Part VI: How GIST and I Became Acquainted

Moving back into the light.
PUBLISHED August 25, 2015
Marcie lives in Southern Maine and has a technical communications background. She underwent professional voiceover training and is currently an independent, contract writer in the process of building her copywriting business. She is also a (fairly recently) reformed health nut who enjoys reaching out to others in need of support.
This is the sixth and final part of my story. Read the first, second, third, fourth and fifth parts.

Settling back into home life included many new complexities. My sister was here from Alaska for two months, helping me do the many things I was still unable to manage. My gratitude for what she did knows no bounds.

An occupational therapist showed up to check out my lifestyle and see if anything needed changing. Clearly, many things needed to be changed, but she didn't mention any of those. She took a quick look around and declared the premises safe for the new me.

A visiting nurse came by every day to ensure that I never had to miss a daily needle stick, but mostly because I was on Coumadin for stroke prevention. Thank goodness I wasn't forced to go cold turkey on the regular bloodletting.

Then there was the physical therapist, a distractingly lively and energetic Latino woman who was always dressed to the nines, which served to remind me of how far I had let myself go throughout my ordeal. She put me through the paces which, at that time, seemed unreasonably difficult. I now do those same exercises daily, with barely a second thought.

For the first year, there was no weaning off the high volume of doctor-patient interactions after a month in the hospital; the immediate benefits came from being allowed to shower at will before donning my own clean clothes and driving to their offices. And, I got a lot of reading done in their waiting rooms, aptly named.

As my mobility improved, the walker was relegated to the attic, replaced by a leopard print cane. When I was cleared to return to work, using that cane among so many younger fellow employees made me feel self-conscious. There was no need for that; I had been gone long enough to be elevated to a one-time 'rock star' status among the many I knew at the home office, and relished the attention. It turns out that when people think you are near death and then see you again, their fear and panic instantly morphs into erratic bursts of welcoming expressions. Everyone was so nice that it made me wish all of us could go through major medical challenges in a less-scary, much less expensive way to bring about this kind of result.

The surgeon who freed the GIST from my abdominal area recommended that I see an oncologist to discuss aftercare. I was the oncologist's last patient of the day, but not his best. We didn't mesh well from the start and when he reprimanded me for being upset about what had happened, I knew there would be a different oncologist in my immediate future. The fact that he prescribed Gleevec to me, knowing I was taking Coumadin every day, and responded to my question about a drug interaction by running out of the room, then returning to say there was no problem, sealed it. I already knew there was a serious drug interaction between Gleevec and Coumadin so there was no way I was going to take them together, or ever languish in his waiting room again.

To find a new oncologist, I started online research and located a few who had received favorable patient reviews, then selected one of them for some stealth research. My sister and I drove to her office and I asked for the doctor's scheduler. I was directed to the woman's office and said I was considering joining the practice; could she tell me anything about Dr. C? She replied that Dr. C. was incredibly nice and that she was sure I would like her. That worked for me so I went through the lengthy process of securing an appointment.

Dr. C. was more than nice — she was, and still is, amazingly intuitive, appropriate, kind and above all, extremely competent. There is a measurement tool to which GIST patients can refer, called a nomogram. I had found it online and plugged in my numbers to see what my overall survival rate should be. It looked quite good so I printed out a copy for my first appointment. When she pulled a copy of the very same nomogram from my new file, complete with my personal stats, I knew I had found my doctor.

Tuning up the rest of my medical team involved several interview appointments and a lot of online digging, but I ended up with a fine group to help manage my ongoing care.

Of equal importance in support of continued survival was the purchase of many helpful books, such as:
  • "After Cancer Care: The Definitive Self-Care Guide to Getting and Staying Well for Patients After Cancer" by Gerald Lemole, Palev Mehta, Dwight McKee
  • "Never Fear Cancer Again" by Raymond Francis*
  • "Never Be Sick Again" by Raymond Francis*
  • "Overdosed America" by John Abrahamson, MD
  • "Here For Now, Living Well With Cancer Through Mindfulness" by Elana Rosenbaum
  • "Anticancer, A New Way of Life" by David Servan-Schreiber
  • "The Food Pharmacy" by Jean Carper
  • "Death by Prescription, the Shocking Truth Behind an Over-Medicated Nation" by Ray Strand, MD
  • "What the Drug Companies Won't Tell You and Your Doctor Doesn't Know: The Alternative Treatments That May Change Your Life" by Michael T. Murray
  • "Worst Pills, Best Pills: A Consumer's Guide to Avoiding Drug-induced Death or Illness" by Sidney M. Wolfe, et al
  • "The Book of Awakening: Having the Life You Want by Being Present in the Life You Have" by Mark Nepo
* As much as I enjoyed Raymond Francis' books, his rules are quite stringent and not for everyone.

When not reading, I spent lots of time buying, sorting and taking vitamins and supplements, as a result of extensive research. From EPA/DHAs to black raspberry extract, the daily number rose to about 48 pills, and I take most of them still. I'm a strong proponent of the placebo effect. I think that whether they actually work or not based on their own merits is irrelevant; I believe they work and have seen how effective that kind of belief can be for me.

Then there is the food, which, according to Jean Carper in “The Food Pharmacy,” and many other smart people, is what it's all about. Potato chips, once my daily staple, are banned, as is any more than an occasional foray into the mystical world of white sugar. Much of what I cook is now seasoned with turmeric or ginger, the two herbs hailed as the best cancer fighters in their class. I am now familiar with the 'dirty dozen' produce items that contain the most egregious amounts of pesticide (is any poison OK?), and only buy organic versions of those. Everything else gets a vigorous rinse with filtered water, vinegar and baking soda. Is it time-consuming? Of course. Is it worth it? Only if you enjoy being alive outside of a hospital setting. I am one of the converted in that area.

I lost forty pounds altogether, at which point my doctor said I had gone too far. That's just like me, so I promptly found ten of them again. Every day, I listen to Glenn Harrold's “Heal Your Body” recording, which encourages the listener to conjure up a blue healing light designed to engulf any illness in the body.

Gratitude is what I feel toward my family (for being there when I was most in need), friends (who came around with gifts, food, stories and support), expert medical professionals (who stepped in for the heavy lifting), and the Internet (for providing buckets of needed information quickly and fully). I don't know what comes next, but whatever it is, I know I can handle it.
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