage that is MM to God. Today I renew that commitment. I have been blessed with a wonderful wife, a great family, and better friends than I deserve, all of whom have been on this road with me. When I was diagnosed, I wasn't sure I would be around to write this. Now I look forward to posting on the 20th anniversary of this date, and the 30th. Will I be able to do that? I don't know, but I do know that with God's help and the support of my family, my friends, and all of you, the journey, how ever long, will be a great ride.
Deacon John
The Solemnity of the Immaculate Conception
Dec. 8, 2009
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Appalling Appealing

Ok, I have been as patient as I can, waiting for my insurance company to reply to my first letter appealing the denial of my treatment. Here's a copy of my latest letter, the last nice letter I plan to send:
On Nov. 2, I mailed a letter appealing your denial of my request for treatment of Multiple Myeloma using an allogenic stem cell transplant. I asked at that time that certain documents be sent to me, documents that your denial letter stated I was entitled to see. I also asked that a reason for the denial, other than the vague ones given, be presented to me. I have yet to hear from you, almost four weeks after my request. Hopefully this letter is moot and the requested documents are on their way to me. Should they not be forthcoming, I hope this letter will serve as a reminder that I have requested this information and I do expect to receive it. It is my sincere hope that the next time I correspond with you it will be in response to the requested information. I also wish to remind you to send this information to my doctor as well, letter appealing their denial of my treatment.
I await your reply.
I think I have been patient enough. I have had a couple of calls from the nurse case manager, urging me to contact my doctor and press him to change the treatment plan to one they can approve. Since I did not go to medical school, I think I'll let my doctor make treatment decisions. I'll give the insurance company a couple of more weeks before I write again. The next time I'll not be nearly as nice, and the letter may have a few more adresees.
Deacon John
The Second Sunday in Advent
Dec. 6, 2009
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

It's In The Mail...Almost

I guess I finally calmed down enough to write an appeal letter to my health insurance provider. I tried to be as nice and as calm as I could, and I think I succeeded too well. I may have been too nice. Here's the letter:
To Whom It May Concern:
I am writing to appeal the denial of my appeal of your original denial of payment for treatment of Multiple Myeloma using an allogeneic stem cell transplant. Your letter states that the denial is based on the treatment being a phase II clinical trial, trial number NCT00683946, despite being assured by my oncologist that this treatment is not a part of this study. Your letter states that a photocopy of the Plan provision on which this denial is based is enclosed with this letter. No such document accompanied the letter I received. I request that you provide me with this document.
The reason for denial remains vague, at least to me. Is it the procedure itself, the drugs involved, one of the drugs, all of the drugs, some combination of the drugs? Is the denial based on the allogeneic stem cell transplant? Please enlighten me as to the reason for the denial other than the claim that the treatment is experimental.
I also request that you send me copies of all relevant documents and information on which this decision was based. I also request that this information, if it has not already been given, be provided to my doctor,
I await your response.

I omitted my doc.'s name and address, for his privacy. I also omitted the name and address of my insurance company, only because I am holding back should I need to use it later. Believe me, if it will help I will make them known. This fight has just begun and I am as stubborn a human being as ever lived. I'm fighting for my life and I will fight as hard as I must, using whatever I must to get justice. After all, am I not paying them? I thought about this, am I not living up to my faith, am I being vindictive? While it is hard not to be, I also decided that I am not fighting just for me, I am also fighting for all those in my situation, those who for whatever reason can't fight back, or have been intimidated into not fighting. Perhaps my fight will in some way help them. I hope that in some way God is using me and my fight to help others. If so, this is all worth it in the end, no matter what that end may be.
Deacon John
Friday of the Thirty-first Week in Ordinary Time
Nov. 6, 2009
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

Not so appealing

I am waiting to talk to my doctor about appealing the denial of my appeal, and I thought that I would write my own letter of appeal to my insurance company as well. I decided to wait on that till I calm down a bit since the least inflammatory opening I could come up with was “Dear Corporate Scum.” I thought the ending was rather fair though since I did ask God to have mercy on their worm-eaten souls, giving them the benefit of the doubt as to whether or not they actually have souls. Ah well, I am praying that my faith kicks in, and I find a way to act in a more charitable manner. I am trying to remember to love my enemy, though why they should be my enemy is a mystery to me. Pray for me and for everyone being driven around the bend by this insane system.
Deacon John
Wednesday of the 29th Week in Ordinary Time
Oct. 21, 2009

Denial ain't just a river in Egypt...

I got the letter I halfway expected today, the letter from my insurance company denying my appeal of their decision to not cover my bone marrow transplant. I’m disappointed, but not surprised. I suppose their job at this point is to deny and delay in the hope that I will either quit or reach the point I am beyond help. Well, I am a long way from being beyond help, and if they think I will quit, they don’t know me very well. They denied stating that the transplant is part of a clinical trial, despite being assured by my doctor that I am not part of any clinical trial. Denial again seems to be based on one of the drugs the doctor wants to use. I get the awful feeling that people are playing semantic games with my life. I am getting in touch with my doctor in Chicago to see what the next step is, I am sure he will appeal the denial. I’m not through either. I will fight back, and fight as hard as I have to to win. I envy people in countries that don’t have this insane insurance mess, who don’t have to spend time begging for help from people they are paying to help them. This crazy system needs to change and change today. Single payer, anyone?
Deacon John
Tuesday of the Twenty-ninth Week in Ordinary Time
Oct. 20, 2009

I Won't Back Down

Last year before my first transplant my brother and sister-in-law made this a theme song for the fight. In light of the relapse, waithing for the next transplant, and insurance difficulties, I thought was a good idea to bring it back. Sing along!
http://www.youtube.com/watch?v=LKqO0FeaCFQ&feature=related
Sorry, I couldn't figure out how to upload the video.
You can also find in my Facebook page
http://www.facebook.com/home.php?ref=home#/home.php?ref=home
Deacon John
Saturday
Oct. 3, 2009
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

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

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

We Have a Winner

The sibling donor sweepstakes has come to a conclusion and we have a lucky(?)winner.
The winner is my youngest sister who is a perfect match. I thought it might be her since we are more physically alike than my other siblings. So, she gets the all expense paid trip to Chicago, and unfortunately the experience of Neupogin, a drug designed to stimulate stem cell production. Then there is the real fun of harvesting the stem cells. None of this will be pleasant for her, and I cannot adequately express my gratitude to her for being willing to undergo this for me. Yes, I would do it for her, or any of my siblings, we all say we would do this for one another, but actually being called on to do it, that's different. But she will and I am more grateful than I can express. She is giving me the gift of life, and there is no adequate way to repay her. All I can say is thank you. Please pray for her as she prepares for this donation of life. I get the feeling that the docs in Chicago want to do this as soon as possible, so now it's down to insurance approval. Please pray that that happens quickly, so we can get started again.

St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
The Vigil of Pentecost
May 30, 2009

One Week of Revlimid Down

I started chemo a week ago Friday with Revlimid a drug intended for those with relapsed MM. The nice thing about Revlimid is that it is a capsule, so I don't have to sit in a doctors office hooked to an IV. The best thing is that it is working. Tumors are shrinking like mad, I am nearly pain free, and this is only in a week. On the down side, I am tired, and the possibility of low blood counts increases the chance of infection. It does seem that Revlimid is getting Poindexter under control. So, I keep praying that this new treatment will reign this disease in enough to get the donated bone marrow transplant, and hopefully finish Poindexter off. Keep praying.
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
The Vigil of Pentecost
May 30, 2009

The Journey Continues

I haven’t posted for a while mainly because I just haven’t felt well. So far for May it’s been Cancer 3, Me 1. Things are starting to turn around. I started a new chemo regime, Revlimid, a drug for those who have relapsed Multiple Myeloma. This should bring Poindexter back into control. We went to Chicago earlier this month to be evaluated for a bone marrow transplant using donated bone marrow. My siblings, the best hope for a match, all received kits in order to be tested and typed for the transplant. I was typed while in Chicago. It takes between 2-4 weeks to get the results, so it may be a couple of more weeks to see if we have a winner. I’m not certain yet of the timeline on how this transplant will go. When it does occur, I will again be hospitalized in Chicago for about 3-4 weeks. We asked about others being tested since many have volunteered, but the best advice the doctor had was jut to get on the national bone marrow donor registry. When the transplant does happen the lucky(?) winner of the donor pool gets to spend a little time in Chicago as well. I always knew Poindexter would come back, I just didn’t think it would be so soon. That’s OK, we will just jump back into the fray, trust in God, and fight on.
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

Deacon John
Solemnity of the Ascension
May 24, 2009

Transplant Time Again?

Well, radiation is completed on my shoulder and eye, and they are vastly better. I can move my arm again and there is almost no pain. We've been wondering what the next step will be and today we heard from Dr. Cohen in Chicago. He is considering, at this point using marrow from a donor. This is probably several months away, so there is likely going to be more chemo here first. Well, at least we have the beginning of a plan. Something needs to happen, I've felt terrible for the past week, and these nodules that are springing up all over are causing some pain. I am not complaining though, because it could be a lot worse. Thank God I have options. It looks like we'll be heading back to Chicago. let's just hope it's not in the winter!
St. Peregrine, pray for us.
Blessed John XXIII, pray for us.
Deacon John
May 5, 2009

ZZZZZZZZZAPPP

Today I began radiation treatments to eradicate the plasmacytoma on my right shoulder and another place under my left eye. The treatments don't take long, just a few minutes. Indeed, the set up takes longer than the actual treatment. So, I can go on my lunch hour, and not miss much work. Some one asked me today what I was having for lunch so I told them I was having an isotope sandwich with a side of photons. Oh well, it seemed funny at the time. I have only been scheduled for 10 treatments, so one down and just nine to go. Hopefully I'll be able to move my arm freely again. After the radiation it should be a return to chemo, and possibly another transplant. It is the Easter season, a time to celebrate new life. Perhaps this is new life for me.
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us
Deacon John
Thursday in the Octave of Easter
April 16, 2009

Learning Patience All Over Again

We saw the oncologist this morning about starting radiation treatments for this enormous plasmacytoma on my shoulder, and a small, but growing, place under my left eye. We hoped to get started, but, today turned out to be just a preliminary event. Now we have to return on Tuesday for some scans, then we may start actual treatment on the following Monday. I know there has to be a plan, but why all of the seeming foot-dragging? It has been more than a month since I first called my oncologist about this place on my shoulder. The good news from today is that they want to finish the radiation as quickly as possible, perhaps just two weeks of treatments. Once radiation is complete we can get on with whatever else is planned for treating this (scatological term) disease. The treatments can be harsh, but the waiting is the worst of all. Ah, well. patience, patience.
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us
Deacon John
Good Friday
April 10, 2009

An Idea

If you check the sidebar on the right hand side of this blog you will see that I have added a picture of Blessed John XXIII. The last few weeks as I have waited to see if Poindexter had returned or not, something (or Someone?) urged me to pray to Blessed John for his intercession, asking that I may be healed. I thought, why not? He is certainly (to me) the most important Pope of my lifetime. He brought about changes that affected millions, and changes that affect me directly. Without the changes he started, I could not do what I do, I could not be what I am, a Deacon of this Church. And, he's a namesake. So I have begun praying daily for Blessed John XXIII's intercession, that I might be healed, and that a cure for Multiple Myeloma might be found, so all can be healed. I hope that you will join me in this prayer for Blessed John's intercession, especially for the discovery of a cure.
Deacon John
Palm Sunday
April 5, 2009

Fighting Anew

About a month ago I was celebrating being in remission for six months. Well, it seems our old friend Poindexter had other ideas. Over the past month a place has grown on my right shoulder to the point it looks like I'm trying to grow a second head. A biopsy confirmed that it is a plasma cytoma, a recurrence of the Multiple Myeloma the autologous stem cell transplant had put in remission. While not the best of news, it is not the worst of news either. My oncologist assured me that it is not desperation time, that there is still much that can be done, including the possibility of another transplant. He is currently consulting with the transplant team at the University of Chicago where my transplant was done, to see what treatment they want to do. In the meantime I will begin radiation treatment on the tumor on my shoulder to stop the bone damage it is doing. Before I spoke of this disease being a gift. It still is. I knew it would come back, I simply hoped it wouldn't be this soon. No, I'm not happy, but I will do what I must, the most important thing being to trust God and pray. God has brought me this far, I'm not giving up on God now. So, pray as I enter the ring again, and start fighting anew.
Deacon John
Saturday of the Fifth Week in Lent
April 4, 2009

Continuing the Journey

Wednesday, Feb. 25, was Ash Wednesday. So we enter Lent, not exactly a time of joyful exuberance. I would have posted this on that day, but I have, again, caught some bug and feel awful. But I do not care. I am celebrating because Ash Wednesday also marked the six month anniversary of my autologous stem cell transplant. My old friend Poindexter was whacked on the head, and has not recovered. I have stayed in remission for six months, a significant milestone. So, Lent or not, sick or not, I'm celebrating. Thanks to all of you who stood with me and prayed for me, and thanks to our gracious God for a gift of new life.
Deacon John
Friday after Ash Wednesday
Feb. 27, 2009

This might seem weird, but...

There are a lot of things in my life that I am grateful for, my wife, my family, my friends. I have a job I love, and I actually like going to work. I am grateful that my cancer was treatable, that the autologous stem cell transplant worked, and that I am in remission. I am more grateful to God for these things than I can say, yet there is one more thing I have come to be grateful for. This is going to seem weird, but I am actually grateful for my cancer, grateful that I have Multiple Myeloma. I told you it was weird. After all the time I spent fighting ol’ Poindexter, wanting nothing more than for Poindexter to disappear from my life completely, I am actually thankful that I encountered Poindexter. As I approach the five month mark since my transplant I have come to see that Poindexter was indeed a gift. An incurable, life-threatening disease, a gift. Yes, a gift because thanks to Poindexter I stopped. I stopped to look at myself, at my relationships, at my life. I gained an appreciation of time that I lacked before. I realize now there is so little time to waste. Time that should be spent with those you care about, time that should be spent growing and learning as much as possible while possible. I came to understand how much I love the people in my life, how much I love my wife, my family, my wonderful friends. I also discovered, surprisingly, how much I am loved. I have learned to accept and appreciate that love, to revel in it, and to rely on it. I learned so much about who I am, what I can do, what I can take, and what I can’t. I have learned to slow down, that there is no reason to rush through life. Life is meant to be enjoyed. All of this and so much more I came to see because of Poindexter. Would I still feel this way if the treatment hadn’t worked? Would I still be grateful if the disease were unchecked? I suppose I can’t really know and this is going to sound weird, but yes, I believe I would still feel this way. Poindexter is a gift, a gift through which God has allowed me to grow as a human being. Poindexter is a gift that made it possible for me to understand the importance of love and time and life. Poindexter is a gift and as weird as it seems I am grateful for it. Thanks be to God.

Deacon John
The Feast of the Baptism of the Lord
Jan. 11, 2009