whippleLife - recovering from the cure

Becoming A More Meaningful Statistic – Two Years Out

whipplelife — Fri, 29 Jan 2010 04:41:41 +0000

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.

Anniversaries – on the calendar and in the heart

whipplelife — Tue, 22 Sep 2009 03:07:13 +0000

I wonder how long the visceral sense of the anniversaries will continue to be the predominate emotional reality of the day every time they roll around. September 22, this year, is two years since I underwent my second ERCP, the one that provided conclusive evidence that confirmed a diagnosis.

The doctor was kind in his telling. His manner was direct but decidedly gentle. I indicated that I knew about pancreatic cancer, it’s seriousness, it’s lethality. He gave me factual information without sugar-coating the truth or being maudlin. He described the process that his hospital used in such cases. He gave me a general time line for how quickly things would move. He let me get along…with my life.

I had just started an internship as part of a mid-life career change. I was on the upswing of an increasingly contentious divorce. I had rearranged my work schedule to allow me to continue a 40-hour workweek along with the 20 hours/week I’d be involved in my internship. I was trying to care for a 13 year-old son. I had no time to have this bullshit thrust on me. My life was finely balanced and there was barely enough energy to deal with the basic concerns that were a part of my new existence. I had no choice. I remember that there was no sense of hesitation or uncertainty. There were some realities that were absolute and there was no reason to postpone them.

Within an hour I had put my course-work on hold and canceled my internship. I had been told that the treatment would occupy me full-time, that it would begin as quickly as possible and that there would be tests and appointments leading up to it. There was absolutely no time for my school, it would have to wait…for what? I also called my lawyer. I knew that this would be used against me (as it was, in ways I could have never imagined) and I knew that every step I took would now be in the context of my…cancer. Yes, that was it. I had cancer. It was lethal cancer, count-your-days cancer, and I had it but I remember thinking, on the ride home, that it would not have me. So I called my lawyer. Cancer would be a strategic concern, not a mortal one. And I called my therapist. My therapist had known me for years and…he had an expertise at dealing with those facing cancer.

Now the days on the calendar turn by and September 22 comes around again. The first day of autumn. The day everything changed. How can I not remember? Not just the events, but the feeling, the focus, the uncertainty. I remember because that day marked me, invisibly and to most, imperceptibly. It became the wedge used to dislodge me from the future I was building for myself. It became the evidence of my super-human will and spirit. It was the beginning of a horrific period where I endured moments I never want to remember. It allowed me to discover and to show what I was capable of. It began a process that changed me physically in ways that those who admire my strength and spirit and fortitude, as well as those whose callous denial and disregard have left me casting about for a way forward, can never know because even though it doesn’t show I feel it every moment of every day. The purple band I wear around my wrist, unnoticed by almost everyone I encounter, is the only outward and visible sign, of the inward and physical turmoil that was wrought upon me.

If you’re reading this and, you too, have lived, I think you know what I’m talking about, and you are not alone. I don’t write this with a sense of self-pity, though there are moments. I don’t write this with a sense of defiance, even though there are some times. I write this because I want to know when and if the anniversaries will pass without notice or mention or awareness. Because when, and if, they do I believe it will because because I will no longer feel marked and because the humility I so desperately seek will have taken hold and I’ll have really started to get on…with life.

You Have the Power to Change the Course of Pancreatic Cancer History!

whipplelife — Fri, 27 Feb 2009 04:18:55 +0000

The time has come for all of us to band together to make pancreatic cancer a national priority. Working together, we can make a real difference in the lives of the many thousands of people who are currently battling pancreatic cancer, and thousands more who will face pancreatic cancer in coming years.

Please click here to sign the pledge to complete Your Seven Week Challenge today, and invite your friends and family to join you. We’re on a fast track to Change the Course of Pancreatic Cancer History. Click HERE to join us today.

http://www.pancan.org/

The Big ONE

whipplelife — Thu, 29 Jan 2009 10:58:51 +0000

(This post was created for the “PowerandGlory” CarePage created when I was first diagnosed with pancreatic cancer.)

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.

Patrick Swazye

whipplelife — Sun, 18 Jan 2009 03:33:18 +0000

I’ve been thinking a lot about Barbara Walters’ recent interview with Patrick Swayze, as I’m sure many people touched by pancreatic cancer have been. My initial reaction was that I was disheartened that they didn’t do more about the actual facts of his diagnosis and treatment. It’s one thing to give a general overview but a precise location and treatment review would have given more depth to the issues surrounding his fight. Still, I was encouraged by his emotional honesty. As much fluff as Walters seemed to want to cover him with, Swayze seemed to be bluntly and openly present for much of the interview. His apparent frustration, when talking about the low tolerance he now has for bullshit, his adamant rejection of the “alternatives” (that promise life but only hasten death) to real treatment , and his straightforward approach to intentional task of living were all areas where I found myself viscerally connected to what he was saying.

For much of my own journey I’ve thought in terms of finding a “tribe” and had to reflect on the realities I’ve faced as I’ve not found others who have faced or are facing the same challenges I have. As I listened to Swayze, I was struck by just how personal this fight is. Certainly, our apperance changes and that can draw sympathy and concern, but the daily physical reminders present in recovery are usually not visible and therefore easily dismissed by others. Over and over the press has hailed Swayze’s “couarge” to wage this “fight” in the face of death and I certainly would too. But they have no idea what it takes to live…

Anniversaries

whipplelife — Tue, 19 Aug 2008 10:23:24 +0000

What did you know and when did you know it? The anniversary of symptoms, treatments, other major events can be a significant part of whippleLife. What’s been your experience as time passes?

breathe…just breathe…

whipplelife — Tue, 24 Jun 2008 03:41:43 +0000

While every disease brings its own set of challenges, I believe that facing pancreatic cancer and living with the treatments and procedures that can delay or even cure the cancer, is one of the most personally profound experiences a person can have. I believe that due to the ever-present threat of fatality, coping with this disease, even in remission or cure, reveals something authentic in us. What helped you cope and survive? That gave/gives you hope? How to you hold and look to the future without fear? What inspires you and allows you to feel joy?

in my Tribe

whipplelife — Fri, 20 Jun 2008 00:25:25 +0000

There are few of us out there…whipple patients…whipple surviors…pancreatic cancer survivors…

What is your experience of having this particular disease and/or living with this major surgical intervention? Have you, do you feel like you’re going through it alone? How are your circumstances like/different from those of others you know or have heard of in similar circumstances? Do you know any who is in our tribe?

living / working

whipplelife — Sun, 15 Jun 2008 16:50:51 +0000

How did your surgery and recovery impact your ability to live life as you had prior to the surgery? What challenges have you faced as you try to return to your “normal” activities of life and work?

strength / stamina / rehabilitation

whipplelife — Sun, 15 Jun 2008 15:06:49 +0000

How debilitated did the surgery leave you? What helped you regain strength & stamina? What rehab strategies were recommended, worked, or didn’t help? How quickly did you find your strength return?

diet / eating

whipplelife — Sun, 15 Jun 2008 14:49:20 +0000

A place to share stories of how you have experienced or are experiencing with the immediate and long-term challenges associated with whipple surgery. How did or have your dietary habits changed? Has your ability to perceive taste changed throughout the treatment and post-surgical process? What helped (or didn’t)?

pain

whipplelife — Sun, 15 Jun 2008 14:27:26 +0000

A place to share stories of how you have experienced or are experiencing post-operative pain. How did the pain change over time? What helped (or didn’t)?

research / clinical trials

whipplelife — Sun, 01 Jun 2008 09:29:21 +0000

Research is ongoing about how to treat pancreatic cancer and different approaches are taken at various facilities around the country. Share information, insight and experience about new research and/or clinical trials in this section.

organizational Thoughts

whipplelife — Thu, 29 May 2008 09:19:38 +0000

Janet’s comment on the “why whippleLife” page has me thinking more about how this resource can be best structured for effective use. I’m going to try starting topical discussion posts on this main page to address common concerns like the question of diet which Janet raised. Though I’m still working to organize my own story in a chronological fashion for “recovery from the cure,” it seems that making topical recovery point prominent might be helpful.

“Recovering from the cure”

whipplelife — Sat, 24 May 2008 19:16:42 +0000

Following my Whipple procedure I was repeatedly told by various medical personnel that it was the “most extensive surgery we do.” Of course I knew that ahead of time, but the repetition of the fact and the lack of resources available for recovery seemed at odds with one another. If this was such extensive surgery, then why was the recovery and discharge procedure no different from the most routine operations? Where was the “What you can expect” brochure that exists to help patients guide their recovery following any one of a number of common medical procedures.

I had come through the pre-surgical chemotherapy and radiation very well and the immediate physical recovery following the surgery was positive. As various physicians came to examine me I heard, over and over again, “the incision looks great!” and indeed it did. But that was hardly the whole story.

In the weeks after I went home I came to understand that though I was fortunate enough to have received treatment which eradicated my pancreatic cancer, the cure was going to be my biggest physical challenge. I would need to refocus my attention away from having been cured to needing to recover from the process that had saved my life. I realized that the surgery which finally cured me was only the beginning…

Welcome!

whipplelife — Sat, 24 May 2008 17:44:42 +0000

Share your story; share your fears; share your insights. This website is intended to help those of us who have undergone the extraordinary “whipple procedure” and are struggling or succeeding with the aftermath. It’s for those who are “recovering from the cure” for pancreatic cancer.