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GIST Support International - Live Life Like You're Dying
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Live Life Like You're Dying

by Bob Spiegel    (Florida Bob)

To help put things in perspective about how we should feel about our diagnosis and uncertain future, allow me to point to a brief conversation I had last week at the big cancer symposium in Orlando. When I asked Dr. John Marshall, the chief of hematology/oncology at Georgetown University Medical School, about the future of AMN107, he claimed that he didn't know if FDA approval was near. I followed with the question, "Then all we have in our bag now is Gleevec and Sutent?". His unhesitating answer was, "Think of what you just said, and remember that eight years ago, there was no Gleevec or Sutent...people just got GIST and died."

Personally, I am a realist to the point that I am armed with statistics that tell me I most likely, at the age of 72, have between two and three years left. But, you know what? That's OK with me because I will have plenty of time to get affairs in order and I have the desire to pack ten years of living into these next couple. Living alone, I'm the kind of guy who needs impending company to give me the push to crank up the vacuum cleaner and find a dust rag. If the company comes, everything looks nice. If they unexpectedly cancel their visit, while I am disappointed, my house is still nice and clean and makes me feel good that I no longer have rocks in my living room and leaves in my bed, so 'cleaning up' was still a good thing.

I am motivated by two signs in my home, a commonly available one says, "Life is not measured by the number of breaths we take, but by the moments that take our breath away." It's on my living room wall and I see it only after I have my morning tea beneath a sign on my kitchen cabinet that admonishes, "Life is not about going to the grave in a beautiful, well preserved body, but by sliding in sideways, totally worn out, and proclaiming, "WOW, what a ride!!"

In the past decade since my retirement, I didn't buy a senior community condo and a golf cart --  I bought enough land to build a 1/4 mile racetrack (myself), I erected a 155-foot cable ride, I did my first bungee jump and skydive and my next venture is to go up in a WWII B-17. I am buying jazz concert tickets WAY in advance and in the process of buying an upright bass that I haven't played in more than 10 years and probably never will be employed to play again, but I'll enjoy it and it'll 'take me back'. I need these signs to RETAIN that zest for life. But it's not too late to create it.

I talked with a 47-year-old man from up north for an hour last night. With a large stomach GIST and suffering the side effects of Sutent that has left him unable to work on his beloved cars or go out with friends, he was wallowing in his unexpected misery because he didn't know what else to do and he was gripped by depression. A few simple suggestions lit him up and (hopefully) will motivate him to pursue something that will make him WANT to go on, despite this creature from the black lagoon that may kill us. He may well have helped a bunch of people in the meantime fix their cars, student learn how to do a brake job, and he may discover some new country music artists that he will love (I couldn't help him there).> > I didn't mean to stick my chest out here because I do have my emotionally fragile moments with the uniqueness of my particular GIST, but I like to amaze people with how I look and what I can do with this so-called 'death sentence' hanging over me. And I love to make them laugh.
Yesterday morning, I was in tears on my keyboard responding to some gut-wrenching posts when a phone call came from an old radio friend from New Orleans. Within minutes, I was roaring with laughter, but still crying.

I guess my point is not so much 'Go out fighting' as much as it is 'Go out living'. Learn to laugh that your epitheloid tumor looks like your best friend's brain, or that you're causing all of your oncologists to quit and move after your first consultation, suspecting that it could be the AK-47 and ski mask you take to your appointments. I laugh when I put my Wheaties back in the refrigerator or learn that hard way that putting your grape juice next to the Windex refill bottle in your pantry is a bad idea (it may be small but I've got the cleanest stomach in town).

When people pointed out that I was getting a big tummy (due to abdominal hernias post-surgery) I blamed it on my yard sale buddy for getting me pregnant.  I know where I'm going to wind up, I just don't know when,  but it doesn't matter. I just want to go out leaving nothing unexperienced (tomorrow is my audition for "Dancing With The Pigs"). And yes, my faith has helped keep this viewpoint because I know God also has a sense of humor because he created ME.

Fla Bob



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