Being the 1%

Summary

One of my favorite TV characters, John Astin, as Buddy with the best catch phrase ever. A staple in our household, Sandy and I use it at least monthly.

When we last left Kevin, things sucked. Now they're wonderful. By Sunday evening, I was "feeling much better now." Monday, slow and steady, worked all day. Tuesday better, today it's like rolling the clock back a month. Had a long talk Monday evening with the oncology Nurse Practitioner, Katie. She's thinking my total energy suck was maybe due to the blood booster, NuLasta. I've had it dozens of times, but either the 5 year gap, or something, maybe that was the reaction. Unfortunately, it's "lets try again and see what happens." 

Thanks to Rory, Stacey and Anna who came over Sunday and fixed my broken pool pump.

So it looks like I'm good to go until Cycle 2, first week of October.


Cancer By The Numbers

Warning: Philosophy Below.  Don't read if you can't stand squishy thoughts and pseudo math.

Ask any insurance agent, we are a very predictable society, as a large group. Odds of being injured in an auto accident, odds of being struck by lightning, you name it, there's an actuarial table for it.

Trouble is, those are all going to be high on goodness, low on failure type numbers. Cancer numbers tend to be a lot more centered around a mean of, say, crap.

My chance of getting my particular kind of lymphoma is 4% of 4%. Most of the other 96% of the 4% are pretty curable. So once you go down the "low odds" rabbit hole, life gets interesting.

When diagnosed with Mantle Cell in 2005, conventional medical wisdom using scientific, peer reviewed studies, said that even after RCHOP and an auto transplant, my odds were 50/50 of making it three years without relapsing. So in 2006 when I got done, I was hoping to make it to 2009.

But let's look at that. In one of the epiphany moments of my life, sitting there doing what ALL cancer patients do, which is to Google "<<my cancer type>> survival rate," Sandy tagged me with a life long (literally) goal. "What says," she asked, "you can't be in the RIGHT part of the 50%?"

Bingo. Thus began the crusade. I did every single possible thing. Became a lay expert on my disease. Became addicted to ASCO.com.  Contacted the German doctors doing the leading edge work. Then the English, doing 2nd rounds. Then the Canadians, doing 3rd phase. I already was pushing the U.S. system ahead of the FDA since I'm "rare." I took a radioimmunology pre-treatment (2nd one ever at Moffitt, first for that drug.). Took maintenance Rituxan AHEAD of the formal U.S. paper presentation.

And it worked. Plus the science kept going out ahead of me. By 2007, I had a 60/40 chance of not relapsing before 2010.  By 2008, I had a 70/30 chance. By 2010, I had an 80/20 chance of not relapsing before 2012. Which I didn't.

However, at the end of the rainbow is a chunk of solid ground. And the gold is deep under it, to coin a metaphor. (Anyone who understands these two lines is my friend in weird humor.)

So now it's 2012 and all odds are reset. I was barely in the 80%. The treatments I'm doing have a 80+% chance of putting me back in full remission, and a 90+% of at least partial. For how long?

Hmmm .... good question.  I caught up to science. So far, this regime hasn't been standard of care long enough for many people to die. Which is a weirdly interesting concept to cogitate. Plus, for the maintenance Rituxan treatments I plan to use, it's all anecdotal. So damn the odds, full steam ahead!

So, on the negative side, I'm tbd% of 80% of 4% of 4%. On the positive side, who knows?

In life, we all understand the 80/20 rule. Whether in PTO, Band, clubs, or churches, 20% of the people do 80% of the work. Sandy and I have always tried to be part of the 20%. Investing in life around you pays dividends. Being remembered as the "nice customers," the "always there people," the "always a pleasant word" person, moves you into the top 20%. It's not that hard, it makes you feel good, and it pays off in life.

So what about this 1% thing? Outside the blatant, pandering eye catching use of a currently socially popular phrase?

How do you further yourself from the 20% to the 5%? Or even the 1%? The two simple secrets to success, as they say in the infomercials, are amazingly easy. But, like the reality is, it won't work for everyone. Say about 95-99% (do the math, duh). But it works. And in the internet age, it's gotten a LOT easier.

Secret 1 - say yes. "Hey Kevin, want to go to xyz?"  Yes. "Hey, Kevin, you seem to be a guy that likes to do things. Want to pdq?"  Yes. See cool thing, tell yourself yes.

Secret 2 - talk to people. Nicely, respectfully, without fear.

NOT BRAGGING. Which means I am. A few things I'd have put on a bucket list if it wasn't invented late in my life:

Be inside a Space Shuttle. (dozens of times)
See a rocket launch (hundreds)
Get to know an astronaut (lots)
See the Hubble Space Telescope, Galileo, Magellan, most of the ISS (done)
Become friends with a millionaire. (Quite a few)
Sit at a table with 6 major SF authors and chat (done)
Be a fully suited crash test dummy for Shuttle evacuation drills (done)
Have a socially cool hobby and win the respect of many with it (fighting combat robots)
Save a life (still working on this, I'd say part credit 4 times)
Make a life (4, all awesome)
Work on Columbia recovery effort (done)
Have a cadre of true, solid friends with deep personal integrity and weird senses of humor (done done done!)
Sail through the Golden Gate into deep ocean water (done)
Build a house (most of one)
Build an in ground pool by hand (done)
Survive in the wild (done, for a short while)
Drive across the U.S. (three times?)
Publish books (3 so far)
Be a newspaper columnist (12 years)
Be published in magazines (100+)
Be respected among my professional peers (humbly, got to say yes)
Be a good husband (so far, so good, I think, 28 years)
Be a good father (ditto, 27 years)
Be a Godly person (probably 50/50 on this one!)
Speak in front of large groups (more than I can count) 
Hold a piece of the Surveyor spacecraft from the moon in my hand (done)
Present as a subject matter expert on starships at a DARPA conference (faked my way in)
A bunch of other stuff I'll think of after I post this (to be done)


See where this is going? All of you have a list like this. But completely different. Make it your mission to grow it in length and coolness by saying yes, looking for things to tell yourself yes to, and talking to people. On the internet, in person, on the phone, play "who do you know" and build that network. It is completely surprising how many important and/or expert people will communicate with you, if you're not an idiot about it.

What about the opposite list: stuff of badness? Got that, too. Anyone can play "my life is worse than yours." In fact, my list would be right up there, not counting the obvious here.

But that game puts you in the 80%, or maybe the bottom 20%. Stay away. There be dragons there.

In another post, I'll talk about the zen, or schizophrenia, or bilateral nature, or inside out nature of living with cancer. Here, I guess I'm trying to balance the 1% chance of the suckyness I've fallen into with climbing to the 1% pinnacle of being That Cool Guy.

And with that line, I gagged my kids, chuckled my friends, and gave my detractors ammo.

God Bless and Good Night,

Kevin