Taking The Big Ride

 

“If you start to take Vienna – take Vienna!!”

Napoleon Bonaparte – on keeping focused on a goal, applying overwhelming force, and not getting distracted.

 

Download the book here

In the months since my last post, not a lot happened, cancer-wise, for most of them. A lot has changed lately, so I thought it was time to update my extensive fan base of nearly seven people.

First, though, I encourage you to read, or re-read, this post: How My Cancer Might Save Your Life. It's a quick read, and if you pay close attention, you'll be a different person afterwards. 100% guaranteed, or triple your money back.

This post might be rather long, so here's a Table of Contents so you can decide what to read, if not all.

• Header
• Introduction (not labelled as such, figure it out!)
• Table of Contents (thus displaying my position on the style guide nerd's conundrum: Do you list the Table of Contents in the Table of Contents? This has occupied WAY to much of my internal thought energy, I'm resolving it here.)
• Kevin's Latest Big News
• Commercial
• The Plain Facts
• Diversion
• The Raw Face of Courage
• Going Forward

Kevin's Latest Big News

 I've been fighting this disease, Mantle Cell Lymphoma, for over nine years. 17 months of intense treatment, 5 years of remission, 2 years of less intense but still aggressive treatment. And I've done very well with it. Through the remission I did 5K's and micro-tri's. Worked some tough and fulfilling jobs, with lots of overtime and stress. I stood down from running during the first part of my treatments after relapse, but in October 2013 I set a goal of doing a 5K a month for the duration. Well, I did 8 races (including an 8K, and a 1 miler) in the 13 months since. While I wish I'd done more, I feel pretty good about this. The 1 miler was the Super Caleb race on December 20. I'd planned to train for it, and really turn in a great 5K time. Best laid plans, etc, and I neither trained for it nor ran it. A severe cold knocked me down, so I jogged the 1 mile leg instead.

Last month, one of my indirect blood markers was up, and had shown a slight increase for several months. So, worrying while not worrying, I went through another cycle of scan - wait - relief when it all came out OK, a very clean scan.


But - Clue alert - something is changing after January. The medicine I've been on since  December 2013, Ibrutinib, according to the Good Doctor Shah, has been regularly shown to lose effectiveness after 12 to 18 months. After that, there's not a lot in the pipeline for me, until 2-3 years out. I could continue my the strategy I started in 2005, pushing the disease 18 months ahead with treatments to manage the disease but not cure it. And, there are some ways that I might continue this approach. But, instead, and this is The Big News, the rhythm of my life and family is aligning with the gap in development of new medications so that this is time to Take Vienna. (see header). The only known possible cure for MCL is an allogeneic bone marrow transplant, also called a donor transplant. When we checked in 2005, and again in 2013, there were some "9 out of 10" matches out there, that my transplant doc (Dr. Ayala, who did my autologous BMT in 2006) felt were acceptable. Once I made the decision to go forward for sure, they searched again, and found a 10 out of 10 match, that had just registered in August!

Commercial

<<This commercial break brought to you by the National Marrow Donor Program>>

I get asked ALL the time: "Kevin, what can I do for you?" Answer: register as a potential donor. It's easy, the odds of you getting called are very low (1 in 500), and the procedure isn't NEARLY as scary as it sounds. They mail you a cheek swab kit (similar to the DNA kits used now). You send it in. Done. In the very unlikely event you are a match, for my type of cancer you don't actually donate marrow, which sounds icky and painful (it really isn't, done right, but that's moot.) You donate, and I receive, Peripheral Stem Cells. It's quite similar to donating platelets. You get some shots to boost your blood cell production. You get hooked up to machine, similar to donating blood, and they filter the stem cells out and return the larger cells and fluid back to you. No need to even drink the orange juice! Somewhere out there in the world, last August, some person signed up and BAM! I have a donor. You could save a life too.


<<End of commercial>>

The Plain Facts
.
This procedure isn't risk free. Back in 2006, I had to decide on an autologous (self) or allogeneic (donor) transplant. Then, having a young family (4 kids 8-18), and life insurance & 401K savings at a middle-ish level, plus a lot of new medicines in the pipeline, we decided on the very low risk self transplant, knowing the chances of a cure were low but the chance of remission and new drugs were high,. I had a good long remission before relapsing in 2012, and now the procedure is safer (although the numbers aren't of course as high we'd like). There's also a gap in what's in the pipeline, with The Next Big Thing a couple of years out.

This procedure means a month in isolation at Moffitt, like last time. Afterwards, we have to stay in the area in a hotel, apartment, or Hope Lodge for two months. Then, home recovery for 3 to 6 months more, for a total of 6-9 months. That's if things go well. There's also a chance things will go down another road, and I'll have a significant case of Graft vs. Host disease, and could be out of commission for an extended time. We're following the "hope for the best, plan for the worst" policy on that one.

We have a pretty solid plan for the 6-8 month version of events. Our wonderful adult "children" are going to pitch in and help. But even with that, and, since I know you'll ask, there are things we will still need more help on. And, like last time, I've gotten my pride backed off to a point I'll accept help. It's hard for me to admit I can't do it all. And it's really hard to accept help, even though it's freely given and I certainly like to help other people! Will make our needs known when we run across them.

Also, the offer I made in the post linked above stands. As this blog shows, I'm very "out" about my disease. I also have a calling for public speaking. So if your church or civic group, business, or other organization would like to hear a fundamentally disturbing, uplifting, life saving talk, let me know. I have seen so many lives changed by this awful disease, both for the bad and the good.

Diversion

By now, I'm sure you've asked yourself, "Hey, Self. What's up with the title of this post?" To satisfy your Self, tell it this: "Self, one of Kevin's favorite old time shows was Northern Exposure. One of the supporting roles was played by a great character actor, Barry Corbin, as a former astronaut with a huge ego. He referred to "The Big Ride" when talking about his space launches. ("They've got a gallery where they pin up all the guys that took the big ride.")" I've worked with many astronauts, and have never heard any of them use that term, but it's stuck with me as a phrase for describing a major life adventure. Now you know.


The Raw Face of Courage

In my post last Veteran's day,  The Morning Face of Courage, I talk about the incredible resiliency of the human spirit. Since then, I've sure seen a lot more of it. Watching Super Caleb's family deal with cancer in their 3 year old son, and seeing that incredible boy face his illness without understanding, but with raw spirit, courage, joy, and grit, I've learned a lot more about the subject. As for me, there are two times in my month, that I have to dig down deep and find my own reservoir.

The first is my monthly, five hour ride in the chemo chair. It's a routine, I've done this maybe 36 times, but when I climb out of my car in the parking lot at the cancer center, with my lunchbox, audio equipment, books, and list of questions for the doc, I have to stand there for a minute and make my foot take the first step. Usually a 10-15 second process.

The second is when I'm doing a 5K. By now, like chemo rides, I've also done about three dozen runs in my life, so I know my pace, rhythm, signs that I'm ahead or behind my body, etc. I also know that at mile 1.5, and around 2.3, I hit the wall. It's just me, the pavement, the heat, my gasping and narrowing vision, and That Little Voice that says "go ahead, just start walking. You're only doing this to finish, and everyone already thinks you're brave for being a cancer patient running anyhow." That's when I have to really draw up the vision of my last transplant. Lying in a bed, huddled in a hospital recliner, too tired and sick to suit up and take my daily walk all the way around the nurse's station. I picture how I'll feel when I hit the chute, and push into my characteristic "kick," finishing with arms up, accelerating to the finish. This means, of course, a near collapse 1.2345" after the finish line. I think about the folks I've met in the chemo room, listened to their stories of unimaginable travail, seen their actions, and heard their words. Then, I call up one of my "standard" Bible verses, 2 Timothy 4, verse 7: "I have fought the good fight, I have finished the race, I have kept the faith." And, somehow, every time, I am able to push through the wall and just be miserable for a while. You see, I hate running with a burning passion. But, I'm comfortable in my pace and like the idea of being a runner a lot. So I do it because, (famous last words), it's good for me. And not just physically.

It's not just about finishing. I could walk 3 miles and finish. It's about finishing right.  Finishing with style. Conquering the race. That's why I save a bit of energy for the finish. Technically, runners should manage their energy to exactly hit "zero" at the finish, leaving it all on the course. I've made a decision that finishing right is better than finishing fast.

This photo, courtesy of my friend Joe Jacoby, was taken when I finished my first micro triathlon in 2008, two years after my auto transplant. I did a 100 yard swim, 4 mile bike ride, and 2 mile swim. There's a great article on page 7 here:  The Running Zone Newsletter. I was so slow in the pool, they had to hold the next wave and I had to be helped out of the pool. I fell down a muddy slope into the bike area, but after that managed to chug through the rest. And, as you can see, finished with my version of style. And then I fell down, gasping, to the great concern of a couple of paramedics. They didn't know what I know, sometimes the cost of finishing with style is pretty high.

Going Forward

In the third week of January, I go over to Moffitt for a 3 day long workup, in final preparation for the transplant. The first week of February begins a month in an isolation room, where the transplant happens. March and April will be spent living close to the hospital, where they will keep close tabs on my. At the end of April, I'll either have Graft vs. Host disease, or I won't. If I don't, I come back home and recuperate for three more months before I can go back to work. If I do, then we're into the "see what happens" mode to decide when I'm well enough to live at home and return to work.

During my stay in Tampa, both in the hospital and as an outpatient, I'm free to have visitors. If you happen to be in the area, I'd love to see any of you. Please call ahead, though, in case I'm having a bad day, or have a procedure scheduled or something. If you're actively sick, we'd best keep it to a phone call. If you are well, there will be a few precautions, but none too burdensome.

As I said above, I'm sure we will need help over the springtime. As things come up, we'll reach out to you all and I know that, knowing you all, things will happen.

On New Year's Eve, my younger daughter married a wonderful man, following in her older sister's high heels (2011) and for the second time since contracting this horrid disease, I  was the Father of the Bride, joyously dancing at a wedding. Thanks to my family, the staff at Space Coast Cancer Center, Moffitt, my co-workers, friends, and neighbors, I'm around to celebrate.

Here we go. The Big Ride. I'll be planning how to finish this one with style!



Kevin