“The dissolution of a person”

As I’ve been wallowing in my superficial chemo side effects I’ve really noticed how vilified you are if you dare to demonstrate caring about physical appearance in the breast cancer communities. A question like “can I still get manicures?” or “is botox safe?” is met with responses like “this is not the time to care about how you look, put your faith in god, learn to crochet, throw a scarf on your head like the rest of us!” People who do cold capping are the worst of the worst – how dare you care about your hair when you should be concerned about your potential neuropathy! It’s dismissed as something done by fake women with money to burn. To clarify, as a single mom I do not have money to burn but I have priorities. My hair is one of them.

Perhaps I’ve always been vain. Nails done, hair done, everything did. For years I’ve worked out daily, often twice per day to fight my propensity towards weight gain in my later years. I can tell you with all certainty that it increases my mood, my libido, my confidence. Not only am I strong, but my body looks better the more work I put into it. Plus, endorphins are legit. I’m a better person because of them.

Exercise gives you endorphins. Endorphins make you happy. Happy people just don’t shoot their husbands, they just don’t. – Elle Woods

I don’t remember what my natural lashes look like as I’ve had extensions for 5 years. My nails and toes are always done. I love designer bags, sparkly things and heels. My outfit is usually well curated. My natural 32DDs have always been a source of pride, even after pregnancy and breast feeding.

I’ve never been the “toss on some sweats, throw your hair in a bun and go” kinda girl. Props to those who have that confidence, but it’s just not me. As a result, I’m having a hard time letting go of my sense of self during this process.

I belong to about 10 breast cancer fb groups or forums. The *only* one I can relate to is the one for cold capping. It’s full of the women like me (usually on the younger side of BC) who are trying to maintain their physical appearance as the chemo and cancer wreck our bodies. Questions about extensions or facials are met with advice instead of criticism. I’m happy I found that group.

This is an excerpt is from a well written article by Sascha Cohen where she tries to find out what she did to “deserve” breast cancer but simultaneously delves into the effect on a women’s sense of self and how for some of us, our physical appearance is tied into it. I relate to this like nothing I’ve read about the breast cancer process so far.

“The trope goes like this: It is lesbians and bisexuals, sluts, sex workers, overly confident attractive women, who are punished, usually by death, in popular culture. The pretty, promiscuous girl is the first victim in slasher movies. Stand-up comics joke about dead strippers and dead hookers, the most disposable humans of all. Hollywood fables like Tales from the Crypt tell of looks-obsessed young women becoming hideous and rapidly aged, comeuppance for the grave flaw of vanity. Couple this attitude towards delinquent women in general with the metaphors of cancer specifically, and we find what Susan Sontag—herself a queer woman and cancer victim—has described as the “persistent belief that illness reveals, and is a punishment for, moral laxity and turpitude.” Cancer, she wrote, fits our culture’s “need to blame and punish and censor through the imagery of disease.” And breast cancer represents the ultimate irony, stripping bad girls of their wicked ways by taking away the sources of their power and pleasure.

Samantha Jones, the early-aughts symbol of female sexual liberation on Sex and the City was told she got breast cancer because of her “lifestyle” as an unmarried career woman (and, viewers intuit, an unabashed slut) without children. Samantha loses her hair—a clump falls into her hand mid-fellatio, in an especially chastening scene—but survives her disease.

Then there’s Jennifer North in Valley of the Dolls. A flaxen-haired showgirl who poses nude for French art films, Jennifer cries, after her breast cancer diagnosis, “all I’ve ever had is a body, and now I won’t even have that.” This body, displayed for viewers in an earlier scene, tan and glittering, is an impossible body. It is Chekov’s gun. Unable to cope with her sentence, Jennifer telephones her disapproving mother to say, “I won’t be undressing in public anymore,” before overdosing on a handful of enormous cherry red pills. We never see that impossible body again: It is covered by a sheet and wheeled out on a stretcher to the morgue.

Jennifer North’s worst nightmare was my reality. If she hadn’t died from suicide, her long blonde hair would have fallen off and left her bald; her chiseled, delicate features would have bloated from steroids; her breasts, those glowing golden orbs, would have wound up bisected by puckered, angry scars. If she had an estrogen-fed cancer, like mine, she might have had her entire reproductive system removed, like I will be doing this spring. Breast cancer treatment produces a humiliating spectacle of suffering, and if we survive it, we are expected only to be grateful. The price of getting to live a bit longer—and who knows how much longer, because even treatable cancer can come back any time with a vengeance—is that we must inhabit the rest of our years in an unrecognizable body, amputated or surgically reconstructed, Frankenstein style, and deprived of our natural hormones. To which I, too, almost said: no deal.

I feel like I’m in the minority here. The past several months I have spent in the breast cancer support community have revealed how apologetic and even ridiculous women feel when discussing beauty, sexual desire and pleasure. “I know I should just be happy and thankful to be alive,” they insist, again and again on online forums, disavowing what we are supposed to see as superficial, in favor of what is supposed to appear to us, suddenly, as truly important. (This is usually their children. I do not have children.) They complain of painful intercourse and a vanished libido due to forced menopause, weight gain, botched mastectomy results, and loss of breast and nipple sensation, but are quick to chide themselves for worrying about “something so silly.” They tell each other that surviving is what matters, and everything else is just unfortunate collateral damage to be endured as a strong, brave warrior. Scars are not signs of tragic mutilation but of courage; an intentionally shaved head signals fighting mode, that a woman is somehow “taking control” of her fate. Vanity must be abandoned, for it is a display of weakness, the antithesis of declaring war, and a refusal to take death seriously.

This way of performing breast cancer does not personally resonate. I have a hard time relating to my self-abnegating “pink sisters” on the patient message boards. In addition to Jennifer North, I identify more closely with one of history’s early breast cancer casualties—Anne of Austria, Queen of France in the mid-17th century, who paraded through the royal court with jewels twinkling from her décolleté before she discovered pain in her left breast. As historian James Olsen writes:

Throughout her life, Anne had taken more than a little pleasure in her body. She was the most fashionable of the fashionable, and her gowns allowed for an ample display. For the finishing touch, she often wore a necklace with a crucifix or pendant, the cross resting just above her cleavage.

After enduring a series of quack treatments as her disease progressed, Anne finally allowed a doctor to carve out her large tumor, which extended down her armpit, in a grisly five-month long process. Shortly before her death but after her disfigurement, Anne worried that she got breast cancer as divine punishment “for loving myself too well and having cared too much for the beauty of my body.”

I am furious that the power and privileges of beauty—as slippery, elusive, and unearned as they may be—have been taken away from me. I have experienced treatment as an assault on my bodily autonomy and my sexuality, the very things I have worked my entire life to claim as my own; indeed, the things that made me feel alive in the first place. And now these parts of me—by which I mean my literal secondary sex characteristics as well as my sexual identity—feel tainted and dirty, like I have been using them the wrong way.

In the 19th century, many doctors believed that breast cancer was caused by deviation from appropriate womanhood, from failing to use one’s female reproductive system correctly, which of course meant childbearing and breastfeeding. The silence and stigma surrounding the disease stemmed in part from its association with sexual impropriety. Modern medical thought has since discarded this idea, but a version of it seems to linger in the popular imagination. The sense that disease strikes those who have done something to deserve it has persisted; in the early years of the AIDS crisis, evangelicals like Jerry Falwell famously blamed patients for their own illnesses, declaring that man “reaps what he sows.” Last year, Alabama Senator Mo Brooks commented that healthy people are those “who lead good lives.”

No matter how rational of a creature you perceive yourself to be, it is difficult not to internalize these messages when you spend the summer sweeping tangled nests of your own hair into a garbage bag in your childhood bedroom. Or when your mother helps you empty four plastic bulbs of cloudy orange liquid draining from your chest incisions twice a day for weeks. You think: I’m sorry, I’m sorry, I’m sorry. You bargain: I’ll change. You wonder: Does my body belong to God, to nature, or to the soul inside? Did I get sick because I thought I was the one who owned it?

During a follow-up visit with my oncologist, I told him I regret taking birth control pills for 13 years, since they have been linked to hormonal breast cancer in some studies. What I should have done, instead of having casual exploratory sex in my 20s, is married a man, one cisgender man, and reproduced. I should have carried children, even though I never wanted them, and I should have breastfed, for the modest protection these choices offer against the disease. That trajectory would have likely bored me, but when I look at my body in the mirror, now utterly unfamiliar, I think, what is a little boredom compared to the enormity of everything that I have lost?

The scar where my left nipple used to be is shaped like a long frown. The removal of 28 of my axillary lymph nodes means that every few days, excess fluid collects in my arm, causing it to turn pitted and spongy until my hand swells up like a Mickey Mouse glove. From cheekbone to hipbone I look ragged, moth-eaten, obviously imperiled. Sometimes I miss my blonde waves so much that I soothe myself with fantasies of kidnapping longhaired women and tracking down a mad scientist to transplant their scalps onto my own head. These thoughts make me feel like a bitter witch. “What counts more than the amount of disfigurement,” Sontag writes of visible illness, “is that it reflects underlying, ongoing changes, the dissolution of a person.”