If you refuse to admit that automobiles exist, you’re going to get hit by cars,
not because you are sinful or neurotic,
but just because you are not looking at automobiles.
-Thaddeus Golas, 1971
In 2012, a team of medical researchers brought pancreatic cancer patients into the desert, and once there, buried the patients up to their necks in sand. After the patients’ body temperatures increased to 104.9 degrees Fahrenheit, the researchers removed them.
My father, in the month before he died, wanted to participate in this study. I’d like to say he was attracted by the medieval corporeality of it — shared the researchers’ absurd hope that extreme heat, conducted by crushed rocks, might succeed where chemo and radiation failed. My father felt no such excitement. This was simply the last experimental trial we could find.
When I looked into the trial’s details, I learned that an operation that had saved my father’s life in the 1970s — brain surgery — now made him ineligible for this study. Nine days later, he died.
The experiment could not have cured my father. There was not then, nor is there now, a cure for metastatic pancreatic cancer. It may have bought him more time.
In 1968, my father is on a teen tour in Cuernavaca, Mexico, and one of the other 16-year-olds is a large-breasted girl named Gina. My father is scrawny, but six feet tall, and one afternoon he discovers if he puts his arm around Gina while shouting ELLA ES MI NOVIA it prevents grown men catcalling her. He becomes distressed when Lisa, the girl he really has a crush on, believes the sentence he’s been shouting repeatedly is true.
Back at the hotel, he goes to the dining hall and fills a cup with water from a cooler. There are dysenteric amoebas in it, swimming between particles of Hepatovirus.
A few nights later, my father has a fever that continues rising for hours. Maybe, he thinks, I will become hotter and hotter, so hot I am dead. The trip leaders, who lack any medical training, diagnose him with “traveler’s diarrhea.” For the next four weeks, they instruct him and the handful of other teens with severe Hepatitis A to recuperate in their hotel rooms.
When my father’s flight lands back in New Jersey, his skin is yellow and he weighs 125 pounds. His older brother picks him up and explains their 49-year-old father has suffered a heart attack and almost died.
A few years later, in college, my dad opens a psychology textbook and reads how teenagers allegedly possess a sense of invulnerability. He is confused. It is something he’s never had.
Mother Mary Alfred Moes
In 1876, Mother Alfred is preparing for her school’s end-of-year talent show in Joliet, Illinois. The show will raise money to build a new school, and she’s arranged for the students to perform at the opera house. Holding the event at her school is problematic. The Chicago sewage commission releases untreated human waste into a canal one block away. There is an odor issue.
Bishop Foley, who oversees the Sisters and has a history of stifling strong leaders, uses his ecclesiastical power to ruin the show. He tells Mother Alfred that her students may not portray nuns or perform in public. The show goes on anyway, minus a highly-anticipated skit about a Sister who adventures alongside Florence Nightingale as a nurse in Crimea.
The next year, Mother Alfred is voted Mother Superior in a secret session. Bishop Foley voids the election. She decides to move to Minnesota. After she leaves, Foley announces that any Sister who talks to her will be expelled from the congregation. Twenty-four Sisters, almost one fifth of the community, choose to follow her to Minnesota, where Mother Alfred will soon change the course of medical history.
A year before my father’s diagnosis, he went to his doctor’s office with a backache and a drawing of his family tree. The deaths from pancreatic cancer moved backward in a straight line – his own father, grandfather, and grandmother.
Pancreatic cancer is never hereditary, his elderly doctor said, before prescribing him physical therapy for his back pain.
In larger cities, it was already common knowledge that ten percent of pancreatic cancers were hereditary. Doctors knew that Ashkenazi Jews, like my father, were at increased risk for at least two of these mutations. My father would’ve been given a swab or spit genetic test and a CT scan. Only, we lived in Fairbanks, a small town in Alaska.
One year later, my mother and father were back at the doctor’s office. Four weeks without treatment, the doctor said and blinked. The small office filled with the sharp and bitter scent of fear. Six weeks with treatment. The doctor looked away from my mother.
We did not blame the doctor, not exactly. As one of the few internists in central Alaska, he had a thin network of peers and had seen few cases of pancreatic cancer. Even if he’d dedicated every spare moment to reading medical journals, forsaken social life and leisure, he couldn’t have kept up with each year’s medical advances.
My father would almost certainly have died from pancreatic cancer even if diagnosed the year prior. The only cure for pancreatic cancer is to cut out the tumor in its entirety before it can spread. And because of the location of the pancreas, and the profusion of veins surrounding it, removing the tumor is often impossible. The inferior vena cava, the largest vein in the body, braces along the pancreas. Nicking it is like slitting someone’s neck. Bleeding to death takes thirty seconds.
When I see Ella across the table in a graduate seminar in the fall of 2017, it’s an infatuation-at-first-sight situation for me. She appears to at least like talking with me. Over the winter holidays, she takes a trip to Paris. While she’s there, a mass is discovered in my father’s pancreas. We are not yet close enough for me to qualify for suitcase souvenir space, but after I tell her the news, she brings me back a hard cheese and a soft cheese.
I meet Ella at her apartment to pick up the gift. Standing in front of her open refrigerator, she asks about my dad, and it occurs to me she’s not freaked out at all. Sure, she’s giving me pity-cheese, but the attitude she’s emanating is much more that’s-what-you-do than oh-my-God-what-do-I-do?
My closest friends are comfortable talking about death. They learned to be, when two-and-a-half years before, my previous partner died of bile duct cancer. The conversations are existential and serious-faced, laced with dark humor. The exchange with Ella in front of the refrigerator provides an alternate option, beyond a mournful heart-to-heart. She’s given me cheese because my dad is sick — but the cheese itself? The cheese is cheerful.
I like looking at the hunks of cheese in my refrigerator. I like to think: death sucks, but here’s some sublime French cheese! I eat them sparingly, enjoy them too slowly. One day I unwrap both of them, and they are covered in bright green, bitter mold.
Mother Mary Alfred Moes
Late on the afternoon of August 21st, 1883, the air tastes like smoke. Above Mother Alfred’s head, the clouds are lead-colored and separated into three strata, each simultaneously moving in a different direction. Just after 5:30pm, the layers of countervailing winds collect 25 miles outside of Rochester and form a tornado.
As the tornado moves towards Rochester and Mother Alfred, its whirling accelerates to an estimated 300 mph. The wind shears roofs from buildings, sends planks of wood through horses, and destroys hundreds of homes. 237 people are injured as shrapnel flies through the air and buildings collapse. 37 die.
The tornado reaches the center of town, carves eastward, then lifts back into the sky. There is no hospital, so the wounded are brought to a saloon. Mother Alfred and the Sisters she teaches with volunteer as nurses. William Mayo, a prominent Rochester doctor, oversees the makeshift ward with his sons, William Jr. and Charles. The brothers have been assisting their father in surgeries since they were children.
After the dead are buried, Mother Alfred approaches William Mayo Sr. to request he open a hospital in Rochester. He refuses. Rochester is a town of only 5,000 people, and a full third of the town’s infrastructure has just been blown away. Mother Alfred offers to raise the money.
Sure, he says.
The Sisters pool their income and hold bake sales. Six years after the tornado, Mother Alfred opens St. Marys Hospital.
Alaska lacks many of the treatment options available in the Lower 48. The Rasmusons, a local family, realize Alaskans are dying because they cannot afford plane tickets for out-of-state care. They fund a program that buys patients and their immediate family plane tickets for treatment as well as for visits home during elongated care.
At Seattle Cancer Care Alliance, my parents adjust to the idea of terminal illness. Between rounds of experimental treatments, they fly up to Fairbanks to visit friends and remember normalcy. In Seattle, they stay in an apartment maintained by the cancer center, a tiny world one mile east from the Space Needle. There, no one stares at the usual signs of sickness: dull yellow skin, periorbital purpling, the bags and pumps that hang from bodies. The receptionists pause for small talk when checking people into appointments — they may be dying, so the exchanges are warm, and any brusqueness on the patient’s side is forgiven.
After we adjust to terminality, we must adjust to uncertainty. One day in my junior year of college, my mother calls to tell me that a minor operation, something simple enough to have done in Fairbanks, has gone wrong. My father is bleeding to death. The doctors will try to keep him alive until I arrive. The fastest flight I can find from New York to Fairbanks takes fifteen hours.
I call home during a layover in Seattle. My mother seems strangely calm. Shock, I think sagely, and resolve to wait until I land in Fairbanks to ask more questions. When I arrive, she drives me to the grocery store instead of the hospital. The doctors were able to cauterize, she says over a display of cantaloupes. My father is fine. He has survived another improbable thing.
In the checkout line, in the town I’ve grown up in, the cashier asks where I’m from. Which country, she clarifies, and I start to laugh. I am twenty, and want to believe that sadness has changed my face, made me something of a stranger, but it’s the jacket I’m wearing. It is blue herringbone and canvas, with a folded collar that slouches diagonally across my chest. Fashion updates are as slow as the medical ones: Fairbanks wears bell-bottoms when the Lower 48 has moved to skinny jeans. I am dressed for a different time zone.
After my dad’s diagnosis, I fly home to visit him in Illinois. When I return to New York, wet snow is falling quickly, and people’s footprints disappear by the time they reach the next block. My apartment is a half-mile from the subway, and I want to listen to music on my phone, so I take out my umbrella. A couple times it grows so heavy with snow I pause to shake it off, dislodging a half-inch layer each time.
I unlock the door to my apartment, and there are stargazer lilies on the kitchen table. Ella has talked my roommates, whom she’s never met, into letting her in. She’s left a bag of groceries, too.
(There’s a deathly-symbolic snowstorm outside, but I have flowers!).
Weeks pass. Ella and I have more in common than dead or dying fathers. One morning, we wake up together, run to the gym, write side-by-side in the library all day, decide on a body-paint dance party for the evening, paint intricate designs on each other for hours, and then drink and dance until the sun rises.
All night, a bittersweet image repeatedly enters my head: I see Ella and me at a wooden dinner table — the two of us laughing, wrinkled, beautifully aged; we’re reminiscing about the night we went dancing, a time our bodies could do anything, how we stayed up until dawn.
I realize if I were not thinking of my eventual decay, I would not be aware of my body’s limitlessness on the dance floor. I do not find this an adequate consolation for death, but it is still a prize.
Mother Mary Alfred Moes
After St. Marys is built, Mother Alfred and several Sisters move into the hospital. They leave teaching and become the hospital’s first nurses. At first they have only 12 beds, so when patients outnumber beds, the Sisters sleep on the floor.
The Mayos are the hospital’s main doctors and they alternate going on international trips in search of new medical techniques.. They begin to heal ailments previously thought to be incurable, and word spreads that their expertise is unmatched at any other hospital in the country. Soon, their international travel becomes unnecessary. Medical professionals from all over the world begin flocking to Rochester to learn and exchange information.
Chronic pain causes grumpiness. Before my father’s diagnosis, my whole life I’d been surrounded by people who assumed one “learns” things from cancer. I quickly learned it’s stupid to expect lessons and insights from people who are in pain most of the time. But there were lessons anyway.
My college graduation was a day no one thought my father would live to see — 18 months beyond the six weeks. After the main ceremony, we were still sitting under the big white tent, and my dad’s ostomy bag leaked. Plagued with complications from the start, the bag’s seal had delicate threads, and the feeling in my father’s hands had never fully returned after his last round of chemotherapy.
If it were me, I would’ve panicked. But to anyone unfamiliar with ostomy bags, the blossoming stain of excrement on my father’s shirt would’ve looked like spilled mustard. I watched him look up from the bag with a smile shifting into real happiness – he had decided it would continue to be a good day, poop be damned.
This is one of the most meaningful, least-sexy lessons I’ve learned. Vis-à-vis mortality, let the onlookers think the mess is mustard; your kid only graduates once.
I fly home to Illinois again. My father is in the hospital with an infection. His hospital is affiliated with the 31st most highly-rated cancer treatment center in the nation. My mother worked there as a psychologist for years. We trust it.
When I enter his room, my dad has a temperature of 103.5. He’s a psychologist too, and is on a conference call about social and emotional wellness in schoolchildren. This is characteristic: he’s always saying his greatest loves are family and work. I scan the room and see there is a dustball under a chair, almost as big as a tumbleweed in an old Western. MRSA comes to mind.
My phone buzzes. My deceased partner’s friend — my friend too — has just died from an opioid overdose, and another old friend is letting me know.
A doctor enters. The news is bad: the location of my father’s tumor makes him infection-prone, and chemo is immunosuppressing, so the aggressive regimen we’ve hoped for is a no-go. The milder regimen they’ll use now will decrease his life expectancy from twelve months to six. We quintuple-check with the five doctors who visit his room during the next seven hours — they’re all in agreement.
Dusk comes. A gold-toned reading light happens to be on directly above the bed, and the rest of the room is dark. I tell my father I love him.
“I’ve had a good life,” he says, “but I wanted more time with you and your brother.” His voice cracks.
Speaking directly works for us. Since we are not being strong — attempting to wall off a pain that cannot be held by walls anyway — we can see each other fully. We are in pain, but we are not alone.
Me, my father, and his IV pole begin to pace up and down the linoleum-floored hallways. His newly-halved life expectancy remains at the center of our conversation. Each of us has lost too many friends to be in denial.
“You need a second opinion from a doctor at a different hospital,” I say.
“Second opinions are time-consuming. I may not have much time left.”
I tell him about my newly dead friend and the second-rate rehab program he went to, remind him of my deceased partner and the one doctor who missed his tumor, and the MRSA-tumbleweed under the chair.
“I’ll think about it," my dad says.
At a certain point we’ve talked so much about cancer and death the topics almost feel boring. It was this way with my deceased partner, Peter, too. Pain, after being expressed, receded for a while — the rest of life became more interesting.
By the time we return to my dad’s room, we are making jokes.
Mother Mary Alfred Moes & Co.
My father decides to seek a second opinion. The day he arrives at Mayo Clinic, there are still Sisters living and working at St. Marys Hospital — they are executives, phlebotomists, chaplains, and archivists.
His new oncologist says the more aggressive chemo cocktail is the obvious choice. Yes, there’s an infection risk, but the clinic can handle it.
My father passes the six-month mark, then the twelve. He is admitted to the ER 18 times with infections, but survives. I become furious at the doctors in Illinois for asserting the lack of alternatives with such authority. When I remember doctors are fallible humans too, I become angry at the hospital’s administration instead. Why didn’t they have a system in place to guide people like my father — who needed care elsewhere in order to live?
One night in the ER, a nurse overhears us reciting Mayo’s many splendors. She looks at us wearily. Mayo is far from perfect, she says. Her sister has leukemia. Despite Mayo’s favorable patient-to-provider ratio, not a single doctor has finished reading her sister’s medical records before an appointment. When there’s a multidisciplinary issue — say, a chemical imbalance created in the urinary tract (urology’s job) causing wheezing in the lungs (pulmonology’s problem) — the specialists are too entrenched in their fields to see the larger picture. This is how it is in basically every US hospital. Once doctors have chosen a specialty, they do not receive much training outside it.
My father and I understand we’re in a honeymoon phase, but we’ve never been anywhere better than Mayo. As he cycles through appointments, we learn ways Mayo incentivizes good care — their doctors are paid a set salary, not determined by how many procedures they bill for, so there’s no temptation to rush through patients or perform unnecessary treatments. Mayo’s motto — putting the patient first — as with all good propaganda, keeps popping out of everyone’s mouths. Same for the three ideas represented by their insignia’s triple-shield: Share the knowledge. Advance the science. Heal the sick.
Walking in downtown Rochester feels surreal. Every time we falter at a corner, a stranger appears and asks if we’d like directions. A day my father is especially ill, I accidentally remain braked for ten seconds at a green light, and no one honks. I never hear anyone honk at other distracted drivers either. I start asking why everyone is so nice, and half the people I ask tell me: Anyone we see could be having the worst day of their life.
The other half say it’s the legacy of the nuns, who still guide ethics training at Mayo, the city’s largest employer — and when so many people are nice to you, well, you feel really bad if you’re not nice back.
I fly to Rochester to meet Elizabeth’s father. He suggests we each prepare a list of snoopy questions we’d like the other person to ask us. This is the sort of thing Elizabeth would do.
I’m surprised we end up talking so much about me and my experiences, and then I realize he’s trying to plan for her. I’ve lived through what Elizabeth will go through. What was the most useful thing your father did? What was hardest on you when he died? What did your brother do?
Elizabeth asks me questions, too. Will I fall apart or will I be okay?
Of course, it is possible to do both at once.
A year and a half after my father dies, once I’ve learned how to respond to questions about what my parents do in a tone that doesn’t prompt apologies, I see him again.
It happens in Tbilisi. The old men there look like my father. They don’t really, different bodies and expressions and shirts — but their foreheads are exactly the same. It is enough. I’ve never seen anyone who’s looked like him. His father died before I was born, but had the same broad forehead, wide as a spatula, and bird’s nest eyebrows.
Later, when I look at a friend’s photos of the city, I am shocked. It is a normal city, full of normal people. Young men lean against neon bar signs. Children step through door frames. In my memories, I am watching the backs of old men walking along the street. I don’t speak, because I don’t want to hear them answer in the wrong voice. Tbilisi is a city of stone and wine and sulfur hot springs, but the streets smell of warm birchwood and the sour grapefruit of St. Pauli’s non-alcoholic beer. The world looks like it always does, just more full of the person I am missing.
I don’t know what this means for Elizabeth. I’ve never met anyone who likes their father as much as she does. They go on a walk once a day. When I see them strolling across Rochester, they lean towards each other with natural affection. They look like they’re continuing a conversation they’ve carried on for years.
The chemo combined with radiation halts my father’s cancer. Certainly temporary, his oncologist says. Go live. My parents fly home to Illinois.
Eventually new complications arise. When I visit for Thanksgiving, I watch him grimace in pain each time he sits down. A doctor at our hospital says it may be severe hemorrhoids and proposes a surgery he admits may not work. My father declines — he is more concerned by the blood clots his tumor is “throwing.” If they become large enough, he may spontaneously hemorrhage to death.
We return to Mayo. The pain-with-sitting problem is easy. He does indeed have hemorrhoids. Surgery, however, is not necessary: At Mayo, where doctors are not paid per-procedure, prior to surgery they test an old-fashioned remedy, where a warm washcloth is sprinkled with sugar and then applied to the hemorrhoid. In the majority of cases, enough fluid osmoses out that the swelling diminishes, and a person heals completely if they repeat the treatment, eat extra fiber, and take daily sitz baths for a week or two.
A nurse demonstrates the first treatment on my father. She has grown up in Rochester, and she still lives on one of the farms surrounding the city. The nurse tells my father, as she holds a wet washcloth covered in sugar on his anus, about how she’s recently done the same procedure to one of her pigs. It worked well for the animal.
I’m sitting behind a privacy curtain, wondering if he’s offended: my whole life, society has warned me to fear the indignities of illness. Instead, my father asks if convincing the pig to undergo treatment was difficult. When we walk back to our apartment, I double-check, and he says: Why would I feel shame? It worked!
Solutions for the blood clots and new infections are more difficult. Spontaneous hemorrhaging becomes an active concern. He racks up so many infections there are only three classes of antibiotics remaining — in the whole world — he’s not resistant to. Using empathic voices, doctors from infectious disease and vascular medicine explain, sometimes, with cancer, these problems cannot be fixed. Then, my father’s oncologist — in a move beyond his specialty — voluntarily reviews months of records in search of the infections’ source. He concludes it may be a kidney stone, which, it turns out, can harbor bacteria in crevices that antibiotics do not reach.
The same oncologist informs us of a surgeon at Mayo that vascular medicine has either chosen not to mention or isn’t aware of: the surgeon can do a procedure performed by few people in the world, in which he tunnels through blood clots and inserts stents to keep the vessels open. A person can hemorrhage and die during the surgery, but my father is potentially on the verge of hemorrhaging to death anyway.
Two days later, he undergoes the surgery and survives. Ella flies into town — she’s been working a job in California — and I want to make it clear I’m happy to see her, but my brain feels lethargic from weeks of worrying.
Despite my slowness, I feel normalcy has been restored — my father is feeling healthy again. Ella points out this isn’t normal, it’s something to celebrate. She buys a cake. We eat it in a hospital room and overlaying the hazy exhaustion is the atmosphere of a very small party.
The next day I am feeling better but am still cotton-brained, and Ella and I go for a walk along a creek. It is January, about twenty degrees out. We come to my favorite turn, where there’s no sign of the suburban houses that otherwise line the water. Ella holds both of my hands and bends down on one knee.
I am in love; I have told Ella if she ever proposed I wanted a surprise; I have not thought about marriage seriously at all. I know the answer is yes, but part of me is panicking, instructing me to carefully consider such a big decision. My brain, still in recovery from the preceding weeks, cannot think quickly at all.
I do not fake an excited yes for Ella. Back before I felt so finite, pretense was acceptable; there seemed to be endless time to fix things. I do not want a goodest thing — the moment of a proposal — to be a lie.
I tell Ella that I love her, but have not considered marriage thoughtfully, and need to think it over out loud with her. She seems completely unfazed. I loop my arm through hers. We walk for a while. We, of course, become engaged.
Mother Mary Alfred Moes & Co.
When COVID comes, the octogenarian and nonagenarian Sisters living in St. Marys continue their work. My father remains in Rochester — he feels safer being close to Mayo — and I leave New York in March to wait out the pandemic with him.
Ella is back in Northern California. She starts to cough, runs a high fever, and suddenly finds the air in her cheap, buddha-themed room difficult to breathe. She drives to the ER in a thunderstorm. The COVID line has been set up outside, without cover. Ella stands in the rain for four hours, is swabbed, and sent home with a prescription for steroids.
The same week, I mention over the phone to a Mayo nurse that I’ve recently flown in from New York. She lists COVID symptoms and asks if I have any. Only the ones that overlap with allergies, I tell her. She requests I go to a drive-through COVID screening, which Mayo has developed after a South Korean model. Once I arrive, I wait fewer than five minutes. Within sixteen hours, negative results are posted to my online portal. Twenty-three days later, Ella receives her test result, which is also negative.
In downtown Rochester, home to some of the most COVID-vulnerable people on the planet, ruddy white men in red AMERICA t-shirts walk without masks until a city ordinance requires them, and then they continue maskless anyway. Contact tracing begins immediately; a downtown bar closes voluntarily after being linked to an outbreak. Despite test-kit availability and a push towards testing everyone, only 1.2 percent of the county tests positive through August. Still, inescapably, of those cases, 1.17 percent — twenty-four people — die.
Mayo commences dozens of COVID studies. A friend of ours — staff at Mayo but not a medical professional — emails three study suggestions to a Mayo researcher based on international news articles he’s read. His suggestions are turned into staffed projects, and he’s shocked — how can he be seeing things no one in the country has spotted already? I am not as shocked. We are intricate creatures, death can grab at us in many ways — when we focus our energy on this fact it is clear how much purposeful work can be done to improve our lives.
In April, Ella and I planted a quarantine balcony garden. Two Fridays ago, the first tomato was ripe. Ella sliced it up for the bagels and lox spread we’d set out for dinner. My father can’t eat tomatoes. In December, scar tissue from his tumor encircled his small intestine. The stent holding it open can be clogged by food that doesn’t liquefy in the stomach.
My father sat down at the table and reached for a slice of tomato.
“Dad, wait—” I was alarmed. Most days, until sunset, my dad is his usual self. He Zooms with colleagues eight hours a day and goes for long walks with me by the creek. Nighttimes, he can get exhausted — the cumulative effect of chemo, radiation, and a pancreas that no longer produces enough enzymes to get him through a day. The small slips he makes when tired leave me in fear there will be larger ones.
After dinner, while Ella and I cleared the table, he rested on the couch.
“This is paradise,” he said, seemingly more to the air than to either of us.
“Paradise?” I said, worried. I looked at the industrial grey carpeting and sickly beige walls of the apartment we’d settled on due to its proximity to the hospital. The TV was off, but we watch enough cable news that the apocalyptic-ness of 2020 is always hanging in the air.
“Inside the apartment,” he clarified. “Ella is here. You are here. I am here. We love each other.”
My muscles unclenched. I’d felt the same way. It is easy to feel love when I’m so aware of its imminent loss. I do not know if I will ever feel love in a more concentrated way than I do inside this ugly apartment.