Breast Cancer and Its Metaphors

Trade_Secrets_-_Breast_Cancer_WalkAfter reading Susan Sontag’s Illness as Metaphor and AIDS and Its Metaphor I’m left wondering whether the stories we tell others and ourselves about our bodies are truly ours—especially stories about diseases. Sontag’s work has me reconsidering my mother’s experience with breast cancer and how she carried herself as a woman with this disease.

My mother had a proclivity to use writing as a way to be heard and to advocate for immigrant women’s health in Canada. This was the mid-90s and breast cancer advocacy and rhetoric largely spoke to, and reflected, white middle-class women’s concerns. Relating a disease along classed and racial terms had (and still has) real life-impacting consequences in terms of access to care, stigma, prevention, support, and even death. Through her writing and activism, my mother occupied two spaces in Toronto’s breast cancer advocacy community: one, as an outsider resisting the narrowly defined ways women with the disease are (or aren’t) recognized; and two, as an insider participating in walks, fundraising, national meetings, and evoking similar language of victimhood and survivorship in her own narration of the disease.

When Sontag published Illness as Metaphor in 1978, the Pink Ribbon Campaign (making breast cancer awareness a household topic) was a little over a decade away. Sontag, then, was writing about the mythology and morality attached to various diseases such as tuberculosis, cancer, syphilis, and leprosy. She was tracing a genealogy, centuries long, of socially constructed ideas about these diseased bodies that romanticized, villainized, condemned, or stigmatized the inflicted. Sontag’s book intervenes on the notion that illness (especially certain kinds like TB and cancer) is representative of larger-than-life ideas about human existence and death, and argues that these metaphors are emblematic of social rhetoric, fears, morality, rather than the disease itself.

As a woman with breast cancer in the 1990s, my mother found herself in a transitioning community of women gaining momentum in combating and refusing the stigma attached to breast cancer. Those inflicted were turning into victims, then to survivors, and to heroines. The Pink Ribbon Campaign launched walks, marches, fundraising, and advocacy events. Women were creating a new social landscape to understand and combat this disease that so personally attacked one’s female anatomy.

But these grand heroic narratives—reminiscent of Second Wave Feminism—didn’t apply to women of color and poor women, such as my mother. So she fought to be heard, insisted that her concerns weren’t addressed in the larger movement, and helped start the first immigrant breast cancer support group in Toronto. She wrote about her experience as an immigrant woman with cancer in English and Japanese, she participated in community activities, gave keynote talks at conferences, and spoke to the media. She was undoubtedly a hero to me, and at the time her actions seemed to have lessened the burden of her disease on our family because of the “greater good.”

Sontag’s book Illness as Metaphor has me rethinking what breast cancer really is and what it did to my mother. While my mother’s advocacy for immigrant women’s health is something I admire, the rhetoric she drew upon to invoke similar narratives of victimhood, survivorship, and heroism aren’t standing the test of time. As Sontag demonstrates, socially fabricated views on diseases change as society does. Without having the language or ability to speak plainly about her disease, I now realize my memories of my mother with breast cancer are largely veiled behind a narrative largely constructed outside of her.

When we “talked,” my mother rarely separated the breast cancer discourse (or her objection to it) from what was actually happening to her body and how she was doing. We didn’t talk about her imminent death, or her fears and hopes for me. She never told me “this is just cancer, and this is how I’m going to go.” She made it so much more than that and lived her seven years with the disease as a “survivor” and fought the “fight” it until the very end. With so few memories of talking about the disease, her death, and how to carry on without her, I’m left wondering exactly what she was fighting for? Whose legacy she was really leaving?

 

“But at that time perhaps nobody will want any longer to compare anything awful to cancer, since the interest of the metaphor is precisely that it refers to a disease so overlaid with mystification, so charged with the fantasy of inescapable fatality. Our views about cancer, and the metaphors we have imposed on it, are so much a vehicle for the large insufficiencies of this culture: for our shallow attitude toward death, for our anxieties about feeling, for our reckless improvident responses to our real ‘problems of growth,’ for our inability to construct an advanced industrial society that properly regulates consumption, and for our justified fears of the increasingly violent course of history” (Illness as Metaphor 87).

Genetic Testing for Breast Cancer

I have an increased risk for developing breast cancer because my mother had the disease.  She passed away eight years ago and since then, on most days I imagine the conversations I’d have with her about dreams and fears, writing, food, health, and love.

Sometimes I’d write about those conversations as a way to remain connected to her spirit.  Today’s post is about a conversation I wish I could actually have with my mom in person.

Under a pile of bank statements, credit card offers, and various receipts lay a request form for genetic testing my OBGYN gave me half a year ago.  It was an option, should I want to know if I have the breast cancer gene.

The breast cancer genetic testing form out from hiding

It’s just a piece of paper but I keep it stowed away under piles of paper I won’t sort through for a while.  I can’t bare to think about ever having cancer, leaving my family and friends prematurely, and never seeing my children have a family of their own.  Like my mother.  That form is a staunch reminder of my mom’s physical absence.

The offer for genetic testing doesn’t expire as long as I either have the money or health insurance to cover its cost.  My mother believed with conviction that her illness was caused by her stress and lifestyle.  The stress was from being a single mother of three, an immigrant, and poor.  Women with similar demographics have higher rates of breast cancer prevalence, and are more likely to die from the disease.

There are different types of breast cancer.  Some are more aggressive than others, and some are passed down through the abnormal breast cancer genes, BRAC1 and BRAC2.  Having these genes don’t mean breast cancer is definite, but it significantly increases your likelihood of it developing.  Getting breast cancer is complicated and has a lot to do with risk factors including but not limited to, age, reproductive history, environment, lifestyle, and whether first-degree family members have/had breast cancer.

After my mom’s  diagnosis, she took up yoga, ate organic food (before it was offered in grocery stores), worked part time, actively engaged in support groups, and underwent chemotherapy.  We frequently talked about politics and why there was a disproportionate amount of women “like me,” as she’d say, suffering from this disease.

My mom frequently reminded me that other than herself, we have no family history of breast cancer.  Therefore, I need not worry about having a similar fate.  She would tell me to “just continue to eat healthy and exercise.  Don’t worry so much.”

Intuitively, I know my increased risk for breast cancer is neutralized or even reduced with my lifestyle.  On most days, I exercise, eat well, and try to choose organic.  I’m also engaged to a wonderful and supportive partner who helps reduce my stress, and once we’re married, our union will serve as another protective factor against diseases.  I go for regular check ups and floss (flossing is a protective factor against gum and heart disease, not breast cancer). But still, the genetic testing service appeals to me like a customized horoscope does to astrological believers.

Both the test and horoscope provide information about the future and would leave me with the choice to act (or not) based on what I know.

But do I want to know if I have a genetic predisposition to breast cancer? Let’s say I end up having the gene, what next?  Will I be able to handle everything that needs to happen next?  If I don’t have it, will knowing that help resolve hurt feelings about my mother’s death?  Will I act as though I’m immune to the disease? If I choose not to get the test does avoiding it mean I’m taking an “ignorance is bliss” approach?  Or does it prove my confidence in a healthy lifestyle?

My OBGYN also warned that the test results will be on my medical and insurance records.  If I have a genetic predisposition, and therefore a higher risk of breast cancer, it can impact my insurance premium or restrict services offered to me.  Future insurer could potential deny me coverage as well.  But, the health reform, when implemented, should protect me from these types of discrimination.  Thanks Obama!

The form is officially on my fridge

My current thoughts are to do the following:

  1. dig up the form and put it on my fridge so I don’t conveniently forget about it and thus eliminating my need for a decision (done, by the time of publishing this post)
  2. find out more information about the testing such as counseling options to go with the test results, insurance implications of the results, fees and co-pays, if it’s necessary, and general pros and cons
  3. figure out if I’m taking my sweet time coming to a decision because I’m afraid of knowing the results (my friends and family can help me with this one)

I’ll go from there and keep you posted.  At the very least, talking and learning more about the testing can only help me make an informed decision.