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Florida GIST Patients Converge On Orlando

Posted by Bill Davis (bdavis) on Nov 12 2007
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Imagine a group of survivors from a quick-sinking cruise ship swimming through shark-infested water for two miles before, one by one, they reach a small and deserted island. Much like the cast of the TV series “Lost”, these intrepid swimmers congratulate each other for ‘making it’ to land, then begin to figure out how they will be rescued. After weeks of skies devoid of search aircraft, they realize they have to take the matter of their rescue into their own hands and start planning ways to get back to civilization. It's a good analogy for the November 10 of Florida GISTers in Orlando.

Much like the ‘swimmers’ in the make-believe story, a dozen Florida patients met for an afternoon of handshakes and hugging for making it this far through the troubled waters of blood draws, CT and PET scans, surgeries, and consumption of pills that either keep them glued to a toilet seat or make food taste like the inner tubes in Lance Armstrong’s bike. And there was plenty of information exchange about how we, the patients, have to stop waiting for those ‘search planes’ that may never have been launched, and taking our rescue back under OUR control.

It was a delightful session made possible through the efforts of Brad Clark, with a hand from Skip Ryan . Actually, counting the friends and family members, it was a party of 20 that shared stories across the table before the group posed for a post-lunch photo session. I would be remiss if I didn’t mention that Boston listmate Rachel Sorrentino made it to the meeting during an intermission in her family vacation at Walt Disney World.  The honored guest of the group was none other than Dr. Gina D’Amato of Moffitt Cancer Center in Tampa, as willing as ever to answer questions and offer encouragement. One of GSI’s co-founders, Penny Duke, also made a brief appearance but was unable to stay, though the group shared their gratitude to her for the role she played in creating the site that is meaning so much to all of us.

They say assemble a group of determined people and they will come up with a great idea or product. This meeting was no exception, as tumor hosts Bob Spiegel and Bill Davis decided to take on the task of developing a revolutionary new surgical technology…THE BELLY ZIPPER! Having been opened and closed eight times in the past few years, Davis conceded that 50% of his body weight is scar tissue. With only three under his belt (forgive the pun), Spiegel loved the idea enough to apply for a patent and begin prototype testing in his woodworking shop, though no one among the group was willing to step forward as his ‘test track dummy’.

On the serious side, if GIST patients meet in your state, or you just happen to be where the meeting is, go and attach faces to names and share your story. The listeners will be attentive and contributory, and you will BELONG, something we all need, especially those of us who are not getting the kind of support we so desperately need from family members who don’t know how to respond to our ‘new normal’ or resent the disruption it’s causing in THEIR lives. Go and tell of how successful your surgery was or how the side effects were less than expected. Go and show compassion to those whose road is rocky and just need someone to lean on, even if it’s for a few hours. State GIST meetings are a wonderful extension of the support and sharing service that the founders of this precious resource intended to put in your in-box. If you have to, organize your own and spread the word. But keep this wonderful larder well stocked with support for each other.

Last changed: Nov 11 2007 at 7:26 PM

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