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The Reluctant Caregiver

This author is a recipient

of the Sigma Tau Delta Award

Sigma Tau Delta Awarde

March 2022


“In all likelihood it’s esophageal cancer,” the surgeon informs me.  “But only the biopsy results will confirm definitively–can you tell him when he wakes up?” 


Before I can respond, a blur of white retreats into the hallway.  Something about being late for his flight. Heading out of town for spring break.  But not before he’s put me on a flight to hell.  Smug arrogance delivered with a side of clinical detachment.  It is a cold plate I’ve been served–and choked on–more than once.   


My husband is sleeping peacefully in the surgical recovery room, oblivious to the devastating news.  Cancer.  Again.  Mantle cell lymphoma has already done its best to kill him.  And me, the reluctant–and chronically exhausted–caregiver who spent an entire year helping Steve navigate the Medical Industrial Complex while staying just ahead of the numerous and sometimes life-threatening infections caused by chemotherapy. And because Steve was fighting for his life that year, I was the one who obsessed over every detail embedded in mountains of paperwork (read: staggering bills), laid awake at night brooding over the impending collapse of our finances, and rose at dawn to read and digest every peer-reviewed journal article on mantle cell lymphoma.  Rare.  Resistant to treatment.  Genetic.  Incurable.  End of story.  So today’s news is no surprise.  Remission is always temporary.  


But Cancer 1.0 happened in 2019.  The good old days.  Before the pandemic. The mind-numbing isolation.  The soul-destroying loneliness.   The steady march of loss.  And before Steve filed for divorce.

   

Now here I stand in yet another hospital room, waiting for my almost-ex-husband to wake up to the news that he’s probably going to die before our long-delayed divorce is finalized.  


Is there anybody else who can deliver this spectacular piece of schadenfreude? I’m not even supposed to be here.  Rather, I am supposed to be rendered invisible by divorce.


I silently curse the indifferent universe and every wretched moment that’s led to this place of despair.  We’re hardly friends anymore.  In fact, there have been dark days when we’ve confessed a mutual–albeit momentary–hatred of one another.  Still, the divorce was not my idea.  I resisted it, mainly out of fear.  Fear of irrelevance.  Besides, I have a terrible track record with marriage. And remarriage.  Which is to be expected when one marries their absent father repeatedly–or so my therapist told me upon hearing about my fourth trip down the altar twelve years ago. 


The sound of Steve snoring jars me back to the present.  He’s going to wake up any minute.  My gut clenches.  An agitated elephant presses against my chest.  My pulse races, readying for a marathon panic attack.  I’m not supposed to be here, I repeat indignantly.  I’ve already spent a lifetime taking care of my mother, a poster parent of enduring disapproval.  And after her death, I stepped up and took care of two elderly aunts, a beloved family friend, and then Steve during Cancer 1.0.  Decades of duty.  Time that I can’t get back.  Even though I’d do it all again.  


Persevere.  And offer it up.  The Conscience Cross is heavy.  The nuns taught me well.


Now here we are, almost three years into a pandemic, emotionally pulverized from marital schism.  Philosophical disagreements about wearing masks, social distancing. Life in general.  And death.  Chronic discord and estrangement define our relationship.


Some of it is the result of being confined to our modern day House of Usher which seems to shrink in direct proportion to the cracks creeping across the ceiling of the dining room, where I spend most days buried in the minutiae of cancer.  My tired eyes wander upward, tracking the path of cobwebs across Prague over to the edge of Paris–exotic venues matted and framed in dreams hung on a dreary, dated wall.  The cracks are inching their way toward the adjacent kitchen, close to Edinburgh, framed in its Victorian glory.  The vintage scene of Princes Street reminds me of the cousin I have yet to meet in distant Scotland.  The cost of cancer. And dreams deferred.    


Insurance statements. Lab results. Bills for chemo (how can one tiny bag of medicine cost $12,833.25, I wonder. Ten bags for the first year; eight the next year–a second mortgage for snack size Ziploc bags). Juggling appointments with an ever-increasing number of specialists–fourteen doctors–eleven of whom have been enlisted to address the perennial side effects of chemo.  Rinse and repeat. Usually without sleep.  


A jagged mountain of despair has formed over a decade of steady disappointment. Setbacks. Acrimony. And now perched at the summit, the twin plagues Covid and Cancer.  


The small college where Steve taught for twenty-five years closed permanently at the beginning of the pandemic and just like that, we were housebound. I took the Covid rules literally and cut myself off from the world. Entirely. And without exception. Steve, meanwhile, masked and social-distanced among strangers, but continued to live as if it were 2019 when among friends and family, arguing that he’d survived cancer, and wasn’t about to surrender to a virus.

In turns, I would beg, cajole, and even sternly lecture him about the life-threatening risks of Covid. Especially for severely immunocompromised people–like him. He took offense. I bristled. Emotional rigor mortis eventually set in.  We could no longer bend to each other’s viewpoint. Instead, we broke away from each other.


In April of 2020, Covid claimed a beloved family friend. Thanks to modern technology, I was able to sit at the bedside of my dying friend, albeit virtually. Death via Facebook. A special brand of hell. But there was no time to process that loss. Soon, another close friend was hospitalized from Covid and eventually died. Then my daughter's paternal grandparents caught the virus and died just days apart. My elderly uncle, who had been housebound since the start of the pandemic, would die just as Steve completed radiation treatment for Cancer 2.0.  


Visits with the man who had helped raise me after the sudden death of my father, were entirely virtual. No hugs. No hand holding. No shared birthdays or holidays. The risks to both my uncle and Steve were potentially deadly.


At my uncle’s funeral, my daughter and I sat masked and socially distanced from other relatives. Between the loss of so many loved ones, Steve’s on-going cancer battle, and the constant emotional whiplash of a protracted divorce, I am reeling. Chronic bereavement is my new normal.


Meanwhile, several of Steve’s friends caught Covid and quickly recovered. Similarly, his two college-aged daughters breezed through bouts of Covid and were soon tweeting amusing anecdotes about the quirky side effects of the virus. Coke now tastes like Pepsi. Stop the presses. Epic tragedy.


It often felt like Steve, along with his family and friends, were living in a parallel universe free from the consequences of Covid. My friends and family, however, were dying at an unprecedented rate. It was a tale of two tragedies. Loss and More Loss. For me, that is. But for Steve, Covid was a minor nuisance. The dissonance was infuriating.


“Did everything go okay?” Steve whispers. He’s crawling back to consciousness. And to news that he’s in no way prepared to hear. He’s expecting a sore throat from a minor procedure, not a death sentence.


“Not exactly,” I reply. “It appears the gods of misery and mayhem are not done with us yet…”


And so it came to pass that on the exact March day our divorce was to be finalized, we found ourselves instead seated in front of Steve’s oncologist, struggling to absorb the dreadful news that Steve has Stage IIB Esophageal Cancer. And a curveball–his Mantle Cell Lymphoma has returned–meaning Steve now has two separate and distinct cancer battles ahead. Define irony.


Port placement. Chemotherapy. Radiation. Immunotherapy. Possible surgery. PET scans. Poor prognosis. And eventual impoverishment at the hands of the Medical Industrial Complex. It’s 2019 again. Groundhog Day. Except that in the interim, we’ve experienced three truly awful years of isolation, professional and personal setbacks, an assortment of maladies including several surgeries for me, and a tsunami of loss.


There are really only two ways that one can handle a horrible situation like this. Step up. Or run the hell away. I choose the former. Habitually. While fervently wishing I could choose the latter. My Catholic Conscience always overrides the Darwinian need to save myself.  


October 2022


“There is no evidence of esophageal cancer,” declares the Savior, triumphantly. Steve has miraculously beaten the grim odds. For now. Twenty to twenty-four percent of patients with advanced localized esophageal cancer remain in remission an average of three years. Perhaps long enough to finish our divorce, and more importantly, forgive each other for the sins of our shared past.  


There is a moment of hope. A beat. And then…


“But your lymphoma has actually gotten worse,” Steve’s champion continues, his British accent stifled behind the confines of his N95 mask. Perhaps he’s hoping we’ll miss the bad news portion of the good news: that a half-million dollars of immunotherapy hasn’t budged–much less cured–the stubborn mantle cell growth in Steve’s abdomen. 


The Savior, a perennial optimist who prides himself on saving those with the grimmest prognoses, feels certain that with another full year of immunotherapy (read: another half-million dollars spent on a toxic cocktail of chemicals that either cures or kills in no particular order), Steve can beat this, too. At least until the next relapse. Because for the rest of his life, Steve will either be in a precarious state of remission or actively battling cancer. Or worse, he’ll be in remission from one form of cancer, while still fighting another form of the disease. Cancer is part of his DNA. Literally. 


Cancer is his–our–constant companion. The one thing that will never leave him, and by extension, me. What cancer hath joined together. A toxic adhesive that binds unhappy people together. Permanently.  


So, we leave The Savior’s world-class oncology clinic and walk to the nearby parking garage in stunned silence, each of us absorbed in our respective thoughts. Pondering the tragedy that is us. 


Beyond the damage, we still care deeply about each other. Especially during watershed moments like this. But we also have a long and tortured history. And so much damage. Yet here we are. And here we will stay. For now. And maybe always. Steve has miles to go, as it were. And I will do what I’ve always done. Step up. And probably gripe about it, as I’m also prone to doing. And we will continue to argue over who is to blame for the ten million paper cuts that define our relationship. Because that is who–and what–we’ve become.


One long year ago, we were wrapping up a complicated divorce. But cancer had different plans and we instead found ourselves navigating a treacherous path with no roadmap. Steve is still unwell. I am existentially exhausted. Our finances have been decimated by the cost of cancer. And our lives have been upended in ways that have forever changed us. Milemarkers in the wilderness.


As we pull out of the parking garage into a swell of late afternoon traffic heading in the opposite direction–downtown to Broadway, where tourists line the streets giddy with excitement over being at ground zero in America’s party city–my hand reaches for Steve’s. Nashville never sleeps. Neither does cancer. So going forward, it’s all hands on deck. Again.


Life, with all its uncertainty, is still out there waiting to be lived. Perhaps with less rancor and more compassion.  Because if nothing else, cancer has provided clarity of the heart. And the way we respond to that clarity determines whether paper cuts eventually heal. Or leave more jagged scars.


ABOUT THE AUTHOR

Shalynn Ford Womack ('84) is a freelance writer whose op-ed, travel, and feature stories have appeared in The Moline Dispatch, The Huntsville (AL) Times, The Tennessee Register, and elsewhere.  She holds a master’s degree in Clinical Psychology from Middle Tennessee State University and is the author of Ice On The Wing: Essays on Life And Other Difficult Situations (Spearhead Press, 2012).  Womack resides in Nashville, Tennessee.

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