Anniversary

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

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...

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..

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....

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...

...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

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

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...

...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????

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...

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

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...

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

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

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

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...

...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

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

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

Waiting for...

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