The Big ONE

I hardly remember a thing about that day…I remember that I just wanted to get it going and that, despite what I said, I didn’t want to be alone. I remember preliminary discussions about epidural pain control, etc., and how I just wanted someone to tell me what would work best so we could get on with it. I remember waking up and feeling an overwhelming sense of relief to see Brenda and Lori and Nicki, and how desperately anxious I was when they were shuffled out. I remember the extraordinary pain that shot through my abdomen when I was handed a phone to tell my son everything was “OK,” even though I had no idea. I remember being stuck in a corner of the recovery room, isolated behind a curtain and the recovery room nurse who repeatedly told me that I didn’t really have pain, that I was making it up and that I was using too much pain medication. I remember how time became irrelevant throughout that night as my whole world revolved around the fact that without warning my severed abdominal muscles would spasm uncontrollably, sending bolts of pain throughout my body once, twice, three times…finally subsiding until it happened again a few minutes later. I remember how, as the next day dawned, a new team of compassionate professionals arrived and told me they could stop the pain but it would take a massive intervention and how they were right.

One year ago my life was saved. Under the direction of Marc Pipas the tumor constricting my bile duct and blood vessels had previously been assaulted with chemicals and radiation in the hope of shrinking or even killing it outright. Then one year ago today, under the direction of John Sutton, we discovered that the tumor had shrunk sufficiently that it could be cleanly removed. Without the treatment prior to surgery the tumor could not have been removed. Without the expert surgical intervention, the tumor would not have been removed completely and would have, undoubtedly, grown and spread. So it was one year ago today that Dr Sutton removed what was left of the tumor, effectively saving my life.

It is strange to have been so close. Had the treatment not been effective or had the surgery not removed the entire tumor, I would be terminally ill today, if alive at all. This is not news to many of you reading these words. You walked with me throughout the ordeal and once the news of January 29. 2008 was reported as positive, you celebrated the successful resolution of what turned out to be a relatively brief, though intense process. Of course for me the process was far from over.

One year away I can tell you that things seem to be going well. I did not become diabetic with the removal of much of my pancreas, my diet is relatively unrestricted and I am learning how to address the uncertainties that accompany not having a fully-functional digestive system. The surgical site seems to have healed completely although next month’s check-up will bring renewed peace of mind to that question. My ability to be physically active has returned with only minimal, though definite, limitations. There is chronic achy-pain at a sufficiently low level that it is (mostly) tolerable and has seemed to diminish over time. Lastly, even with the complication of a post-surgical infection there doesn’t seem to have been any long-term issue related to that horror. Given what I’m hearing from the few other folks with whom I’ve been in contact, my physical recovery seems to be going well.
What’s most interesting is the blank canvas this experience made of my life. Not only has it been an experience out of which I’ve had to create of whole new sense of myself, it seems to have been the same for those around me as well.

Astonishingly, there were a couple of people who used my illness against me, taking advantage of my weakness and temporary disability for their own gain at my expense. It’s hard to imagine but is true and gave me a unique look into the predatory instinct of our human nature. But then it has also helped me see that though something may feel malicious, sometimes it is simply the result of ignorance and fear. For others this was an opportunity to define for me what my experience meant, creating for themselves an image that was understandable and reasonable out of the raw material of a circumstance that was simply, in and of itself, without reason or meaning. But then it also allowed me develop a new level of understanding in those areas where there is honest disagreement or misunderstanding. Some opened themselves in wonderful and empowering ways then found the difficulty of the long road too much to bear, making it impossible for them to fulfill the good intentions with which they began. And I developed a deeper appreciation for taking the moment for what it is and not judging it against expectations and hopes. Still others sat with me in moments that were undefined and indefinable, allowing me to be and feel whatever came to the surface in the reality of those moments. And now, even a year down the road, they have the grace to hear my occasional expressions of frustration or doubt or pain and bear with it all, because they know that my frustrations and pains are not the primary colors on the palate my reality.

For me, the experience has deepened my faith in the awe and mystery of human discovery, insight and creativity. It wasn’t ancient wisdom or supernatural interventions that saved my life. It was the Power and Glory present in the here and now.

On one level I think of everything that came together that allowed my diagnosis to occur, that opened to me the possibility of the clinical trial, and that placed me in the hands of such a skilled and experienced oncology team, and I am in awe at how the simple competence of highly competent people can accomplish so much. On another level I think of how the people who accompanied me did their best at every moment, whatever way they knew how, to be present and supportive and what a difference that made. I still can’t look too long at the many messages and expressions of affection that where left on the PowerandGlory CarePage without being overcome by the emotion of it all. It still bears me up.

On a deeply personal level the experience showed me the depth of what I am capable of enduring. There are moments I remember vividly where the raw power of determination and desire were all that were left, yet they were enough. And there are moments I remember vividly where the determination and desire that kept me going were matched with the love and support of those who walked along side me and the skill of various medical care-givers to provide springboards to insight and growth from which I still benefit.

I look back on the past year and see, even in the sharp memories of struggle, pain, and uncertainty, an overwhelming beauty in it all. They say that after any significant trauma it’s advisable to delay any major decisions or changes in life for a year or so to allow the emotions and psyche to adjust to whatever new reality has been created. Even just a few months ago I didn’t fully accept that “common wisdom” as having much value but from this vantage point I understand it more fully. The revelations I’ve had about myself and the meaning this event has made possible for me have really only come into focus over the past several weeks and were born out of a natural process of healing and wellness that I couldn’t and didn’t force, but happened within me as my physical, emotional, and psychological realities found a truer sense of balance. I didn’t and couldn’t have forced a resolution to my experience; it had to happen, as it continues to, through a natural process of healing, reflection, awareness and growth.

One-year after there is so much more to share but I wanted to let you know how true it is that healing isn’t just the result of the surgeon’s skill or the return of normal lab values or even the destruction of a life-threatening tumor. Healing is so much more than any of these. Healing is not the resolution of what’s happened to us, it is the realization of what we’ve done because of what’s happened to us. Healing is found as much in the friend who feels helpless to do anything other than to be present as it is in the IV antibiotic. Wellness is found as much, perhaps more, in the act of facing and enduring one more day of uncertainty and pain as in the art of surgical reconstruction. As the song says, “I wouldn’t trade the pain for what I’ve learned.” And a big part of what I’ve learned is that the path of my recovery lead straight through, not around, all the pain of the past year.

So here I am. I don’t foresee updating this CarePage again. This page was one critical part in the process, but it’s time to move forward. The page will, however, stay open for others to discover and perhaps utilize on their own journeys. This outlet allowed me to have a voice and enabled me to hear so many others. I cannot imagine having made it through without it. We created a special kind of natural magic here and I will never diminish the profound nature of what we accomplished together.

It seems appropriate to end these updates with a word about the name of this CarePage – “Power and Glory.” It’s taken from a song by Lou Reed which expressed the sense of defiance I embraced when I was first diagnosed and which expresses my sense of determination today. It’s about embracing the uncertainties and even the tragedies of life and using them as sources of strength rather than excuses for weakness. One year later, it’s also about what you’ve helped me accomplish and the way I strive to live every day.

I was visited by The Power and The Glory
I was visited by a majestic hymn
Great bolts of lightening
lighting up the sky
Electricity flowing through my veins
I was captured by a larger moment
I was seized by divinity’s hot breath
Gorged like a lion on experience
Powerful from life
I wanted all of it–
Not some of it
I wanted all of it—
Not just some of it.