American Women, Please Learn From What I Went Through
· The Atlantic
Last fall, in the sunroom where we eat our meals, my 11-year-old son and I sat at the dining table—he on one side, I on the other. Because of my low immunity, I sat apart from him, by an open window.
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Six months before this, a doctor had phoned me with the news: suspicious for malignancy. For quite some time, my body had been sending signs—fatigue, bloating, light bleeding—but I had dismissed them for various reasons. I’d been raised to diminish my needs; my doctors didn’t seem concerned; I’m a mother working two jobs and didn’t have time to be sick. The official diagnosis came shortly thereafter, during surgery: ovarian cancer.
Dinner was quiet. I was usually the one who started the chitchat about school, swim team, and chemo side effects. But that evening, I was consumed by visions of other tumors, growing undetected in other bodies. “The silent killer” is ovarian cancer’s nickname. My cancer was so silent that two gynecologists hadn’t considered it as a possible diagnosis, and at least one radiologist had entirely missed my tumor—as wide as a peach and as long as my hand.
While I was on tour for my first book, a work of fiction, many readers asked if it was autobiographical. I would answer that it was 1 percent based on real life and 99 percent imagination, without saying which was which, because I like my privacy, and I am essentially made up of tiny lockboxes, some of which are hidden even from me. Now all I could think about was real life—and the urge to write about it. But I felt conflicted. So, while stirring my bowl of bone broth, I asked my son for his thoughts. He kept his eyes down and didn’t speak for a long time.
Ovarian cancer is the deadliest of all gynecological cancers. The American Cancer Society estimates that more than 21,000 women in the United States will receive a new ovarian-cancer diagnosis this year, and about 12,450 will die from the disease. Its five-year relative-survival rate is about 50 percent. By comparison, the rate for prostate cancer is more than 98 percent. The rate for breast cancer is just over 90 percent.
The symptoms of ovarian cancer can be frustratingly unremarkable: abdominal pain, bloating, irregular bleeding, painful intercourse, pelvic discomfort, changes in appetite, changes in bowel and bladder habits, fatigue or loss of energy, unusual weight gain or loss, upset stomach, heartburn, back pain. Indicators can be so subtle and nonspecific that doctors tend to misattribute them to other, more common, ailments—which can delay diagnosis, sometimes for years. Many people who experience symptoms also find endless alternative explanations for them: It was something I ate. It’s a fact of midlife. It’s perimenopause. Or simply: This is just what women go through.
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A depressing truth is that by the time doctors order blood tests or imaging, ovarian cancer is typically at an advanced stage. Nearly 80 percent of cases are diagnosed at Stage 3 or 4, meaning the cancer has metastasized to distant locations. Eighty percent. The five-year relative survival rate for late-stage ovarian cancer is about 30 percent. Even if the disease is diagnosed at an earlier stage, the survival rate depends on multiple factors, not least of which is the type of ovarian cancer one has (it’s estimated that more than 30 types exist).
Andrea Gibson, the poet whose struggle with ovarian cancer was chronicled in the award-winning documentary Come See Me in the Good Light, and who died last year, was diagnosed at Stage 2B. To put this all another way: It means that if your best friend gets diagnosed and has a son in seventh grade, she is unlikely to see him graduate from high school. It means that your mother will most likely expire before your car warranty. It means that the stuff in your freezer may outlive your sister.
The first more-than-unremarkable symptom came while I was delivering a lecture on the art of revision to my college writing students. “Being a good reviser is not unlike being a good person,” I told them. “A good person puts aside their own needs for the sake of others. A good writer puts aside their own needs for the sake of the reader, for the sake of—” and there, right there, was when I felt it. A tiny blowtorch in my stomach, just below the sternum. I sat down to finish my sentence, quickly invented a small-group discussion prompt, and escaped into the hallway.
I had never been so happy to see a bench. Bent over, head to knees, I considered my options: (1) Get to the restroom; though what if I were to faint in a stall? (2) Cancel class and go to the ER; but in 20 years of teaching, I’d never canceled class—not when my parents died weeks apart, not even when I miscarried. (3) Self-diagnosis; it could be an ulcer, or maybe stomach cancer (the cause of my father’s demise), or maybe it didn’t matter what it was, because I needed to get back to my students. Put aside your needs for the sake of others, I’d just told them, and my survival instinct kicked in: You’ve been through worse. That was pain. This is not pain. I decided it was acid indigestion and got back to work.
Days later, while dressing in the morning, I saw my torso in the mirror and froze. I looked about four months pregnant, except I was bulging from all sides, like a taut barrel. I snapped a photo, if only to share it with girlfriends (#joysofperimenopause), and slipped on an A-line dress that hid my middle. Running late, I called a cab, then logged on to an app to make an appointment with my general practitioner. She was booked four months out.
I almost didn’t make the appointment. In this, I’m hardly alone. A 2024 survey by the Deloitte Center for Health Solutions found that 50 percent of women respondents had skipped or delayed health-care services over the past year, and that women were 50 percent more likely than men to delay or skip an appointment because of a long wait time. So there I was—rationalizing that the bloat would resolve on its own, just as the torchlike pain had. But before giving up, I did one simple thing: I wrote a message to my GP.
I think of how easily I could have not done this. How I could have ignored my body and instead spent those spare minutes loading the dishwasher, mindlessly scrolling on social media, or waiting outside so as not to make the driver idle for 30 seconds as I exited my building. But this one simple thing took less than a minute: torchlike pain; barrel-like bloat; send.
In retrospect, I can see I had symptoms long before this. On two occasions, I’d had unusual bleeding, also known as spotting, a term I hate, as it sounds less like a medical concern and more like something that needs cleaning. Both times, the bleeding had been minimal—about three pomegranate seeds’ worth of red each day—but it lasted months. The first bleed had happened years ago. An ultrasound and a uterine biopsy came back negative. Call if the bleeding continues, I was told. Eventually, it stopped.
The second bout had occurred more recently, four months before the torchlike pain. The ultrasound again showed nothing unusual. Call if it continues, I was told again.
One day, on my walk to campus, I recalled all of the spot bleeds in my life, beginning with my first period, which came when I was 11, at a sleepover. Because I’d grown up somewhat cloistered, I’d never heard of menstruation and thought I was bleeding to death. The next day, when I told my mother about it, she seemed disgusted and walked out of the room. From then on, I learned to keep my mouth shut about my private parts.
Then there was the time when I was pregnant and visiting Connecticut, about to give a lecture. An hour before stage time, I sat in a hotel bathroom, staring at the dark dots on my underwear. I never made it to the lecture. Later, as I sat in a dank ER dreamed up by Lars von Trier, a young doctor informed me that my three-month-old fetus no longer had a heartbeat. The doctor left without another word, leaving me alone with the ultrasound machine that continued to not make a sound.
On the walk to campus, I connected all of the bleeds and the various ways in which each episode had led to silence, grief, and dismissal. Advocate for yourself was the battle cry of the American patient. Yet what had been whispered to me from birth was: Don’t complain; don’t trouble anyone. Now I told myself, Don’t worry about this spot bleed. I thought about how the word hysteria comes from the Greek for uterus. I thought: You don’t want to prove them right.
The day after I messaged my GP, I got a call from her nurse, who asked me to reiterate my symptoms. “Hmm,” she said, and offered a choice: Wait four months or make an appointment with the “overflow” doctor. Now it was my turn to hmm. I considered my work and parenting obligations and weighed them against the odds of this doctor, like others before her, telling me, Call if it keeps happening. (Deloitte reported that in another of its surveys, more than 40 percent of women respondents had delayed care because they were discouraged by previous experiences, including instances in which a provider had discounted their complaints or misdiagnosed a problem.)
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While I was contemplating, the nurse discovered that the overflow doctor had an opening the next day. This tipped the scale to yes. “Sure” is what I actually said, casually, as if my life didn’t depend on it.
The overflow doctor had benevolent eyes and doughy cheeks, like fresh loaves of bread. Even her voice sounded like something just pulled from the oven. I liked her. She didn’t rush; she inquired about my symptoms, listened expressively, gathered intel for about 30 minutes. She asked if I’d been under stress, and I nearly chortled. What middle-aged working mom wasn’t under stress?
Her diagnosis: stress-induced gastritis. It sounded embarrassingly unserious. Wanting to crawl under something, I started gathering my things and looked forward to beating myself up at home. But then the doctor stopped me; she wanted to examine me. I lay down, and she poked around my torso. Does that hurt?
Never a fan of admitting pain, I told her not exactly; it was more like—and she poked again. I jolted. “Maybe I’m just ticklish,” I told her. She poked a third time. I jerked again. She told me it was probably nothing, but because it was on my right side, she wanted to order a CT scan to rule out appendicitis.
Sometimes, when I startle awake in the middle of the night, I think: If my tumor had been on my left—if there’d been no need to rule out appendicitis and therefore no need for the scan—what then?
Before the scan, I saw myself aging gracefully to 100. “Centenarian novelist” is something I’d actually said aloud. Before the scan, I easily imagined seeing my son graduate from middle and high school, and then seeing him off to college, where I would help him decorate his dorm room. I would see him fall in love, have kids, a career. Hubris or ignorance let me believe I would witness it all—the milestones, the good and the bad, though truthfully, I mostly imagined the good.
After the scan, the overflow doctor called. It was past dinner. I picked up and joked that this couldn’t be good news, because no doctor ever calls with good news, and certainly not this late. She did not disagree. Her silence made me dart to my bedroom, away from my son, who has bionic hearing. I’m sorry, she finally said, her voice falling an octave.
That night, a glass partition rose. My friend Aleksandar Hemon, in a devastating essay about his infant daughter’s cancer diagnosis, wrote, “I had a strong physical sensation of being in an aquarium: I could see out, the people outside could see me (if they chose to pay attention), but we were living and breathing in entirely different environments.” In the past, I had understood these words. Now I felt them. My old self lived on the other side of the glass. That version of me was sturdy. She lived and loved in a time of no disease. At first, I thought only she and I were divided by the before and after, but I soon realized that my family, my friends, maybe the entire world lived on that other side. After the scan, I bobbed in an aquarium of solitude. I felt alone, and somehow also exposed.
I told only a few people about the diagnosis. An elderly family member called to offer comfort and asserted that my son and husband would be absolutely fine if I were to die. After this, I refrained from telling anyone.
I was raised—by my family and my first and second cultures (Korean, American)—to either remain silent or speak in hushed tones about weaknesses and troubles. To discuss anything related to the pelvic region, especially menstruation, went against all norms. Maybe this explains why we have thousands of euphemisms for women’s cycles. (One Spanish phrase translates roughly to defrosting the steak.) With so much artistry, you’d think we’d be able to talk more freely about the monthly shedding of the uterine lining. But no. I myself have gestured to my pelvic area and called it “down there,” as if a cartographer were needed to name this uncharted region. I’ve heard myself say “lady parts” or “vagine” in a French accent, using humor to hide discomfort—and that’s with my closest women friends. As for men? The only time I’ve heard them talking seriously about the female reproductive system is when they’re trying to control it.
I was also raised to believe that pain was integral to being female. To complain about cramps was futile. (Even the word cramps makes the pain sound trite.) So, from an early age, I practiced silence—first about period pain, then about all pain.
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Case in point: After my CT scan, a radical hysterectomy was scheduled. If all went smoothly, it would take my surgeon about two hours to remove the ovaries, fallopian tubes, uterus, cervix, omentum, and 15 lymph nodes. But all didn’t go smoothly. My surgeon made an incision, froze a section of the tumor, sliced it, and sent it to pathology, where a speedy report confirmed its malignancy, which she expected. What she did not expect was endometriosis—a condition in which tissue similar to the lining of the uterus grows outside the uterus, causing heavy and especially painful menstruation. The endometriosis was so extensive that my abdomen was drowning in lesions, scar tissue, and adhesions. Everything within was stuck together or to the bowels. For six hours, my surgeon (now hero) meticulously peeled off the glued organs, making sure to avoid spreading the cancer.
During post-op, I learned that I’d probably had endometriosis my entire life. For four decades, I’d lived with painful periods and bleeding so horrible that I once had to rush to the hospital to receive two bags of blood. For four decades, my body had screamed. But instead of listening to it, I had dismissed it. I’d downgraded the pain. Called it normal.
The size of the tumor suggested that it might have been growing for a long while. But in what I can describe only as sheer luck, some of that sticky endometrial filament had traveled to my fallopian tube and sealed the tumor in tight. My surgeon, who works in one of the top hospitals in the nation, said she had never seen anything like it. The endometriosis held me at Stage 1. It had stopped the cancer from spreading to my ovaries, where it tends to metastasize with great speed.
I had failed to take care of my body. And yet, in the end, it had chosen to take care of me.
That autumn evening in our sunroom, I waited for my son’s thoughts. He was a stone’s throw from puberty. He’d seen his mom transform from a strong, independent woman into a person who struggled to make meals and who, after three rounds of chemo, looked like a deflated monk. Cancer had provided an early exit out of his childhood. Yet through it all, he had complained not once. More telling, he had opted to not tell a single friend about the cancer, because he feared being pitied. I came to suspect that he was as private as I was, if not more. So in asking my question, I suppose, I was also asking for his permission.
He chewed his dinner more carefully than usual. I looked out the west-facing window. The sun was setting, and our cube of a dining room turned into a tank of gold. “If the essay puts some goodness into the world,” he finally said, “I think you should do it, Mom.”
And there, right there, was when I felt it—not pain but a twinge of sorts, his sentiment piercing me like an arrow, in a place that cancer couldn’t reach. My little boy was putting aside his own discomfort for the sake of someone else—for me—and with his generosity, my aquarium glass softened, just enough for me to push my hand through and reach for his.
Being private can be empowering; you get to decide which lockboxes to open and for whom. Self-silencing pain and allowing it to be silenced, however, had not served me well. It took a cancer diagnosis to break this habit, this inheritance, this other silent killer. It was not just endometrial luck that saved me. It was also the decision to believe my body, to turn up the volume a notch and let it be heard.