Against All Odds
Confronting a personal affliction during a global pandemic.
“In spite of illness, in spite even of the archenemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.” — Edith Wharton
I got my first glimpse at what my death would look like in November 1996.
It was my eleventh birthday, and my grandfather was very sick. He had been diagnosed with metastatic prostate cancer three months — or maybe three years — earlier. As a child, time registered in a way that is so dissimilar to the way I experience it now, I can rarely position the unfolding of events in my mind into a reliable timeline.
What I do remember about the way in which moments advanced is that as the cancer spread and my grandfather got sicker, he sank further and further into the gray patterned folds of a plush, oversized recliner.
I can still smell the colostomy bag that my mother patiently emptied for him throughout the day, treating it like a mundane chore, as if it was completely natural that liquid feces regularly accumulated on his hip, even when he could not eat.
At the end, he was barely eating at all. Yet on the night of my birthday, he was feeling well enough to be moved into a wheelchair, on loan from the hospital, to join the family at the dining room table.
My mother had made my signature birthday cake: dark chocolate with cherry pie filling and fresh whipped cream. When I recall that night, I have a clear view of the happy birthday girl sitting at the table wearing a dress that was black velvet on top, with a skirt covered in pink and black flowers.
I would not have been wearing the dress; it’s what I wore to my grandfather’s funeral. But no matter how hard I squint to properly focus the memory, I can’t see it any other way.
The next day, when he was gone, my birthday cake had become inextricably connected to his demise.
“Did you hear? It was the last thing he ever ate,” my mother told each person who asked about his last days. Later, I repeated the detail when people asked me about his death, using it to take some kind of ownership over the moment and link him to the life that I was mysteriously still living.
This March, when people began to lose aging parents and grandparents to COVID-19 at alarming rates, I thought of him.
I read horror stories of the virus spreading mercilessly through nursing homes and of elderly people dying alone, without daughters nearby to provide a final loving hand squeeze or a comforting slice of cake. I recalled my grandfather, depleted and frail, slowly and deliberately lifting his fork, surrounded by family. “Little bites!” he always advised his grandchildren.
Then I remembered that he was 62.
It wasn’t until much later that his age became a clue. After my aunt, his youngest daughter, was diagnosed with breast cancer at 33 and then my mother, his oldest daughter, was diagnosed with pancreatic cancer at 47. With each additional unlikely, untimely illness, the case got stronger. Something was going on. There had to be a connection.
By the time my mother died, before her 50th birthday, the mystery was solved. From my grandfather to his children to their children, a single genetic change had been passed, robbing each generation of a crucial defense against certain cancers.
Not long after I learned I had inherited the BRCA2 mutation from my mother, I was called home from college. Her condition had deteriorated quickly, and it was the end. We all huddled around a hospital cot that had been placed in my parents’ living room to make her comfortable, as she took her last breath.
In April, I started to think about breathing all of the time. The reports coming from hospitals in New York City were increasingly dire. Doctors were admitting patients who came in with mild COVID-19 symptoms and then watching their oxygen levels drop precipitously, without warning. They were rushing to get people on ventilators fast enough. There weren’t enough ventilators.
I had to take a break from reading the news reports after I got the results of my MRI. It was a standard screening, part of the routine of living with a slightly skewed genetic code. For more than a decade, doctors have been evaluating my breasts in a myriad of ways in hopes of catching an emerging cancer early. The only thing different about this test was that I had to wear a mask. And all of the receptionists and nurses and doctors were shouting from behind their own masks and face shields, often from several feet way, straining to communicate from a safe distance with sufficient kindness in their eyes.
The more striking difference presented itself when the results were in, and the doctor informed me that there was an “enhanced area” that would need to be biopsied. According to my online medical records, which I read over and over, the area was “intense” and “suspicious.”
Suddenly, I had forgotten about hand-washing protocols and rising unemployment rates, and I was seeing my grandfather and my mother. Then, my aunt, who beat her first breast cancer into remission only to have it come back with a vengeance a few years later. Her youngest son was a toddler when she died. Finally, my uncle, her brother, was diagnosed with prostate cancer in his 50s. He followed in the rapidly slowed footsteps of his father; the cancer spread to his bones, and everywhere else, before he died.
A few years ago, I ate some hallucinogenic mushrooms. At the height of the trip, I ended up in front of my bathroom mirror, mesmerized by my own face. I opened my eyes as wide as possible and re-focused, and all of the features that had been layered onto my visage to make it exclusively mine disappeared.
What I saw in the mirror was the underlying structure, the blueprint on which my face had been shaped. It was my grandfather’s, first. And then my mother’s, my aunt’s, my uncle’s.
In the small town I grew up in, strangers had been approaching me my whole life to tell me they knew immediately, from miles away, which family I belonged to based on my facial features. But suddenly I saw the startling simplicity of the lineage laid bare. It wasn’t a lineage at all. It was all inside of me, buried and layered and twisted into the strands of damaged DNA that explained my existence.
When I began to panic over the MRI results, and later, await the results of a biopsy, I realized that understanding of my existence meant that while I had seen my own death over and over, I could not picture myself as a senior citizen.
I had endless images to reference for a composite of what I’d look like during chemotherapy, after I’d lost my hair and my cheeks sunk into hollows and a pale yellow hue washed over my skin. But none to suggest how my face might weather gradually over time, how my dirty blonde locks may turn a certain shade of gray as I entered my seventies, how my long gait might shorten noticeably as my shoulders hunched forward.
While lying in bed, I wracked my brain, flipping through images in its catalogue to create a future, 85-year-old me. I thought, “I won’t die my hair. I’ll let it change naturally until I have long, coarse, silver mermaid waves.” I scrunched my forehead, eyes, and lips to create simulated wrinkles where they would later be etched permanently. I thought, “I’ll still wear red lipstick all of the time.”
But the only image I could create had the same eerie quality as Robert De Niro’s face, de-aged by special effects, in The Irishman. It looked like you might expect it to look, but you could tell it wasn’t real.
On the first of May, a nurse told me to squeeze her hand as hard as I needed to during an MRI-guided biopsy in which the doctor said she “wouldn’t be able to extract breast tissue without also taking muscle.” It was going to be more painful than they expected.
When it was over, I steadied my arms enough to flip onto my back, and the doctor pinched my breast with gauze between her fingers for a nice long while to stop the bleeding. While she held my breast, she spoke to me through both her mask and face shield, telling me the trembling was normal.
The doctor was overwhelmingly kind and invested in the risks my history presented. She went out of her way to take care of me, while I wondered if her team would have enough PPE and what the next few months would bring to Baltimore’s health care system, which so far had not been nearly as overwhelmed as New York’s. Would the nurse who gently cradled my hand as I cried out in pain and bent down to tell me I was “doing great” be moved to an ICU, where she’d put on a new pair of gloves to do the same for a patient on a ventilator?
The doctor said we wouldn’t know about the results of the biopsy — benign or malignant — for a few days, but that no matter the result, she was recommending surgery.
At first, I thought of the latest reports of how many young people were unexpectedly dying from COVID-19 weeks after it was said to only be dangerous to the old. I thought of my best friend in New York, who recently lost her friend, a teacher she had worked with for years. He was newly married and in his mid-30s and had died after weeks on a ventilator.
I thought, “Who am I to be afraid of a mastectomy, when I feel so strong and healthy? Who am I to fear a mass of threatening cells when I can so easily inhale and exhale deeply?”
Later, my thoughts began to swim in the other direction. I thought about what having major surgery during a pandemic would look like. Surgery makes one weak, and wouldn’t a body recovering from such significant injury be more susceptible to the coronavirus? If I did have cancer, would I be willing to undergo chemotherapy, another process that weakens the immune system and had slowly drained each member of my family of their vitality without saving one of them? What if going to the hospital to save myself from this thing that’s supposed to kill me means I contract this other savage disease that no one has prepared for?
My body lacks defenses against several types of cancer, but an unknowable number of people lack defenses against COVID-19’s viral fury.
On Cinco de Mayo, as photos of tacos and margaritas that restaurants wouldn’t be serving this year filled my Instagram feed, a breast surgeon looked me in the eye and said the lesion that had been biopsied was “benign.”
The breasts that belong to me would still need to be removed and replaced soon, but at the moment, without a detectable cancer, the urgency was no match for a pandemic. It took a full week for the news to sink in.
When you test positive for a mutation like BRCA2, it is a genetic counselor’s job to plot the possibility of various cancers filling your future like an astrologer reading your star chart, using statistics and research studies to send you spinning into the black hole that is sitting somewhere entirely predictable on your lifeline. 70 percent lifetime risk of breast cancer. 20 percent lifetime risk of ovarian cancer. Unknown elevated risk of pancreatic cancer — and guess how deadly that one is?
Then, COVID-19 comes along and reminds you that data, as a rule, applies only to the known universe. Oh, how little we know.
Last spring, I lived in Brooklyn, and if there was a foot of space left in a crowded subway car, I would throw myself into the shrinking gap between the doors and shimmy in between the bodies packed in, exposed elbow to belted waist to sweaty leggings. Skin pressed up against poles against bags against limbs, everyone coughing and sneezing and sharing the same stale air. One year later and I live in Baltimore and I wear a mask and walk in the street to put six feet between myself and the few others who are walking their dogs on quiet sidewalks.
People who were gainfully employed a few months ago are lining up at food pantries, and I spent the summer learning to plant and tend and harvest more vegetables than the farm knew what to do with. The country is facing an overdue racial reckoning, and a racist tyrant threatens our democracy. California is burning to the ground, and recently, a baby robin stretched its neck out from deep inside a nest on my front porch and declared its presence with a startling squawk. I have lost so many people over the years, and during my cancer scare, my siblings loved and supported me fiercely, from miles away, on screens with faltering WiFi signals dropping every fifth word.
Within this veritable mess of contradictions and uncertainty, I want to live.
Earlier, right after the doctor informed me of the suspicious area, when I was living in the gray area between terror and acceptance, my partner and I settled into our bed for the night. Our love is deep and strong, but compared to many people who face the threat of serious illness together, it is also relatively new. In the dark, I whispered a question we had yet to address. “Do you think about death, often?” I asked him.
In the silence, I could hear him flipping through the pages of my history, reviewing the stories and statistics I had shared with him. Suddenly, he was aware that I been doing the same since the moment the doctor suggested something was amiss. In fact, I had been doing it — both consciously and subconsciously — since I watched my grandfather eat that slice of birthday cake 24 years earlier.
But he had not seen or lived through what I had. For him, it was the story of my past, and I was a beginning. “It’s too early for that,” he said.
Now, surgery. The doctor said it’s time. The operating room is back in business, now that the hospital has figured out how to function in a universe reordered by a microscopic parasite that exists in the scientific gray area between living and nonliving. And the surgeon, from behind her plastic shield, has informed me that “benign” is not good enough when it comes to living in a body intrinsically coded with damaged DNA.
How many others, like me, are now facing the consequences of having personal pandemics tucked into the nuclei of the cells that make up our fragile bodies — within a world redefined by COVID-19? As I wrestle with the possibility that I may never feel the warm press of a hug on my chest again, I am forced to subject my partner to a routine of overzealous squeezing. It’s just not safe to get that close to anyone else.
How many others, like me, might lose their health insurance in the midst of it all because of our president’s attack on the Affordable Care Act, while his spokesperson uses a version of my story to emphasize a bold lie about how much he cares about the lives of his people? A supportive phone call after a difficult procedure is comforting. Access to follow-up care and future screenings for other cancers is a matter of life-and-death.
In quiet moments, these issues consume my thoughts. On September 17, I will let them go — along with my breasts.
As I am wheeled into the operating room to part with the cursed tissue I inherited and the cold air surrounds me and the blur of anesthesia starts to set in, I will attempt to embrace a new future.
Because I have decided that there is a good chance that the surgeon will skillfully extract the bundles of fear coiled beneath my nipples. Perhaps she will cut them away neatly, throw them in with the medical waste, and replace them with silicone-crafted relief. And maybe after the many weeks of painful recovery, as I start to regain my mobility, that relief will flood my synapses so profoundly that my brain will create a new picture.
A picture of a still-curious, passionate old woman who has perky fake breasts and plenty of wrinkles, especially when she laughs or expresses concern. A woman who smiles to herself when she remembers how her elders warned her she would regret her tattoos, which are now faded and creased into a poignant patchwork of youthful decisions, remembered. Her regrets are etched much deeper than ink on skin; they do not torment her, but occasionally, she still considers whether she might have lived differently.
Despite forgetting each day’s minutiae due to her age, the woman remembers the pain of losing her mother at a young age. She remembers the pain of losing her grandfather, aunt, and uncle, and the pain of waiting her turn at illness for over a decade, and the pain of the COVID-19 pandemic.
She is stronger for having lived and loved through it all, double mastectomy included. Instead of a mask, she is wearing bright red lipstick, and smudges often linger beneath her bottom lip.