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).

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“Coming Out” About (In)fertility

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I haven’t been keeping my fertility challenge a secret per se. I have, however, for the past three years struggled negotiating the elusive “outside world” in relation to my frustrations, disappointments, and fears trying to conceive, which have wreaked havoc on my sense of self. More often than not, it has been easier (and felt safer) not to share these pains, pushing me further into isolation.

As an academic, I study health and disease narratives, politics of the body, and feminist discourse yet I’ve feared writing about my personal experiences that intersect my research interests. It has taken me three gynecological surgeries (one from IVF), 70+ needles (and counting), countless pills (steroids, estrogen, progesterone, baby aspirin, prenatal vitamins, letrozole, clomid, metformin, valium, antibiotics, etc.), and too many bloody months to finally write myself out of this silence.

Taking pen to paper (and fingers to keyboard), I started writing a nonfiction story about my IVF cycle last fall. It morphed into a meditation on what it felt like being a reproductively challenged woman in this society, a reflection on my late mother, and a realization that I no longer recognized the relationship I had with my body. On a whim, I submitted an abstract to (and got accepted to talk at) this medical humanities conference in Iowa where I shared my story and discussed the politics of fertility challenges as a larger social issue. This was my first “coming out” to people I didn’t know.

It felt really good to share.

In my breakout session many women shared their fertility stories, which was heartening. Some women were still grieving their miscarriages, job loss because of a pregnancy, and isolation despite several decades passed. Others were feeling “the pressure” and felt conflicted about their decision to pursue demanding professional careers. We all craved a safe space to openly talk about our concerns beyond select friends and family. The group supported my assertions that there simply aren’t enough conversations (public and private) about, and support for, fertility challenges.

A woman I met at the conference just tweeted this blog post to me about unique (and not so unique) fertility challenges in academia. From her, I learned that this week is National Infertility Awareness Week. While I dislike the term “infertility” or its classification as a disease (it’s too final, stigmatizing, and pathologizing), I love the idea of raising awareness about fertility challenges and engaging more people in a nuanced conversation.

Although each woman deals with her fertility challenges differently, the Internet seems to offer general lists, guidelines, and tips on how to help support the women we care about. Here are a few. A Google search will yield more.

These lists are a bit crass but they cut to the chase. Personally, I rather share lists of what have been unusually difficult and unexpectedly comforting (beyond the obvious) rather than a “to do” and “don’t” list.

These lists are far from exhaustive, but here goes.

Unanticipated difficulties:

  • Knowing no one else in their early thirties enduring IVF or other aggressive fertility treatments is a psychological mind f*#k.
  • It was easier to give needles to myself than have my partner do it. I don’t know why.
  • Every medicated month, I’ve had disruptive hot flashes, emotional turbulence, chronic headaches, and/or fantasies of wanting to punch irritating people (often troublesome students I teach).
  • Not knowing why I’m not getting pregnant (despite ovulating, having balanced hormones, newly cleared fallopian tubes, and good general health) has been a hellish liminal space. Okay this one might be kind of obvious.
  • Trying to become a mother rehashes the pain of loosing my mother (over a decade ago) to breast cancer.
  • With more medical intervention and involvement, the emotional pressure and expectation of getting pregnant swell. Reoccurring periods become increasingly devastating. This has been hard to manage at school and work.
  • I really hate feeling pitied. If I sense another’s discomfort or pity, my instinctual reflex is to ease that person’s awkwardness by minimizing my own experience and pain, and moving onto other “lighter” conversation. This has been incredibly counter-productive.
  • Trying this hard to become a mother tests my feminist and liberal sensibilities about how I measure my self-worth and define the meaning of family.
  • People tend to be better at responding to difficult events (like loosing a parent) than difficult non-events (like not becoming one). This has been isolating.

Pleasantly surprising acts of comfort:

  • The number of friends offering to help me with the medical stuff: needles, doctor appointments, post-operative care, research, etc.
  • Male friends and family doing research and asking specific questions about my procedures to better understand what I’m going through. All of them did one and/or the other.
  • People asking how my partner is holding up and asking how to support him.
  • Frequent or spontaneous calls, texts, and check-ins from friends on the most “ordinary” days recognizing that regular days are often challenging.
  • The number of women (mothers and non-mothers by circumstance or choice) sharing their own fears and vulnerabilities about fertility.
  • People matching my vulnerability by sharing some of their own (fertility related or not). This has been a helpful way for me to remember that we all have “stuff” going on.
  • Telling fellow grad students and departmental faculty. They have been a surprising and most welcomed support system. It’s also a huge relief and source of inspiration to be around people who embrace my desire not to separate the personal from the academic.
  • Those who sincerely ask questions (medical details, emotional state, how they can help, or whether I wanted to punch anyone that day, etc.)
  • My reproductive endocrinologist giving me hugs. Frequently. And letting me cry on her shoulders.
  • People who ask how I am, then ask how I really am after I tell them “I’m fine.”

In the spirit of National (In)fertility Awareness Week, I’d love to hear your thoughts stories, or questions. Sharing is caring after all.

And because all health campaigns need celebrity spokespeople…

 

For more information visit:

Saying Goodbye

Today’s post is the product of a free writing exercise I did in a class last week.  The instructions were:

  • Write for 20 minutes without stopping
  • No editing, no going back and changing what you wrote
  • Theme: I will never forget…

With the exception of small edits like spelling, the text below is untouched.  I’m sharing this piece because I want to recommend letting your mind relax and seeing where a similar exercise takes you.  Reflecting on the piece, it reveals (some of) where I am in “letting go” of my mom.  Also sharing is caring 🙂

***

I will never forget the day my mother died.  She was 54 and I was just shy of my 21st birthday.  My sister, brother and I were taking turns at the hospital where my mother was in some in-between palliative care unit.  I had just finished my shift for the day.  I slept over the night before.  There were no beds so I made myself comfy on the floor next to her.  We had been doing this for over a month.  Breast cancer metastasized in the bones, brain & chest were the culprit.  Holy Shit!  My back was aching everyday at that point.  Not from sleeping on the floor but from tensing my body so tight fearing the moment my mom decides to go.  The tightness in my body pervasively ached to the center of my bone.  If you could see the fibers connecting the tissues of those bones, they would be aching too.  As a family we collectively lost the weight of a small child.  The nurses were all so kind to force us into getting food and rest.  But who can rest under circumstances like these?  Who has an appetite when their mother can hardly eat, pee or breathe on her own?  So I left that night and passed the responsibility of keeping my mom company to my sister.  About two hours later I got a call from my sister.  Words weren’t necessary.  Her silence and soft whimpering told me that she was gone.  My brother and I rushed back to the hospital before the warm blood could dissipate from her body.  By the time I got there, her hands were starting to get cold.  I’ve never seen nor touched a dead person before.  Let alone one who was my mom.  I felt so numb seeing her.  I lay over to give her my last kiss goodbye.  Her mouth was wide open, like an old man snoozing under the afternoon sun.  Except there was no warmth there.  I kissed her on the cheek and said “goodbye.”  The skin was cold at that point and I knew the road ahead was going to be just as hard as the road that brought me to the side of my mother’s deathbed.  It wasn’t fair.  Not for me but my brother.  He was only 14 at the time and we already didn’t have a dad.  A father yes but someone to call dad, no.  It’s not fair that my brother was stuck with me and my sister.  We never got along and now we were tasked to raise him.  Good god.  I would have run away at that point if I were him.  But no.  He remained the strongest out of the three of us.  He cried once, that night and exclaimed how unfair this was.  I’ve never heard another peep or another tear from him again.  My sister and I were clearly the emotional ones.

Where’s My Period? Another Way to Look at Late Periods Besides Pregnancy

I use an app on my G1 called “My Days.”  It’s used to keep track of my period and ovulation, and can track anything else cycle-related such as having sex, taking a pill, or writing notes.  The app also projects period, ovulation, and high fertility dates based on previous months.

It’s a useful tool if you’re trying to get preggers or if you’re avoiding an “accident.”  I use My Days because keeping track of my cycle helps me stay in tune with my body’s rhythm.

Since November 2008, I’ve been tracking my period and every month I would have one.  I’d have roughly a 32 day cycle with the occasional one week delay here and there with the same pre-menstrual symptoms each time: tender breasts, fatigue, crankiness and heavy emotions.

According to my calendar, I was supposed to get my period seven days ago.  So where is it?  I’m almost certain I’m not pregnant, or the joke’s on me.

I recently read an old New Yorker article by Malcolm Gladwell called “John Rock’s Error.”  It’s a fascinating look into the unnatural evolution of our menstrual cycles and how we, as post-industrial women, have our periods roughly four times more in our lifetime than pre-industrial women.  John Rock was the co-inventor of the Pill and the article also discussed what he didn’t know about about woman’s health and menstruation.

As suggested in Gladwell’s piece,

In a brilliant and provocative book, “Is Menstruation Obsolete?,” Drs. Elsimar Coutinho and Sheldon S. Segal, two of the world’s most prominent contraceptive researchers, argue that this recent move to what they call “incessant ovulation” has become a serious problem for women’s health. It doesn’t mean that women are always better off the less they menstruate. There are times–particularly in the context of certain medical conditions–when women ought to be concerned if they aren’t menstruating: In obese women, a failure to menstruate can signal an increased risk of uterine cancer. In female athletes, a failure to menstruate can signal an increased risk of osteoporosis. But for most women, Coutinho and Segal say, incessant ovulation serves no purpose except to increase the occurrence of abdominal pain, mood shifts, migraines, endometriosis, fibroids, and anemia–the last of which, they point out, is “one of the most serious health problems in the world.”

The evolution of expecting our monthly periods is partly attributed to diet.  Our availability of certain high fat and high caloric foods have increase how often we have our period but also when we get our first period (menarche.)  Both early menarche and increased frequency of that time of the month have health consequences such as increased rates of reproductive cancers as the article discussed,

Ovarian and endometrial cancer are characteristically modern diseases, consequences, in part, of a century in which women have come to menstruate four hundred times in a lifetime.

I’m not a pre-industrial woman so having a late period is somewhat enerving.  But Gladwell’s article brings a different angle to our discussion on reproductive health and monthly cycles.  It’s well worth the read and I guarentee it’ll make you think about your own cycle, lifestyle, methods of contraception, and pregnancy just a little differently.

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.