My Mom Had The Cancer Gene. So Do I.

The shaved female head is having a cultural moment. But for me it’s always been associated with the BRCA1 gene and the cancer that killed my mother.

To be inducted into this matrilineal dynasty of bald women, you must first offer up your buccal cells, gently stripping them from your tongue and the inner lining of your mouth with a sharp-tasting rinse and whipping them into an alcohol-soaked squall, then expelling the resulting wash into plastic tubes. The motion is performed twice, for 30 to 60 seconds each time. You do not question the repetition, the length of time required for each iteration, or the need for procedural compliance; instead, you aspire to thoroughness because you pride yourself on your scientific rigor, like the woman in the white coat who insisted that you do this. You are silently grateful that in this particular establishment — an otherwise unmemorable space into which you, unlike the other women in the waiting room, had entered without a belly extruding with life — they ask for saliva, not blood. Once the buccal cell–infused tubes are sealed and marked for shipment to a facility off-site, you say goodbye to the woman in the white coat, whom you can tell has mentally moved on to her next patient. You exit through the side door into the parking lot and remember that it’s still the middle of the day, and that you have to get back to the office for your next meeting.

Who can blame her for preferring conditions promissory of new life, over those premonitory of how one might die?

When she calls a couple of weeks later, you’re walking with your coworkers to lunch at the company cafeteria. You duck into a quiet nook under a staircase. Until this moment, you had forgotten about the buccal cell collection and the preceding interrogation: How old were your mother and your aunt when they were diagnosed? How old were they when they died? What kind of cancer did your mother have? What about your aunt? Any other family members? How old are your cousins now? As you press the overheating smartphone to your ear, you realize that you can’t recall the gynecologist’s face. What is familiar is her divided attention on the other end of the line; you suspect that she would rather be attending to a waiting room of pregnancies. Who can blame her for preferring conditions promissory of new life, over those premonitory of how one might die?

When she delivers the news that you’ve won a genetic lottery that you had hoped to lose, that you’ve tested positive for the BRCA1 mutation and therefore face a significantly heightened risk of hereditary breast and ovarian cancers, you find your brain drifting to the memory of the first time your mother wore a wig for a night out with the family and how you, at age 9, had inched away from her in the backseat of your family’s secondhand Volvo, unsettled by its sheen and the way it held its form. You find yourself recalling her bald head, the strange look on her face that afternoon when she murmured the possibility that you, then still a wisp of a child, might have to confront an unwanted genetic inheritance in adulthood. Because the thought pained her so, or maybe because the thought of a divine universe so cruel or a daughter so unlucky seemed inconceivable, you did not hear her consider the possibility aloud again.

The medical term for hair loss, alopecia, is derived from the Greek word for fox — alopex. I’m neither a classicist nor a zoologist — I’m an engineer by training — so this etymological factoid is a thing of curiosity. Since I don’t know the exact circumstances of the term’s provenance, I imagine foxes wandering among Greeks of antiquity, just as Socrates meandered through the Athenian marketplace seeking an amenable interlocutor, just like the modern-day urban fox nosing about Londoners’ backyards, feasting on excess, picking up parasitic mites, contracting mange, and shedding tufts of fur. And perhaps because a furless fox was such a spectacular and troubling sight, or perhaps because fur littered across the Athenian marketplace was such a wretched eyesore, this animal has inadvertently secured a place in the Western medical canon for posterity.

Even in film, the bald or shaved female head has to be justified, set up with motive. 

There are many causes of alopecia; one is as a side effect of chemotherapy. What engenders chemotherapy-induced alopecia — in the language of warfare that has come to permeate the public’s vocabulary for how to confront disease — is that the cytotoxic chemicals deployed to target rapidly dividing (enemy) cancer cells also attack rapidly dividing (friendly) hair matrix cells. One medical resource I looked up online explains that “alopecia is a transient and usually (although not always) reversible consequence of cancer chemotherapy that can be psychologically devastating. For some patients, the emotional trauma may be so severe as to lead to refusing or delaying treatment that might otherwise be beneficial.” Another (more awkwardly worded) medical website attributes this trauma to the platitudinous but true observation that “hair has important functions in culture and communication.”

The cottage industry of internet articles understands something about this, especially with respect to hair on a woman’s head. The proliferation of articles with titles like “11 Actresses Who Completely Transformed for Roles, and Lost Their Long Locks on the Way” or “The 21 Most Badass Bald-Woman Moments” suggests that there is something at risk when a woman casts off her hair. Just as a fox without its fur is no longer the magnificent animal in its magisterial beauty, these titles suggest that a woman without her tresses is a Platonic ideal subverted.

Even in film, the bald or shaved female head has to be justified, set up with motive. In the third installment of the Alien franchise, Sigourney Weaver’s Ellen Ripley crash-lands on an inhospitable planet upon which a maximum security prison is located; she is asked to shave her head under the pretext of a lice outbreak among the inmates: men genetically predisposed to rape and murder who have recently embraced religion. Among this colony of brutal, monastic men who have not seen, or considered, a woman in decades, Ripley’s shaved head is a visual conceit, designed to simultaneously erase and enunciate her gender. Then there’s V for Vendetta, in which England is overtaken not by lice, but by an Orwellian government. Evey Hammond, the ingénue played by Natalie Portman, is captured by an agent we presume to be operating on behalf of the totalitarian state, thrown in solitary confinement, and tortured; her girlish curls are forcibly shorn. But Evey keeps her head shaved even after she is freed: What was once a site of violation is transmuted into a symbol of resistance to tyranny and conformity.

Some of these subtexts are more joyfully manifested. My favorite bald female character in film is the one Danai Gurira personifies in Black Panther: Okoye, the fierce and skillful general of the Wakandan special forces and leader of Dora Milaje, an elite force of bald female bodyguards. In the opening moves of the film’s thrilling casino fight sequence, Okoye rids herself of the disguise she had reluctantly donned for her undercover mission — a wig — and tosses it with a marksman’s precision in her adversary’s face. When the scene played at the theater where I watched Black Panther, the row of high schoolers sitting in front of me whooped in exultation, and I along with them. The gesture was imbued with symbolism — a woman warrior dismissing oppressive patriarchal standards of female beauty, a black woman in dialogue with the sociopolitics of hair.

Two weeks after the Marjory Stoneman Douglas High School shooting, Teen Vogue published a piece on anti-gun student-activist Emma González’s shaved head, insisting that her buzzed head is “much more than just a statement.” The way this editorial proclamation is worded seems to anticipate its readers’ collective passion for the layers of meaning that have been grafted onto the bald female head. In an interview with the Humans of Marjory Stoneman Douglas Instagram account, González presents this foil:

I decided to cut my hair because it was a pain in the neck, if you’ll forgive the pun. It was really hot all the time; it was very cumbersome and very heavy, leading to a lot of headaches. It was expensive to keep it up, and as prom time came around, I figured it would be cheaper to not have to worry about doing my hair. The more my parents said no, the more I wanted it. Actually, I even made a powerpoint in order to convince them that I should do it. I figured I would look really good with it, and I do.

The kind of bald female head to which I’ve become intimately accustomed looks and reads differently from what might be pitched in a PowerPoint deck or artfully cropped in a movie set trailer. It is the result of collateral loss, a signifier of something gone awry in a body’s biology. When it comes to representations of the chemotherapy-induced bald female head in cinema, I think of Emma Thompson as Vivian Bearing in Wit, Mike Nichols’ 2001 screen adaptation of Margaret Edson’s Pulitzer-winning play. Bearing is a professor of 17th-century English literature — a scholar of the poet John Donne — who has been diagnosed with stage 4 ovarian cancer. “There is no stage 5,” Thompson’s fourth wall-breaking character says dryly, her eyes trained directly on the camera, as though letting us in on a terrible cosmic joke. I feel a particular closeness to the film and its protagonist because of particular resonances in real life: My mother, a teacher of English literature at an all-girls public secondary school in Malaysia, passed away from advanced metastatic ovarian cancer a month after she turned 50 and I, 15. Her pedagogical gifts to her two daughters, who have since grown up to become a lawyer-turned-professor and an engineer-turned-writer, respectively, include a love for the works of Alfred Tennyson, John Keats, and E.M. Forster.

Given that my mother passed away nearly two decades ago, I’m a little more than surprised by the rawness of the movie’s emotional impact on me — first the catharsis of inconsolable sobbing, the chest constricting under the anguish of grief, physicalized anew, then the mental replay of the moment I rush into my mother’s hospital room and encounter her body, undeniably, incontrovertibly vacated of life. For this reason, Wit is a personal favorite that I rewatch sparingly. The last time I watched it, I noticed, through the blur of tears, that Vivian Bearing’s head does not look like my mother’s did. Bearing’s head is smooth, perfectly shaved, almost luminescent. My mother’s, like the bald heads of cancer patients who don’t have the time to meticulously tend to hirsute matters between trips to the hospital and the demands of work and family, was like a landscape at the cusp of winter — sparse, unevenly rugged, lit by twilight.

I am occasionally visited by night terrors about death and dying — a metaphysical fear so abstract that it is difficult to put into words. These terrors are fueled, in part, by the cognitive impossibility of imagining a long and medically uncomplicated life. This act of imagination requires pitting myself against the odds of my genetics — a 45 to 60% lifetime risk of breast cancer, and a 40% lifetime risk of hereditary ovarian cancer — as well as the apparent carnage strewn across my family tree. And yet, testing positive for the BRCA1 mutation does not offer binary certitude, like a paternity test, or the forensics labs in detective TV shows. Because the emergence of cancer itself is a statistical event that depends on a complex interplay of genetics, lifestyle, and environmental factors, some BRCA1 mutation carriers never develop breast or ovarian cancer. What does it mean, then, to think about my future probabilistically? If I choose to eat broccoli today instead of bacon, to sit in my chair instead of doing the chair pose, how will the sum of all these tiny, quotidian decisions that constitute life at large factor into the continually evolving calculus of cancer?

I don’t talk about these tests with my friends or coworkers, because the tests have become routine preconditions for living.

The first step in the medical playbook for those genetically predisposed to cancer involves what doctors call increased surveillance. This means that the cadence of my year is not defined by the changing seasons as much as it is by the tests and screening modalities to which I must avail myself — mammogram in May, pelvic ultrasound and CA125 blood test in June, MRI in November. Any detected abnormality is aggressively investigated; suspicious cells are extracted and tested for malignancy. (In the case of the one biopsy that I’ve undergone, the abnormality in question turned out to be standard-issue fatty tissue.) Surveillance is a way of taking stock of probabilities.

Here’s an analogy: If cancer were an approaching tropical storm with an uncertain path and strength, the doctor is the meteorologist who monitors the temperature and atmospheric pressure and periodically adjusts her prediction of the likelihood of devastation ahead. But weather prediction, as we know, is imperfect. The superhuman prediction that I sometimes wish for in medical surveillance — and here my engineering inclination betrays me again — is more like that of a self-driving car. The car, with 360-degree vision over the length of two football fields, senses and detects entities on and off the road, continually notes each entity’s observed historical and present behavior in order to project its motion in the future — essentially deconstructing the choreography of the world around it and reinterpreting it as a matrix of probabilities so that it might plot a path forward, all in mere fractions of a second. This sophistication is not yet within the province of medical technology.

I don’t talk about these tests with my friends or coworkers, because the tests have become, over the course of the past five years, routine preconditions for living. I dislike the feeling of having to steel my pragmatism against the shock of someone’s outsize reaction. I may understand the root of the sentiment, but I still find that refrain — But you’re so young! — particularly tedious, because it is both irrelevant to the reality at hand and frequently delivered with an undertone of pity. I’m particularly averse to the role reversal that happens when I have to assure someone that despite terms like “predisposition to hereditary cancer” and “biopsy,” all of this is, to use the turn of phrase, par for the course.

The belief that taking control of a situation immediately inoculates us against fear feels like a lesson from a Hallmark movie.

Which isn’t to say that I’m impervious to the anxiety of being reminded of my mortality several times a year, or the stress of integrating these procedures into a 60-hour work week. And yet, amid the yearly slew of tests, there are periods of quiet suspension from the urgency of living — when I’m lying facedown in the MRI tunnel for 35 minutes, its giant magnets buzzing, droning, clicking, and knocking overhead. I play a game in my head, in which I attempt to assign specific pitches to the machine sounds I hear. I try to recall the songs in Charlotte Gainsbourg’s album IRM. The album has an interesting backstory — Gainsbourg goes to the doctor with a headache weeks after a minor waterskiing accident and discovers, presumably through MRI, that her head is filled with blood. The album, released several years after she recovers from surgery for a cerebral hemorrhage, is an intermittently catchy, cryptic, and pensive meditation on mortality. The title track uses percussion and recorded samples of an MRI machine to invoke her experience of being in the belly of the imaging beast.

There are also brief moments of awe. Two years ago during my annual mammogram, the radiology technician, a competent and kindly woman in her fifties, turned the computer screen toward me so that I could glimpse at what she saw: the interior topography of my left breast rendered in stunning high resolution, a crisp black-and-white photograph lit up by an intricate network of capillary and tissue.

The BRCA gene had its high-profile coming-out in 2013 when Angelina Jolie published an op-ed in the New York Times, in which she revealed her BRCA1 mutation diagnosis and her decision to undergo a double mastectomy. This procedure, along with prophylactic oophorectomy — the surgical removal of one’s ovaries — are preventive measures that some women who are BRCA mutation carriers ultimately undertake, after years of surveillance, to radically reduce the probability of developing breast and ovarian cancers. If a bald woman is a subversion of some ideal of femininity, I can only imagine the burden of social judgment borne by a woman who must remove the very parts of her body that supply and manifest her womanhood. Jolie must have understood that she could use the power and reach of her celebrity to blunt the stigma of a woman compelled under medical circumstances to remove her breasts. She understood that — more effectively than any public health campaign — she could educate the broader public, especially those with a high incidence of cancer in their extended family, about the BRCA genetic test and their medical options. When a pair of researchers from Harvard Medical School capitalized on the op-ed’s publication to examine the effect of celebrity endorsements on health services, their findings confirmed a conclusion we might have vaguely intuited: After the op-ed was published, daily BRCA test rates increased by 64% compared to the previous year. I’m more astounded by the longevity of the op-ed’s effect — the study reports a sustained increase in BRCA testing rates throughout that year.

When I mentioned the op-ed to a friend over dinner, she was reminded of another moment of celebrity candor about disease. She recalled the moment on Good Morning America in 2008 when its host Robin Roberts, who was undergoing cancer treatment at the time, decided to appear on the show’s catwalk wigless. Back home, I looked up an archived video of the segment — it is a genuinely rousing moment. What also occurred to me, at the same time, was that any mental recalibration that viewers might have had to do at the sight of their beloved morning host in her full baldness might have been offset by her regal presence in a red sequin Isaac Mizrahi gown.

Angelina Jolie’s op-ed ends with her assertion that “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.” I don’t share this sentiment, as I’m arguably in a different place in my life and medical decision-making. Control seems to me to be a foundational myth — a mind trick that affirms our sense of personal agency and galvanizes us to action, yet forecloses an honest reckoning with the complexity of navigating chance and uncertainty. The belief that taking control of a situation — and by association, taking action — immediately inoculates us against fear feels like a lesson from a Hallmark movie, with tales of positive thinking actualized and insuperable challenges overcome.

Several years into cancer and during a brief remission, my mother used our first family computer to print out a copy of Henry Wadsworth Longfellow’s poem A Psalm of Life. She pasted the printed sheet on the built-in wooden cabinet in the study room. As a child, I read the sheet so often that I was able, for several years afterward, to recite the poem by heart. I was moved by the stanzas that exhorted the reader to fearlessly seize the day: “In the world’s broad field of battle / In the bivouac of Life, / Be not like dumb, driven cattle! / Be a hero in the strife!” Reading A Psalm of Life now, I feel embarrassed by this sentimentality, feeling as if I have been caught lingering too long in the self-help aisle of the bookstore. But I’ve come to appreciate the chastened wisdom in the poem’s last stanza: “Let us, then, be up and doing, / With a heart for any fate; / Still achieving, still pursuing, / Learn to labor and to wait.” ●

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