Chordoma Foundation

Doug’s Uncommon Story: I’m very sorry

Doug uncommon chordoma story

I am 62 years old and have worked in hospitals since 1975, so I was used to being on the outside of people’s pain and anguish. I had no symptoms, but I had stomach surgery on August 2, 2017. I began suffering a lot of pain in my shoulders, and the surgeon decided he’d get an MRI of my head and neck to see if there was a reason for the pain. He found nothing, but the radiologist found “a cyst.” They scheduled an appointment with a neurosurgeon to whom I went a couple weeks later. The surgeon began explaining a fairly elaborate set of diagnoses and methods of removal, which I took in as non-emotional data…right up to the point when she stood up, cocked her head sideways and said, “I’m very sorry.” Suddenly, I realized this was real, about me, and not so good

My chordoma is still completely contained inside the clivus at this point, but the radiologist said that the edge was eroded. So, after lots of research, YouTube videos, testimonials, a second opinion from OHSU in Portland, and looking into proton therapy … my wife and I decided that we would wait three months and have a set of follow-up MRIs, in the hope that the current state may have been this way for 20 years or more! That being the possibility, we’re hoping to just monitor its size by having MRIs every six months, or possibly having proton therapy (if our insurance will pay) to shrink it. If things turn out differently, we may need the surgery (not a fan). My lovely wife needs me around so we can work together for the Lord in our retirement. We hope to go on many mission trips helping people. So, I do want to do the best thing for us. Thank you to those who share your stories. This is not where I want to be, but I think God wants to give me a good challenge! I hope I can make good of it!

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