Bill and Linda Clyne’s Story
Reflections Of A Caregiver Six Years “After” Cancer
It is generally not considered funny to play pranks on the “disabled” and when that person is the man you promised to love, honor and cherish through sickness and in health, I suppose the sin is even greater. But when the impulse hit me one morning not long ago, I couldn’t help myself. For six years my husband has claimed to have “no taste, except in women.” I occasionally question the accuracy of that statement and the time had come to put it to the test.
Just before Bill sat down to breakfast, I poured plain, boiling water into his black, ceramic mug, the one that says “Still perfect after all these years.”
I watched carefully as he drank from the cup to wash down each bite of French toast. Although I can’t understand how a man whose sensitive mucosa was so badly burned can drink scalding beverages, Bill has always liked his black coffee hotter than hot and radiation didn’t change that preference. Halfway through the meal I dutifully reheated his “coffee” in the microwave, biting my tongue to keep from laughing out loud. Status confirmed. Bill’s taste buds MIA – March 2006 to present.
In January 2006 I was thrust into a role for which I had no training or experience – and one for which I had absolutely no ambition. A sausage-like growth that suddenly appeared on Bill’s neck turned him – just as suddenly – into a “cancer patient.” And I, by default, became a “caregiver.” I would have much preferred to continue being merely “Bill’s wife.” Really.
At first glance it might appear I had plenty of transferable skills that could give me a leg up in this caregiving business. With a background that included work in both special education and emergency medicine, I had years of experience helping other families deal with challenging situations. Even playing small roles in community theater productions should have taught me to at least act cool in a crisis.
Wrong. You see, while I pursued life with “Type A Plus” seriousness, I relied on Bill’s relaxed “Type B Minus” personality to keep it all in perspective. His optimism and irreverent sense of humor kept me sane and smiling throughout our marriage. You could say Bill was “the wind beneath my wings” because he never failed to (gleefully) acknowledge every single time I “passed wind” under the bedcovers
Too much information? You don’t know the meaning of that expression until you’ve typed “head and neck cancer” into your computer’s search engine.
It’s probably appropriate that my quirky husband’s (stage 4 metastatic squamous cell) cancer originated from an occult primary. Though Bill’s ENT searched high and low the phantom tumor was nowhere to be found, providing yet another anecdote for the collection of a man with a story for any occasion. This was one story I would have preferred not to tell.
Learning that neck dissection would leave a forked streak of stapled “lightning” running from ear to clavicle, Bill fashioned a coat hanger and two corks into “Frankenstein neck bolts” to complete the look. He wanted me to slip it on him as he was wheeled out of surgery. We laughed, anticipating the surgeon’s face when he saw the monster he had created.
But treatment for head and neck cancer has a way of taking the fun out of life, even for a funny guy, and any expectations I had for sailing through the experience on the wings of Bill’s humor were short-lived. Bill reacted poorly to anesthesia after surgery and there were no hiijinks to be had in the recovery room. Reality set in when I saw his ghostly white face retching into a basin. If this would be his “life” I knew I would have to let Bill go.
In the brief interlude between surgery and the next stage of treatment, I got “Bill” back. He chided me for not following through with our Frankenstein scheme but we giggled as we imagined the “creature” he might become after the “mad doctors” sent him on 33 trips though the IMRT machine and injected all those metallic potions into his veins.
In fact, I barely recognized the weak, skeletal, hairless, zombie-like creature that emerged. And I, too, experienced a transformation of sorts. I hunkered down for the duration, determined to maintain control. I got up every morning and put one foot in front of the other, even on days that held no prospect of laughter.
The brutal effects of head and neck cancer treatment are well-documented. We knew what to expect... but not really. If ever there were an infomercial made about chemoradiation, it would be Bill’s voice intoning the disclaimer at the end, the one that says, “Your actual results may vary.”
- Did you ever read the small print on drug information sheets? I read every word, including the fascinating statement that a side effect of anti-nausea medications can be…nausea! We’ll never know exactly what caused Bill’s stomach distress for the entire course of treatment, but nothing seemed to relieve it.
- The brochure we received about radiation indicated it can make patients feel “tired.” It mentioned they might need to ask their boss for a reduced work schedule. It recommended a nap in the afternoon. Since Bill is self-employed his “boss” hardly noticed when he stopped working altogether; he was too busy napping. In fact, for six months Bill’s boss pretty much slept all day long, in between trips to the bathroom to deal with phlegm and vomit.
- It was suggested mild exercise like walking can help cancer patients maintain physical and mental fitness. When a grown man literally cries at the thought of walking to the end of the driveway and back, exercise clearly is not the way to “mental fitness.”
- Smoothies are packed with nutrition for patients who can swallow but even hearing the word made my patient gag. Recipes for blended beverages poured into my email in-box from well-meaning friends. They never made it out of my computer.
- PEG tubes are said to be good things for many patients. Unfortunately, much of the formula that went into Bill’s stomach tube flowed out of his mouth if he leaned forward. Not a good thing.
- Eating large quantities of Ben & Jerry’s “Chubby Hubby” ice cream actually has an inverse effect on the weight of the husband when the product is consumed instead by the wife.
As time went on I learned a lot about head and neck cancer treatment. Most important, perhaps, was to expect the unexpected. Most difficult, perhaps, was to accept a certain loss of control. A patient’s reaction to treatment doesn’t always proceed as expected. Neither does the caregiver’s. I knew from the start I would find strength I didn’t know I possessed. I also knew I was far weaker than it would appear to anyone from the outside. I anticipated sadness and fear. But the emotion that brought me to my knees – the one I never expected – was anger.
It happened in the wee hours of the morning. We were staying in a friend’s second home conveniently located in the city where Bill was treated. I kept the alarm on my side of the bed and woke Bill at appropriate intervals for his medications. On that particular night he had been resistant and resentful. After finally submitting to my pleading he fell right back to sleep – but I couldn’t.
Tears welled up in my eyes. Not wanting to create a further disturbance I slipped from the room, hoping to collect myself with a cup of tea. Alone in a dark, unfamiliar kitchen illuminated only by glowing digits from the microwave clock I experienced a rush of dark, unfamiliar emotions. Waves of self-pity swept over me. Why Bill? Why me?
Suddenly, anger erupted in a fierce explosion of unprecedented magnitude. I hated being isolated in this borrowed house so far from friends. I hated the chemo that drained Bill’s color, the radiation that robbed his energy, the anti-nausea drugs that reduced him to an empty shell devoid of personality. I hated the cancer center. I hated Bill’s smiling oncologists, the smiling receptionists, the jigsaw puzzles in the waiting room meant to distract us from thinking – really thinking – about what we were there for, what the future might bring. I hated God.
And most disturbing of all, I hated Bill for daring to give me hope and leading me to believe this would be easy.
I shrieked and I sobbed. I hurled pill bottles at the wall and tore reams of Internet medical research to shreds. I pounded my fists on the counter and kicked at debris as it fell to the floor. I was ANGRY – and that anger was compounded because I had no idea where to “put” such a negative emotion, especially directed toward the person I loved more than anything. How could I be angry with the man who was fighting to stay alive for me? How could I curse the same God I begged to answer my prayers?
My tantrum probably lasted all of ten minutes, but it was loud, intense, and certainly not in keeping with the controlled, stoic persona I presented in public and to Bill. Guilt, shame and confusion overwhelmed me; the storm subsided almost as suddenly as it had struck. I cleaned up the kitchen in silence and went back to bed.
Bill slept in blessed ignorance through the whole episode and God apparently forgave me for being human. He also, for reasons I will never know, answered my prayers…. The road to recovery was long and arduous, but it’s much easier to reflect on the cancer experience with a light(er) heart after six years of “survivorship.” Entire days pass without either of us mentioning cancer and my indomitable husband has all but eliminated the word from his vocabulary. Bill rarely talks about the physical “leftovers” from treatment; he cheerfully accepts life with reduced saliva, swallowing issues, hypothyroidism, Lhermitte’s syndrome, and, of course, taste buds gone AWOL.
But for me, the emotional “souvenirs” remain closer to the surface than they appear. Six years can seem like a long time or a very short time, and no amount of time can make me forget that life is tenuous and we have been so very, very lucky.
While I am grateful our “new normal” includes a healthy dose of humor, I know many other families have not fared so well or been so fortunate. My heart goes out to these patients and particularly to their caregivers, as I now believe Bill may be right when he says this experience was harder on me than on him.
Why me? Why you? Why those we love?
“Caregiving” is a job we are given because – more than anything – we care. It brings out our softer side and our hard edges as well. We may embrace it as a gift or curse the burdens it places upon us – but it is a challenge we have no choice but to accept and to deal with as best we can.
After breakfast, I confessed to Bill he had been the victim of a hoax. The joke may have been on him but I have a feeling I’ll be reminded of my treachery for many years to come. The “man with a story for any occasion” has a new tale to tell and I will hear this one over… and over…and over! I’ll roll my eyes in exasperation of course, but it’s a small price to pay for the gift of having my husband back.
To the caregivers who read this and the patients you love, I wish for you hope, fortitude, resilience and – eventually – a return to laughter. God bless us all.