Editors note: This article was one of a select few chosen for the inaugural print edition of Unconditionally Her which debuted at SURVIVORville 2017. We are grateful to Debra Sheridan for ALL of her contributions to the Women Survivors Alliance and for her inspiration for all cancer survivors, especially for those impacted by head and neck cancers.
My name is Debra and I’m a laryngectomee. This means my voice box was surgically removed. I didn’t have laryngeal cancer, I had tonsil cancer. I was a nonsmoker, social beer drinker, hale, hearty, deemed obscenely healthy by my family doctor, medical imaging systems sales professional specializing in cardiac cath labs and CT scanners. 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. My education and training as a CT technologist reminded me “ugly is bad.” As I was sales manager for the center third of USA for a CT scanner manufacturer, after my meeting next day, I visited the engineering bay and asked the engineers 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 then how my life would take a course that I could not have imagined at the time. I didn’t know then that I didn’t have a road map or any sort of navigation. It took years for me to accept that the life I had before my diagnosis had been eradicated along with my cancer, and I was not prepared or equipped to cope with the aftermath of treatment.
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 (HNC). 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 I 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, but 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 of 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, and 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 The Survivor Collection to promote the celebration of HNC survivors with the addition of Blazing Red to the beautiful collection of cancer survivor themed jewelry, and, a new item to the collection – The Debra. Please visit the website to see more of this beautiful jewelry collection. https://www.womensurvivorsalliance.org/shop/
One recovery tactic I used to overcome chemo brain was revival of my love of photography. By seeking out photography projects I was able to put practice and repetition of what I knew about photography from independent and professional study to grow a photography and video service that is the main sponsor of Faces of HNC for awareness work. Current major project is a comprehensive patient information video series, produced in conjunction with Princess Margaret Cancer Centre in Toronto, Canada. Stay tuned to Faces of HNC to learn more! To learn more about how I used photography to recover from chemobrain please check out this link!
http://www.noumagazine.org/sharing-vision-the-fun-of-photography/
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.
So, why is this article called One Woman’s 5 Voices? My first voice was the voice I was born with. The voice I presented my products with, to groups of one or two to one thousand or more. The voice I did video voice overs for. The voice I sang with. The voice I told my son I loved him with. When tonsil cancer treatment took that voice, a year after completing treatment I underwent tracheostomy (breathing hole in the neck) I received my second voice thanks to a Passey-Muir Speaking Valve. At first I wasn’t pleased with my new voice. It was high pitched, monotone, and at times would unexpectedly honk like a Canada goose. With determined persistence, practice, and patience I learned to play that speaking valve like a musical instrument. I was recovering well from my tonsil cancer treatment and was ready to return to work when – Bam! Two days before flying to Boston to resume my sales duties I failed to negotiate a curve on a Tennessee backroad while riding my beloved Harley-Davidson motorcycle. A helicopter ride to Vanderbilt, trauma laparotomy, and two weeks in the trauma unit meant my stoma (breathing hole) was dilated and my speaking valve no longer worked. It took another year of no voice trying to find a viable solution. At last my surgeon found a company who would make a custom trach tube for me so I could use a speaking valve again. This valve was different to the first, and once again I learned how to play it to my satisfaction. The effects of my tonsil cancer treatment meant the tissue damage continued to deteriorate, finally to the point of affecting my overall health. My esophagus had closed down, my epiglottis was no longer functional, was wide open, and I was enduring multiple bouts of aspiration pneumonia. It was time to protect my life and a total laryngectomy was performed, with rotation of my left pectoral muscle up to form a new airway to replace the diseased airway that was cut away. Muscles, blood vessels and nerves from my left forearm were transplanted to replace the damaged portion of my esophagus. I came out of that surgery with a tracheoesophageal puncture and an implanted voice prosthesis. That voice initially was whispery, low pitched, with little intonation or modulation. With time and practice I learned to interject a little inflection but truly my ability to produce subtle voice changes to express my thoughts or feelings was limited. I found I had to remind people I wasn’t angry, it was just the sound of my voice. Because of the extent of the tissue damage, and the resected area of my esophagus closed down, I needed a second esophageal reconstruction. My right arm was harvested for tissue to patch the reconstructed esophagus. As a result, the prosthetic voice was no longer an option for me. And so I found my 5th voice – a electro larynx, or EL. An electro larynx is an instrument that is held closely to the neck, or cheek, or with a straw in the mouth, and the vibrations it produces allows a person to “speak”. The voice is robotic sounding, and monotone. Facial expression and gestures help communicate emotions.
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 all of a sudden are we hearing more about this type of cancer? Head and neck cancer (HNC) has not been 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, physically, financially, and psychosocially, on those 81,000 people and all associated with them, every year. Since the mid 80s smoking and drinking causes of HNC have been declining. However the overall incidence of HNC in men and women is rapidly on the rise, mostly due to Human Papilloma Virus (HPV).
”Squamous cell carcinoma of the head and neck (HNC) is the sixth most common cancer worldwide, resulting in over 600,000 new diagnoses annually. Traditionally, HNC has been related to tobacco and alcohol exposure. However, over the past decade a growing number of HNC diagnoses are attributable to human papillomavirus (HPV) infection. HPV-positive cancers are now thought to account for 30-65% of all HNC and 50-80% of cancers arising in the oropharynx. Patients with HPV-positive HNC represent a distinct patient subgroup with unique epidemiology and prognosis characteristics and now represent a growing public health concern that is projected to become the primary cause of HNC in the coming decades.”
HNC is in the news often, reporting on people of note who had recently been diagnosed, completed treatment, or died. However, often the media doesn’t specify the type of cancer, as in the recent case of Erin Moran. HNC affects a person’s appearance, voice, ability to eat, drink, and breathe. As you breathe, speak, eat, drink please 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.
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.
