In September 2007, I was diagnosed with sinus cancer, specifically in my left sphenoid sinus. As my oncologist said, it was a rare cancer and the type of cancer that didn’t belong where it was. I never do things in the usual way.
What followed was 6 weeks of radiation, 4 weeks once a day, 2 weeks twice a day. In between, I had two rounds of chemotherapy. When treatment ended, they sent me home to recover. That recovery has taken years. But understand – the recovery from treatment, although slow, was accomplished in months, with several smaller steps done over the years. These years have been spent assimilating the process of disease and the aftermath of treatment.
What I found along the way were physicians who lacked the curiosity to understand what my symptoms were and who more proficient at ordering tests than listening to their patient. But what I also found were incredibly humble physicians with the experience, knowledge, and listening skills to find my way to diagnosis and cure. Included among them were nurses, physician assistants, lab technicians, and even receptionists who cared for me, answered my questions, and supported my wife and family as caregivers.
It was frustrating, frightening, and times revealing. Or as I recently read, you don’t know what being strong is until being strong is your only option.
Following treatment, I started a blog, putting up photography and original writing, posts about my love of books and the written word. It was a path I was on more than 30 years ago but left to pursue a more profitable career. But as I progressed, I became more curious about the disease that I confronted. Along with my research, I stumbled on communities of survivors and caregivers, as well as organizations to support them.
One was SPOHNC, Support for People with Oral, Head and Neck Cancer. I signed up as a volunteer and became part of a “buddy” network, where they matched me up with cancer patients who similar diagnosis and treatment that I did. Walking thru the process hand in hand, I learned as much about myself as I did about them. I also learned how unprepared we are by the medical industry, how terrified they were of the unknown, and how relieved they were to talk with someone who had gone thru what they were facing now.
Now I find myself drawn more to the side of the patient and the new frontier of patient advocacy. This blog is an attempt to continue to develop that.
Cancer is a very personal and intimate disease. And most likely the most devastating diagnosis you will ever receive. I hope to relieve that burden. And provide for you what I can.
Onward we all go!
[Feel free to email me at firstname.lastname@example.org with any of your questions. I’d be honored to answer them.]