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

Here at Last

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...

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

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

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