The Fork In The Road
“If you
start to take Vienna – take Vienna!!”
Napoleon
Bonaparte – on keeping focused on a goal, applying overwhelming force, and not
getting distracted.
"Turn left if you find a fork in the road" - Kermit the Frog
"Life is what happens to your while you're making other plans" - Allen Saunders & John Lennon
Before going further in today's post, I highly recommend you watch this video.
Now, two things have happened. You have a major ear worm, that can only be removed by replacing with Barney the Dinosaur's "This is the song that never ends." And, I've successfully set up today's post.
Medical Stuff
This summer, I had 24 radiation treatments to resolve a mass in my groin. The theory was, since I was in remission everywhere else, killing that one spot would fix me for a year or two. I finished radiation in early August, had a CT in early September that looked great, and had a CT/PET in November (90 days after radiation) to confirm remission. But .... (there's ALWAYS a butt) ... no remission. True, the radiated nodes were dead, but in both groin and armpits there were lots of happy little nodes just growing away. (Channeling Bob Ross there, sorry.) So that pretty much sucked like a 10 horse shop vac.
Went over to Moffitt, saw Dr. Shah, he laid out three possible treatments. One is a chemo; Bendamustine plus Cytarabine. I had Bendamustine with Rituxan in the fall of 2012, it beat the disease back but not all the way.
The second choice is a really good one, Lenalidomide plus Rituxan. This one is an immunomodulator rather than a straight poison. It has a high response rate
The third, which I consider pretty much literally a Godsend (see below) is ibrutinib. Back in the spring, Dr. Shah told me he thought it was The Bomb, and had been pulled from Phase 1 trials since it was just so darned good. They put it on FDA fast track, which is medical shorthand for "months rather than years." Even with the shutdown, they did it good. On November 13, it was approved. My PET results came in on November 14. Thus the "God" reference.
I had also been waiting for years for genetic testing to become affordable (see my book Taking Vienna, which discusses this in 2006 as the up and coming thing.) Late last year it still was on the patient, not insurance, and cost thousands. Well, now, it's "standard of care." That's medical shorthand for "insurance pays." The place that does it is FoundationOne, and their web site says "available December 16." Well, that's for open patient access. Going through a NCCI like Moffitt, it's available now. So on December 6, last Friday, I had a large node removed from my left armpit for testing both by FoundationOne and The Back Room at Moffitt (I am part of a clinical trial where I donate icky stuff to medical lab research nerds.)
That node was not gone any too soon. Just in the two weeks between getting my PET results and the surgery, it grew to golf ball size, was really sore, and messed with my arm movement and worse, ability to sleep on my left side. Taking it out just to fix that would be pretty stupid, but since one had to go for testing anyway, that bad boy was outta there.
The testing should help us make a good treatment decision, plus do something I've always wanted: positively confirm the exact genetic makeup of my cancer. I really believe that in a few years, rather than getting a strep swap, your kids will get a quick genetic test to see which antibiotic will kill their bug. Personalized medicine, or Genomic medicine, or Targeted therapy, (the name is still settling out) will be our future.
So About That Fork?
Sorry, sometimes I feel like the Fozzie Bear of blog writers. Wocka wocka. The other quote at the top, sort of reflects the result of my treatment strategy - kick it down the road a few years, let the science get ahead of my disease. Which has worked PD well. 8 years so far, on a disease that was fatal at 3 years, then 5, then 8. Now I am finding people with 12 years under their belts. But, The Good Doc Shah warned me this time, the strategy is wearing thin. I've been holding in reserve the Nuclear Option, an allogeneic (donor) transplant. This one has odds I'm not in love with. So a year or three from now, while I'm in remission (next one or the one after) it will be really, truly, decision time. That's why I'm so hot on genetic testing to pick my treatment plan, because, like many things in life, it matters what order you do them in. Just like a fork in the road, the decision I make in a couple of weeks will take me down a road to somewhere. No sign, just a fork.
Life Happens
I've written before about the duality of living with cancer. You live a normal life, going to work, soccer games, band concerts, walking the dog, buying cars. Planning for retirement, whether to keep or sell the house, travel or vegetate, buying groceries and planning Christmas. In parallel, you schedule treatments around commitments, reprioritize purchases, replan trips, and hold off decisions until you get to the fork.
Since I've had time lately to sit in waiting rooms, I've built a scorecard on what has happened in both lives while I was making other plans. I've had 8 major treatments, 13 surgeries or procedures that required anesthesia, had 28 rides in the chemo chair and 24 on the radiation table, become best friends with the gang in the front office of the cancer center, and lived way longer than I was supposed to, if you believe conventional medical wisdom. Which I don't.
On the other hand, I've watched all four of my kids become adults. One is married and bringing our first grandchild next month. Another is engaged. All four are in various stages of college. I've been to hundreds of soccer games and band concerts, choir concerts, awards programs, shows, and plays. I've had 8 more Thanksgivings and Christmases. Went from my 21st wedding anniversary to my 29th. Went from Shuttle to Station to Orion to my new job on the big booster. Met dozens of new friends, lost a few old ones, and reconnected with family.
And become a cancer expert.
So, once I select a tine in the fork, we'll head down another road, to see what lies ahead. The adventure continues!
Kevin
