Me and Poindexter

Anniversary

2010-12-08T10:19:00.002-05:00

Yesterday marked the three year anniversary of my Multiple Myeloma diagnosis. After one round of radiation therapy, five rounds of chemo and two bone marrow transplants I am in remission. Sounds like a lot to squeeze into three short years, but those three years also feel like a lifetime. I honestly don't remember what it feels like to not have cancer. This disease and the fight to overcome it has, in many ways, come to define my life. Perhaps it shouldn't, but the disease become so all-encompassing that having take over your life seems almost inevitable. Yes, this disease can define many things, but it only matters if you let it stop you from living, and that I will never do. I will never stop living because of this disease. If I were to sit back, and let cancer put me in a box, keep me from doing things, keep me from living, then the disease wins. That will not happen. I plan on beating this disease, and beating it completely. As long as I keep living, as long as I don't let cancer stop me having a life, I win. If I keep going I win, I beat this disease, no matter what happens.
Deacon John
Solemnity of the Immaculate Conception of the Blessed Virgin Mary
Dec. 8, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Another trip around the Sun

2010-11-10T19:01:00.002-05:00

I never celebrated birthdays much until the last few years. Now they have become very important to me, because I get to keep having them. I have to say I'm glad to still be on this side of the dirt. Thanks to all of you for your prayers, I can't tell you how much they mean to me. And a special thanks to my sister Margaret, whose generous gift makles this birthday, and hopefully many more birthdays, possible. Thanks, I love you.
Deacon John
Feast of St. Leo the Great
Nov. 10, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Waiting...

2010-10-15T11:00:00.002-04:00

for results from the 6 month tests done two weeks ago. I did get a call from Chicago warning me that while in the waiting room on my last visit I may have been exposed to chicken pox. But, I've shown no symptoms and we are well past the incubation period, so I suppose I will manage to avoid chicken pox. They did tell me the bone marrow biopsy results looked good, so hopefully everything else will turn out as well. Oct. the 29 will be 7 months from the transplant, and I am waiting eagerly for that date, since last time I relapsed at 7 months. I feel better about this time, I don't anticipate any problems, but getting past that date without complications will be good. Thanks for your continued prayers and support.
Deacon John
Feast of St. Therese of Avila
Oct. 15, 2010

6 Months..

2010-10-01T12:57:00.002-04:00

have passed since my allogeneic bone marrow transplant. Wednesday we were in Chicago for follow up tests, blood work, pulmonary function and bone marrow biopsy. Everything is going well, very well. The doctor has stopped all of my anti-rejection medications, and will end all but one antibiotic by the beginning of next month. I am feeling well, having survived pneumonia and food poisoning, and am poised to return to the work force. I have been cleared to return to work as of Nov. 1. I admit I was a bit apprehensive, since I relapsed after my autologous transplant at seven months, and Nov. will be seven months since this transplant. I know, one has nothing to do with the other, but still, it's a concern. But it's time to get back to my life, back to normal, or as normal as I can get. Thanks for all of your prayers, they have worked!
Deacon John
Feast of St. Therese, Child of Jesus
Oct. 1, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

Getting Better....

2010-08-23T11:56:00.002-04:00

I am just now recovering from our last trip to Chicago to see the docs there. Our appointment was on Wed. morning, so as we do customarily, we drove up on Tues., arriving at about dinner time. We have been looking for different places to eat, not wanting to necessarily stay with the same chain restaurants we could eat at in Louisville. We found a place that from its web description sounded like a good steakhouse, for those in Louisville think Fifth Quarter. When we got there it was more Ponderosa. We should have left, we didn't, and I relearned a lesson that anyone with a compromised immune system should know. STAY THE BLEEP AWAY FROM SALAD BARS!!! Through all the chemo, radiation, anti-rejection drugs, I don't think I have ever been that sick. When we went to the doctors the next morning, not having slept at all, he walked in and said you don't look so good. My first thought was , wow, you had to go to med school for that? We explained what happened, got scolded for eating "that food that just sits there and rots". He did finally check me out, a task made more difficult by my illness, and found some early signs of Graft vs. Host disease, or GVHD. He said it looked mild, and even continued to lower the dosage of my one remaining ant-rejection drug. He didn't want me back until the end of Sept. so I suppose he's not too worried. So, I guess I won't worry too much either. I'm just glad to be back on solid food!
Deacon John
Feast of St. Rose of Lima
Aug. 23, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Pneumonia...

2010-08-01T15:01:00.002-04:00

...stinks. But, I saw the doctor Friday, and she said I was doing very well considering it had only been a week. I don't need Oxygen full time any more, and I am feeling stronger. This was a bit of a setback, and it did upset me because I really was starting to feel much better. I am taking it easy, not allowing this to slow progress on recovery anymore than necessary. Hopefully within a week, maybe two, I'll be back to where I was before this episode of pneumonia. I'll admit I was a bit discouraged, but I will not stop fighting. Before I said my brother and his wife gave this whole fight a theme song, Tom Petty's "I Won't Back Down." Ive decided to add another song, "No Surrender" by Bruce Springsteen. Even the lyrics seem appropriate. Never back down, never quit, this battle can be won.
Deacon John
18th Sunday in Ordinary Time
Aug. 1, 2010
St. Peregrine Pray for Us.
Blessed John XXIII, Pray for Us.

100 Day Tests

2010-07-24T15:41:00.002-04:00

Some good news and some,not bad, but a bit odd news. I did hear from the docs in Chicago, and most of the 100 day tests results are in. Everything is looking good, going well, and right on schedule. But, somehow, in the middle of July, I managed to come down with pneumonia. I struggled into my primary care doctor's office yesterday and she immediately put me on oxygen. She almost sent me to the hospital, but instead I went home and am now tethered to an oxygen machine, taking breathing treatments and steroids. But, I do feel better, I guess I didn't realize how bad I felt until I couldn't breathe without struggling. I had a cold in late June but I thought I weas over it. Guess not! So I suppose it's time to slow down a little more, and give myself plenty of time to heal. I am considering a lottery on which body system fails next. Any takers?
Deacon John
Feast of St. Charbel Makhlouf
July 24, 2010
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

100 Days

2010-07-08T11:55:00.003-04:00

We just returned from Chicago last night after a long day of testing. The tests were done because it has been (almost) 100 days since my allergenic bone marrow transplant. Tests ran all day, a full skeletal survey, pulmonary function, and a bone marrow biopsy. There was also a visit with the Nurse Practitioner, sitting in for the doctor. Everything seems to be going well, and my recovery is moving along as well as or even better than expected. I was concerned about a rash I have developed since this could be a sign of graft vs. host disease or GVHD. But, there are no other symptoms, and everyone in Chicago agreed that this was probably not GVHD, just dermatitis. They will know more after all test results are in. I am feeling better everyday, getting stronger and able to do more. Everything seems to be on track, and hopefully Poindexter is down and out for good! One small thing though, I would not recommend a 5 hour car ride immediately following a bone marrow biopsy. OUCH!
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Thursday of the 14th Week in Ordinary Time
July 8, 2010

24 Hours...

2010-05-28T12:36:00.002-04:00

...from now we will be well on our way back to Louisville. We are getting to go home a full month sooner than we expected, and to say we are excited would be an understatement. We've already packed all we can, and all that is left is seeing the doctor today, coming back to our apartment and loading what we can in the car, and saying goodbye to this neighborhood. It's a very nice place, and for the most part we have enjoyed being here, but it's just not home. After today we only have to see the doctor twice a month. I'm feeling well, have had few problems, so as long as I'm doing well there is no compelling reason to stay. We are just grateful to God that things have gone so well. Getting the chance to continue my recovery at home is wonderful. I believe I can rest better there, and really start getting stronger. Thanks for all of your prayers.
Deacon John
Friday of the Eighth Week in Ordinary Time
May 28, 2010
St. Peregrine. Pray for Us
Blessed John XXIII Pray for Us

Homeward Bound????

2010-05-16T12:16:00.002-04:00

Last Wednesday the doctor brought up the possibility of our going home by the end of the month, a full month sooner than we thought. He was quite positive, test results were good, the central line could be removed, and if all stayed well we could go home, since he would want to see us only every two weeks. Unfortunately layer that evening the Nurse Practitioner called to say they wanted me to take magnesium by IV for two days, then regular hydration by IV for 7 days, so the central line isn't coming out yet. But, both anti-rejection drugs have been reduced, I am feeling better, although I'm still very tired. We see the doctor again tomorrow, and hopefully get the ok for heading home. I can't wait to see the Louisville skyline come into view.

Deacon John
Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

To Sleep...

2010-05-16T12:07:00.002-04:00

I don't think I have ever slept this much in my life. Most nights I am in bed by 10:00 or 10:30, and I have to force myself to get up by 8:30. By 1:00 or 2:00 in the afternoon I am struggling to stay awake. I am tired of being tired. I finally managed today to garner enough energy to read e-mail, and write this. I am amazed at how exhausting this is. I have more energy than before, but it is coming back slowly. Ah well, patience, patience, all in good time. God will teach me patience yet.

Deacon John
The Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

Olive Redux

2010-05-07T11:42:00.002-04:00

It's been a few weeks since I posted, mostly because I have simply been very tired, and not feeling well. Some of the anti-rejection drugs have played havoc with my GI system. This left me tired, dehydrated, and wondering why I did this in the first place. But my doctor ordered IV fluids to be given at home, and thanks to that and stepping down on one of the meds I feel much better. Since I needed IV fluids, I was reunited with my girlfriend Olive, or at least a close replica. Who knew they made disposable IV poles? Olive II and I got together for a couple of hours a day for the last week. The fluids helped, the cutting back on Cell-Cept helped, and I have actually been hungry! Hopefully in a few weeks I can venture away from this apartment and explore the area a bit. Olive came to my rescue again, this time as Olive II. Maybe I'll take her home with me. Thanks for your continued prayers, believe me they are felt and appreciated.
Deacon John
Friday of the 5th Week of Easter
May 7, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Back Among the...

2010-04-19T13:29:00.006-04:00

mostly living. This is the first time since the transplant back on March 29 that I have felt energetic enough to post something. Since the transplant I have been a bit sick, mostly nauseous, thanks to all of the drugs I'm taking. I have mostly been just tired, having no energy at all. I was sprung from the hospital on Friday April 9, although parole might be a better description, since I have to go in for check-ups once or twice a week. Everyone tells me I'm doing well, either on or ahead of schedule. I have to admit, it doesn't always feel that way. But today I had enough energy to read, and to write. So now it's up to me to press myself a little more each day, regain strength, and the ability to focus. Right now I'm good for about 1or 2 hours a day. I'm hoping to double that by next week. I have to admit, it feels good to write again. Thanks for your prayer, I assure you they are felt.
Deacon John
Tuesday of the Third Week of Easter
April 19, 2010

Transplant day

2010-03-29T19:47:00.003-04:00

I recieved my transplant this morning at appoximately 10:A.M. CDT. I was given enough drugs to effecively put me to sleep for a good portion of the day. My mother, sister (not the donor) and of course my wife were present. Everything seemed to go well, and as of now I feel alright, let's just see what the next few days bring. The entire procedure only took about 15 minutes, although the benedril and ativan and anti-nausea meds knocked me out for a good portion of the day. Now we just wait a few days and see how I feel then. So far this whole thing hasn't been too bad. Hopefully it will continue this way The one drawback is I will completely miss the Triduum, my absolute favorite time of year. But what better time to start a new life than Holy Week? I will for the first time pray the Evening Prayer of Holy Thursday and Good Friday, since Evening Prayer is not said by those participating in those liturgies. Unfortunately my tiny universe will preclude me from The Eucharistic Celebration on Easter Sunday. I do believe a Eucharistic Minister from a near by parish will at least bring Communion. All of this is a small price to pay, missing one Triduum for many, many more.
Deacon John
Monday of Holy Week
March 29, 2010

This Is It

2010-03-28T20:16:00.002-04:00

Tomorrow, Monday March 29, is the big day. It's finally here, transplant day. Sometime tomorrow I will be infused with stem cells donated by my sister. Again I cannot thank her enough for this gift of life. We all say we will, but few of us actually face the choice. So, I more grateful than I can ever adequately express. So, for the second time in my life, I will have my immune system effectively destroyed, and replaced by a new immune system. Well, it's an experience others share, but not manyof us. When I first started this blog, I said I wanted to talk about the spiritual dimensions of this disease, rather than the medical. I thank all of you who have prayed for me, and stood by me on this journey. As I said, I was invited to join this club, and didn't get to say no thanks. I believe that God has blessed me in many ways through this journey, led me to the right place, and the right treatment. So now I turn to God to say thank you for a memorable experience, and the many experiences yet to come.
St. Peregrine, Pray For Us
Blessed John XXIII, Pray For Us
Deacon John
Palm Sunday
March 28, 2010

A New Friend

2010-03-25T22:30:00.002-04:00

If any of my friends manage to get to Chicago while we are here, I'll have to introduce you to my new girlfriend, Olive. I know this comes as a shock to you, since my wife and I have been married for almost 36 years. But Olive is different. Olive goes everywhere I go, Olive does everything I do. Wherever I am, she's there. She doesn't say much, but we are inseparable, literally inseparable. Olive you see is my IV pole. She's tall and skinny, hence the name Olive and we are attached to one another, by tubes. She'll be my constant companion for the next month or so, as I undergo chemo, then the transplant, then IV anti-rejection drugs. I have learned that handling one of these poles is an art. Maneuvering takes practice, getting in and out of doorways is a challenge, and there are other activities not helped by Olive's presence. She is, however, giving me one great thing in return, she makes it possible for all the treatments I need to happen. So, I will gladly take her everywhere.
Deacon John
March 24, 2010
St. Peregrine, Pray for us.
Blessed John XXIII, Pray for us.

Day Three...

2010-03-24T22:05:00.002-04:00

...and counting. This is my third day in the hospital and I just finished my third round of chemo with Fludarabine. I still feel ok, just waiting for Monday and the actual transplant. I am, however, rediscovering, however, one aspect of life in the hospital. It can be and often is mind numbingly boring! My universe now consists of a small room, and a corridor about 30 yards long. I can walk down to the window at one end, and back to the double doors at the other. I'm pretty sure that nothing exists beyond those doors, even though I have seen people go through them and come back. I just know if I go through them I'll fall off the edge of the world, because there is nothing past those doors for me, not yet anyway. It's going to be about a month before I can go back through those doors. I plan on going through them and never returning. I plan on going through them as a survivor.
Deacon John
March 24, 2010
St. Peregrine, Pray for us.
Blessed John XXIII, Pray for us.

At Long, Long, Last

2010-03-22T00:24:00.002-04:00

Just over a year ago I relapsed, my multiple myeloma returned. Doctors determined that the best course of action would be an allogeneic stem cell transplant, a bone marrow transplant with the marrow coming from a donor. My youngest sister was determined to be a match and we were prepared to move forward, but we had to first convince the insurance company. It took a year, more than a year, but finally the insurance company relented. My sister has made her contribution, and now it is time. Tomorrow I enter the hospital for 6 days of chemo, a day of rest, then the long awaited transplant. I've waited for this, wanted this, need this, but I still approach this day with some trepidation. To not be afraid would be foolish. I actually feel pretty good right now, and I know after this I will feel awful, at least for a while. The trade, however is worth it. I can take feeling bad for a few months for the chance at years of remission. So tomorrow I will go in to the hospital, and in about a month I will come out, I will come out as a cancer survivor.
Deacon John
Fifth Sunday of Lent
March 21, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

OOPS

2010-03-19T20:49:00.001-04:00

Ok, so it's Carl Sandberg, not Robert Frost. Hey, high school was a long time ago.
Deacon John

Waiting for...

2010-03-19T12:04:00.002-04:00

Monday. My sister's stem cell collection was a great success yesterday, so more than enough cells were harvested for my transplant. She and my brother-in-law just left to head home to Louisville. I can never thank her enough, nothing I can do or say can ever measure up. So here we are in the City of Big Shoulders, Hog Butcher for the World, Stacker of Wheat, waiting for Monday. Ok, I'm past my Robert Frost moment. We really have nothing to do but wait. I would almost rather go into the hospital now, and get this show on the road. On Wednesday the doctor was pretty adamant that we would be here for at least 90 days after the transplant, so I guess we won't get to go home until the end of June. Since it is Friday, and Lent, I was looking around to see if any of the Catholic parishes around here have fish fries. There must be 10 parishes within 2 miles of where we are living, but it doesn't seem that any of them have fish fries. I know this isn't strictly a Louisville phenomenon, so maybe we'll just drive around to the churches and look for signs. We have to do some grocery shopping any way, and since we'll be here for a while we need to learn the neighborhood, or relearn it since we stayed here before when I had my first transplant. Things are moving, so we are headed in the right direction at last.

Deacon John
The Solemnity of St. Joseph
March 19, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us
St. Joseph, Pray for us

Here at Last

2010-03-18T09:55:00.002-04:00

Yesterday my wife and I made our return trip to Chicago. We saw the doctor and got the results of all the tests done 2 weeks ago and everything is good. No proteins present in the blood, no cancer in the bone marrow, so according to the doctor I am in complete remission. Revlimid has done the job and pushed the cancer back, so now is the time to proceed with the transplant. So now that I actually feel pretty good, we're going to make me sick. Seems foolish, but with transplant we are trading months of illness for the potential of years of remission. It's worth the shot. My sister, God love her, is at the hospital right now, undergoing apherisis, harvesting the stem cells that will be transplanted into me. I cannot say thank you to her enough, but I will keep trying. My date for going into the hospital has been set. I will goi in on Monday March 22, have six days of chemo, one day of rest, then the transplant. That makes the transplant date Monday March 29. Holy week, it seems like a good time for this to happen. getting a shot at new life during a festival of new life. I'll miss the Triduum services, but the trade is worth it. So nothing is tentative any longer, everything is set, ready to go. As John Adams sang in the musical 1776, I have crossed the Rubicon, let the bridges be burned behind me. It's time.

Deacon John
The Feast of St. Cyril of Jerusalem
Thursday March 18, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Moving Fast...

2010-03-08T21:03:00.002-05:00

I am amazed at how fast things are going on the transplant front. My sister and I went to Chicago last week for testing, getting ready to harvest her stem cells and getting the transplant process started. The tests were done last Wednesday. They called her from Chicago on Friday and want her to come back on this Friday, the 12th of March, to start Neupogin injections, to stimulate stem cell production, then harvest her cells on the 18th. Today they contacted me and set a tentative date for going into the hospital of next Monday, March 22. This time I will be on chemo for 5 days, have a day or two of rest, then have the transplant. So, if this schedule holds, the transplant will happen during Holy Week. We were able to secure the same condo we stayed in last time, well not exactly the same one, but it is in the same building, just upstairs from where we were before. Amazingly the owner remembered us. She was sorry we needed the condo, but seemed genuinely happy to have the chance to help us. We have an appointment to see the oncologist in Chicago on the 17th, St. Patrick's day, and with admission to the hospital being so close we are just going to stay. This fight has been so long, and so draining, having the transplant so close seems almost like a dream. I don't think the reality of it all has set in yet. But barring any last minute strangeness, it's happening, soon. I am more certain than ever that God has guided us to this place, the place where we have the best chance for real remission. Guess I'll have to find a good St. Patrick medal, so much is happening around his feast day. Hey, I've got enough Irish in me, at least enough Celt, I can claim him for a patron too!
Deacon John
Feast of St John of God
March 8, 2010
St. Peregrine, Pray for us.
Blessed John XXIII, Pray for us.
St. Patrick, Pray for us.

Home...for now

2010-03-04T20:28:00.002-05:00

We got back from Chicago this afternoon after spending one more day there then we had planned. Originally my sister and I were both to get a battery of tests on Wednesday. We drove up Tuesday evening, and then spent all day Wednesday. Fortunately we drove separately. Her tests were completed by 3:00 or so. On the other hand my were not only not completed, some had to be put off until today. So as my sister and her husband drove back o Louisville, we had to drive back to the hotel we had checked out of Wednesday morning and get another room. On the bright side, the tests were completed, and we were told that barring any odd results the transplant should happen within four weeks. So it really looks like I'll be spending Holy Week, the Triduum and Easter in the hospital. Hey, why not? What better way to celebrate the Resurrection than to get the gift of a new chance at life. We go back to Chicago on St. Patrick's Day to see the Dr. and get the test results. Hopefully the date for the transplant will be set then. Maybe we'll have the luck of the Irish!
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Feast of St. Casimir
March 4, 2010

On the Road Again

2010-03-02T07:49:00.002-05:00

This afternoon we head to Chicago again, thi time for full day of testing in preperation for the bone marrow transplant. My sister, who is my donor will also be there undergoing testing as well. Maybe this thing is finally happening. It's exhilarating and frightening as well. But this is what we hoped and fought and prayed for. Pray for us as we take this step toward remission.
St. Peregrine, pray for us.
Blessed John XXIII, pray for us
Deacon John
Tuesday of the Second Week of Lent
March 2, 2010

Insurance....Bleah

2010-02-28T12:46:00.002-05:00

I ran across this article by a woman who shares my disease, and a fight with her insurance company over coverage. Before I would have felt some sympathy, but gone on. Now, now I really understand her plight, the plight that too many of us share. We need a new health care system, now.
Deacon John
Second Sunday of Lent
Feb. 28, 2010

Well, They Don't Waste Time

2010-02-13T11:56:00.003-05:00

I knew there was a reason I really liked the folks at the University of Chicago. They don't waste time. On Thursday the insurance company called to say the allogeneic stem cell transplant was approved, and the information had been faxed to the University of Chicago. Friday the nurse manager from the University of Chicago called to set up an appointment with my sister and I to get things started on the transplant. So on March 3rd, we both go to see our respective doctors in Chicago. They also said they just might do any preliminary testing on me that the insurance company requires that day. My sister will have tests done that day to make sure she can donate stem cells. If all goes well, she could be back in Chicago by mid-March to begin Neupogin injections to stimulate stem cell production. After 4 injections they will harvest stem cells, then they can almost immediately transplant them into me. From something that seemed like it would never happen to something that is on the verge of happening, this transplant has definitely picked up steam. This could all occur in about a month. After all the fighting, worrying, and frustration, it almost seems unreal. Once again I want to thank my sister for this sacrifice and this gift. I want to thank all who fought with me, stood with me, and prayed with me. I am more certain than ever that God guided me to the right place in the University of Chicago. I'm ready, let's get started.
Deacon John
Feb. 13, 2010
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

One Of These Days...

2010-02-12T14:51:00.002-05:00

...finally got here. Yesterday I got the call I have been waiting for, hoping for, praying for. The insurance company finally called to say my allogeneic stem cell transplant has finally been approved. I don't know what finally turned the tide, I'm just glad that it did. Now we just have to wait to have the preliminary testing done so a date can be set for the actual transplant. Perhaps St. Julian of Norwich was right,
"All shall be well, and all shall be well, and all manner of things shall be well"
Deacon John
Feb. 12, 2010
St. Peregrine Pray for Us.
Blessed John XXIII, Pray For Us.

I Am Getting Very Tired...

2010-02-09T09:16:00.003-05:00

...of this ridiculous game. This fight has been going on too long. Not the fight against Poindexter, that is a life-long struggle. I'm tired of this fight with the insurance company. Last Tuesday I saw my oncologist for a check-up and my monthly blood work. This was the week I was off of Revlimid, my week of rest. My blood counts, this time, were not optimal. I guess that helps explain why I have been so tired. My neutrophils, first line defense cells were barely 1,000. They should be 2,000. So we put off starting the next round of Revlimid until yesterday, to give my body a bit more time to recover. All chemotherapy is cumulative, so I wasn't surprised, but it didn't strike as the best news. The Doc said it was no big deal, but I have to wonder how much longer I can stay on Revlimid. I need the transplant! But, I digress. The doctor lowered the dose of the Revlimid to 15 mg. from 25, hoping this will keep Poindexter in check and help my blood counts as well. I waited for the call from the specialty pharmacy that supplies my Revlimid. They normally call soon after the doctor reorders the drug. They didn't call Wednesday, they didn't call Thursday, so Friday I called the Doctor's office. They assured me they had faxed in my order, so I figured the pharmacy would call soon. But, by Monday they had still not called, Monday, the day I was supposed to start taking Revlimid again. So first thing yesterday, I called the doctor's office. They contacted the pharmacy and were told the pharmacy was, for whatever reason waiting on an authorization from...the insurance company. To say the least I was not pleased. I started calling all of the insurance numbers I had, without success. I finally called my employer, and asked for help. Thankfully within in two hours I heard from the pharmacy setting up delivery of the drug. So here I sit on this snowy Tuesday morning, at home instead of at work where I am sure I am needed because of the weather, listening to Bach and waiting for UPS to bring my life support. I guess now I'm not fighting just for the transplant, but for any treatment at all. Or perhaps it was just a mix up. I really don't know. I suppose I'll find out next month, when we start the eleventh cycle of Revlimid. I'm getting very, very tired of this game...

Waiting almost patiently

2010-01-31T08:08:00.003-05:00

Okay, I still haven't heard anything from the insurance company, or the doctor, and I'm doing my best to be patient. Patience is a virtue I doubt I will ever master. Yet here I am, waiting, and waiting, and waiting. I suppose going nuts and yelling and screaming would be counterproductive, so I'll wait, for now. I'm holding out so far, but my patience does have limits.
Deacon John
Fourth Sunday in Ordinary Time
Jan. 31, 2010

One of These Days

2010-01-18T11:06:00.003-05:00

OK, the Dr. in Chicago did get back to us, and the insurance company, ever-vigilant as they are, is asking for MORE information. The emphasis on more being the Doc's, not mine. I get the feeling he is getting to the point of exasperation with these people. I, too, am beginning to get very tired of this game. A game perhaps for the insurance company,but a game with deadly serious consequences for me. At this rate I have no idea when or if the transplant will ever occur. Last week I started my ninth cycle of Revlimid. My oncologist here in Louisville said I could remain on this drug for about one year. I can only hope that something happens in the next three months, before the Revlimid stops working, or that it continues working beyond one year. But there has to be a bright side to this, right? At least we got through the holidays without spending them in the hospital. At the glacial pace things are moving it will be summer before the transplant, so we'll miss winter in Chicago and my donor sister will be off work, so she won't miss any time. All I can do at this point is trust that things will work out for the best. All we can do is keep praying, and try not to be exasperated or angry. TRY.
Deacon John
Monday of the Second Week in Ordinary Time
Jan. 18, 2010

Maybe the Letters Helped

2010-01-09T15:45:00.002-05:00

Just before Christmas the Nurse Manager from the insurance company called and asked me, "When is the transplant scheduled to be done?' After getting over being stunned I said it has not been scheduled. She procedeed to inform me that my dr. in Chicago had submitted a new protocol that might be acceptable. I thought, if it only might be approved, why would anything be scheduled? She then said that in her research the new protocol may still involve a clinical trial. At this point I was wondering why she called at all. We e-mailed the tranplant team in Chicago and found they had submitted a new protocol, and we were asked to e-mail again in 2 weeks. We did e-mail again and are waiting for a reply from Chicago. Maybe something is about to happen, maybe. It does seem that everytime I write to the insurance company, I get a call from the Nurse. I still haven't gotten the documents I asked for, however. Maybe if I write again more will happen, or maybe not. Oh well, it does seem we are making progress.
Deacon John
Christmas Weekday
Jan. 9, 2010
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

2 down...

2009-12-08T13:37:00.002-05:00

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

2009-12-06T13:53:00.001-05:00

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

2009-11-06T22:14:00.003-05:00

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

2009-10-21T19:48:00.000-04:00

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...

2009-10-20T19:49:00.001-04:00

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

2009-10-03T23:32:00.002-04:00

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....

2009-09-26T09:37:00.001-04:00

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.....

2009-09-18T22:27:00.005-04:00

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...

2009-09-05T12:57:00.002-04:00

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

2009-08-29T01:22:00.002-04:00

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...

2009-08-25T19:35:00.001-04:00

...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

2009-08-23T00:30:00.003-04:00

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...

2009-08-15T01:59:00.002-04:00

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

2009-06-27T01:44:00.002-04:00

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

2009-06-21T20:08:00.001-04:00

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

2009-06-05T19:08:00.000-04:00

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

2009-05-30T14:30:00.002-04:00

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

2009-05-30T14:15:00.000-04:00

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

2009-05-24T18:41:00.000-04:00

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?

2009-05-05T20:22:00.000-04:00

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

2009-04-16T16:06:00.000-04:00

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

2009-04-10T14:13:00.000-04:00

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

2009-04-05T15:41:00.000-04:00

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

2009-04-04T11:10:00.000-04:00

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

2009-02-27T11:52:00.000-05:00

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...

2009-01-11T20:56:00.000-05:00

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

Whew

2008-12-30T21:50:00.000-05:00

Just about two weeks ago I began to experience some pain in my right shoulder, in just about the same spot as one of the tumors had been. I wasn’t sure what to think, I thought it was probably nothing, but, I didn’t want to be wrong. I had an appointment to see my oncologist in late January, but I began to think I shouldn’t wait that long. I called the oncologist’s office and apparently they didn’t think I should wait either. I went in on Dec. 22 for blood tests and had to wait until today to get the results. Everything is fine. All of my blood work was in the normal range. The proteins that are markers for this cancer were either normal or below normal. Once again I felt that great sense of relief, even though I wasn’t really worried…alright I was worried. It scared the pants off me. I didn’t want to believe I had gone through all of the chemo and the transplant just to have it fail so soon. I was getting myself ready mentally for bad news. I was preparing to fight again, but thanks be to God I don’t have to. Indeed, I don’t have to go back to the doctor until May. I understand the nature of this disease, I know that eventually the news will be bad. But God willing that can wait 20 or 30 years. I am just grateful for this day. I truly believe this, I woke up today and I am breathing. The rest is God’s grace.
Deacon John
Sixth Day in the Octave of Christmas
Dec. 30, 2008

One Year

2008-12-08T20:05:00.000-05:00

One year. Yesterday, Dec. 7, marks one year. Dec. 7, 2007, that was the day I was first diagnosed with cancer. The doctor did not have yet the specific form of cancer, tests were still being done. I really believe she only told me because I made her. I think I forced her hand by telling her I was going out of town for a week, and really needed to know something. So she told me. Those of you who have experienced this understand what I mean when I say time stopped, and suddenly the entire world changed. Nothing, absolutely nothing, could ever be the same again. Everything is experienced through the filter of this disease. Even now, one year later, after all that has happened in this year, even though I received an autologous stem cell transplant that has pushed this cancer into remission, everything is seen through the filter of cancer. I am not the person I was one year ago. Yes, I would have, hopefully, changed during this past year even without a cancer diagnosis. But how I changed, who I have become in this past year, is because of Multiple Myeloma. I am not the person I was, nor am I the person I would have been. I am who I am today because of the experiences of this year. Who is that person? I’m not always sure, but I did find out one thing. The person I have become is stronger than I thought, a survivor. I do know that this strength did not come just from within me, but from God. Strength was found in faith and in the love, prayer, and support of family, friends, and people I do not even know. My wife and I spent this past weekend at St. Meinrad Archabbey (one of my favorite places in the world) with dear and close friends, people I love more than I can say. We celebrated remission, we celebrated each other, we celebrated our friendship and love. I celebrate that thanks to their love, support and prayers, thanks to the love of my family, my sisters, my brother, their families, my mother’s prayers, and the prayers of countless others, I can today, one year later stand and say I am a survivor.

Deacon John
The Solemnity of the Immaculate Conception of the Blessed Virgin Mary
Dec. 8, 2008

Birthday

2008-11-10T20:20:00.000-05:00

Today is my birthday. Normally I would not take much note of it, indeed I had just about forgotten that today is my birthday until my wife reminded me. I guess I should take more notice, however, since it is a special birthday. No, not because of my age, but because I am having a birthday at all. Just a little over a year ago, I wasn’t so sure I would have any more days like today to celebrate. Yet here I am, a survivor, a cancer survivor. Just being able to say that brings up emotions I can’t describe. Joy, relief, some lingering fear, gratitude. Gratitude to all who prayed for me, gratitude to God for the grace granted me. I am grateful for the miracle of medicine that made this birthday possible. I am grateful beyond words to God for this second chance at life. My cancer, Poindexter, along with my hair, is in complete remission. Only the hair is coming back!
Deacon John
The Feast of St. Leo the Great
Nov. 10, 2008
St. Peregrine, Pray for us

Continuing the Journey

2008-10-25T11:53:00.000-04:00

To quote the prophet Jerry Garcia, “what a long, strange trip it’s been.” I visited the oncologist on Thursday to get the results of the tests done as follow-up to the autologous stem cell transplant. The level of the immunoglobulins in my blood and urine, the protein markers that indicate the presence of the cancer, were all either normal or low. There was also no indication of the cancer in my bone marrow. So all that has transpired over the past year, all of the tests, the chemotherapy, the transplant itself, have done what they were intended to do. As my doctor said, this cancer, in the technical term used, is in complete remission. I can’t describe how I felt when I heard those words. Though I was always confident this would happen, the fear that things would go wrong was always there. I felt a combination of joy and relief, and gratitude to God. The new goal is to avoid remission within the first six months. The oncologist said this would be, I couldn’t keep up with how many times he said bad. Obviously relapse this soon would lead to a poor prognosis. The longer I go without relapsing, the better the chances of fighting off the cancer are. So now I will see the oncologist every three months for tests, blood and urine, to check for those protein markers, to make sure they remain low or normal. The journey is not over, but so far the journey has been successful. The only other problem I face now is the loss of the antibodies that had been in my immune system. The oncologist said that I am like a baby, and I will catch everything going around until I develop new antibodies. I also must be immunized again. Starting next Feb. I must get all of the vaccinations we received as children, polio, measles, etc. That’s ok, like the loss of my hair it’s a small price to pay for remission. Thanks be to God for this outcome.
Deacon John
Oct. 25, 2008
St. Peregrine, Pray for Us

Still Learning

2008-10-22T13:27:00.000-04:00

Since coming home I have felt pretty good, and I think I began to believe I was invincible. I am learning, however that there is a difference between recovered and recovering. I went back to work last week, and despite being urged to work only part time, I stubbornly worked full days. On Sunday of this week I served at Mass in my parish, worked a half day at my job, where I led a prayer service, then that evening conducted a meeting of deacons in the region I represent on the Archdiocesan Deacon Council. I must admit that by Sunday night I was tired. Late that evening I got sick, really sick. I began running a low grade temperature, felt totally drained, and Monday morning simply could not get out of bed. It finally occurred to me that maybe I was doing a little too much. OK, maybe a lot too much. I do believe God sent me a message. No matter how good I may feel, I am not completely recovered. That will take time, and I must allow for that time. After all that has happened, I guess I still need to learn patience. Maybe one of these days the message will finally sink in.
Deacon John
Oct. 22, 2008
St. Peregrine, Pray for us

The End of the Beginning

2008-10-17T13:56:00.000-04:00

One year ago this month, in Oct. of 2007, I noticed a growth at the end of my sternum, right in the middle of my chest. At first it was small, so I thought I could simply wait until my next physical to have it checked out. Probably just a cyst, right? Before the month ended this anomalous spot grew exponentially, reaching the size of a baseball. Obviously this could not wait, so I went to the doctor and thus began a series of tests that eventually led to a diagnosis. On Dec. 7 of 2007 I went to my doctor and she finally told me that the growth was indeed cancer. She sent me to an oncologist who diagnosed this cancer as Multiple Myeloma, a cancer of the plasma cells in the blood. I was told that this disease is incurable, but treatable. The course of treatment prescribed was an autologous stem cell transplant, a procedure that would use stem cells from my own blood to replace my immune system after course of chemotherapy destroyed the cancer cells and everything else as well. This treatment required travel, so my wife and I chose to have this done in Chicago, at the University Of Chicago Medical Center, which specializes in treating Multiple Myeloma. After several rounds of chemotherapy here in Louisville, and after a few setbacks, the transplant finally occurred on Aug. 25 this year. I spent three weeks in the hospital, sometimes quite sick, but most often not feeling too bad. After being released from the hospital we spent two more weeks in Chicago until we were released to return to Louisville, where final follow up tests have been conducted. The last blood test in Chicago showed no signs of the proteins produced when the cancer is present. Tests done here in Louisville have produced the same result. One of the tests done just this past Tuesday was another bone marrow biopsy. The last one, done before the transplant, showed no sign of the cancer in my bone marrow. My oncologist said that barring any strange result in this last test, it is fair to say that this cancer is in remission. I firmly believe that God led me to the right doctors, the right hospital, and the right treatment. I am thankful to our gracious God for this outcome, but I also know that remission does not mean cured. There is no cure. But there was, and is, treatment and hope. I know this journey is not over, that this is in reality the beginning of a new journey, a new life, a life for which I am grateful. I understand how great a gift this is. May God continue to guide me as I use this great gift, and may I be smart enough to listen.
Deacon John
Oct 17, 2008
St. Peregrine. Pray for us

Home at Last

2008-10-01T11:01:00.002-04:00

We finally got to come home to Louisville last Wednesday, Sept. 24. I probably should have written sooner, but I have spent the past week just basking in the joy of being home. There are more tests to be done here in Louisville, but the last blood tests done in Chicago were quite encouraging. If all the other tests are as encouraging, then it may be that the transplant has worked and the cancer is in remission. I understand that although this has been a long journey, it is not yet complete. I do believe that God has been guiding me on this journey, leading me to the best place for treatment. I do understand that although remission may have been achieved, the threat of this cancer has not gone away. I will live with this threat for the rest of my life. I can live with this because I know that God is with me on this journey and in this struggle. My trust is and must always be in God. Only then can I make this journey, without (much) fear. Thank you for your prayers, they have been felt.
Deacon John
Feast of St. Theresa of the Child Jesus, Doctor of the Church
Oct. 1, 2009

Light Show

2008-10-01T10:57:00.001-04:00

I am not, nor have I ever tried to be, a poet. I have never written poetry before. This started to come to me in the hospital, while I was still wondering about the efficacy of the transplant. I finally finished it and wrote it down a couple of weeks ago, and I just now got the nerve to post it for the world to see.

Light Show
Dark hospital bed,
alone, lying cold,
wondering if I
will ever grow old

enough to know why
this is happening
to me

Hard hospital bed,
awake, lying cold
no revealation;
then realization
that I will grow old

enough when I grow
into the warm, soft
Light of the One who
made me

Deacon John
Feast of the Exaltation of the Cross
2009

Free at last, Free at last

2008-09-19T16:19:00.000-04:00

Saturday, after three very long weeks, I was finally released from the hospital. The autologous stem cell transplant was performed on Aug. 25. Despite some minor setbacks things generally went quite well. I feel good, and I fell even better now that I am out of the hospital. I saw the doctor again on Wednesday and was told that after some more blood tests next week I can go home to Louisville. My blood counts look good, and all further testing can be done at home. All I can say to that is Alleluia!!! God is good indeed. I know this journey is not over, in many ways it is just beginning. I am more convinced than ever that our gracious God is with me every step of the way.
Deacon John
Sept. 19, 2008
St. Peregrine, Pray for us

It's Time

2008-08-21T21:31:00.000-04:00

As I write this I am back in Chicago. Tomorrow morning the hospital will call, telling me they are ready for me to come in and begin the chemo in preparation for the autologous stem cell transplant. This treatment is the best hope for putting this cancer into remission. It's been a long journey to this point, since being diagnosed with Multiple Myeloma in Dec. I have to admit, even knowing that this is the best treatment available, and that I am receiving this treatment in one of the best places possible, it is still a frightening prospect. I am prepared, however, ready to do what is necessary to get this as behind me as possible. My trust is that God has led me to this point, and I keep my faith in God, believing that I am indeed in God's hands. This may be the last update for a while, I don't know how much access I will have to a computer after entering the hospital tomorrow, or if I will bewell enough to post anything. I will get back on here as soon as I can. Thank you for you prayers, know that you are in my prayers as well.
St. Peregrine, Pray for us.
Deacon John
Aug. 21, 2008

Down the Home Stretch

2008-08-16T12:17:00.000-04:00

As Dorothy said in the Wizard of Oz, there's no place like home. Stem cells were harvested on Wed. Aug. 13th. Thankfully enough were collected that I don't have to go through that experience again. Since the transplant can't happen right away, we were told we could go home. It is good to be home even if it is only for a few days. This is a week of rest, to give my body a break before continuing with the transplant process. The schedule has been finalized. I will be admitted to the hospital on Friday Aug. 22. The super chemo will be administered on that day and Saturday the 23rd. Sunday, appropriately, will be a day of rest. The transplant, the re-infusion of the collected stem cells, will occur on Monday Aug. 25th. I know I will be in the hospital for at least 3 weeks. I do not know how much of that time will be in isolation. It is good just to know precisely what will happen next. My job this week is to prepare myself mentally and spiritually for the transplant and the recovery period to follow. This will be a week of prayer and contemplation, working to be prepared for what will be a difficult time. No matter the difficulty, this must happen if remission is to be achieved. So this week I pray, read, and get ready, reminding myself that even in these difficult times God is with me. We will leave to return to Chicago on Thursday the 21st.
St. Peregrine, Pray for Us
Deacon John
Saturday Aug 16, 2008

Getting Started

2008-08-08T12:46:00.000-04:00

Today I received the first injections of neupogen, a drug designed to stimulate stem cell production. The only draw back to neupogen is that the main side affect is severe bone pain. So if we are going to see any of Chicago, I guess we shoud do it today or over the weekend, before the pain starts. I will receive this drug twice a day for 5 days. The pain should not begin, if it does, until late in the process. So I should be ok until Monday or Tuesday. On Wednesday the harvesting of the stem cells should begin. After a small fight with the insurance company about covering these injections, things were worked out so the transplant process would not be delayed. Thanks to God for answering our prayers that this insurance difficulty be resolved quickly. So, we are well on our way and will hopefully have the transplant as scheduled on Aug. 22. We are relying on God now to guide through this process. So far we have done well following God's lead. All we need now is the grace to continue to do so.
Deacon John
The Feast of St. Dominic
Aug. 8, 2008
St. Peregrine and St. Dominic,
Pray for us

Getting on With It

2008-07-31T20:31:00.000-04:00

The date for getting on with the transplant has been set, and I am looking forward to it, but it is frightening as well. For some strange reason, the nearness of this procedure makes everything seem more real. Yes, I’ve been through several rounds of chemo, thought a lot about what is happening, cried, screamed, gotten angry, and prayed. Yet this event, this transplant, makes everything seem, I don’t know, like it is really happening to me. This is serious, I could die, not from the procedure, but from this disease, cancer. Cancer is always something that happens to someone else. Maybe this transplant is making it really sink in, I am that someone else. This is really happening to ME. Why, I don’t know. Am I happy about it? Absolutely not. Can I change it? Absolutely not. What I can do is accept where I am, what is happening, and pray that God can use this for good. All a lot easier said than done. Especially when you realize that you are the someone else.
St. Peregrine, Pray for us
Deacon John
Feast of St. Ignatius of Loyola
July 31, 2008

At Long Awaited Last

2008-07-24T21:16:00.000-04:00

I haven't reported anything for a while, mainly because there just wasn't anything to report. Well now there is. At long last the transplant has been scheduled. We are due to be in Chicago on Aug. 8 to begin the injections to promote stem cell growth. The stem cells will be harvested between Aug. 13 and 15, with the actual transplant scheduled for Aug. 22. In a slight change of plans, they asked that we remain in Chicago for the entire process, so we will be living in Chicago until about mid Sept. All we have to do now is find a place to live. All the prayers are about to pay off. I do realize that this is not the end of this journey, but the beginning. There is a long road ahead, but with your continued prayers I am sure the journey will be easier. I am slowly learning more and more to place my trust in God, and to allow God to guide this journey.
Thanks for your prayers and support.

Deacon John
July 24, 2008
St. Peregrine, Pray for Us.

Getting Closer (maybe)

2008-06-25T21:59:00.000-04:00

On Tuesday I had my second to (probably, hopefully) last round of chemo prior to preparation for the transplant. We also had an appointment with the oncologist. He agreed that with the disappearance of Poindexter the tumor there shouldn’t be any need for more chemo before moving ahead with the autologous stem cell transplant. Later on Tuesday I received a call from the transplant coordinator in Chicago. We spoke about what is happening, Poindexter’s disappearance and failure to return, the probability that three rounds of Velcade is enough, and moving forward with the transplant. She said that she was going into a meeting in half an hour and that my case would be discussed. The only drawback is the need to repeat all of the qualifying testing that had been done previously in May. She said she would fax a list of those tests to my oncologist. I am going to follow up and make sure they have hat list and get the tests scheduled by Monday. If they don’t get the list, I plan on having it faxed to me, and I will hand carry it in to the doctor on Friday when I go for my (probably, hopefully) last round of chemo prior to transplant preparation. Even with this haste, it still looks like the end of July is the best case scenario for getting started. But, we may be getting closer!!As I have said before, I’ve never looked so forward to feeling bad, but if remission is the result, I am ready to feel as bad as necessary. I thank God for helping me through this, I know God is leading this journey, at least when I am smart enough to get out of the way.
Deacon John
June 25, 2008
St. Peregrine, Pray for Us

Midpoint

2008-06-04T21:14:00.000-04:00

Yesterday was day 8 of the second 21 day cycle of Velcade therapy. This is the halfway point of the three cycles that are planned. So far, Velcade seems to be doing the job. Poindexter the tumor has completely disappeared. Even during the ten day respite of the first cycle, Poindexter has not shown any signs of growing back. Maybe, just maybe, the transplant will really happen once the three rounds of Chemo with Velcade are complete. The third cycle, including the ten day respite, should end on July 3. Seems appropriate, maybe i can declare my near independence from MM (OK, just near remission) on July 4. God and the transplant team willing, I hope we can start by mid-July. This is, of course, just the beginning of this journey, not the end. But it is a beginning. A beginning that with God's help will have a good end, twenty or thirty years from now!!
Deacon John
June 4, 2008
St. Peregrine,
Pray for us

Cycle 2

2008-05-26T13:48:00.000-04:00

Tomorrow I start the second cycle of chemo with Velcade. There really weren’t any bad side effects, just a bit of fatigue, so even though the drug is administered more often, things have gone fairly well. I am not getting overly optimistic yet, but after the first cycle, including the 10 day respite, Poindexter the tumor is gone. For the first time in almost a year there is no lump sitting in the middle of my chest. I’m really not quite sure how to react. Poindexter and the new spot I found have both vanished. It would seem that Velcade is doing what it is supposed to. So, ok, maybe delaying the transplant is working out for the best. If Poindexter stays gone through the next two cycles, and perhaps a week or two after that, the transplant process should begin. So maybe by mid-July we can get started getting this thing into remission. I know the road ahead is still going to be rough, and the transplant itself is going to be a difficult time, but I can’t say I have ever looked forward more to feeling lousy. It’s seems to be the price for remission, and it’s a price I am ready and willing to pay. I was having a hard time with patience, but once again God has led me where I need to be. Maybe one of these days I'll really learn to trust!
Deacon John
The Feast of St. Phillip Neri
May 26, 2008
St. Peregrine, pray for us

Chemo Round 5… or … 1A

2008-05-07T21:57:00.000-04:00

I started my new chemo sessions yesterday. The drugs have changed for this round, so perhaps this should be 1A as opposed to 5. The drugs being used this time are Velcade and Decadron. The chemo sessions will be more intensive this time around. Before the drugs were administered once every 28 days. These drugs will be administered in a 21 day cycle, with me receiving the drugs on days 1,4,8,and 11, followed by a ten day break. This constitutes the 21 day cycle. It’s only been one day, so no ill effects yet. The major side affect listed is fatigue, so I think I can live with that. Velcade, from all accounts is quite effective and is a good set-up for the autologous stem cell transplant. The current plan is to complete 3 cycles. If I counted correctly the third cycle should end on July 3. I don’t know how long after that the transplant team will want to wait. Not long I hope. I am becoming more resigned to following this path, I really just want to get on with the transplant and hopefully full remission. I just keep praying, placing my hope and trust in God who is always good. I am certain that all of this is happening for a reason, for some purpose that I just don’t know yet. If my situation helps someone else, or leads me to a better understanding of trust in God, or both, than it is all worth it. Someone asked me if I felt like Job, with all of the medical concerns I’ve developed over the past few years. I thought and decided that, no, I felt sort of like Paul in his statement in Philippians 1:22-25.
If I go on living in the flesh, that means fruitful labor for me. And I do not know which I shall choose. I am caught between the two. I long to depart this life and be with Christ, (for) that is far better. Yet that I remain (in) the flesh is more necessary for your benefit. And this I know with confidence, that I shall remain and continue in the service of all of you for your progress and joy in the faith,
I don’t really want to leave the body just yet, there is still so much I want to accomplish. Yet being with Christ ain’t a bad thing either. I figure that no matter what happens, I’m a winner either way.

Deacon John
Wednesday in the 7th Week of Easter
May 7, 2008

Now That I've Had Some Time

2008-05-04T20:36:00.000-04:00

Since being told last Thursday that the autologous stem cell trans plant would have to be delayed for a few months, I’ve had a little time to decompress and get used to the idea. I don’t know quite how to describe the way I felt. OK, this past weekend in my hometown of Louisville, the Kentucky Derby was run. What would it be like if the horses were saddled, ready to go, the jockeys mentally prepared to ride, when suddenly someone comes in and says the race is being delayed for a couple of months. It would be a huge letdown. That describes how I felt when I was told the transplant was being delayed. I was not pleased at the prospect of 2 or 3 more months of chemo rather than the transplant. The transplant, from what research I have done, seems to be the best way to reach remission. The drugs available for treatment of Multiple Myeloma don’t seem to be nearly as effective in bringing about remission. One drug mentioned by the doctor in Chicago was Velcade. Velcade does seem to be a good treatment for MM, and it does not appear to interfere with the potential for an autologous transplant following Velcade therapy. There are some potentially nasty side affects, but they don’t appear to be any worse than what I have faced previously. So, I’m calling my doctor here in Louisville, again, tomorrow. I want to get this thing started. I’ve never been the most patient person, and this is really testing my limits. So I will do the only thing I can, turn to God, pray for patience, and the grace and strength to get through this phase of the treatment.

Deacon John
The Solemnity of the Ascension of the Lord
May 4, 2008
St. Peregrine, pray for us.

Still Waiting

2008-05-01T20:01:00.000-04:00

All of the tests required by the insurance company were completed last Monday. This past Tues. April 29, the Oncologist here in Louisville went over the results of the tests with us. Everything was good. The bone marrow biopsy indicated that the cancer has not metastasized and is not wide spread throughout the marrow. The blood tests were good, even the pulmonary function tests were good, despite the difficulty I had breathing due to spring allergies. All of this information was forwarded to the University of Chicago Hospital, who will send it to the insurance company. We even completed a psycho-social evaluation by phone, and I think we passed, somehow. I wanted to use my favorite line from the old television series Night Court, quoting the judge’s father who had been in a psychiatric hospital and say, “but I’m feeling much better now,” but I decided the interviewer would fail to see the humor. Oh, well. We spoke to the Nurse Administrator in Chicago and she said it could be two weeks.

During the time since my last chemo, Poindexter the Tumor has grown back to his original size, if not larger. I also found another small knot in my chest. We called the transplant team in Chicago in case these were important developments. Apparently they are. I just spoke with Dr. Cohen in Chicago. This call came in as I was typing this. He is going to recommend 2 or 3 more rounds of chemo before having the transplant. This will push the transplant back into August or September. To say that I am disappointed would be an understatement. But Dr. Cohen said the disease needs to be under control before the transplant in order to give the transplant the best chance to be successful. Ah well, another chance to learn patience. God has led us so far, and my trust hasn’t failed, yet. It is, however, getting difficult. Keep praying!

Deacon John
Feast of St. Joseph the Worker and the Feast of St. Peregrine
May 1, 2008
St. Peregrine
Pray for us.

Testing 1,2,3, testing

2008-04-19T15:02:00.000-04:00

On Thursday April 17 I finally began the tests necessary to qualify me for the autologous stem cell transplant. These tests are primarily for the insurance company, to give them reasonable assurance that I won’t drop dead in the middle of the transplant procedure. We started with a series of blood tests, for which blood had to be drawn, of course. I lost count at somewhere around 9 test tubes of blood. I did ask that they just leave me enough to get by. Next was a bone marrow biopsy, taken from my hip. Not the most pleasant experience, but at least it didn’t last long. On Monday I have to go to the hospital for the remaining tests, a pulmonary function test, a skeletal scan, and a MUGA, some sort of heart test involving dye and more needles. Once the results of these tests are in they will be forwarded to the University of Chicago Hospital and the insurance company. The folks in Chicago have assured me that my insurance company, unlike some others, will respond very quickly. Approval shouldn’t be a problem, so there is still a chance the transplant process can start by the end of April. I certainly hope so, I long to have Poindexter driven into remission and get some semblance of normalcy back into my life. I know the recovery process is slow, but the sooner we start the sooner I get there. I just keep praying for the grace to face this challenge, and the patience to wait for everything to happen. If I learn patience, this whole thing may have been worth it! Keep praying, it definitely helps.
Peace
Deacon John
April 19, 2008
St. Peregrine, pray for us

Learning Patience

2008-03-24T21:30:00.001-04:00

I know that this disease is going to take things from me, that it will keep me from doing some things, but there are days I really hate this disease. I had my fourth round of chemo on March 12, and I realized that there was a good chance that the affects of the treatment would be with me during Holy Week. I took off work last Wednesday and Thursday, with Friday as a normal day off I thought I could get plenty of rest and be able to participate in the liturgy through the Triduum. The days of the Triduum are without a doubt my favorite days of the year. I look forward to these days, especially the Easter Vigil. I almost made it. Thursday and Friday I felt pretty good, and was able to take part in the liturgy. I even preached on Good Friday. Saturday I slept in a bit, and felt rested and ready for the Vigil. I particularly wanted to be there when the folks my RCIA class came into the Church. Saturday afternoon, out of the blue, I got sick, really sick. I was, to say the least, distraught. I was also determined that I would not miss this Vigil. Over my wife’s unspoken but obvious objections we went to church to celebrate the Vigil. I was determined to serve in my role as deacon for the Vigil celebration. Sitting in the sacristy, however, it became more and more obvious to me and to those around me that I was not going to be able to function as deacon in this celebration. Practically in tears I admitted that I could not go out on the altar (even though I tried to convince the priest and the other deacon that if I passed out they could just roll me under a pew and keep going) and had to sit this one out. It was finally agreed that I would vest, but stay in the sacristy until time for the baptisms and confirmations for the RCIA group, after which I would return to the sacristy. Afterward my wife told me was proud of me. I asked why, and she said she was proud because I did the right thing, I didn’t stubbornly bull ahead and make myself worse. She was, of course, right. Had I forced the issue and tried to fill my role as deacon I would have just been in the way. The fact that it was so obvious that I was sick would have been a distraction. I missed being able to fill my role, but perhaps God is using this to help me learn patience, patience with this disease, patience with my limitations, patience with myself. This is not the first thing this illness has taken from me, and it definitely won’t be the last, but with the help of God I am slowly learning to live in these new limitations. Maybe I am finally learning to be a patient patient.

Deacon John
Monday in the Octave of Easter
March 24, 2008

Thoughts on Chemo Day - Round 4

2008-03-13T20:04:00.000-04:00

Yesterday, March 12, was the fourth, and hopefully last, round of chemo. The transplant team in Chicago seems to think that four rounds are enough, indeed, is the norm for this disease. The Nurse Practioner gave us some hope when she said the doctors tend to go along with what the Transplant team wants. So, with any luck, the transplant process can start by the end of April.

At chemo I met a nun, a bit older, who noticed one of the bags I had that identified me as a deacon. We have had some pleasant conversations about the Church here in the South End of Louisville. She volunteers there providing a healing touch ministry. Yesterday I finally availed myself of that service and found it quite good. It was very relaxing, and I felt better after that than I have for a while. If you ever have a chance to experience this, I suggest it.

Next Wednesday we see our regular Oncologist, Dr. Glisson. Hopefully, he will tell us that we have completed the needed rounds of chemo and that we can move on to the transplant process, hopefully. Again, I have learned in all of this not to count on very much, and to leave with more questions than answers. No matter what happens, I still feel that God is guiding us on this journey. I pray, and remain open to what is coming. Not much of this is in my control, so I rely on God. So far we haven’t been steered wrong. I believe I’ll only go wrong if I get stubborn and think I can do this on my own. So I pray that I find the grace to let God lead me. Thank you all for your prayers, they are a blessing and a great help.

Peace
Deacon John
March 13, 2008
St. Perergrine,
Pray for us.

Chicago, Chicago

2008-03-02T20:39:00.001-05:00

Friday, Feb. 29th, we returned from our whirlwind trip to Chicago, after meeting with doctors at the University of Chicago Hospital. It was the end of an eventful week, one that began with sadness when the pastor of our parish died on Monday after suffering a coronary on Sunday night. Wednesday was spent at the funeral home as the other deacon in our parish and I led the Vigil prayers for our pastor. The next morning we left for Chicago and the University of Chicago Hospital. We managed to get from Midway Airport to the hospital, an adventure in itself, where we met with the doctors who work with myeloma patients. I was poked and prodded and answered a zillion questions. The doctors all but said I was a good candidate for an autologous stem cell transplant. They also said that four cycles of chemo could be enough, and that they were going to speak to my oncologist here in Louisville to see if he really wants six cycles. I will have to undergo some further testing to determine my eligibility for the transplant procedure, but that testing can be done in Louisville. If all goes well, and four cycles of chemo are enough, the procedure could begin as soon as the end of April. If it does the entire process could be completed by mid-June. Most of the follow-up testing can also be done here, making the process much easier. With recovery time I could be back to at least semi-normal by late fall. I am greatly encouraged by this, and I believe that God has guided us to the right place. The doctors and nurses could not have been more friendly or more open. They willingly answered all of our questions and encouraged us to call should we think of any more. I am more convinced than ever that this is the place where God has led us. I’m actually looking forward to getting started with this so I can get to remission and begin putting this disease behind me. As for the city of Chicago itself, obviously we didn’t see much, but I never realized that driving is a competitive sport!

St. Peregrine,
Pray for us
Deacon John
March 2, 2008

The Next Step...

2008-02-18T19:59:00.000-05:00

A new phase of my treatment is about to begin. On Thursday Feb. 28 we have an appointment with Dr. Todd Zimmerman, head of Myeloma treatment at the University of Chicago Hospital. This is for evaluation, hopefully to determine what steps to take in treating this disease. Dr. Zimmerman is by all accounts one of the leaders in research in the field of Multiple Myeloma. Perhaps I’m reading too much into it, but I find it quite encouraging to be seen by someone like Dr. Zimmerman. I do believe God is guiding this journey, leading us to the best possible place for treatment, long-term remission, and hopefully, one day, a cure. Keep praying!!

Deacon John
Feb. 18, 2008

Decision

2008-02-15T20:32:00.000-05:00

After the last visit to the Oncologist, we were faced with the necessity of deciding where to go to continue treatment. Some options were given to us, but everything was left in our hands. After much research, and thanks to those of you who assisted in that research, after much soul-searching, and after much prayer, we have decided on the University Of Chicago Hospital. We found that they have a center dedicated to multiple myeloma, and that the head of the center is on the board of the Multiple Myeloma Research Foundation. There is also a strong connection to the Dana Farber Institute in Boston and their Multiple Myeloma Research center. Dr. Zimmerman at Chicago apparently has strong ties to Dr. Anderson in Boston, who is one of the leading Myeloma researchers in the world. When originally faced with this decision we did feel overwhelmed, not knowing where to turn. Then we made the obvious turn, and asked for help, help from friends and help from God. I believe that God has led us to this place, that this is the place best suited to treat this disease. The procedure used in this treatment is an autologous transplant, using my own stem cells. This is apparently the current standard of treatment for Multiple Myeloma. So, for the moment, there is no need for a bone marrow donor, at least not yet. The possibility of that need could rise again. One thing I may need is blood donors, so keep that in mind, I would like a blood supply that I can trust! How fast all of this will happen is still unknown. My insurance company is talking to the hospital, hopefully working out the details. I do know that this procedure will not take as long as a transplant from an outside donor. I will have to go there for two days for intensive chemotherapy, then return home for two weeks and inject my self with a hormone to increase stem cell production. I would then return to Chicago and have the stem cells harvested. I would then return home while the stem cells are cleaned for re-implantation. Two weeks later I go back to Chicago, have another round of intensive chemo to kill off all remaining cancer cells, then have the stem cells implanted to re-grow bone marrow. This should lead to remission. It’s a big step into a dark unknown, but I feel more hopeful now than I have for a while. I believe God has led me here, and I trust this is the right place, the right team, and the right time.

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught how to fly.
Patrick Overton

St. Peregrine,
Pray for us
Deacon John
Feb. 15, 2008

Chemo Day

2008-02-15T20:28:00.000-05:00

Wednesday Feb. 13 was chemo day, the third cycle in what I thought was a cycle of four. When I was examined by the ARNP prior to starting the session she said “well this puts you half way through.” I immediately asked what that meant. The Oncologist, after my last visit charted that there will be six cycles of chemo. All along we had been told there would be four cycles. The Nurse-Practitioner was unsure why the change was there, or if it even was a change. I must admit I was confused, and not pleased. I had felt rushed to arrange the next step of the treatment, and now that may get put off for two more months! It could be July or August before the transplant occurs. If this is the way it needs to be that is fine, but I sure wish someone had told me. I was mentally, emotionally, and spiritually prepared for one thing, and I feel now like I have to start all over again. So, I pray, and wait, and hope and trust that all of these folks know what is best. This round of chemo took much longer, 61/2 hours, due to the addition of a new drug, Aredia, a drug designed to strengthen bones. Hopefully this will keep me from breaking anything by keeping my bones healthy. My plan for the moment is to keep praying, and trusting that God is leading me on the right path. All I can do is step into the dark and have faith. Keep praying!!

St. Peregrine, pray for us.
Deacon John
Feb. 15, 2008

Pondering Poindexter

2008-02-04T20:02:00.000-05:00

When I was first diagnosed with Multiple Myeloma, the one thing I really wanted to do was make the tumor on my chest go away. It was big, it was ugly, it was growing, and I just wanted it gone. I knew that wouldn’t make things better, but I still wanted it to go. Indeed, that tumor is what I first named Poindexter, a name that has come to encompass the entire disease. I was thrilled when on my first visit to the oncologist he looked at Poindexter and said, “let’s kill that thing.” After my first round of chemo Poindexter did shrink, nearly going away completely. I was thrilled, at least until it started coming back. The second chemo has once again made the tumor shrink, and this time it seems to be coming back more slowly. I was again glad to see it go, but then, after researching Multiple Myeloma a bit, I began to wonder if Poindexter, the tumor, hadn’t done me a favor. This disease could have smoldered undetected for years, doing who knows what kind of damage. This may have gone undetected until, well until it may have been too late. As much as I hate to admit it, Poindexter may have done me a favor. This tumor may indeed have been God’s grace, alerting me to the fact that something was drastically wrong. If not for Poindexter, who knows. I do thank God that I found that I have this disease in time to be treated. I suppose, maybe, in some way, I owe Poindexter a debt of gratitude, maybe. But I still want him GONE.

St Peregrine,
Pray for us
Deacon John
Feb. 4, 2008

Overwhelmed

2008-01-25T22:22:00.000-05:00

I have to tell you, after seeing the Oncologist Tuesday we are now officially overwhelmed. He spoke to us for over an hour about the next phase of treatment and the importance of finding the right place to perform the bone marrow transplant. The overwhelming part is that we have to figure out where that is! He had some guidance, but not nearly enough. He basically said that I was in the driver's seat, that we should contact 4 places, interview at least 2, and then decide. The primary consideration is what any of these facilities is doing in the field of Multiple Myeloma Research. Options, covered by insurance, range from Boston to Seattle. We did actually speak to someone at the Dana Farber Institute in Boston, a leader in myeloma research. They were interested in me for potential entrance into clinical trials in the future, but said that for now I should get the transplant where ever I felt comfortable. We did find a connection between the University of Chicago and Dana Farber, so for the moment they appear to be in the lead, if I can just get them to return my phone calls!! Our prayer now is that God guide us to the right place, where ever that may be.
Deacon John
The Feast of the Conversion of Paul
Jan. 25, 2008

A Philippic on Health Care and Insurance

2008-01-21T12:16:00.000-05:00

A philippic may seem a bit strong, probably very unminister like, and possibly even Unchristian, but I don’t believe so. It does describe how I feel. After all, I am a preacher, and I propose to preach.
One of the unfortunate inevitabilities of facing a life-threatening disease is figuring out how all of this vastly expensive treatment is going to get paid for. I begrudge no one their due when it comes to earning a living, after all, I want the best and brightest trying to find cures. Research is expensive, equipment is expensive, testing is expensive, all of these things affect the cost of care. I understand that, but still, how is the average person to get proper care if cost can be a barrier? In my own situation I was worried at first that my insurance may be woefully inadequate. Fortunately, the company I work for carries a special rider to cover costs, at least part of the costs, involved in my treatment. Beyond that we do have resources. We are certainly not wealthy, but we will, over time, be able to handle the cost of care. We are lucky. This whole process has awakened me to the plight of those without resources, without insurance, or with inadequate insurance. What are they to do? What about the very poor, whose access to any health care is limited by definition? Do we simply say to these people what Ebenezer Scrooge said of the poor in A Christmas Carol, “let them die and decrease the surplus population.” How is it possible that in the United States of America in the twenty-first century people literally die for lack of health care? This happens because in this country we see health care incorrectly. Our system views health care as a commodity, just another trade good to be bought and sold. With this view, it is easy to see how those without resources are left out. If it becomes just a matter of all the care you can afford, people will be left out, people will sicken. People will die, unnecessarily. This view of health care is sin, plain and simple. It is sin that people who need help cannot get it. Too many barriers are erected by the health care system, barriers that either push people away or seemed designed to intimidate them. Stacks of forms in language that makes sense to no one, probably not even the author of the form, how can one not be intimidated. No one, facing what is undoubtedly the worst time of their life, should have to deal with this. My sisters and brothers, this is sin. It’s not like sin, it is sin. The only way to end this sin is to change how we understand health care. Health care is not a commodity, it is a right. No one, in this day and age, should ever be unable to obtain needed care. As a nation we spend trillions of dollars on all manner of projects, yet caring for the health of our people languishes near the bottom. Propose a way to pay for all, and be prepared to be accused of destroying the system. Perhaps the system needs to be destroyed, it certainly must change. We cannot permit this sin to continue. Health care is a RIGHT. Thus ends the philippic.
Deacon John
Jan. 20, 2008

Chemo, Dentistry, and Providence

2008-01-18T22:05:00.000-05:00

I had my second round of chemo Wednesday, and amazingly it didn’t take long at all. I was finished in just two and a half hours. It could be because they were planning on adding as new drug to my regimen, but weren’t able to add it until next time. The drug they want to add is Aredia, a drug meant to strengthen bones. Multiple Myeloma can weaken bones, so this is a preventative measure. They couldn’t add it yet, though, because there is a nasty potential side affect, Osteonecrosis of the Jaw, or ONJ. This is where dentistry comes in. It is important that you be in good oral health to offset this side affect, and that you have had no teeth extracted in the last 90 days. This is where Providence enters the picture. Back in October I had a tooth that was breaking apart and starting to hurt. Being both stubborn and cheap I ignored it, figuring that sooner or later it would stop on its own. One day, however, I thought to myself, why suffer, you’re not poor, you can afford to go to the dentist. So I broke down and saw the dentist for the first time in more years than I care to reveal. The dentist fixed my teeth, extracted two broken ones, the last extraction having occurred less than 90 days ago. All of this took place before I knew that Poindexter was there, or at least before I knew what Poindexter was. Had I not gone to the dentist, how long would treatment have to have been delayed? What consequence could that have had? I honestly believe the hand of God was involved in that initial visit to the dentist. I don’t have any other explanation for my sudden change of heart. Believe me, on my own I don’t think I would have ever gone to the dentist. Was God watching out for me, helping to get ready for what was coming? Perhaps.

St Peregrine, Pray for Us
Deacon John
Jan., 18, 2008

Some Answers, More Questions

2008-01-12T10:35:00.000-05:00

On this past Tuesday we saw the Oncologist and finally got some answers. Unfortunately, they weren't necessarily the ones we wanted, but what can you do? I was informed that I have Stage 3 Multiple Myeloma. The treatment options at this point boil down to one, a bone marrow transplant, to be done somewhere other than here in Louisville. As the Doctor explained, he wants us to go where the "next chapter of the book is being written." He said that while he is involved in research, this isn't the research being done here. So sometime in the next few months I guess we'll be hitting the road in search of the best treatment available. We are also, unfortunately, dependent on insurance. I did speak to my nurse case manager at the insurance company, and she was quite encouraging, making the options seem more open than I thought they were. It looks at the moment like we'll be heading for Chicago, but that could change. No, it wasn't the news we wanted, but short of a sudden miraculous cure, no news would be good enough. Throughout this trial, I have many things to hold on to, my wife, my family my wonderful friends, but mostly I have faith. This is new territory for all of us as we step into the darkness, not sure of what will happen. No matter what happens, faith is the thing we must not lose. I know that God is with us, leading us through this new place.

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught how to fly. Patrick Overton

Peace
Deacon John
Jan. 12, 2008

For my Fellow Fighters

2008-01-11T08:44:00.000-05:00

http://www.thesurvivormovie.com/

To Sleep, To Sleep, Perchance to Dream...

2008-01-08T19:24:00.000-05:00

I’ve never been a person who required a lot of sleep, maybe 4-6 hours a night. I’ve also never been a person who had much trouble sleeping. No matter what was going on around me, I could usually sleep. Until now. Now sleep has become a precious commodity, one that seems to elude me at every turn. Part of it is the drugs, from what I’ve been told, but I’m sure part of it is simply plain old anxiety. What is going to happen next? That question haunts me at times. I’m going to see the Oncologist today and hopefully I’ll have more answers than questions when I leave, but I’m not counting on it. Facing an unknown future is frightening. On those nights when I wake up after sleeping an hour or maybe two, I find myself staring into the darkness praying for a glimpse of what is to come. Praying, at this point, seems to be about all I can do. I can put on the brave front, be strong and all of that, but those nights, staring into the darkness, well, I’m scared. But, I am still praying. I may be facing an unknown future, but I am certain that I am not facing it alone. I have been blessed with a loving, supportive, family and with wonderful, loving friends who are beside me every step of this journey. I also have faith. I don’t know why I have been asked to take on this challenge, but I believe with all my heart and soul that God is with me. Some of those nights, staring into the darkness, I can’t see God, I can’t grasp the enormity of what is happening. At times I may feel abandoned, but at the end of the day I know, I believe, that I am not, that God is sharing this journey with me. I pray that in this process I grow closer to God, and hopefully others may see God at work here as well. If that is the case, then no matter what happens, this journey is worth it.
St. Peregrine, pray for us.
Deacon John
January 8, 2008

Chemo, Cancer, and the Mystery of Time

2007-12-28T23:18:00.000-05:00

When I heard cancer, time was one of the first things that occurred to me. I'm not young, and time did not lay like an endless expanse before me, but suddenly I realized just how limited time might be. I looked at things when my wife and I went on vacation, and asked myself, "will I ever see this again?" The one thing we never want to consider, running out of time, forced itself to the forefront. In my regular life, as with all of us, there never seems to be enough time to get done what needs doing. I press to get things done at work, I press to get things done at home, struggling with time. When I went for my first chemo treatment, however, I got an unexpected gift, time. There I was, IV in place, sitting in my recliner, with absolutely nowhere to go, with no pressing demand that I do anything, just sit there. All the time I had wanted to read, to study, to pray, there it was, placed in front of me like a Christmas package wrapped in a nice IV tube bow. Chemo can be a long, hard day. It can be tedious, it can be BORING, it can be nerve-wracking. Or, perhaps it's a chance to stop, escape from the world for a few hours and look for me. Maybe by looking for me, and at me, I can catch a glimpse of the One whose gift this time is.
St. Peregrine,
pray for us.
Deacon John
Feast of the Holy Innocents
Dec. 28, 2007

Me and Poindexter

2007-12-26T22:49:00.000-05:00

Just a few months ago, I noticed a lump growing on my sternum. It was small, unremarkable, and I thought that at my next Doctor's visit I should have her look at it. Then, this mysterious lump took on a life of its own, growing exponentially. So maybe it couldn't wait until the next visit. After a CT scan, an MRI, and a biopsy, my doctor called me in to inform me that I have cancer. It is amazing how quickly one's life can change. With that word, cancer, nothing could ever be the same again. Yet here I am, with my invitation to this exclusive club, an invitation that apparently cannot be refused. A choice has to be made. Give in to self-pity, or fight. As a person of faith, I choose to fight. Hence the name of this post and this blog, Me and Poindexter. No offence to anyone actually named Poindexter, but I had to give this disease, this tumor a face, something I could grasp, something I could shake as I struggle with it. Why did this challenge come to me? I can't know, at least not this side of heaven. I only know that in this struggle, in this journey through cancer to, hopefully, prayerfully, remission, I can record this journey as I attempt to find God in the struggle. No doubt, my faith was challenged, but my faith remains.