12 Sep My Transitional Act
My Transitional Act began in a hotel room in October 2006. It opened with a very strange to me activity, eating a hamburger in my hotel room at 10:00 pm. I felt as though some of the burger was stuck in my throat. I could feel the lump with my finger when I probed. I couldn’t see anything in the bathroom mirror and so stuck the lens of my ever handy camera in my mouth and hit the exposure button. When I checked the picture, there it was, in vivid, living color. A big, lumpy red, yellow and white mass covering more than3/4 of my throat. I was on a business trip in Boston to get an update from the CT manufacturer I worked for. And so, the next day I visited the manufacturing bay and asked one of the engineers to scan my throat. “We don’t know how to scan people, just phantoms.” he said. “Don’t worry, I’ll program the scanner. You just line up the start of the scan where I tell you to and hit the start button when I say Go.” The scan was completed and sure enough, as we saw the images start to display on the CT monitor, there was the tumor and surrounding huge lymph nodes. My Stage 4 Tonsil cancer journey commenced in earnest that day.
My employer was most supportive and asked only if the tumor images could be used for marketing purposes as they were the first clinical images with pathology of that sort their scanner had produced. Of course! My cancer pictures were going worldwide!
I flew home to Nashville the next day and began shopping for an oncology ENT for biopsy as well as an oncologist who specialized in head and neck cancer. I wasn’t taking anything for granted and wanted to get the diagnosis and treatment timeline established as quickly as possible so I could get back to my life. In the week waiting for the pathology report to be released I tried to not think about what was potentially going to be happening. The day the pathology report was released was the day of my consultation with the HNC oncologist. “It’s not good news.” she said.” Your cancer is advanced and has spread extensively. The treatment could very well kill you.” “Well, the cancer for sure will kill me” I said “so let’s go! “ We agreed I would bring the willpower and fortitude to withstand the treatment and she would support me medically to get me through it. The next day I had my port inserted, the day after I flew to Houston to sell a CT scanner and the day after that I started my 24/7 chemo therapy to get my tumor ready for the introduction of radiation. What I thought was going to be a 4 month detour from my road of life was actually a completely new road with no map, no navigation tools and no sign posts. The four months I expected to be needed to complete treatment and recover sufficiently to return to work turned into over one year of being unable to speak with an audible voice or swallow food or drink by mouth without them going into my lungs. Recovering from aspiration pneumonia as a result of trying to drink weakened me further. 18 months after commencing treatment, after tracheostomy to facilitate breathing, speech pathology lessons and exercises to learn to swallow without aspirating and 40 hyperbaric dives to promote healing from the radiation burns I was finally ready to return to work. Unfortunately, an MVA had other plans for me. Another long year of rehabilitation delayed my thoughts of and ability to return to work. By that time the economy had tanked and Obamacare was gaining momentum and the medical imaging industry was undergoing significant changes. My employer could no longer offer me a position. It was time to become an entrepreneur. I decided to upgrade my photography equipment and skills, and build my own employment and future. Treatment and recovery from treatment is now well behind me. Lingering effects from the treatment is seemingly still causing some employment issues due to the misperception that I am “sick”. I’m not – I’m healthy as a horse! However, the misperception is understandable. Radiation treatment, that so effectively killed the cancer, left my throat scarred and my esophagus and trachea significantly narrowed. Compounding the issue is the flapper that keeps food and liquids from going into one’s lungs is stuck open. As a result I cough. A lot!
But, despite the misperceptions, I work and keep myself well involved and well occupied. I have turned a passion for photography into a thriving photography/videography business, particularly specializing in photography portraying women’s natural beauty and promoting local musicians via social media. And, I actively volunteer at Vanderbilt-Ingram Cancer Center in Nashville to help others in treatment and to raise public awareness about head and neck cancer and to raise funds to patients experiencing financial difficulty due to the rigors of radiation therapy.
My tonsil cancer journey has brought me into contact with a number of medical and other head and neck cancer folk. I have learned that there is precious little public awareness about head and neck cancer. I have learned that research for finding ways for prevention, diagnosis earlier than stage 3 or stage 4 and kinder/gentler yet still effective eradication treatments is really struggling due to lack of funding. I have learned that long term effects of radiation are ongoing and often manifest themselves after 5 years, the milestone at which one is deemed “cured”. And so, the current treatment for head and neck cancer is quite effective at attacking and killing the cancer and equally effective at attacking and diminishing quality of life after treatment, by affecting breathing, speaking and eating.
And so, at the beginning of 2014, my Second Act began in earnest. I launched a new project called Faces of HNC to raise public awareness and needed research dollars for head and neck cancer. The first project Faces of HNC is working on is producing a photo coffee table book featuring stunning landscape photography from across our glorious country and highlighting HNC people’s stories from those areas. They will share, in their own words, the impact their HNC diagnosis and treatment has had on them and those around them and how they are faring after treatment. All proceeds from the sale of the book will go directly to head and neck cancer research.
Faces of HNC 501(c)(3) paperwork is in progress which will allow tax deductible donations to be made by individuals and corporations.
My work with musicians has prompted songs being written for and licensed to Faces of HNC which will both raise public awareness and those so needed research dollars for head and neck cancer.
I believe one voice can sound the rally cry to encourage other voices to join in – to speak for the voices lost. Together we can make a difference. We can spread the word about head and neck cancer. We can ask others to join the movement to raise the needed research dollars to find the prevention, the earlier diagnosis, the gentler effective eradication treatment so HNC people can enjoy a good quality of life after their diagnosis.
I love my Second Act! I can’t wait to see where it takes me next!