whippleLife – recovering from the cure

Becoming A More Meaningful Statistic – Two Years Out

Posted on January 29, 2010. Filed under: Issues in recovery |

This was intended for and written and published on the www.whipplelife.com blog.
It might turn up elsewhere, cross-posted on one or more social networking outlets.

Two to five years…isn’t that it?  You read the statistics and they talk about mortality within the first few months and then the next “block” of time is two to five years.  For me that clock started and stopped two years ago, January 29, 2008.  That was the day John Sutton filleted me open and, as he would later indicate, went in “up to his elbows” to work on me, replumbing my digestive system, removing the then-nearly-dead tumor, and excising as much of my body as he felt he needed to in order to assure that there was no where this enemy could reasonably be expected to find purchase and strike back.  It might have been the start of the clock except, as those of you familiar with my story already know, I was damn fortunate.

I was fortunate that Marc Pipas was still taking subjects for his trial and wasn’t out sick the day my case was presented before the tumor board.  I was fortunate that I lived within an hour of one of the finest facilities available for the treatment of pancreatic cancer.  I was fortunate that Drs. Zaki and Sutton were as skilled and dedicated as they are.  And I was fortunate that these really smart folks attracted other really smart folks to them so they could figure out the vexing problem of how to start the mortality clock…and then stop it, too.

You see, that’s what made all the difference, as far as I was and am concerned.  I’ve become familiar enough with the pancreatic cancer community to know how pernicious the search for knowledge is in the hope for a cure.  I’ve read dozens of posts and followed dozens of cases where people tell their stories online about how they are looking for the precise treatment for the precise aspect of their cancer.  Some are desperate for any hope because they’ve received the devastating news that they must face this, so they seek to become experts on all their options with the belief that they’ll know just what to do.  Some are suffering after surgery or, in many cases, with the prospect of fatality, and they’re hoping to find the right mix of care to make their time pass with as little suffering as possible.  But what seems to be common among all these cases is that they are driven by the clock, the numbers, the statistics about what will be…if… .

I certainly can empathize because for almost two weeks after my initial diagnosis I was awake until 1 or 2 a.m. every morning, scouring the internet for any information I could find, and there was plenty of it.  There was and is plenty of research to direct the curious off in any number of directions with tantalizing offers of cutting down…the clock.  It was always that damn clock.  The percentages…dead within six months…18 months…two years…two to five years.

Ultimately I stop looking.  I hadn’t met Marc Pipas yet.  I hadn’t heard his “pitch” about the clinical trial he was supervising.  I hadn’t signed the consent form or felt warmth of his arm across my shoulder as he assured me that, “we’ll beat this.”  But still, I had stoped looking.  It’s not that I had given up, far from it.  As I look back what I realize is that I had decided I wouldn’t lead with my mind, I’d lead with my faith.  I knew I couldn’t become an expert.  I knew that the nuances contained in the information I was found were so subtle that any attempt I made to “direct” my care by choosing among the several choices would be simply an exercise in self-deception.  After hour upon hour of research, I had information but I lacked wisdom.  So I decided to substitute faith.

Here’s where I need to tell you that I really like the stuff that people can think up.  Whether it’s sending a probe beyond the limits of our star system, putting a building up a half-mile into the sky, or arranging tones in such patterns that they can move a person to aural ecstasy; whether it’s discovering ways to truly enhance opportunities for the freedom of the human spirit or understanding how the intricases of the human machine actually function, I just love that we can figure stuff out and think stuff up that’s real. I believe that the world-as-it-is is so full of mystery and awe that it almost detracts from it to try and add a layer of supersition or “magic” in an attempt to make the existing mysteries more palatable.  Because despite the fact that we tiny humans can know a lot of stuff, there’s a lot we can’t know which, to me, makes the stuff we can know all the more precious.

So, I realized that I would opt for the mystery of the real.  I wouldn’t try to figure out that which was, ultimately, unknowable, I’d listen to the smart folks and I’d listen carefully.  I’d take what they had to say seriously and weigh it with as much objectivity as I could muster and if it made sense, I’d place myself in their hands.  I wouldn’t try to “beat the odds,” I wouldn’t play the odds at all.  I wouldn’t worry about the statistics, I wouldn’t pay attention to the clock.  I decided that I was not a statistic, my case was mine and that, whatever happened, it wouldn’t be determined by the weight of what had gone before it would be determined by the strength of how I carried forward.  I’d put my faith in the smart stuff that smart people could think up.  I’d do what they told me and I’d take the ride.  And here I am.

Statistically, I’m entering that two to five year phase now, but it doesn’t really mean anything to me.  Yes, they opened me up and when they did they started the mortality clock, but they were smart people who had done smart things and I had gone along with them, doing everything in my power to make that smart stuff work for me, so when they closed me back up they stopped the mortality clock.  They removed my cancer and did so in a way that it won’t be back.  Pretty smart.

I put my faith in the ability of people to know what they were doing and that faith in the awe and mystery of the human imagination and spirit was justified.  I accept the fact that every day I am reminded of what I underwent two years ago and that some days I’m reminded far more than others.  I accept the fact that this journey was, and is, and intensely personal one and just as there there were a couple of folks who sought to take advantage of my vulnerability, there were far more who rallied to hold me up and keep me moving forward and that they will never know how much they meant because I’m still discovering it myself.  And, most importantly, I accept the limits of my independence and the absolute necessity of interdependence with hearts and minds of others to make life what it can be.

My survival of pancreatic cancer will inevitably be tallied as one more tic in the longevity column and there will inevitably be those who will one day see the increasing numbers of those tics and gain hope because of them.  But ultimately my survival, my life, is about more than being another tic on a tote board.  It’s because of the faith I have in the depth of the human spirit and the boundlessness of the human imagination that I feel, more intensely than ever, that the possibilities of life are only limited by fear of the unknown.  It’s because of that faith that was able to open my heart and find love, discovering that life will always have adventures to be lived if I want to reach for them.  It’s because of that faith that I have hope, not just that “things will be all right,” but that we are capable of making them be all right, on scales small as well as large.

Two years ago this clock counting down toward my inevitable demise stopped.  I was cured.  And the faith that saved me, the faith that it is up to us, continues to fill me with the awful and marvelous possibilities of what being alive really means.

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