An ovary is the size of a strawberry. A uterus is the size of an apple. A fallopian tube is the size, roughly, of a cinnamon stick. The length of a human chromosome varies depending on which chromosome we’re talking about. The length of chromosome seventeen is 83,257,441 base pairs. Nobody compares a chromosome to the size of a food item. Likewise the length of a specific gene on a chromosome depends on which gene it is. The length of breast-cancer gene 1 — also known as BRCA1, a tumor-suppressor gene — is 110,000 base pairs. Certain variants of BRCA1 can interrupt the tumor-suppression process, often leading to cancer in the breasts or ovaries. My family’s particular variant of this gene, c.4035del (the del stands for deletion), takes up one base pair of space, which is a little larger than the width of a water molecule. If we measure the intensity of loss by the volume of what has been lost — the larger the object, the larger the grief — then I have not lost very much. I do realize this.
Located on the seventeenth chromosome, the BRCA1 mutation c.4035del originated in the fifth century CE in Lithuania, back when Lithuania was not a country but an isolated tribal homeland of forest and swamp and low genetic diversity that nobody wished to invade. This pathogenic variant began as a single mutation in a single individual and has been passed down through my ancestors for approximately 1,500 years. My grandma Stella passed the variant on to two of her children, my aunt and my father, and my father passed the variant on to two of his children, my older sister and me. I won’t know whether I have passed the variant on to my two children until they reach adulthood and undergo genetic testing. I would like to give you a metaphor that describes what it’s like to potentially pass on to one’s children a pathogenic variant that will possibly go on to kill them, but everything I am coming up with is histrionic.
My grandma Stella received the variant from her mother, Anna, who was born in 1890 in the rural village of Platkepuriai, Lithuania (then Russia). She immigrated to Chicago via Ellis Island in 1919 to become a housemaid. I have seen five photographs of her. In one she is already in this country, already married, already a mother, meaning she has already passed on the mutation that will eventually kill her daughter and, later, her granddaughter. She wears a light-colored dress with lace sleeves, a white rose pinned at the center of the neckline. She herself received the variant from either her mother or her father, but following the mutation farther back than this becomes nearly impossible, as nineteenth-century Lithuanian villagers did not leave behind troves of written records for me to rummage through.
I used to think my family didn’t have any stories to tell, that we weren’t that kind of family, but I see now I was using the wrong definition of a story.
Here’s one family story: My grandma Stella died of endometrial cancer, also known as uterine cancer, at the age of fifty-eight. I don’t remember her. I was two when she died. I named my daughter after her.
Here’s another: My grandma Stella’s daughter, my aunt Mary, died of ovarian and endometrial cancer at the age of fifty-nine. I do remember her.
And another: My grandma Helen died of ovarian cancer at the age of sixty-one. She was on my mom’s side of the family and did not carry variant c.4035del on her seventeenth chromosome, but because she shared the agony of gynecological cancer, I am including her in this essay. She had a brown dachshund, I remember, and was eventually put on a ventilator.
There are fifteen generations of other women in my family who died too young.
Female BRCA1-mutation carriers have a 65 percent lifetime risk of breast cancer and a 40 percent lifetime risk of ovarian cancer (compared with noncarriers’ risk of 12.5 percent for breast cancer and 1.3 percent for ovarian cancer). As it is difficult, maybe impossible, with current screening technology to identify ovarian cancer early enough for treatment, the National Comprehensive Cancer Network recommends that women with a BRCA1 mutation undergo a risk-reducing bilateral salpingo-oophorectomy — the preventive removal of the ovaries and fallopian tubes. My genetic counselor and my surgeon both recommended that I remove my uterus at the same time to reduce the risk of papillary serous carcinoma, a rare form of uterine cancer that may be related to BRCA1 mutations. Another benefit: uterus removal allows for simpler (and likely safer) options for hormone-replacement therapy, which I will need, to treat the surgical menopause I’ll enter once my ovaries are removed. I can deal more aggressively with my breast-cancer risk later, my genetic counselor said, as long as I have a breast MRI or mammogram, plus a clinical breast examination, every six months.
I have always wanted to tell horror stories in particular.
Once, in her ovaries, a girl had 7 million eggs. Now she has none. That’s a true story. Guess who the girl is. I lost the last eleven thousand eggs all at once when I was forty-three. A surgical robot stuck its four robot arms into four scalpel cuts (also known as “ports”) on my abdomen and severed my fallopian tubes and ovaries and cervix and uterus from my body. Those parts of me were pulled out through my vagina. I don’t care how quietly and calmly surgeons talk about “minimally invasive procedures”; this was a violent act involving lots of cauterization. My vagina now leads to a vaginal cuff, meaning it leads to a dead end — specifically a line of scar tissue. This past year I have wondered: How much of myself can I lose before I am no longer myself? And also: How many female reproductive organs can I lose before I am no longer female? These are not fun questions. Perhaps it is finally time to let go of ill-fitting binaries. I exist in the space between female and non-female, between who I was and who I am. I wish the space were better lit and had couches.
The next surgery I undergo will be the removal of my breasts, each the size of an orange.
Around the time of my first surgery, I was writing a story in which cancer is a monster that attacks families. Specifically my family. Specifically the women in my family. Here is how the story begins:
One day, on the other side of the city, my grandma Helen asks, “What is this?” She pulls down the elastic waist of her pleated blue skirt. There are marks across her skin. Some of the marks are on the surface, though others are deeper. Puncture wounds. Her husband, John, places his fingers on the punctures. Wait. My grandfather John is already dead. (Pancreatic cancer, forty-two.) Helen lives alone. She has lived alone for decades. It’s the ghost of John then. He puts his fingers there and presses the swollen areas of her skin until she winces. “Go to bed,” the ghost of John says. Helen goes to bed. When she wakes up, she’s alone. It is a single bed, in a condo without a yard. There’s an old TV that has dials, and there are aloe vera plants along the windowsill and vitamin-C tablets on a shelf and Baileys Irish Cream in the refrigerator. She is bleeding. She is lying in a puddle of blood. There are additional marks on her lower back, which she can see if she stands in front of a mirror, dripping blood, and lifts her shirt and looks over her shoulder. She knows she’s dead.
If you have actual cancer and survive, you are a cancer survivor. I, on the other hand, am a cancer “previvor,” which is a word not yet recognized by the Oxford English Dictionary. Invented in 2000 by the advocacy group Facing Our Risk of Cancer Empowered (FORCE), previvor was Time magazine’s number 3 buzzword of the year in 2007. The number 1 buzzword that year was cougar — meaning an “older woman who romantically pursues younger men.”
Before my surgery I attended a support group for ovarian- and breast-cancer survivors and previvors. I felt silly being there. Despite the group’s inclusive mission statement, I was the only one who hadn’t had cancer, or whose daughter hadn’t died from cancer, or who wasn’t a caregiver to someone with terminal cancer. One woman’s ovarian cancer had spread throughout her body, and she’d recently had a tumor removed from her brain. She sat in a wheelchair, a scarf wrapped around her head. Another woman had had her cancerous ovaries removed by a surgeon who later murdered his wife. (The surgeon claimed it was an accident.) This woman had then developed peritoneal cancer, which is closely related to ovarian cancer. There was another woman whose daughter had died of ovarian cancer. Several of these women were probably going to die soon. Someone had brought a frosted cake.
I shared that my grandmother had died of uterine cancer, and my aunt had died of ovarian and uterine cancer, and my other grandmother had died of ovarian cancer. Watching a relative die is not the same as dying yourself. My aunt who died wore a wig to my wedding. She had been diagnosed with her initial cancer the year I got married. I remember telling my aunt at my wedding that I loved her hair; it was so fashionable. She leaned toward me and whispered, “It’s not my hair.”
She was scattered, as ash, into Lake Michigan.
“Did you bring anyone with you?” the gynecologist-oncologist-surgeon asked at our first meeting. Kleenex boxes were everywhere in the narrow room: on the conference table, set discreetly upon the windowsill.
“No, it’s just me,” I said, and she looked at me with surprise, with pity, like I was such an amateur at this.
Early on in my “journey,” as it is called, my mother spent her evenings researching BRCA1 mutations. She sent me links. I checked out her links. I sent her different links. I read papers with titles like “Molecular Analysis of BRCA1 in Human Breast Cancer Cells under Oxidative Stress.”
“Maybe I don’t want to know,” murmured my younger sister, who got the blood test anyway. She does not have the mutation. That means her daughter will not get the mutation from her, nor will her son, nor will her daughter’s future daughters and sons nor her son’s future sons and daughters. My younger sister does not have to decide which parts of herself she is willing to lose. I am happy for her. That is what one says: I am so happy for you. Though, to be honest, this journey is a lonely one, and I would have welcomed the company.
After my surgery had been scheduled but before it took place, my husband told me that a friend of ours and his wife were going to have a baby. “She must be younger than us,” I suggested, because surely women my age were too old to be having babies. No, said my husband, she is about our age. People our age on occasion have babies. My husband’s brother and his wife were, in fact, having a baby, too. My neighbor whose yard I can stare into when I’m brushing my teeth or standing beside my bedroom window or standing at the attic window was also having a baby. On a Spanish television show my husband and I watched together in the evenings, the female police chief explained to a young female criminal that if she got out of prison in twelve years, she, the criminal, would still be pretty. But if the sentence was increased to twenty-four years, she would be in menopause, and it would be as if her life had passed her by.
It is not that I want another child, but I enjoy, or used to enjoy, thinking about having another child. I enjoyed the thought of a surprise baby, of holding a newborn I’d never expected, of my daughter and son holding with wonder their surprise sibling.
A nurse told me at my preoperative appointment, “They’ll want you up and out of bed soon after the surgery, though you might still have a catheter in.” I searched online for What does having a catheter feel like? (A burning feeling around your urethra.) I searched for What foods should I eat after a hysterectomy? (Cheese, leafy vegetables, bran.) Over Christmas I said goodbye to my mother, who cried as she hugged me, something she had not done before. The next time I would see her, she would have a uterus, and I would not. Should I list all the women in my life who will have uteruses while I will not? What an interminable list that would be.
The pediatrician asked my ten-year-old daughter, at her last well-child visit, if she had gotten her period yet.
“I don’t know,” my daughter said.
How could you not know? I wondered, though perhaps, in the busyness of daily life, I had forgotten to explain menstruation to her.
“She hasn’t,” I said.
“Soon,” the doctor said, noting that my daughter was beginning to develop breast buds.
Like a flower, I wanted to ask, or like a tree? Because those are two very different types of buds.
On the drive home I asked my daughter if she knew what a period is.
“Isn’t that when blood comes out of your butt?” she replied.
I said it’s something like that.
The irony is not lost on me that, as I am losing my uterus, my fallopian tubes, my ovaries, and (soon) my breasts, my daughter is becoming fertile — which I now see is a type of power. The potential to be a mother, I mean. You don’t actually have to become a mother. It’s just the ability to birth a child, to create a human being inside of you, whether you carry out that act of creation or not. The opposite feels like invisibility, which — I know, I know — would have happened to me eventually.
Thousands of robotic-hysterectomy-surgery videos exist on YouTube. They come from hospitals all over the country: Syracuse and Denver and Chicago and Baltimore and Cleveland and Atlanta and Murfreesboro, Tennessee. The featured screenshots are generally of a woman’s red or pinkish reproductive organs, though the image beside the video from the Valley Hospital Medical Center in Las Vegas, Nevada, shows a woman riding a horse. Before my surgery I watched a 2012 video of a robotic hysterectomy from St. Luke’s Hospital in Cedar Rapids, Iowa. I wanted to know everything that was going to happen to me. A local reporter dressed in hospital scrubs and a hairnet introduced the video. Beside her sat a surgeon. I enjoyed the surgeon’s choice of adverbs: gently and subsequently and accurately. The reporter preferred obviously, and while the surgeon was talking about the cost of the surgical robot — which in 2012 was $1.6 million but is currently more like $2 million — the reporter nodded in a knowing manner. Her adjectives included fantastic and very nice.
After the surgeon fielded questions about recovery time and sterility and ovaries, the camera switched to the operating room, which was occupied by two men, the chief surgeon and the assistant surgeon, and seven women: the anesthesiologist, the five-person scrub team, and the patient — whom I will call, from this point on, simply “the woman.” The woman’s face was blocked by a blue surgical sheet. The woman’s legs, in stirrups, were also covered by a blue surgical sheet. To the viewer she was a distended stomach surrounded by sterile blue sheets. I would say a “sea of blue,” but this particular shade looked nothing like the sea.
The inside of a woman’s body is not a beautiful place; that was my takeaway. It’s nowhere you would want to live. The claws of the robot prodded her organs. There was violence, delicately. This had to hurt. Where does pain go that isn’t felt? The video neglected to address this question, so I watched another video from St. Luke’s, this one from 2019. I watched it at 1.5 speed so I wouldn’t be late to pick my daughter up from school. The surgeon in this video, who had done thousands of these procedures, talked about the journey an egg makes as it moves into the fallopian tube, which this woman did not have, because her fallopian tubes had previously been removed. But if she had had a fallopian tube and there had been sperm, this was where the egg would get fertilized, said the surgeon as he made the robot point to the spot of imagined fertilization. Then the (imagined) fertilized egg would enter the uterus — which the woman would soon not have, because her uterus was about to be pulled out through her vagina. And in the uterus the (imagined) fertilized egg would implant as a pregnancy — hopefully, said the surgeon as he cauterized the woman’s blood vessels. The charred areas became dark and ruby-like. The woman’s blood pooled.
In between doctor visits and viewings of robotic-hysterectomy videos, I made an appointment with a local veterinarian who treats exotic pets, as my daughter’s dumbo rat, Belay, had lately looked swollen and lethargic. The rat had a tumor in her abdomen, said the vet — probably in her ovaries or uterus. To prevent the development of tumors, rats can be spayed — which means their ovaries and uteruses are removed, usually at around six months. But it was too late for Belay. I scheduled an appointment the following week to euthanize her. I cried. My daughter cried.
Rats are better pets than you might think. Sweet and intelligent, Belay would perch happily on my husband’s shoulder while he did the dishes. She would curl up comfortably in my daughter’s bathrobe sleeve and refuse to leave. The day before my surgery, my daughter and I took Belay into the backyard, which was barely grass at this point in January, more like mud with the occasional green blade. Belay’s black eyes were sunken. She pressed herself against the fabric of my daughter’s shirt and dropped loose yellow stools. We set her on the ground, no longer afraid she would run off, since she could barely walk. She waddled away from us. She waddled back. Gusts of wind blew small branches down from the silver maples. My daughter leaned over and formed a protective shelter for Belay with her hair. By evening the weather had become dangerously windy and warm, the branches either motionless or whipping around. The low clouds moved hastily.
After my surgery, time passed slowly. The tea in the plastic hospital mug tasted like coffee. The catheter was uncomfortable. My abdomen hurt. I entered surgical menopause. I threw up. I continued to feel like I was about to throw up. I sipped ice water from a styrofoam cup. The oximeter clipped to the second finger on my left hand had a light that turned my skin translucent and red — just like E.T., I told my children, who were fighting over who got to sit in the armchair. My husband took my children home, and I spent the night clinging to my e-reader and listening to the automatic compression sleeves that squeezed my legs to prevent blood clotting.
The day after my surgery, I left the hospital. At home I took my daughter’s dying pet rat on a walk. I carried Belay in a scarf looped around my neck, tucking a pair of flannel pajama pants on top of her to keep her warm. I wanted her to see the sun, which was there in the sky at the beginning of the walk; then a cold front must have moved in, because the sun disappeared behind a bank of gray clouds. I felt self-conscious about how I walked, like I needed to learn to walk again without those parts of me that had been removed. I expected to look different without a uterus or ovaries, but my husband said I didn’t look different, other than my posture, which was more hunched over.
Belay died at home later that day. I knew Belay was dead because my daughter said, “Mom?” in a strained voice, and I looked up to see her holding something unmoving cupped in her hands. If this was a sign — my daughter’s pet rat dying of ovarian cancer the day after I’d had my ovaries removed to prevent ovarian cancer — I would have preferred more subtlety. My mom texted me an article, which I didn’t finish, about how coincidences have no inherent meaning.
Recovering from any surgery is both an emotional and a physical process. While recovering physically, I lay in bed, allowing new sources of internal heat to roll over me as I read books about abusive relationships or murders in Guatemala or wildfires in California. There was suffering in every book. While recovering emotionally, I talked with my dead aunt and my dead grandmothers. I was home alone on the second floor and had no one else to talk to. My dead relatives huddled close beside my bed, as if to form with their bodies a shelter from the nonexistent wind. Or they could have been hiding something from me, such as my former ovaries or a cancer I might have developed.
“You are so dramatic!” exclaimed one of my dead grandmothers, rolling her eyes. They were constantly brushing dirt off the hems of their dresses. The dirt accumulated in piles on the floor. They yawned. They watched me sleep. They watched me wake up.
“Are you guys a trio now?” I asked.
“What do you really want to ask us?” said my dead grandma Helen.
“I wish you could be saved, too,” I said.
“That isn’t a question,” snapped my dead grandma Stella. “Anyway it’s too late.”
They appeared to hold a grudge. Of course they did. My dead aunt, who had always liked to draw, opened the notebook in her lap to a clean page, where she began to sketch a flying head of hair flapping across some cirrocumulus clouds — the type that sometimes indicate an approaching hurricane.
I looked in the mirror, and it was obvious that I was looking into the face of someone who no longer had her uterus. I looked like a woman whose abdominal cavity was filled up with intestines and a bladder and a vaginal cuff and the residue of the carbon dioxide that had been pumped into her at the start of the surgery. The illustrations of the female anatomy no longer applied to me.
“Oh, my God, stop looking at yourself if it upsets you so much,” said one of my dead grandmothers.
She was probably right. Perhaps, once I was healed, I thought, I should abandon this idea of writing a personal essay and go back to crafting science fiction about other people.
My dead aunt served us orange pekoe tea from a porcelain pot patterned with blue grasshoppers and moths. She served us thick slices of poppy-seed cake but refused to say who had provided the food. Probably the refreshments had come from the underworld. I ate the cake anyway — it was richly spiced but underbaked — and drank the bitter tea. Had this been a myth, surely there would have been consequences for eating food from the land of the dead. But I didn’t think this was a myth. I didn’t think it was a dream either. As I rested, my dead relatives gossiped about their hospital stays and the stages of their dying and their new forms. They could break glass with their screams, they said. They could slip under the crack of a door. “What can you do now, dear?” asked my dead grandma Helen, trying to include me in the conversation.
“I can write an essay,” I said.
They were unimpressed. My dead grandma Stella glanced at the golden watch on her left wrist and shook her head. After the cake was gone, they would have to leave. Errands, she explained. The assorted obligations of the afterlife. We finished the cake, eating even the crumbs. I wanted them to stay. There we were, four women without uteruses, fallopian tubes, or ovaries, gossiping about the ether. I wanted them to stay because I missed them — even the ones I didn’t remember — and I felt comfortable among them. They leaned over me and held my face in their hands. I breathed them in: charcoal and ash. They disappeared in a quiet detonation of loss and guilt. I was alone and hungry in an empty room.
I began driving again. My husband acted as if this were a postsurgery triumph: Look at you, driving without a uterus or ovaries! But every time I pulled into the driveway, I thought, with a rising (or was it a sinking?) panic, Where is my uterus? There was this feeling that only part of me was pulling into the driveway. I didn’t recognize myself. Someone much older than I am followed me around the house. Six percent of heart-transplant patients in a small 1992 study reported a “distinct change of personality” due to their new hearts. “The new heart has changed me,” said one. In a 2004 study 34 percent of heart-transplant patients “entertained the possibility of acquiring qualities of the donor via the new heart.” I can find no studies that discuss the removal of a heart through one’s vagina, with nothing put back in, but I imagine such a study would find a substantial percentage of personalities changed as well.
There was a benign tumor in my right fallopian tube, my surgeon said at the postsurgery appointment. My tumor was “neither here nor there,” she told me. Then where is it? I wanted to ask.
The next doctor I saw was at a high-risk breast-cancer center, who referred me to a breast surgeon, whom I will visit soon to discuss the removal of my breasts, because my collection of doctors and genetic counselors agree it would be a good idea eventually. The removal of my breasts is a subject for another essay.
Recently my husband posted several photographs of me in the hospital on Instagram. I told him to do this. I had been through a lot and was feeling sorry for myself. I wanted people to know what I had been through, and I also wanted to feel like people were giving me little awards when they liked the post. By the afternoon his post had twenty likes and six comments, which is more than he got for his picture of a large metal structure that had washed onto the beach at Cumberland Island National Seashore, but less than he got for his post about the book exhibit “Five Hundred Years of Women’s Work” at the Grolier Club.
In the early drafts of this piece, I tried including tips about how to lose gracefully one’s female reproductive organs. (Tip 1: Learn to pronounce the term “bilateral salpingo-oophorectomy!”) But I hated the idea that something useful must be squeezed from every experience. Once I removed all the practical information, the essay began to feel more truthful to me. I didn’t know where I was going with it. I didn’t want to go there. I went there anyway.
When people find out what surgeries I’ve had, and will have, they often say, “You are so brave.” But bravery, in my mind, would be what my grandmothers went through and what my aunt went through and what the hundreds of other women in my family went through. Ovarian cancer is not a clean or painless way to die. No cancer is. I was scared to die the way my relatives had died. That’s why I had the surgery.
“You have been given a gift,” many people have told me, but they do not go on to specify what this gift is. Is it the gift of not knowing my grandmothers? Of losing my aunt? Of possibly passing on a pathogenic genetic variant to my children? Of potentially getting to live a long life while row after row of women in my family tree did not?
I would like to say we are not defined by our organs, but we kind of are: the organs we have, the organs our parents and grandparents had, the organs we lost. My four hyphen-shaped scars are healing. Sometimes I forget what’s missing, but then I remember.
After Belay’s death, my husband and daughter began to visit the local pet stores. One night they came home with a cardboard box containing a baby rat who liked to tangle herself in my daughter’s hair. The next night they visited another pet store and came home with a second cardboard box containing a different baby rat. The baby rats found each other in the cage and nestled against each other’s fur.
I want to go back in time and raise my children again. I promise I would do a better job. I would love them in stereotypical ways and let them lie beside me in bed, and I would stare at them for days and days, watching them grow by millimeters before my eyes. I would be patient and full of love, and I would be on antidepressants from the very beginning so that I could be patient and full of love. If given the choice between writing and my children, I would pick my children. I used to type on the keyboard, working on my unhappy stories, while my daughter slept in my arms. Other mothers had tried to warn me that being a mother to an infant or toddler — that physical, concentrated form of mothering — lasts only a few years, so I should pay attention. I didn’t believe them at first. And then my children were grown.
Recently, on a cool fall evening, my husband built a fire in our backyard in a stainless-steel drum that uses “patented second-burn technology,” and we — meaning the family that my husband and I have made — sat around in patio chairs and watched the flames engulf the seasoned wood. My son, now a teenager, thinks fires are boring and wanted us all to go inside and play a game. My husband and I did not yet want to go inside, nor did we want to play a game. My son stomped off. My daughter needed to go inside to care for her pet rats (she has four now), and she wanted my husband’s help. My husband did not want to go inside and help; he wanted to enjoy the fire he had built. If he didn’t help, my daughter said, she would not take care of the rats. Then my daughter would never receive another pet, my husband replied. My daughter, too, stomped inside. My husband complained about our children. I went inside and wiped the counters clean. When I returned, all the chairs were empty. My husband must have gone inside through another door. The fire eventually went out. This is what parenting is like for me now: more disenchanted farce than a laying on of hands.
When my son was seven months old, he would not sleep unless my body was beside him. He wanted to breastfeed in bed throughout the night — or, if not feed, then at least be latched on to me, his mouth loose around my nipple, occasionally sucking even in his dreams. Actually he wanted to nurse throughout the morning as well, and the afternoon. And when he was not nursing, he wanted to be in my arms. I couldn’t get any sleep. For some reason I thought I needed to sleep for an extended period of time each night. I thought I needed to go back to work and have my own identity separate from my son. A friend recommended that my husband and I read a book about childhood sleep problems. We read the book and carefully followed its instructions: we laid our son in his crib and enacted a strict routine of timed appearances and brief touches. Really what this entailed was letting my son cry — no, let’s be honest, scream — himself to sleep night after night. The crying (screaming) was only supposed to last several nights, according to the doctor who wrote the book. It lasted for months. My son’s pain from those nights still clings to the ceiling in his room. “No, it doesn’t,” says my therapist, dismissing such a notion as typical mother’s guilt. But it is more than that. It is my wanting desperately to go back in time so I can rebirth my children and hold them and not let anyone else hold them, and have them wrap their arms around me and hold me, hold my body, my previously godlike body that once could call forth life. They would hold me with their kind little arms, and maybe I would stop time for a while, or forever.
