Living with cancer

I have a rare cancer described by doctors as “high risk.” As bad as that sounds, it’s not as bad as it sounds. Thanks to a targeted cancer drug called Gleevec (generic name is imatinib) my “high risk gastrointestinal stromal tumor”--or GIST--has a pretty good prognosis. A very expensive pill I take every day is designed to keep the cancer away.

Small indolent GISTs are considered benign. Not mine. Based on a number of criteria, including size of the tumor and mitotic rate (check your old biology text or follow the link), my GIST was cancer. Diagnosed almost two years ago, surgeons at the University of California Moores Cancer Center in San Diego removed the tumor along with part of my stomach in September of 2017. It’s taken me this long to report about my experiences living with cancer because it’s been difficult to write about. I keep asking myself, will what I have to say be meaningful to readers? With that in mind and the passage of time I believe I have enough experiences and insight to share my observations. I hope by telling this story it will contribute to better understanding the dreaded diagnosis of cancer.    

The first question I’m often asked is what led to my diagnosis. The short answer is Mexican food. I started having chest pains one evening after attending an afternoon charity fundraiser where they served some of the most delicious tacos I’d ever eaten. So, in the words of one my doctor’s notes, “After dosing with tacos (patient) experienced chest pains and went to the emergency department for evaluation.”

When you show up at the emergency room complaining of chest pains they don’t make you wait. I was rushed immediately to the treatment area and hooked up to an EKG. After four hours that included a chest x-ray, blood tests, a thorough examination and medical history, the ER doctor told me my heart is not the problem. “Follow up with your internist,” he added. So, over the course of the next two weeks I was referred to a gastroenterologist who ordered an abdominal ultrasound that revealed a “mass” growing somewhere in the neighborhood of my pancreas, liver, and stomach. Needing a clearer picture of what was growing inside me, the doctor ordered a CT scan of the area for a better look.

A few hours after my date with the scanner, the doctor called to tell me what the scan showed. The most encouraging words on the radiologist’s report were that it did not appear the mass was on or within the pancreas. But an actual diagnosis would require more tests, specifically a biopsy to find out what type of tumor was growing in my gut.

To be continued?

If you find this interesting and want to read more about my experiences with cancer please let me know. If you think this will be helpful to others, share it widely. Based on your responses I will decide whether or not to continue reporting my cancer chronicles. Topics I hope to cover include the psychological, physical, and financial demands on cancer patients and their families. Of course, my experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

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