F*ck Cancer: Fighting the Odds in 21st Century America – Leah Mueller

 

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Photo by Robert Murray on Unsplash

No one is ever prepared for these dreaded words: your husband’s got cancer. I should have known, but I didn’t. For months, my husband Russ complained of muscle weakness, nausea, blood in his stools, and dizziness. His new primary care provider, a man lauded by his young receptionist as a “genius”, said, “If you had cancer, you’d be in worse shape. You’d know it.”

The doctor did preliminary bloodwork and gave my husband the thumbs-up. “Get a colonoscopy,” he suggested. “But it’s probably nothing to worry about.”

“Probably nothing to worry about.” Who doesn’t want to hear that reassuring phrase? Sweet and unsubstantial as honey to the eardrums. “If you had cancer, you’d be in worse shape.” Russ and I did three-mile urban hikes almost every day. Though my husband’s daily commute was long – from Tacoma to Seattle and back, five days a week – the summer daylight hours lasted until nearly 10 PM. We had time to wolf down a stir-fry and hit the waterfront trail or take a walk across the Narrows Bridge.

Not the hyper-manic, Spandex-clad bike riders we often saw on the bridge, but decent enough shape for two people in their late 50s. Russ, at my urging, had just adopted a vegan diet. I’d been fully vegan for only a year, but plant-based for a long while. I’d persuaded Russ to give up red meat, then chicken and finally fish. I cooked elaborate vegan meals, counted proteins and kept plenty of B-12 on hand.

Did I mention that we didn’t have health insurance? It’s more accurate to say that we had finally broken down and purchased a plan from the software company he worked for, in Seattle. They’d finally gotten a new one with a 10K deductible that only cost $150 a month. We’d gone without insurance for years, however. A dangerous game, but not really our fault. Who wants to spend 500 bucks a month for a plan with a 10K deductible when s/he lives in the second most expensive urban area on the west coast?

Russ’ job sucked. Seven years shucking bits, with a two-hour commute each way. The downtown vibe was atrocious. Young neoliberals on phones. Homeless folks all over the sidewalks, hands out and screaming. Seattle in the 21st century. And Russ, the baby of his family, trying desperately not to run late and piss off his bosses. Fate was exceptionally cruel and gave him a narcissistic supervisor, one who mocked him every day.

In our marriage, I’ve also played the role of boss. I’m not much good at it, since I lack common sense. Still, I insist upon being in charge. I’ve been cruel, too, plenty of times. Russ has told me that I’m not as bossy as his ex-wife. I have that going for me, anyway. But I am often self-centered and terrible, demanding a greater share of attention.

Why didn’t Russ tell us all to fuck off? He wanted to make everyone happy. The more he tried, the more we said, “That’s not enough, you’d better do more.” And he did. Until he got sick. Even then, he kept trying to please us until his body demanded that he stop.

Just writing those words makes my chest tighten. But you know, I can’t let myself break down. For the first month after Russ’ stage four, colorectal cancer diagnosis, I did nothing but cry and stare at the wall. Colorectal cancer. Stage four. Mets to liver. Several of them. Oncology doctor said two years with chemo. Maybe more. You never know.

Then I pulled myself together. I’m the sort of person who’d be advantageous to have with you in the trenches when shells fly. Not so great at staying out of trouble, but able to navigate like a champ once I find myself in the middle of it. Just let me drive the tank, and we’ll be okay.

Russ, with his history of delegation, handed me the wheel, the manual, and all the artillery. He had no choice, really, and neither did I. I’ve never needed to nurse someone through cancer before. My mother had throat cancer, but she was prize-fighter tough and received help from my younger, live-in brother. Josh had nowhere else to go, anyway. Baby of the family. Never learned to take care of himself. He had no choice but to stick around and watch his mother die.

I read horror stories in online forums. People stuck in ghastly relationships with cancer patients. One woman complained about her husband, who lies in bed with his colostomy bag, flirting on the internet with overseas women. That’s a large abuse. There are plenty of smaller ones. Petty insults and rage. Blame and resentment. Even physical violence (with a cancer patient!), too terrible for me to imagine.

Because cancer makes the body weak. Much of my energy is devoted to keeping my husband from growing smaller. Like the Incredible Shrinking Man, his size diminishes a bit every day. Russ used to love food so much, so it’s painful for me to see him struggling to eat. We’ve reintroduced fish and organic eggs to his diet, and he seems to tolerate them well. Sometimes it takes him two hours to finish a tiny meal. Those are the bad days. On better days, he finishes an entire plate in less than an hour, and then looks up at me, beaming.

Russ’ weight has stabilized recently, as his cancer marker numbers continue to drop. The doctor seems a bit surprised, and cautiously delighted. No point in creating unrealistic hope for patients. But unrealistic hope is the fuel that recovery is based on. Everyone wants a goddamn miracle. Fuck the statistics.

The weirdest numbers of all are the ones on the blood pressure monitor. They’re normal now for the first time in Russ’ adult life. Not even cancer raises blood pressure like a toxic boss. Russ’ blood pressure plummeted as soon as he left his job. His supervisor never even signed the company get-well card. Imagine spending seven years under the thumb of a guy like that.

After a few weeks, medical staff connected the dots and realized Russ’ low energy came from the red pills he was still taking. “You don’t need these anymore,” the doctor stated. “Your systolic number is 85. If it gets much lower, you’re going to pass out.”

Sans pills, Russ’ blood pressure hovers on the low end of normal. There is a set routine for his appointments: Russ gets a blood draw and steps on a scale. A nurse places a pressure cuff on one of his painfully thin arms. All numbers are meticulously recorded in various online graphs. The staff appears competent and no-nonsense, with a detached compassion honed from years in the medical field. Russ and I have no choice but to trust them.

Trust: a foreign word, at least for me. It requires a certain arrogance to believe other people will act in your interest, rather than their own. A very American concept, one ripe with potential for exploitation. Early in life, I learned to be wary and demanding. Are you sure you know what you’re talking about?  Let me speak to your supervisor. Don’t you dare tell me what to do.

Russ’ and my current schedule now revolves around medical appointments. The situation developed with shocking speed – one evening we walked in lazy circles around the waterfront, stopping briefly at Harbor Lights lounge for a cocktail – and the next we reeled from a stage four colorectal cancer diagnosis. How could an illness that took so long to develop come on so suddenly? When did our preferred topic of conversation became a litany of body functions? Was it possible to go back, make another choice, and correct our mistake?

Too late, buddy. Should have thought of that before. Maybe the problem wouldn’t have developed if we’d paid more attention. Or if we lived in any country other than America.

Russ and I follow our new schedule to the letter. My oncology parking pass entitles us to a spot in the lower level of the hospital garage. Escher would have loved that garage – five levels of traffic going in all directions at once. If I’m unlucky enough to miss a ground-level opportunity, I search on higher levels with the non-cancer patients and their families. Invariably, I ascend to the roof, discover every space is full, and head back to street level, furious and defeated.

One morning, I found a spot with no trouble. “Membership has its privileges,” I laughed.

My mother would have made the same gallows joke. She watched her second husband die from suicide by self-immolation. One night he poured charcoal lighter fluid over his head and lit a match. That should have done the guy in, but he was stubborn, so his death took a long time. My family visited him at the Champaign-Urbana hospital for nearly two weeks. We wore paper face masks and slept on uncomfortable lobby chairs that we’d pushed together to make beds. I hated my stepfather’s guts. He was a miserable, petty, violent man, so it was a relief when he finally expired.

The crematorium botched the job, and my stepfather’s ashes came back with chunks of bone embedded in them. “Shit,” my mother complained. “Pretty bad, considering they had the job half done for them.”

Compared to a 1970s burn unit, MultiCare hospital’s oncology department looks like a day spa. Infusion rooms are named after natural attractions. There is both a meadow and a mountain room. The mountain one books first, due to its partial view of Mt Rainier. You need to get to the hospital early for prime infusion spots. Otherwise, the nurse sighs and says, “Sorry, but it’s the meadow room today.” Meadow is code for parking lot.

Staff provides the usual unhealthy hospital food. They peddle the crap with no sense of irony. Goldfish crackers send the wrong message about self-care, yet there are piles of them. Nurses push trays covered with artificial chocolate pudding cups, packaged in disposable plastic. Like flight attendants, they smile as they dispense these treats to patients. Ham sandwiches on white bread, cut into triangles. Cups of warm soda pop. All the accoutrements of a full recovery.

Every two weeks, Russ gets his infusion. We lost count this afternoon and tried to remember whether tomorrow’s procedure will be #8 or #9. Twelve in the series, and that’s just for starters. During infusions, Russ settles into a recliner –usually in the meadow room – and stares at the wind-up, solar-powered toys in the hospital window. Sunlight makes them dance. More sunlight than you might expect during a Pacific Northwest December. Plastic chickens wave tiny wings. Comical rabbits bounce on oversized feet. Everyone looks cheerful as hell.

Russ brings his headphones and laptop. He’ll jam to tunes while the chemical troops surge into his bloodstream. In another universe, Russ would have been both a wealthy musician and a famous music critic. Instead, he fell into software testing while working as a janitor at Microsoft during the early 90s. It paid okay, but not as well as programming. Good enough for a slacker, though. Until he got fired and had to find work elsewhere.

Everything about my husband screams aging hipster. The best part is that he’s bona-fide, not faux. Even after seven or eight rounds of chemo, he has a full head of curly hair. Half its usual volume, but still more than most men his age. Russ wears black Converse high-tops and a grubby 1111 Tavern hoodie. The nurses think he’s cute.

Goddammit, he still IS cute. Like he really could kick cancer’s ass and go on talking about that 13th Floor Elevators drummer forever. How the hell are we going to support ourselves now? On Medicaid, we’re not supposed to earn more than $1800 a month. A cent more than that, and we’ll need to pay for insurance. Russ and I will stay poor so he can have unfettered access to treatment.

Our plunge into poverty was as breathtakingly swift as the illness. Maybe more so. With each passing year, staying solvent became more and more like running while atop a slippery log. But run we did, paying our sky-high Puget Sound rent and maintaining a small Air Bnb-financed condo, located a few miles from the Canadian border. Our sole investment, due to be paid off within a couple of years.

So many precarious plans fail without warning, so why did we think ours would be different? The day after his diagnosis, Russ emailed his human relations manager to say he wouldn’t be in, because he had stage four cancer. She said we’re sorry, but you’re fired. Here’s six weeks’ severance pay and a $500 grocery card.

When you fall off the wheel and find yourself on the floor, folks are happy to play the role of savior. At least for a short while. Friends donated a substantial sum to our online fundraiser. One guy sent my husband $14,000. I’ve never even met him. Well-to-do high school buddy who hadn’t seen Russ in years but wanted to share a new inheritance.

Our new state government overlords assured me these gifts didn’t count as income. But once the money is gone, we’ll be expected to live on Russ’ disability check and whatever $125 I might be able to rustle up from monthly side gigs. Any more than that, and we’ll be too rich for free health care.

Nevertheless, I feel stunned by folks’ kindness. I’ve given $25.00 to fundraisers, handed dollar bills to homeless people, and paid my adult kids’ rent a few times, but I’m not inherently generous. Our economy doesn’t support the easy distribution of wealth. Certainly not in Washington state, with its high cost of living and miles of homeless tents.

Many local friends stepped up to offer aid. An old Seattle boyfriend who lives on SSI sent us two different $100 money orders. “I don’t need much now,” he assured me. “Just beer and weed.”

Maybe that really is all you need. This spring, Russ and I are going to sell the condo and move to Arizona. We’ll have just enough money to buy a little house in Bisbee with cash. The same town my mother lived in when she had cancer. She didn’t survive. Ultimately, Russ won’t either. But we’re banking on the life-giving properties of sunshine to keep him going for as long as possible. Maybe ten more years, if we play our cards right.

I hope my husband can sit on the porch, stare at the cacti, and play his guitar for hours. God knows the man has earned it.

This article previously appeared in Blue Nib Magazine

Leah Mueller is an indie writer and spoken word performer from Tacoma, Washington. She has published books with numerous small presses. Her most recent volumes, “Misguided Behavior, Tales of Poor Life Choices” (Czykmate Press), “Death and Heartbreak” (Weasel Press), and “Cocktails at Denny’s” (Alien Buddha Press) were released in 2019. Leah’s work also appears in Blunderbuss, The Spectacle, Bad Pony, Outlook Springs, Atticus Review, Your Impossible Voice, and other publications. She won honorable mention in the 2012 Wergle Flomp Humor Poetry contest.

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