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

Borange 2010-04-01 11:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.

Borange 2010-04-01 10:29:00

I’ve been blessed with a near-continuous parade of friends and relatives the last few weeks. My brothers, in particular, were very helpful and I have to single out Bro 2 for tackling a lengthy “Honey-Do” list of chores. (The price for having skills and aptitude.) Although she’s busy with full-time work and full-time single parenting, Sis has been just great, always ready to help with errands or whatever I need.

All my Hoodies have been amazing, with Chris, Mary Ann and Kerry topping the list. I truly, truly could not have come this far without their help. They are my angels here on earth. Others have helped lighten my load, just providing comfort, compan- ionship, and most importantly, lots of laughs. I’m not sure what I did to deserve such an incredible network of helpers, but I’m grateful for every one of them.

We’re giddy with Spring Fever — several consecutive days of 80º+ weather — and Final Four Fever. By coincidence, my hometown is hosting the Final Four this year, and a local team is “going to the dance.” It’s been a long time since we’ve been this excited about the NCAA championship.

I’m not sure the Rake-o-rama is going to happen. I’ve managed to select two rainy days; the first rain date now needs a second rain date. Perhaps one of them will select another date/time and declare a Flash Rake. I can’t bring myself to pester these wonderful people again.

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 oItalicf 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

Merci, Gracias, Todah, Thank You

…for your kind words and good wishes. I know they are heartfelt, and I return them to you a hundred-fold. Some readers who are not comfortable adding a comment (or haven’t figured it out) have sent notes that also mean so much to me. You lift me up on a cloud of kindness and my aches and pains seem to disappear.

You’re all making me out to be much more noble than I am (which is: not at all) but I’m going to simply enjoy the view from the cloud. I will continue blogging, at least for a while, and when I do sign off, I will leave the blog up in hopes that there is something helpful for other cancer patients. Thanks again,
The Coot

Big C Update

I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.

Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.

I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
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P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.