A Laryngeal Cancer Survivor Navigates His Journey With Grace, Wit, and Love
Editor's Note: This is part of our Survivorship series. Please see other posts in this series
In March 2015, Terry was diagnosed with stage 3 squamous cell carcinoma of the larynx, a type of head and neck cancer. After receiving multiple rounds of unsuccessful radiation therapy treatments, he had a laryngectomy, a surgical procedure to remove the larynx. As Terry shares in this Q&A — the latest edition in our Survivorship series — a laryngectomy is life-altering, not life-ending. He leads his life fully with grace, humor, passion, and compassion. Read on to learn more about Terry’s story.
Could you tell us a bit about yourself and your cancer experience?
I am a 68-year-old stage 3 laryngeal cancer survivor after 35 failed radiation treatments and ultimately a laryngectomy, 2 deep fistulas, and bilateral pec flaps with 30-plus subsequent surgeries. That is WHAT I am. WHO I am is a living, breathing 26-year happily married man who lives to laugh and loves to cook and provide joy for others. I also have a passion to travel. I play piano and guitar and sing like Darth Vader (that used to be different). My wife Jennifer and I live in Kansas City, MO, and have 3 successful daughters ages 48, 32, and 23, and a multitude of grandchildren.
How do you personally define cancer survivorship?
The patient defines survivorship. I have chosen to relegate my cancer to a “daily inconvenience” of tube cleaning, pill taking, and blowing a nose that won’t blow while preparing for my day. It is stuffing my pockets with enough Kleenex, taking all my pills, and planning to normalize our day to the best of my ability.
I spent a couple of years with some modicum of self-pity and anger, but luckily, I was bright enough to see that would kill me quicker than any cancer. I do what I can on the online support groups, with a local laryngectomy support group, and most certainly with the local Gilda’s Club. My wife was always the church pianist and I headed audio/visual for about 17 years. We recently resigned our positions and joined the worship side of the altar, a needed break.
"My cancer is real. I can deal with real. … One of us is in charge. I choose every day not to allow it to be cancer or my subsequent condition."
What were some initial challenges after your laryngectomy surgery, and what coping methods did you find helpful?
In hindsight, you lose months in pure recovery. In my case, a feeding tube and wound healing along with regaining strength from a lengthy hospitalization (due to multiple complications) were my initial challenges.
Having been a professional manager in the health care field, a mentor, and a singer/entertainer, my voice was paramount if not omnipotent to my persona. Suddenly, my wit was silenced or minimally difficult to express. Singing was a catharsis for me, and it served a dual purpose: Both me and my audience benefited. On performance nights, the majority of folks laughed at my humor, appreciated a song interpretation, or heard my underlying message of hope.
As fate has unfolded, I’ve found myself gravitating toward people and places where I can obtain the very things I used to give away. Coping methods, curiously to me, are suggestions for distractions. For me, coping is simply dealing. My cancer is real. I can deal with real. Now if finding new outlets for my voice is coping, then that is how I cope. If saying no to dying as long as I can is coping, then that is how I cope. One of us is in charge. I choose every day not to allow it to be cancer or my subsequent condition.
"The people who treated me no differently were of great help in me finding my new normal."
What kinds of resources and support have been helpful to you throughout your cancer experience?
Clearly, Jennifer was more than a Godsend. Twice as I was taken away by ambulance, she was told I would not make it. She had been steadfast for me and our family from the initial operation to today. A volunteer guitar singing group came to my room and sang Christmas carols. The following year, I was part of that group.
My surgeon was exquisite with his bedside manner. I was his first independent laryngectomy surgery patient and the first at our local hospital. He literally visited me daily for months. I met a new friend CW, president of Nu Voice, a small, local laryngectomy support group for laryngectomy patients and caregivers. I met a 95-year-old lady laryngectomy patient who was inspirational. We were blessed to have an esophageal speaker, an electrolarynx speaker, and myself as a TEP (trachea-esophageal puncture) user who collectively spoke on college campuses to graduating speech-language pathology students. Some of those students had never seen a laryngectomy patient before.
The people who treated me no differently were of great help in me finding my new normal. My brothers and sisters, as well as friends, were an integral part of my attitude.
You’ve mentioned that having a laryngectomy is life-altering, not life-ending. In what ways have you been able to spread this message and offer support to other people with laryngectomies?
The patient is the deciding factor, certainly, for the mental side of being a laryngectomy patient. Allow me to say this is not an easy ride for patient or caregiver. It is an unpleasant experience. But I am alive, and I am choosing the opportunity to maximize being alive. Six years out, I struggle every day with getting better — not being sullen, avoiding depression at all costs. I choose to laugh and refuse to cry.
Ten million people will die from cancer this year. Should I be one of them, know the cancer killed me, not my attitude, not my mental state. Working in health care for 50 years, I saw healing by attitude daily. Inversely, I observed untimely deaths as people gave up or chose not to try to find their new normal. I determined that the flick of a mental switch to the positive position could add years to my life and life to my years, and I turned it on!
I truly believe we have a choice. Some folks will never understand why I made Christmas dinner for the family and in-laws with all the trimmings, even with my feeding tube and inability to have anything by mouth. But I enjoyed that meal as much as — perhaps more than — they did. It’s the journey. I was living my life as normal as possible as I mashed potatoes, carved turkey, and made my locally renowned gravy. I chose happy. I am willing to meet with pre-surgical or post-surgical laryngectomy patients and their families as a sounding board or to share my walk.
"I determined that the flick of a mental switch to the positive position could add years to my life and life to my years, and I turned it on!"
What are some hobbies and passions that bring you joy?
I play piano and guitar. I attend and play at a local open mic that I started 37 years ago. I cook every day for my wife and guests and take a great deal of pleasure in feeding a widowed neighbor several times a week. She says my leftovers are better than her first-overs.
My lovely wife retired from teaching high school piano and vocal music in May. Since then, we have taken trips to San Diego, Galveston, Memphis, and Biloxi, as well as several day trips. We are taking a cruise to the Eastern Caribbean in November, driving to New England for the fall, and planning a trip to Hawaii this winter. The adage that “we don’t stop playing because we grow old, we grow old because we stop playing” clearly applies. Age, however, is inevitable. Meanwhile, I will nurture my childish mind as long as I am able.
Do you have any additional thoughts you’d like to share with others who are living with head and neck cancer?
Cancer happens. In fact, 1 in 6 will suffer its attempts. It’s not that it happens to you that matters. What matters is how you react to it. I think it is important to realize that some folks will treat you differently after a laryngectomy. It is their paradigm that causes the change in their opinion or approach, not your surgery.