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

Insurance....Bleah

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

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...

...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...

...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...