One voice at a time – a head/neck cancer survivor speaks
What is head/neck cancer? It is any type of cancer that originates in the cranial sinuses, the mouth, or the throat. It does not include brain tumors or thyroid tumors. Why do we need a
What is head/neck cancer? It is any type of cancer that originates in the cranial sinuses, the mouth, or the throat. It does not include brain tumors or thyroid tumors. Why do we need a month of awareness for this type of cancer? Head/neck cancer (HNC) is not well known. It counts for about 3-5% of all new cancer diagnoses in the USA each year. Or, about 81,000 people each year. In the big picture of things this is considered an inconsequential number of people affected. But, the effects of the cancer and the treatment to eradicate the treatment has a most consequential impact on those 81,000 people every year.
10 years ago I was at the height of my professional career. I was on a business trip and after a late meal felt a lump in my throat. When I photographed my throat I could see the lump was a big, ugly, red, yellow and white mass. As I was working for a CT scanner manufacturer, after my meeting next day I visited the engineering bay and asked the guys to scan my neck. I programmed the scanner, directed the engineers where to begin the scan, and together we watched the images develop on the scanner monitor. Little did I know how my life would take a course that I could not have imagined at the time. And I didn’t know then I didn’t have a roadmap or any sort of navigation.
When I returned home from my business trip I shopped for an ENT surgeon to perform a biopsy. As the surgeon laid out the core biopsy punch needle and the specimen container I asked if it would hurt. He said “If it hurts that’s a good sign.” He said nothing more as he took several core biopsy specimens. I didn’t feel a thing. He told me I’d get the pathology report in 7 days. During that interval I started shopping for an oncologist who specialized in head/neck cancer. I didn’t know a lot about HNC, but I knew that I needed a specialist to both eradicate the cancer and give myself the best possible outcome after treatment.
The day my pathology report was released was the day I had my first consultation with a medical oncologist who had a good record in treating HNC. I asked her to be straightforward about the status, the treatment plan and my potential for a good outcome after treatment. She was blunt. She said it didn’t look good. She said the treatment could kill me. I figured the cancer would kill me so may as well go down fighting. The treatment plan was set out. PET/CT for staging and to ensure there were no other tumors lurking. Port inserted. Fly to Houston to demo and sell a CT scanner. Begin 8 weeks of 24/7 infusion pump along with weekly infusions of three chemo agents, 5FU (Fluorouracil), Taxotere, and Cisplatin induction chemotherapy. I told her I really liked the name 5FU because that’s what I wanted to give the cancer – 5 FUs. Then, 8 weeks of 5 days a week radiation, lose the 23/7 pump and continue with the weekly infusions. I did well with the induction chemotherapy. Yes, my hair (every hair of my body) fell out, but one can get by without hair. I kept up the pace of my job and had a banner couple months of sales. By the third week of radiation I had lost my voice and my ability to swallow. A PEG tube was inserted and my nutrition was continued. Except the nausea and vomiting had set in with a vengeance. A puke bowl was my constant companion. I recall wishing I could give the experience away for just 5 minutes so I could have a few minutes rest. But I couldn’t think of a single person I’d give it to, so I just hunkered down and doubled my determination to just get through the experience. “This, too, shall pass” and “if you can make it just 30 more seconds you’ll be ok” became my daylong/nightlong mantra. At long last I completed my final chemo infusion session and my final radiation session. I’ll never forget because it was on my birthday. I felt that was auspicious. Like I had a second birthday – the beginning of the rest of my life after the end of the battle for my life.
As I tried to recover from the effects of treatment – recover my energy, recover my voice, recover my swallowing – I asked every doctor, nurse, therapist I met, “What can I do?” The unanimous response was “You’re lucky you’re alive! What more do you want?” I felt I didn’t fight so hard to live to merely exist. I wanted to get back to my life. It still hadn’t dawned on me that what I was before treatment and what treatment had transformed me into were two different types of human beings. It took a few years, and lots of seeking solutions for breathing, eating, talking to realize that I would no longer look, eat, speak, breath the way I did before treatment.
I searched and struggled to find the needed support, treatments, services I needed to recover physically, emotionally, and financially from my HNC treatment. I asked lots of “Why not?” questions every time I learned the services and products I needed and expected to be available were not. I started asking “Why is no one doing something about what’s missing?” And right behind that I asked myself why I was not doing something about what was missing. And so Faces of HNC was conceived.
Faces of HNC is a Tennessee based 501 (c)(3) dedicated to raising awareness and resources needed for Head/Neck Cancer survivors to help with quality of life after treatment. We raise awareness with events, speaking engagements, articles in magazines, blogs and social media. Faces of HNC has joined forces with Women Survivors Alliance and Survivor Collection to promote the celebration of HNC survivors with addition of Blazing Red to the beautiful collection of cancer survivor themed jewelry.
And, a new item to the collection – “The Debra.”
February 2017 I celebrated my 10 year anniversary of the last chemo/radiation treatment and my new life. I wanted to do something to put a mark on the milestone. I was invited to attend a book writing boot camp and afterward knew partnering with Canadian publisher, Black Card Books, to write a book was the way to gain wider audiences for Faces of HNC’s awareness work. The book, “My Voice – How to Transform a Wall to a Bridge of Success” is scheduled to be released Fall 2017. We are excited about the attention it’s received already! Please, go to http://www.facesofhnc.com/ to follow development of the book and to purchase your advance copy.
This month of April please think of the 81,000/year people who have been diagnosed with HNC. As you breathe, speak, eat, drink give a minute to think of those who cannot due to the treatment for their cancer. As writer of songs and singer of them, Dawn Beyer says, in “Somebody’s Voice,” the song she wrote to help with Faces of HNC awareness work, “Send more than a prayer, give more than a word, just really be there.” And my favorite line of “Somebody’s Voice,” “think of what we could do if we would just follow through . . .”
One voice at a time we can make a difference, can direct the resources where they need to be to help people who have lost their natural ability to speak, eat, breathe as a result of their battle for their life.
Thank you for being Somebody’s Voice.