Which story – of hope or fear – is the best experience to relate to help another?
My story of loss began in August 2004 when my wife was diagnosed with melanoma. An unnoticed spot on her lower back scabbed over and bled. A biopsy in the office came back as testing positive as melanoma. A subsequent nodal biopsy determined it had not spread and “They got it all.” This was followed with a year of treatment with interferon as a precaution.
Six months after finishing that, Bonnie felt a lump in her right armpit. The melanoma was moving, and surgery was performed to remove all lymph nodes in that location in hopes of stopping the spread. CT and PET scans showed the melanoma had metastasized into her liver. This was now spring of 2006 and the only available treatment was IL-2 (interleukin).
This treatment was expensive, only had a 3% success rate and could only be described as hellish. It involves walking into a hospital on a Monday, getting checked into a room, then having surgery to get a neck catheter because of the number of IV bags necessary for the treatment. You are then roomed in a special ward until Friday. There is 24-hour monitoring, hourly blood pressure checks, weight checks every four hours and an infusion of the drug every six hours.
The drug infusion ends when the blood pressure drops so low that it signals the doctors your body has reached its limit. On Friday, you leave in a wheelchair wearing an adult diaper for the ride home because of the side effect of severe diarrhea. Once home to recuperate, you rest in bed with a commode at bedside. By Sunday, you gain enough strength to get out of bed and move around the house. All of this is done knowing it is going to be repeated after a week to recuperate.
Scans performed were inconclusive, so Bonnie went through another two-week treatment. Subsequent scans determined the treatment was not working. The next option offered was when she was accepted to the clinical study of the groundbreaking immunotherapy drug Yervoy (ipilimumab). Unfortunately, she did not respond to the treatment and passed away May 3, 2008.
My story of survival began in June 2014. I had a sore on my chest that was not healing as it should. Having learned from the experience with my wife, I made an appointment with a dermatologist. He conducted a full body exam, took a few pictures and determined the sore was nothing serious and would heal with application of an ointment. But the spot I didn’t know about on my back was a concern. The biopsy came back positive as melanoma. The next week it was removed with an in-office procedure. Full examination of the tissue let us know this was very early stage and still in situ. Follow up consisted of regular exams and in the last seven years there has been no recurrence.
Which story will a person need? A story of success from early detection and survival with minimal treatment, something to build hope and appease fear of getting an exam? Or will someone be served better hearing the worst-case scenario that comes from an exam that was too late, demonstrating how procrastination can be tragic? Then try to mitigate this story with the knowledge of the improved treatments developed since the passing of my wife and the improved rates of survival.
Fear feeds prevention. Hope feeds diagnosis and treatment.
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