One of the books we recommend in our short list is Dr. Arthur W. Frank’s At The Will of The Body. It is a quite wonderful, very honest, deeply personal and intimate account of a young man’s tribulations, courage, inner strength, and survival in the face of cancer. It is well worth your reading. Dr. Frank, a deep thinking sociology professor, wrote a subsequent book called The Wounded Story Teller. (Univ. Chicago Press, 1995). If you are into the spiritual and philosophical dimensions of illness, the deeply human experience of sickness itself, you may find this to be a rather masterful and scholarly piece of work. It is not, however, ordinary high school reading.

I mention Arthur Frank’s The Wounded Story Teller because in the sense that we recognize our mortality we are all “wounded” story tellers on this planet. None of us are getting out of here alive. And all we can really do about the nagging wound of our mortality-- especially when it seems impending or near - is to tell or record our story for persons or someone who might care.

Telling our story is an instinctual human need. From the earliest days when our ancient forebears disposed of their dead and pondered their own similarly inevitable fate, they painted and carved images on the rocks of their caves. They didn’t know it then, but it was occupational or art therapy.

Their urge to cut and carve on bark and stone was the ancient manifestation of our species’ instinct and destiny to develop and leave meaningful and decipherable records. Why was that need so deeply and recurrently felt?

I submit that from the earliest times when our human ancestors first understood the fatal defect, wound, or flaw of our mortality. that we have all been, in that sense, “wounded” storytellers. Why tell our story? What more can gravely ill and sentient wounded persons do than to hang on, pray, and try to tell their stories while they can? Have you got some better idea for them, or for yourself?

Do you not think that our human need to leave a personal record or message is an instinctual and ubiquitous one in our species? Why else, but to leave a message that tells their story, do young lovers carve their initials in the trunk of the sheltering tree that witnessed their ardor? The desire and need to leave this kind of very human record is something much different, I believe, than a mere extension of an animal’s instinct to demarcate its mating territory. The lover’s carving too is that of a wounded storyteller, shot through by Cupid’s arrow. I didn’t make this Cupid arrow stuff up, you know. I’m just telling it like it is, and always has been.

All of our recorded history, I submit, is also in part an expression of our species’ existential anxiety and our resultant therapeutic need to tell our stories of our epic battles, our myths of heroes and villains, and our individual experiences as well - to leave a record, a message in a bottle, so to speak, from the tiny personal islands we inhabit in the cosmos of infinity. Telling our story is our only compensation, our only revenge, if you will, for the deep psychological wound of our protoplasmic mortality.

And so, that need to tell our wounded stories has come a long way from primitive gestures and grunts about chance, mutually suspicious, and risky encounters at watering holes and forest fires. It is that very instinct to push on, and share our wounded stories, that may have cracked open the first narrow passage ways of oral language that have been essential for the development of our subsequent verbal and increasingly technical and formidable civilizations that still rest so precariously on the successively carved rocks, printed pages, and digital bytes of our current human literacy.

Kilroy Was Here, And So Are You

Among the more scholarly, detailed and historical records of the sacrifice, bravery and insane horrors of WWII was a simple, but eloquent and echoing, three-word message that kept saying, “Kilroy was here.” Kilroy was an enlisted man, a “grunt”, who left these three small words everywhere he went. I never knew Kilroy, or whether he ever got a Purple Heart – but I can tell you that Kilroy was a wounded storyteller, just as prisoners who carve dates and initials on their cell walls are wounded storytellers.

Surgeries aside, you dear friend with GIST are more likely to have been wounded, rather than merely scratched, by GIST. If you are indeed wounded, and if there is no more that surgery can do for you at the moment, and while continuing your medication you are still hurting - then tell us your story. It is the only additional treatment I know. I have told you mine - several times over - and I feel much the better for it.

I feel it is a privilege for us to tell our stories. Personally, it has been a comfort and a blessing for me to know that there are GISTmates on this List who read or listen to my words, and who might likely understand and care especially about one aspect or another of my story. There is nothing that I know, absolutely nothing at all, that can be better therapy than telling your story.

I can, and perhaps shall write a number of things for our GSI Psycho-oncology Page. The most valuable and precious thing we can offer you on this psycho-oncology Page, however, is the chance to tell your story to people who are here with you, and who care about what you write - in your own words, and over and over again, until you get it right. We are all wounded by GIST, in one way or another. Don’t know how to start, or go about it? Let me give you a small example.

Marina Was Here and Still Is, Thank God

Here is a brief story from one of our favorite storytellers, Dr. Marina Symcox who, along with some others, repeatedly urged me to help our Listmates by setting up a GSI psycho-oncology Page. Toward that end, Marina gave me permission to “rummage through” (her words) her numerous e-mails and pick out any and all of her posts that I felt might help us all to build this PSI-ONC page together.

Rummaging through Marina’s posts is a pleasurable but not quickly accomplished task. About a third of the way through, I found the following, and thought it would do just fine. I hope you agree. The thread began with Vince, a loyal poster of whom we are all fond. Sometimes he writes serious posts in funny ways, and funny posts about vanilla coke in quite serious ways. Vince posted the following to the List:

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“June 17th was the 3 years since my original GIST operation and I did not even remember. I will go next week for my qt scan."

Vince

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Marina replied with a 6-21-04 post as follows:

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Hi Vince,

I think that forgetting an anniversary such as a cancer operation is a good thing. Your memory lapse is a sign that your life has moved forward, and the events of three years ago are slipping to the back of your mind. Smile Vince, that you forgot.

My original GIST operation was Pearl Harbor Day 1997. I was 38 years old with a liver engulfed in innumerable inoperable metastases. The surgeon estimated that I had 3-5 months to live.

During his last visit with me in the hospital, the surgeon stuffed a small piece of paper in my hand. He said, "Here is my home phone number. You may call it any time, if you need to talk. If I am not home, you can talk to my wife. She is understanding." The Tulsa pathologist had already determined that I did not have a carcinoma of the small bowel, but rather a sarcoma of some form, which would need expert management. Within a day of my surgery, my newly appointed oncologist had advised me to go to MD Anderson. On this last day of my hospital stay, the surgeon leaned over and said, "Go to MD Anderson. Maybe they will have something for you." Then he leaned over and whispered in my ear, "But I doubt it." He pulled himself up, and left the room. I remember staring blankly at the hospital wall, and at the moment I was removed forever from "the garden of Eden of my own immortality."

I think that I will have opportunity to meet up again with this surgeon this summer. His daughter wants to spend the summer working in my friend's vet clinic. My vet friend wants me to meet up with him too, as she witnessed what did happen to me over the 34 months following that surgery. I want to tell him that in Jan 1998, the month of my first visit to MD Anderson-where the sarcoma center gave me no hope at all, a Japanese team published an article in Science Magazine describing gain of function mutations in the c-kit gene of GIST tumors. Even if I had seen that article, I could not have understood the significance.

Ultimately, that article would change everything for me, but first there would be the three years of no hope, near death in hospice, black despair, a desperate 8 hour liver surgery, chemo embolization, and multiple toxic chemotherapy treatments.

I want to tell him about my husband, my hero, who saved my life. He fought every single day during that time to keep me alive, he never left a rock unturned, he was clever, level headed, and through grit and determination made things happen for me--as I struggled each step of the way out of discouragement and terror-- and by the most improbable set of circumstances he hand carried me to my first dose of gleevec just as my time remaining had trickled to perhaps one month, or maybe two, but certainly no more than that. Now that I am better, I do his laundry.

Marina

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There are many things I could say about Vince and Marina’s post - all good, mind you - but I won’t. Vince and Marina’s messages are healthy ones that call for no professional opinion. What I shall offer instead, as I would for any of you, are simply the considered thoughts and reflections of a GIST companion who happens to be the father of a lovely daughter Marina’s age, and a fellow traveler who has been on the road for a long time and knows something of the territory we travel.

Suffice it to say that Marina’s post is indeed a wounded storyteller’s tale - and a poignant and powerful one at that. Was it not Nietzsche who claimed that afflictions that did not kill him only made him stronger? Could it also be that way with Marina and her GIST? Perhaps the long, intense and recurrent heat of Marina’s sarcoma may somehow have annealed her.

I sometimes feel that GIST which has so diminished her and many of us in deeply painful ways, has also made Marina, in other ways, a much larger and stronger human being - at enormous and outrageous cost, however, to herself and her young family. I want to state that as Listmates, however, we are heartened and each somehow strengthened, I believe, by that young Symcox family which has thrived so remarkably to date in the face of the uncommon, sarcoma we share. That is not a sentimental observation, but my wish to point out to each of you that our shared identity is another essential and powerful part of our psycho-oncology and intuitive therapy for ourselves here on GSI.

Therapy? I think so. No? OK, let’s look at their posts. I suppose you agree that Marina helped Vince, and no doubt she did. But, it was really our Vince who helped Marina. He helped her to vent. We all do therapy intentionally or unwittingly in our relationships with each other. We are either therapeutic or anti-therapeutic. Few of us are so bland, saintly, completely mature, or “well-analyzed” as to consistently neutral.

And so, in any meaningful relationship, unintentionally or not, we leave each other feeling either better or worse, if only for the moment. When I was a psychiatric resident one of our bright smart-alecks opined that psychotherapy is an ongoing verbal relationship between two people, one of whom is sicker and feeling worse than the other at the time. We laughed, but how could we argue?

Our PSY-ONC page and its posts, like all of our posts, are meant to be interactive, freely expressed and well-intentioned voluntary expressions from calm or beleaguered persons of good will. If you are in a calm and meditative mood, or gnashing your teeth in rage, we are in this together and PSI-ONC is the page for you.