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

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...

One Week of Revlimid Down

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

Chemo, Cancer, and the Mystery of Time

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

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.