Say Hello, Say Goodbye

I think we’re done, here. How’s that for an ambivalent ending?

I hate endings. I hate saying, “Good bye”.

I am back at work, and my mind has been relentlessly elsewhere than on breast cancer. I had thought that by changing the name of the blog, from “Big Grrls DO Cry” to “Adventures in Deconstruction”, that I could shift the emphasis of the blog from cancer, to the politics of everyday life as a breast cancer survivor. And who knows, I may do that some day. But for now, I think that I need, definitively, to step away from cancer as a site of cultural production and analysis.

I want to thank you, for being here. And I want to encourage anyone who stops by, and wants more info, to please message me, by Commenting. If I know something that might be helpful, I will gladly pass it on. That function has been just one of the joys of maintaining this blog. What can I say? I am compulsively attached to some kind of idea of the Internet as a viral knowledge network that really does make a critical difference to lives where agency is imperiled. And sure as donuts at Tim Hortons, breast cancer and its attendant social/medical institutions, imperil one’s core sense of freedom, identity, value and viability.

If you feel like it, say “Hello”, or say “Goodbye”, by Commenting.

Presence. It’s all we are, and all we have.

 

Hair

“I should do that with my hair!” The 60-something woman emphasized SHOULD - like, “I SHOULD do that… But I wouldn’t.” I can’t tell you how many women have said those exact words to me. About hair. About my hair, and theirs. And what they mean is that they should cut their hair as short as mine. I have asked several of these commentators, “What stops you?” The answer invariably involves a reference to their husband’s displeasure.

Like fat, hair is a distinctly feminist issue. Frigga Haug,German sociologist, wrote brilliantly about this subject in Female Sexualization, where she reports on a fascinating project where participants narrate anecdotes concerning hair and gender identification.

I am on holiday, and I needed to get my hair cut yesterday. It’s a challenge. At home, Bill the barber cuts my hair. I have never seen a woman at the barber shop, but the guys cope. The barber shop I go to is downtown, where, in my imagination, people learn to accomodate difference more directly than folks in the suburbs (where I live). But on holiday, what’s a gal to do? You can’t just waltz into any old barber shop. The last time I tried that, the guy said, “Oh my g#d. I will have to pull the shades. What if my wife drives by and sees you?” I left. Any place with “Salon” in the name is out. They would balk at my directions — “Keep it short. Use the clippers.” Lady luck was smiling on me. I walked into a place where the woman who cuts hair used to live with a couple of dykes. I chose the place because the sign said, “Hair, Nails, Facials” - that’s it. Nothing fancy. “Very good.” she opined while we chatted about living arrangements - mine, and hers. “No men. Works better that way.”

I knew that eventually, I would have to confess. I enjoyed the feel of the razor sliding up my leg far too much. After a twenty-year moratorium, I shaved my legs. It felt glorious. I was stunned by the depth of guilt. I am not sure who I felt like I had betrayed, but it was tangible. I managed to hang on and ride the waves of repression until after dinner. Then I leaned over to my good friends P and J (who Janice and I met up with in Wailea) and in a whisper, spoke the ugly truth, one lapsed feminist to another. “I shaved my legs.” The aftermath was really fascinating. It turns out I was not alone. We have all been pretty committed feminists for about twenty years, and had all enthusiastically picked up and carried the “thou shalt not shave thy body hair” torch, and both P and I had shaved our legs for our Hawaii vacation. And we both felt guilty. And neither of us was sure about anything, except that something important had been set aside in this abandonment of the ban on shaving.

In the Survivor final episode post-party yesterday, the host, Jeff Probst, asked Denise, the lunch lady, her BIG question. It was about her hair. “What’s with the hair?” he inquired, as if we would all know what he meant. The audience laughed, knowingly. Can you imagine anyone ever under any circumstances asking a man that question? Denise’s answer was very telling. “I have to keep it short,” she shared with the audience, “because the children are always grabbing it. But I also want to feel like a woman.”

Frigga Haug, you were so right about hair.

 

The Politics of Aesthetics

When we ask what the conditions of intelligibility are by which the human emerges, by which the human is recognized, by which some subject becomes the subject of human love, we are asking about conditions of intelligibility composed of norms, of practices, that have become presuppositional, without which we cannot think the human at all. Judith Butler (2001). “Doing Justice to Someone: Sex Reassignment and Allegories of Transsexuality”. GLQ: A Journal of Lesbian and Gay Studies 7 (4): 621-36.

Today I wore boxers. It felt transitively gender appropriate and maybe even, essential, since I was heading off to see the plastic surgeon about chest reconstruction. Recall, that this is the only plastic surgeon in British Columbia who does chest surgery for fTm trans folks AND who does breast reconstruction. This guy, I figured, would get my particularities. But still, I needed the performative insurance boxers might provide. After all, I would need to convince the surgeon that doing chest contouring would be, in my case, an genderqueerly appropriate form of post mastectomy/breast cancer “reconstruction surgery“.

Typically, chest, or “top surgery” is regarded by the medical professionals and the health care system in British Columbia as a form of fTm Sex Reassignment Surgery (SRS). The rules regarding SRS are archaic and extraordinarily discriminatory towards transgendered folks. They include proscriptive requirements, such as, for example, that a candidate for SRS “pass” successfully for a member of the “opposite sex” for a minimum period of two years PRIOR to approval for surgery and that this successful “passing” be observed and recorded by “qualified professionals”. It is also the case that candidates for SRS need to be interviewed and approved for surgery by two mental health professionals.

Step Two, if we are to think of Step One, as the deliberate selection of the Calvin Kleins, involved filling out copious forms. Dr. B wanted to know such a lot about me. There were 8 pages of questions about my sexual and gender identity in relation to temporality, as in, “Who were you when you were born?” (identification via biology), and “Who would you like to become?” (identification via surgery). I was asked to use the space inside of an empty circle to demarcate, with a single dividing line, just how much of ME was f or m at those two critical times - past and future - actual and virtual. All my circles were covered with lines going every which way, tartan-esque, and sported a lively mix of f and m. It was appropriately messy.

Complete these sentences: Gender Identity. I think of myself as a _____. Ideally, I would like to think of myself as a _____.

I experimented with playful answers, as in: How did others perceive your gender identity as a child? Answer: Simplistically. How do others perceive your gender identity now? Answer: Generously.

Step Three was the live interview with Dr. B, who was intelligent, informative and kind. Dr. B is a really stunning example of ethical medical sensibilities. He was emphatic about wanting to use respectful language in asking me about “personal aspects” of my life, and encouraged me to correct him if he went astray. Dr. B didn’t read my answers on the forms. That impressed me. He just chatted away and asked lots of questions. Medical protocol requires doctors to establish that patients seeking any form of SRS actually, seriously want surgery based on what is called, in transgender health discourse, the test of Real Life Experience (RLE). And so the performative criterion becomes, Can I establish that I have a stable and longstanding record of making successful choices in the world that are recognizable and public actions which would pass as Otherly gendered?

I knew that many of the queries were quite important to get right, no matter how casual they may have appeared, like, “Would your ideal gender identity include male genitalia?” If I sounded like I love being a woman “just the way I am,” including all my womanly parts, I would fail the necessary performance of some stable elements of gender dysphoria that would make wanting a male chest something other than totally pathological. Fortunately, “bottom surgery” (as we trannies call it) is a pretty risky biz, so I made some kind of blisteringly ironic statement about preferring a dick I could slam in a drawer to one that might whither away and drop off my body. It seemed persuasive. And I meant well. “Have you told your parents?” This was a tough question, on all kinds of levels, not the least of which is, “What’s to tell?”. Once again, humour was my friend. Most of the time, I was able to assert my stubborn attachment to a transitive relation to gender — a moving project with no fixed address. I insisted on standing in the space of gender queer, and of living a life that is about playful complexity, rather than having ever inhabited something as apparently simple as a tick box on a form.

We moved on to Step Four, because I passed Step Three. OMG. Who was born of this moment - this institutionalized accomplishment of intelligibility?

Dr. B told me enthusiastically that he would not require me to be evaluated by a psychiatrist, because it seemed like I “had a really stable and healthy identity in relation to my complex gender”. And so I learned about the various options for my chest reconstruction, which include several variations, from fixing the problems residual to the bilateral mastectomy, to a full chest contouring operation. I have lots to think about. At the end of today, I was fixated on two thoughts:

If I had been talking about using reconstruction to get a 36DD chest, I would not have been required to disclose whether I felt like I had been born, secretly, as Dolly Parton, and now needed surgery to correct a lack of fit between the inside feeling and the outward appearance.

Maybe everyone should have to read Foucault as a right of passage into adulthood, and yearly thereafter. There might even have to be a test.

I am left with enormous respect for a doctor who has learned so very much about how to care under conditions of institutionalization, uncertainty and risk. I am, also, so very proud that I found within myself the courage to insist on speaking truth to power about a kind of complexity of intelligibility for which there are so very many punishments, sanctions and harsh measures.

 

Quality of Life and POV

“Are these realistic decisions or not?” asks Dr. Todd Tuttle, cancer surgery chief at the University of Minnesota, who led the study after more women sought the option in his own hospital. … “I’m afraid that women believe having their opposite breast removed is somehow going to improve their breast cancer survival. In fact, it probably will not affect their survival,” he said.” More Breast Cancer Patients Opt for Double Mastectomies

The Point of View (POV) concept is so crucial in thinking about cancer. One’s relation to cancer so significantly determines how the world of cancer is read, written and interpreted. But not all folks who exist in an intimate relationship with cancer articulate the significance of POV.

“More Breast Cancer Patients Opt for Double Mastectomies” reads a headline today from an article in the Wall Street Journal that reports research from the Journal of Clinical Oncology. In a nutshell, Dr. Tuttle and his colleagues report a 150% increase, since 1998, of women getting double mastectomy surgeries where one of the two breasts removed was apparently healthy. The study shows that women who opt for this surgery tend to be younger, and that the choice was not affected by the severity of the tumour itself.

My own choice for the immediate treatment of breast cancer was just like that reported by Tuttle’s project. It appeared that I had one healthy and one cancerous breast, and I opted to have both removed - one, prophylactically. This decision has, at times, been agonizing to live with. There’s lots of middle-of-the-night 20/20 hindsight. And then there are my social mirrors. Every time that I have to explain my scenario to a new doctor, as was the case last week with a gastroenterologist, there is the same reaction - passionate consternation. They get a look of extreme agitation, and invariably ask, immediately, “WHY the aggressive surgery?”.

It has been interesting to me to review my diagnostic reports as I prepare for my 2nd. opinion consultation next week. I had never, for example, seen my breast MRI report. It turns out that I had a large, secondary area of DCIS (cancer) in my right breast, close to the chest wall, that had not been identified by the gazillion mammograms I had prior to the MRI, which was done just days before my surgery. This area was never biopsied. If I had chosen the route of a lumpectomy, no one would have known about the other area of DCIS. The pathology report on my left breast showed significant areas of cellular abnormality — apocrine metaplasia — which is a precursor to the development of invasive cancer.

So, all things considered, and with the pattern in my familial history of bilateral invasive breast cancer, did I make the correct decision or was it “overly aggressive”?. I think it’s interesting that a cancer researcher, like Tuttle, could actually make the claim that women living with cancer are somehow deluded about how removal of the apparently healthy breast will “affect survival”. For Tuttle, there is no impact on survival. For this group of medical researchers, it’s about an empirical relationship between various surgical options, and years of life. In this project they don’t discriminate between ‘years of survival’ and ‘years of disease-free survival’. However, even in the case of his research, data clearly show that removal of the healthy breast reduces likelihood of a recurrence. So how could that not be a significant difference? Surely just the fact that I don’t have to worry ongoingly about a mammogram failing to identify cancer in the other breast “affects my survival”! And similarly about treatment options. For Tuttle, it is paradoxical that women would choose prophylactic breast removal to reduce recurrence, rather than tomoxifen, which would reduce recurrence hormonally, by blocking the uptake of estrogen. For me, that one is a no-brainer. Do I want to enter into immediate chemical menopause, or live without my left breast? Gosh. I wonder why it seems to clear to me, and so odd to the medical researchers. POV.

I am grateful to the activists from Breast Cancer Action (and others) who lobbied doctors and the medical establishment in order to steer them away from what used to be the standard of care for all breast cancers — radical mastectomy. However, an approach that aims to “save the breast” no matter what the effect on the quality of life for women living with breast cancer is also problematic.

 

 

Women::Queer::Cancer

Catherine Lord, Professor of Studio Art at the University of California, Irvine has written the most extraordinary piece about life, and the queering of cancer. it’s utterly brilliant, langourously evocative, funny as hell, and trenchantly, obdurately insightful. Is it clear that I love love LOVE this work? I am just feeling so incredibly heady about the fact that there are women in the world who are producing work that is so inspirational, and just so damn smart, that it is demanding of me that I live up to its courage in the shape and texture of my own struggles with cancer. Thank you.

Lord, C. The Summer of Her Baldness: A Cancer Improvisation.

Excerpt:
Q: Is hair as unnecessary a protusion as a
dick in most social circumstances? Conversely, is
hair as much fun as a dick in most social circumstances?
Q: If the penis is located between the legs,
and the phallus is located between the ears, where
is a lesbian’s hair when it is not on her head? (I
have kept mine in zip-locked baggies, I confess, in
anticipation of a future I do not yet understand, but
this is a more literal answer than the sort I have in
mind.)
Q: If a straight woman rushes to the wig
store (get ready, get it in advance of the chemo,
have it waiting so that it will be there when you
need it, that’s the word on the street), what should
a lesbian do? Wigs are tight. Wigs itch. Wigs are
about passing. Or are wigs like lipstick? Get over
it, apply the signifiers, hit the road.
Q: How come men OWN not only dicks but
bald? In this year of the fabulous
homeboy/dude/fag—take your pick of race and
sexuality and combine as you will—how does a
dyke lay claim to bald outside her own house?
Only my lover has so far seen my pate.

++++++++++++++++++++++++++++++++++++++

Until you get your hands on the book version, you can read a long excerpt in an academic journal online, as follows:

The Summer of Her Baldness
GLQ: A Journal of Lesbian and Gay Studies - Volume 9, Number 1-2, 2003, pp. 263-305

 

What am I Missing?: It’s Rant Time!

I was expecting the micro-sized package of crummy pretzels, instead of which, placed on the cheap plastic tray beside my drink offering, was a prayer. “Oh, I’m sorry”, I ventured to the Alaska Air flight attendant, “I didn’t order the Christian meal.” Okay, so I was looking just a tad smug when I directed my thinly veiled ire to her prompt attention. “Well!” she said, tersely, “Most of our passengers find the prayer a comfort.”

I felt pretty much the same kind of astonishment comingled with disappointment and anger when my family physician offered me, yesterday, during a visit when I went to talk about how to manage diverticulitis, an advertisement for the Been-A-Boob breast prosthetic that is marketed with the Janac sports bra. Now before I go on to relate more of this story, let me very clearly state here that I LOVE my GP. She is wonderful, kind, very competent and has been a true supporter and cheerleading team member during my medical catastrophe of 2007.

Gazing down at the advertisement for the augmented sports bra, I tried to figure out a non-controversial and non-confrontational way to move on - a socially appropriate segue to dislodge my doctor from her own discomfort in the face of my public breastlessness. I noticed that the founder of Janac Sportswear is a Dragon Boat paddler, and so I ventured forth something banal about how in the Spring, I too was going to be paddling in a Breast Cancer boat, and that I was doing a lot of post-mastectomy physiotherapy as a way of getting strong in anticipation of my paddling. That seemed all very healthful and positive, and was intended to get us both onto a different terrain. Undeterred, my doctor suggested, then that, “Well great, once you get yourself a sports bra, you can be one of the regulars on the team.”

“One of the regulars on the team.” I could have said that my entire life stands as a testament to my absolute dedication to undo the notion that one might ever aspire to being “one of the regulars.” But of course, I didn’t. Where’s Foucault when you need him — like the moment in Annie Hall when Marshall McLuhan appears out of the blue in a movie theatre line-up to interrupt the babbling of an arrogant man in the line (go watch the excerpt, it’s still really funny).

Lest you think that I am disparaging the desires of anyone other than me who wants breast reconstruction or to wear a breast prosthetic, stop right here. I think that people should be totally supported to seek out whatever brings them peace and happiness following the removal of one or both breasts. I am happy that a whack of tax dollars are going to pay for breast reconstruction for women undergoing mastectomies. What irks me is that my own choice to go breastless, and keep it that way, is not being supported. And it is both discouraging and of critical concern that options like Been-A-Boob or reconstruction are being presented to women couched in a deliberately crafted discourse of Repair of Damaged Goods, Aspiration to Return to Normalcy, or one might say, Non-Voluntary Enlistment in Normalization. The message is clear - (1) You are disfigured. (2) You feel really bad about that. (3) We can help you get the help you know you need to fix this problem.

But, one must always ask, “What IS the problem here?” The Janac Sports Bra literature tells the reader that she can “Look Good at Home and at the Gym.” What am I missing? Who is going to appreciate my Sports Bra as I work around the house? Who is going to be bothered by my flat chest as I work out at the gym? From my vantage point, the fact that I can now work out at the gym without the encumbrance of a sweaty clingy bra is nothing short of a miracle. It’s one of the few silver linings in this really fucked up cloud. What am I missing here?

Jacqueline, who blogs as Rebel One in Eight, makes Rhea Belle a line of clothing that is specially designed for post-mastectomy women, and it’s not about a cover-up! Take a look at Jacqueline’s Caged Bird T-shirt! I love her Brand tagline: “Not a statistic. More than fashion. It’s a rebellion.”

So please help me out here. What AM I missing?

 

Born to Be Alive: Drag King, Tantric Sex, and White T-Shirt Contest

Okay, so for an audio track to listen to while reading this post, go grab this on for size: Patrick Hernandez, the one and only original Disco Queen, and Born to Be Alive crooner. If you are observant, and have laid eyes on me in the last three months, you will notice in the picture above that finally, Mary is BLOND again. YAY!!! Months of AC (after cancer) guilt about carcinogenic hair dye stopped me from reaching for the bottle (of bleach). How dull.

This weekend was my first AC BIG social excursion. Unexpectedly, I found myself at the BOLD conference (Bold Old(er) Lesbians). And I say, “unexpectedly” simply because I have a pretty uneasy relationship with the “lesbian” moniker, let alone “old”. Call it internalized homophoboia if it makes you feel better, with maybe a dash of unresolved misogyny and ageism. I wouldn’t deny any of it. Identification is complex ground. I can live with/in/as queer, or even dyke, but the L word just doesn’t work for me, and never has. At any rate, there I was Friday night listening to a panel of amazing women at a literary reading, and it turns out that one of them, Betsy Warland, read from a recent work that features a primary character living in the altered state that results from a bilateral mastectomy. The “never the same” ontological house of mirrors that breast cancer effects is also the theme of Only This Blue, a long essay-poem by the talented Warland. It’s on my pile of things to read this month, quite close to the top, in fact. The pile is substantial!!!

One of the highlights of the conference for me was a performance by drag king troupe, 3 Dollar Bill. After the show, I was hanging around outside the main ballroom, and someone came up to me and asked me if I was a drag king. I have to say that I was incredibly excited by this instance of mistaken identity. I decided it had to be because of my stunningly flat chest, which looked, perhaps, like a really skillful instance of chest binding. Flush with excitement, I practically flew over to my pal J, from Little Sisters bookstore, who was standing in a crowd that included all the guys from 3 Dollar Bill, and breathlessly relayed the anecdote. J quickly suggested that perhaps I should perform my first drag king act at a social event the group had planned for the Xmas season at the Majestic. The “real” kings decided that maybe, I could give it a whirl, and that they might even offer tutoring. My first homework is to choose “my song”. I was given sternly delivered instructions about how important it would be to pick a song that I could really “fill” — as in, “fill the space”. F*ck!.

Earlier in the evening, while innocently perusing the amazing array of desserts, a conference-goer mistook me for the demonstration gal in the Tantric Sex workshop. I am not sure exactly what kind of energy I was giving off last night, but it was good.

I even had my very own first vision of a post-mastectomy-no-reconstruction-honest-to-goodness-dyke at this wonderful conference (yeah, so, I’m a convert). I did my best not to gape, but I really felt like I can only imagine someone might feel who had gotten very lost in the woods for oh, fifty years, only to emerge and experience their first sighting of a fellow human. I drank in her image. I even screwed up the courage to talk to her and get her card. Good for me. I am not always good at stuff like that. Social multi-tasking is definitely not my strong suit.

In honour of her, I took off my sweater to go and dance. I realized the other day that of-late, I have been carefully adjusting my wardrobe so as to avoid the plain solid colour t-shirt directly worn over flat chest. It is, well, just too bold, even for me. I have been wearing a white t-shirt and then another t-shirt over top of that one. Or I have been wearing a white t and a button-up shirt over that. Got the picture? Well buoyed with excitement about my sighting I decided to toss off the 2nd layer of protective armour - the sweater - and go and dance wearing just my light white t-shirt. I felt practically naked. There was no hiding the fact that my chest is completely flat. And I felt GREAT. It was really liberating. While I was dancing my heart out, I discovered my drag king song — Born to be Alive (the one and only and incomparable Patrick Hernandez). It doesn’t get any queerer.

Yeah. I am. Still Here. Queer. And definitely, Alive.

PS> Oh, and about that BOLD conference. (1) Many thanks to community heroes Pat Hogan and Claire Robson for organizing this cultural extravaganza. This kind of work is SO very important. (2) Bold - Yes, Older - Yum, and Lesbian - double Yum.

 

Ovarian Cancer Awareness Month

Today I got a wonderful email from a friend/colleague who, in an email sent to all the faculty staff and students in my department, has identified her participation in the CIBC Race for the Cure as in support of my recovery. That’s really great. I was moved that my colleague would link up her fundraising with my own experience with breast cancer. I like the queer blend of public and private in that gesture. I’ll be walking in the Race, as part of Brandy’s team — fellow cancer-blogger and writer extraordinaire . And in case you don’t know all the facts and figures about breast cancer, and why we all need to do our bit to raise awareness and funds, start reading. I am amazed by what I didn’t know about breast cancer until my own diagnosis. So don’t feel bad about not knowing. Ignorance effects are complex.

The sheer scope and deadly impact of breast cancer fells me in my tracks every time I look at the numbers. In 2007, about 23,00 women in Canada will be diagnosed with breast cancer, and 5,400 women will die from it. But when your world starts looking like pink is the only colour for cancers that affect women, think again.

Did you know that September is Ovarian Cancer Awareness Month? I didn’t, until recently. What colour is the ovarian cancer ribbon (click here to find out)? Did you know that lesbians are at particular risk for ovarian cancer (less likely to take oral contraceptives and to give birth, both of which reduce risk). Southern Comfort (a documentary) tells the story of a trans guy whose ovarian cancer went undiagnosed because of gender/trans discrimination, to the point that it was untreatable and fatal. As you may know, this summer witnessed two entanglements with cancer diagnoses and related surgeries for me — July was breast cancer month, and August, ovarian cancer. The second surgery turned out to be a false alarm for cancer, and the complex abdominal mass that had the gyne/onco docs worried was actually a grapefruit-sized benign fallopian cyst.

Until my own brush with ovarian cancer, everything I knew about it came from my friend Spike’s amazing ovarian cancer blog. My time online looking up information about the two kinds of cancer revealed stark differences. There is a veritable flood of information about breast cancer, and virtually none about ovarian cancer. And what corporate campaigns can you think of that co-brand products with ovarian cancer in the manner in which this is commonly done with breast cancer. I can’t think of a single example. My brief encounter with ovarian cancer was plenty long enough for me to become keenly aware of multiple differences between the two, all of which could go under the heading of — It’s Deadly, But It’s Not Sexy. And that would, yes, be a reference to the sociocultural politics of ovarian cancer as it compares with breast cancer as a marketing/branding tool.

Make no mistake about it, ovarian cancer is absolutely deadly, and significantly more likely to kill those who live with it than breast cancer. And there are many folks living with ovarian cancer. Yes the prevalence is lower than breast cancer, but nevertheless, ovarian cancer is the fourth leading cause of death from cancer amongst women.

I have taken the liberty here of including an excerpt from an ovarian cancer blog that hits the nail right on the head.

Excerpted from: Elsnr’s Ovarian Cancer blog

I Think I Got the Wrong Cancer (a vent/opinion)

Here it is September, Ovarian Cancer Awareness Month and Gynecologic Cancer Awareness Month. Sadly, here in Madison, it is so quiet I can hear my heart beat. Even the event that the UW Comprehensive Cancer Center had no media coverage and they will alert the media. I’ve heard others say the same thing - nothing. This is a very quiet year. Today when I was at a Hallmark Store there were several things for breast cancer. You can even do a Hallmark e-card for breast cancer. In Penney’s there was an area with pink items and a big pink ribbon. Someone gave me issues of Redbook and Ladies Home Journal October magazines just out–filled with breast cancer and pink. I know it wasn’t teal in September. Even the American Cancer Society has nothing on its homepage on ovarian and gynecologic cancers. There is, however, a box with a pink ribbon for breast cancer.

I think I got the wrong cancer. I got an unpopular women’s cancer and no one wants to talk about gynecologic cancers. Uterine cancer has a death rate equal to breast cancer. Ovarian cancer has a death rate four times that of breast cancer.

I think I got the wrong cancer. If I had to have cancer, I wish I’d had breast cancer. There is so much awareness, so many magazine articles, so many companies getting on board the pink bandwagon. I’d have plenty of resources, plenty of support. I’d just have to say cancer and people would say “breast?” and be sympathetic.

I think I got the wrong cancer. This is one that only a very few companies jump on the bandwagon and help spread awareness. This is one on which it is an uphill battle to get awareness/education out. It isn’t popular. Breast cancer is popular. Ovarian and gynecologic cancers aren’t popular. Everyone cares about breast cancer. Gynecologic cancers? Not unless you have a relative or friend with them.

I think I got the wrong cancer. Since it seems that women only get breast cancer and no other “women’s” cancers, I think my cancer got confused. It was supposed to be breast cancer but it got lost in my body and took the wrong road and wound up in the ovaries.

I think I got the wrong cancer. I got a very lonely cancer. I can go everywhere especially in mid-September through October and find pink ad nauseam. I don’t see teal. Women don’t know enough about my cancer but they know quite a bit about breast cancer.

When, of when, will our voices be as loud as the breast cancer voices? When will we be recognized? When will awareness and education spread all over? When will women go to their doctors and see materials on gynecologic cancer as well as materials on breast cancer? When will teal be as recognizable as pink? When…

 

Breastless in Vancouver, and You?

So yesterday, at the breast/onco surgeon’s, the resident comes in first, to prep me before the big cheese herself. When she prepares to do the examination of my incisions, she says, “Let’s have a look at your breasts…” <AWK Pause> “I mean” she continues, having clearly funbled the ball, “Where your breasts used to be.” WOW. Talk about a shitty save. I can’t believe she said that. No matter how good I feel about my mastectomy, to be defined entirely by lack in such an explicit way really sucks.

My biggest challenge today was when the manicurist asked me, “What shape do you like your nails?”. Yikes. This is not something I have ever spent even 2 seconds thinking about. I stared at her rather intently, hoping for clues, and then rather awkwardly confessed that, “I don’t think I have a favorite shape”. I knew that was the wrong answer. It was like being back in school. She wrote me off. I tried to recuperate my girl points by commenting on her highlights, but it was in vain. It was probably even worse than if I had just let it die quietly on the vine.

She did spend rather a long time trying to figure out why my chest was so totally flat. But looking would not yield an answer to her curiosity. I have seen this look, now, many times. When I catch people looking, they are scanning from the chest to the face and back again. I guess they are trying to figure it out. Hmmmmm. Looks like a woman’s face, but no boobs. So they look at the face again, maybe the buzz-cut short hair is another distractor, then back down to the washboard chest.

I spend countless time here and there scanning the crowd for boob-less chests myself, I must now confess. I want to see more people who look like me. I feel lonely in my state of exception. I keep hoping that I will look out into the crowd at the mall and see an obviously breast-less chest like mine, thrust proudly forward into the flow of life. But I don’t — EVER. In the Cancer Journal, Audrey Lorde talks about the politics of visibility of walking in the world, breast-less. Lorde is very passionate about the politics of visibility for the breast-less and excoriates those who would foist prosthetics or reconstruction on mastectomy patients.

I have no interest in being critical of anyone else’s choices. But I would like more visibility for those of us who travel the world without breasts. Come out, come out, wherever you are. Send me a picture of yourself. Tell me how it is, for you. Maybe we should start a Facebook group. Or make t–shirts.

 

MRI’s, Breast Cancer, and Screening Options

Major Announcements Bolster Use of MRI Screening for Women Deemed to be at High Risk for Breast Cancer

So I will likely post quite a few things concerning screening and breast cancer. Don’t forget that my own breast cancer was missed across multiple mammograms whilst I was already enrolled in a program for women at high-risk. There is nothing particularly odd about this, since mammograms are unreliable screening tools for women under 50 and/or with dense breasts. I may even repeat myself on this topic. Let’s just call that, education. MRI’s are far from perfect, but they ARE going to be more likely to detect cancer. The weakness of the MRI from a clinical point of view is that it over-detects — produces false positives which then result in unnecessary biopsies. Oh, and as far as the state is concerned, MRI’s cost too much. Yes, that’s right. Even if you are high-risk, you can’t get a breast MRI unless you pay for it yourself. What is a woman worth, these days?

 

Read this…

Welcome to Cancerland, by Barbara Ehrenreich, is the single best thing I have read about breast cancer — the politics, the plague. Read it, please.

 

Dumb Fairy Tales and other Discourses of Femininity

I now look at myself every morning, every evening, naked, in the mirror, equanimously, as I always did, and what I see is not a maimed body. Some might call this denial. Yet - I look at this flat expanse of my chest and I do not find it ugly, or repellent. My face, somehow, “goes” with this chest, there is a harmonious continuity from my face all the way down my body. There is, in all human beings, when they are bare-chested, a touching symmetry between the eyes and the nipples, and this symmetry, of course, in my case, is gone. Yet, and this may sound scandalous, absurd, or even mad: this breast-less body is not devoid, in my eyes, of a certain pure and abstracted beauty. If it is indeed monstrous, it is so in the manner of some magical, not quite human creature - a fairy, a mermaid - an Amazon. Anne-Marie de Grazia

Likely you know the fairy tale of The Princess and the Pea. A prince is looking for a bride. A woman appears at the gate of his castle who claims to be the real deal but she looks, well, pretty disheveled. Old ma knows how to tell the difference, and so places a pea under the pretending princess’ twenty mattress bed. When the parvenu wakes up she whines incessantly about having slept so poorly because there was something amiss with the bed and BINGO everyone knows she’s the real deal. The prince marries his newly authenticated bride. The pea is put in a museum.

As a child, I felt deeply ambivalent about this story. The fetishization, in women, of useless knowledge seems to me epitomized by the positive spin placed on the princess’ ability to find the pea. And when the possession of that useless knowledge is the litmus test for jubilant heterosexuality, well, then its existence, let alone cultivation, is most assuredly far from innocent.

How then, to feel about the fact that it is now my task, imposed by the medical establishment, to effect local control of a breast cancer recurrence by finding the pea. “When it comes back” my surgeon explained patiently, the other day, “it almost always feels like a pea.” Keeping track of the pea is not a new job for me. My family tree is chock-a-block with breast cancer, which is why I have been dutifully going for yearly mammograms since the age of 42.

Little did I know that mammograms are a very unreliable method for tracking early breast cancer in women under the age of 50, and that this lack of accuracy is even more pronounced for women with what are known as “dense breasts” - small, prone to cysts… After all, I had a “good” mammogram just ten months before my cancer was diagnosed. It had been missed the time before. It is also the case that I did not know that MRI’s are considered by some to be a much more reliable tool for detecting early breast cancer in women under 50.

I wonder about how my chances of finding that pea would be affected by reconstruction. There is a lot of pressure on women to undergo reconstruction after a mastectomy. Audre Lorde talks about this phenomenon in her Cancer Journal. When I went to visit my GP about a week prior to my double mastectomy, she asked me which surgeon was going to do my reconstruction. She guffawed when I told her that I had decided against reconstruction. “You’re in denial” she proclaimed. “I am going to sign you up. The waiting list is two years anyway. By then, you’ll be more than ready.”

Oncological research appears to indicate no impact of reconstruction on detection of recurrence. But there is a clear set of normative assumptions at work in this research, which go something like this: (1) breasts constitute a vital marker of femininity, (2) women will benefit from the restoration, post-mastectomy, of their “spoiled identity” (E. Goffman) and therefore (3) reconstruction should be made widely available to all women undergoing mastectomy.

This is what the official story regarding reconstruction and mastectomy sounds like:

“Deciding on Mastectomy Making the decision to have a mastectomy can be very difficult. It can be hard to imagine living without your breast, and you may feel like your identity or femininity is being threatened. The procedure can often be made easier by having breast reconstruction after mastectomy. This helps to reshape your breast and reduce any disfigurement, and may help you to feel more comfortable choosing mastectomy. Ask you health care provider for more information about this option.”

No where in all of this research are the side effects and complications of reconstruction clearly delineated. Reconstruction surgery involves an initial long and very painful operation followed by several additional surgical procedures. The impression of breasts is created either by means of implants or the use of a woman’s own tissue (abdominal) which is relocated to the chest area.

So what is the medical establishment’s priorities in relation to breast health, cancer, and morbidity amongst women? Clearly, millions, if not billions of dollars is going to the improvement and funding of breast reconstruction. And it is equally obvious that virtually no money is being directed to programs that would improve the reliability of cancer detection in populations at-risk of mammogram failure. Whose job is it, actually, to find that pea? How terribly convenient for medical discourse inappropriately to relocate responsibility to women to find that pea, and in so doing, exaggerate the agency possessed by individual women in determining the likelihood of survival in relation to early stage breast cancer.

What a different world it would be if we decided to spend all of the breast cancer research dollars on the (a) identification (and elimination) of the actual causes of breast cancer, (b) widespread availability of accurate methods of early detection, (c) appropriate methods to deal with post-surgical complications (e.g., lymphedema, which is very common and extraordinarily challenging), and of course, (d) a cure for cancers of all kinds. Hallelujah!