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.

 

Mary’s Christmas Queer

I had an amazing Christmas yesterday, and you helped to make it so utterly memorable. It wasn’t about the gifts. Janice and I decided to skip that part of Christmas this year. There wasn’t any overwhelming reason. It wasn’t about anything worthy or principled. We just didn’t feel like piles of presents. What we felt like, was celebration. The very fact that enough psychic space has been cleared in my life so as to permit celebration is attributable directly to the support and overwhelmingly generous love and social connection that so many of you have shared with me. No one knows what to do in the face of cancer. I didn’t have a f*cking clue. And you somehow, against all odds, found the courage and the insight to step into the void, beside me.

So last night, on Christmas, celebrate, we did. Lots of people who I love came to our house for “A Little Christmas Queer”. And please don’t think ‘queer’ is about the sex/gender of who folks cozy up to. It’s just about affirming a principle of kinship that is other than blood ties. And of course, many people who I really wanted to celebrate with DID have family things happening that were good and wonderful, and so couldn’t be celebrating with us last night. So it was far from the whole queer family. But maybe that’s all there ever is anyway — that particular queer family, that night, in that place, and f*ck the idea that there is ever a “whole” anything. What I do know for sure is that there was a lot of love in our house last evening and also, that all my research into how to cook the perfect turkey sure did pay off. Some things should not be an ‘adventure in deconstruction’ and a turkey, perhaps, is one such entity. Although even this claim seems quite suspect.

Yesterday, the bag of breast cancer books that has been a fixture in the living room finally got moved to the back room. It’s almost out the door. I haven’t consulted one of those books for weeks, and the last of the stray volumes that were, up until recently, strewn about the house, was collected up and deposited in the bag.

Loki the super-dog cozied up to everyone, and saved a very special kiss for one of her (many) one-true-loves. Somehow, she manages to find space on the couch for the great dane self, even when there isn’t any. If ever there was a postmodern mathematician with a very post-structural theory of space, it would be Loki.

I started this blog with a story about queer love, a tattoo, and a poster on Ange’s wall that inspired me so many years ago. Last night, P, who knew Ange for many years, brought me that very poster – the very poster of the Deena Metzger photograph that I had spent so many hours staring at on Ange’s wall. After Ange died, P had been guardian of the Metzger poster. P’s generosity in passing on the poster to me is extraordinary. Ange’s poster now sits on my kitchen table, leaning against the wall. I had forgotten that there is a verse of Metzger’s poem on the poster. I was inspired by Metzger’s beauty and courage back then, as I saw it embodied by Ange in her own struggles with cancer. And now, it reanimates my own life. As you do.

Thank you so very much for walking with me, this year, in the most ghastly places that we have had to inhabit. Your courage and kindness have inspired me, and kept me company. I will leave the last word to Metzger.

I am no longer afraid of mirrors where I see the sign of the amazon, the one who shoots arrows.
There was a fine red line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart.
Green leaves cover the branch, grapes hang there and a bird appears.
What grows in me now is vital and does not cause me harm. I think the bird is singing.
I have relinquished some of the scars.
I have designed my chest with the care given to an illuminated manuscript.
I am no longer ashamed to make love. Love is a battle I can win. I have the body of a warrior who does not kill or wound.
On the book of my body, I have permanently inscribed a tree.

 

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.

 

Hallelujah

It was the kind of signature event that tells you, instantly, “You are on holiday!”. I saw a flash of yellow just out of the corner of my left eye. I knew it was my snorkel. By the time I got turned around in the water off Black Rock, on Kaanapali Beach, Maui, the snorkel had flown off my face and disappeared. My first thought was, ‘Hmmm. I assumed it would float.” But it did not float. And the swift current seemed to have taken it away. I had, of course, only worn this snorkel twice. Well, that’s, twice, unless you count the times I tried it out in Vancouver, just to, well, see how it felt, out of the water. And then, with the whole misadventure having lasted only about ten seconds, I spotted the snorkel just as I also spied a man diving down to fetch it. Hidden treasure. Little did he know that I would be waiting when he swam back to the surface, hand outstretched, to reclaim my booty. Would he be disappointed? Sure enough, he reappeared, and I was there, waiting, hand at the ready. I guess he could see that it matched my mask colour. “I would have returned it at the Ocean Activities desk” he proclaimed, before I even had a chance to say, ‘Thanks!”

The sense of sudden but totally manageable danger and misadventure is what alerts you to the fact that you are on Aloha time. Even as I sort of panicked, because it was, after all, a brand new snokel, I also thought to myself, ‘Whatever. I am on holiday. I can buy another one.” The juxtaposition of minor excitement with confident allure is seductive.

Yes. I am finally on holiday. Hallelujah. Go watch KD Lang sing Hallelujah, and think about how unbelievably grateful I am for the chance to relax. Finally. Since April, and the breast cancer diagnosis, Janice and I have not been able to take a single holiday. Well, unless a weekend in Seattle counts. And here we are. It’s sunny. There’s sand everywhere in the condo. And I am full of pineapple. You’d think I was pregnant and dealing with some weird kind of food obsession. I can’t stop eating pineapple. I love pineapple. I think it’s because eating pineapple means that I made it, here. And getting here, well, you know just how hard it’s been.

The other thing that tells you you’re on holiday, is that you overhear people saying really odd, interesting, or truly bizarre things. Like the person in the airport, who asked her companion, “What’s the difference between Arrivals and Departures?”. Now that is probably my all-time favorite question. To arrive at a sufficiently complex response, but that was elegant, would be a lovely challenge. “Why is it windy?” was the funniest thing that I heard someone say today. It’s a great question, likewise, because there is no plausible answer. It sounds like a philosophical question, to me, rather than a meteorological question. And any answer would suffice. That’s what makes it a great question. But perhaps the best thing I heard all day was the woman who said to her beach-buddy, “Well, maybe we can do that tomorrow.” YEAH. What a great attitude. Tomorrow, maybe we can do that thing, that we have been dreaming about forever. For the first time in a very long time, I feel like I could actually expect to do something tomorrow, and that it might actually happen. I knew this post would be kind of trite. No sophisticated thoughts. But who cares. I am full of pineapple, and happy enough to be thinking about tomorrow. Aloha.

 

You Had to be There

Watch the trailer of the classic lesbian movie, Desert Hearts (1985), adapted from Jane Rule’s novel

“Always historicize!” Fredric Jameson insists. And so it is important, in some ineffable way that is nonetheless of significance, that I was there, yesterday, in the South End Hall, on Galiano Island, for the Jane Rule Memorial. The event was singular. That memorial, on that day, in that place. Discourses of mobility and virtuality seem to shift our logic of location, and of being, such that the material seems to vanish into thin air — logos becoming code. And yet, I was there. Time and place coincided in only one set of coordinates.

The hall was cold and damp. It was full to the rafters. Mostly Galiano islanders had come that day to the Hall that hosts so many Island events, to commemorate the life of just one of its celebrated citizens, Jane Vance Rule. In case you don’t know Jane Rule, her writing is very important to many generations of queer folks the world over. Rule’s work opened up a symbolic imaginary for queer readers to see themselves mirrored in the pages of a novel where people lived lives, loved, worked, died and most importantly of all, existed with visibility and passion.

July 12th, islanders had packed the Hall, as they so often do, to participate and celebrate Jane Rule’s receipt of the Order of Canada, presented by the BC Lieutenant Governor, with pipers and Mountie in tow. And on that same day, I was, if you recall, at home, elsewhere, being taken care of by Sz, a friend who lives on Galiano, who had come to hold my hand while the visiting nurse removed the dreaded chest drain tubes. I couldn’t be on Galiano that warm summer day. I was, then, very much in the grip of breast cancer’s ferocious hold on my life.

And so yesterday, I had to be there, on Galiano, an island off the coast of Vancouver, that holds so many extraordinary memories of other times, other days, other lives. The people who rose to speak at the memorial talked not so much about the cultural and social and political significance of Jane Rule’s writing, but about an amazing gift of a life that touched others’ lives to the core. Jane Rule had invited them to live a better life, to reach for human relationships that seemed beyond their grasp, and to love fiercely and proudly. That is worth fighting for. That is why I travelled to Galiano yesterday; because I had to be there. Just being there, on Galiano, was worth fighting for, in much the same way that it is so very important to be there to carry on insisting, as Jane Rule did so very effectively, that a democractic life – a just public – is a public space, and a form of sociality, that values singularity. Your life, in that place, at that time; you had to be there.

 

Abreast in a Boat

Fetishizing community only makes us blind to the ways we might intervene in the enactment of domination and exploitation. I see the practice of critique and in particular a critical relationship to community, as an ethical practice of community, as an important mode of participation. Miranda Joseph, Against the Romance of Community

Whereas I had thought, recently, that being a drag king was a remote possibility, it looks as if PINK is going to be my new Spring colour, and sporting drag queen accessories, like a pink wig, glasses and feather boa is distinctly more likely as a possible reincarnation.

Last night, I attended the Novices meeting of Abreast in a Boat (ABIAB), which is a Dragon Boat paddling organization of, and for, women living with breast cancer. Back in June, in those horrendous pre-mastectomy days (and very long nights) that were awash with tears and chock-ablock with doctors appointments, tests and more tests, I insisted that Janice and Sz take me to the Alcan Dragon Boat Festival. This popular annual Vancouver event attracts many thousands of spectators who crowd the shoreline of False Creek to watch dragon boat paddlers compete. One of the highlights of the event is the race between boats paddled by breast cancer survivors. These paddlers create a moving panorama of courage and compassion on the water as they bring their boats into a special formation after their race, holding carnations high into the air, each one representing a woman who lost her life to breast cancer, and finally, dropping the flowers into the water.

Last June, the very same day that I got the “Mary, you have breast cancer.” call on my cellphone while standing in the Westjet line at the Edmonton airport, I was invited to a potluck where I met M – a fellow breast cancer survivor. When she talked about the dragon boat paddling “for survivors” I experienced such an intense moment of identification with her that it reminded me of when I was really young, and met honest-to-goodness queer folks for the first time. My diagnosis just hours old, I noticed that I was mesmerized by M. I sat beside her throughout the party, and finally screwed up the nerve to ask her for an email address with some really weak and unlikely explanation. I wasn’t even sure what I wanted to ask M. I just needed to make a connection. I was awkward, unsure of what to say, or how to identify myself. What was the secret handshake? My need to create a network that was larger in size than the number 1 was palpable. I knew that I absolutely had to be present for the survivors’ dragon boat race a few weeks down the road, and in particular, for the moment of the carnations.

Watching the ABIAB paddlers race at the Alcan Festival, and then bring together their boats and raise their carnations in memory of the women who lost their lives to breast cancer that year was poignant. The affect was riveting. I made a decision that day, just two weeks prior to my mastectomy, that I would be present on the water the following year. And I was resolute about the fact that next year, unlike that day in June of 2007, I would not be sobbing, and I would not be a spectator.

Abreast in a Boat has an interesting history that represents, in its essential elements, the key features of many breast cancer stories. University of British Columbia Sports Medicine physician and researcher, Dr. Don McKenzie, in 1996, founded a research program designed to challenge then prevalent knowledge and perspectives concerning the impact of upper body exercise and women living with frequently occurring impacts of breast cancer surgery and treatment, like lymphedema (painful swelling of the arms). At that time, it was widely believed that following breast cancer treatment, women should seriously restrict physical activity. Au contraire. McKenzie’s pioneering research showed that a systematic approach to the introduction and maintenance of upper body activity has a positive impact on the health and lives of women living with breast cancer. Just over a decade later, thousands of breast cancer survivors the world over are enthusiastic paddlers dispersed over more than a hundred organizations like ABIAB.

The meeting yesterday was awash in identity narratives profferred as a mode of community building and performativity. ABIAB members told stories about survival, camaraderie, emotional support and the sustenance provided by the company of women. There was, of course, a logic of inclusion and intelligibility that structured these identity organizing narratives. And where there is a grammar of inclusion, there is, of necessity, one of disidentification and estrangement. The stories were also about “being women” or “ladies”, wearing pink with pride, and telling one another stories that “can’t be told to husbands”. I felt the familiar sting of enforced feminization deep inside, and likewise, the alienation from stories about husbands, and other “men in our lives we can’t talk to”. This is, of course, the stuff of community where the logic of “in the singular, plural, and alike”, fails abysmally. How does this group that is predicated on a logic of community practice hospitality to strangers?

I’ll keep you posted.

 

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.

 

Quotidian Cancer: Field Notes on the “New Normal”

Forget the literal-mindedness of mastectomy, chemically induced menopause, etc.:
I would warmly encourage anyone interested in the social construction of gender
to find some way of spending half a year or so as a totally bald woman. As a
general principle, I don’t like the idea of “applying” theoretical models to particular
situations or texts—it’s always more interesting when the pressure of application
goes in both directions—but all the same it’s hard not to think of this continuing
experience as, among other things, an adventure in applied deconstruction.

Eve Sedgwick, Tendencies

10 A.M. Driving to Costco. It was an eerie sight. There was both a woman and a dog in the car. They were up front, she in the driver’s seat and the dog in the passenger seat. Their heads were more or less of identical size, orientation and demeanor. Spooky. When I saw them, I thought, “Fcuk. That’s just like cancer. It’s always up front, riding with me. Not me. But beside me. My body double. My constant companion. It’s still here. No one can see me now, separate from it. Cancer.

2 P.M. Walking on the Sea Wall. Since my second opinion consultation in Toronto, I have been wrangling a bad case of blogger’s block. I think I know why. I have my friend Spike to thank for the profound insight. Spike is a stunning blogger who has written brilliant and heartfelt stuff about her experiences with ovarian cancer. We went for a walk on the sea wall. I was so happy for the chance to chat with a friend who has traveled with cancer. There are, I believe, significant similarities across these experiences, and really important aporias (puzzling gaps – I just love this word) of understanding when trying to dialogue with someone who hasn’t “been there”. We didn’t talk a lot about cancer. When we were talking about the challenging time when treatment ends, Spike said something that reverberated deep inside. “People mistake the treatment for the disease, and they interact with you like all traces of the disease are gone when the treatment ends.” Yeah. What she said. I think that I was mistaking the words for the disease, and thinking that if I kept writing this blog, I was keeping the cancer alive. So I changed the blog name, from Big Grrls Do Cry, to Adventures in Deconstruction, which is borrowed from Eve Sedgwick writing about the relationship between academic theory, and experiencing breast cancer. Maybe that will be enough of a talisman to keep me safe, here.

7 P.M. Riverport Movie Theatre. What does it say about my newfound relationship with mortality when the simple act of eating popcorn at the movies feels like laughing in the face of death? They told me, you see, not to eat popcorn. That was the only food that had been singled out as forbidden fruit following my August diagnosis of diverticulitis. But recently, I went to see a gastroenterologist for follow-up tests, and he dismissed any notion that seeds and hard sharp kernals might pierce through the weak sections of the intestinal wall that make up the diverticula. So today, I quenched my thirst for movie theatre popcorn. It’s a ritual I love; sitting in the dark, and reaching compulsively into my bag of popcorn, munching happily in rythem to the sound of the familiar strangers in the crowd. I almost disappeared into the co-present space of bovine, masticative banality. It was brilliant.

 

Re/Construction: How to Queer the Alchemy of Intelligibility

“Gender is always posthuman, always a sewing job which stiches identity into a body bag.” J. Halberstam

Yesterday I went to see one of the surgeons who operates in the local Breast Reconstruction program. Do you remember when my GP told me that she would sign me up for breast reconstruction because I was “in denial” when I declined reconstruction at the time of my bilateral mastectomy? Well sure enough, the surgeon’s office called me because they had a cancellation, and I went to see Dr. N because I thought I should explore all the options available to me. And yes, I have been rethinking this reconstruction business generally, and in particular, my strong resistance to the whole thing.

I learned two things yesterday. First, I am sad to say that I am so shallow, and so marked by cultural norms around fat phobia, that I was thrilled to hear that “you don’t have enough abdominal fat to make breasts”. Having grown up as a tormented fat child, this was my very first adult experience of being told that I wasn’t fat enough! <OMG that is SO sick> But seriously folks, I also knew for sure, feeling absolutely alienated by the various breast implants littering Dr. N’s desk, that I could no more voluntarily submit to attaching breasts to my body than to wear a dress. Not me.

As I have commented upon in previous blog posts, breast reconstruction is narrated entirely un-self-consciously as the reparation of a state of injury to restore a woman to a previously uncompromised state of femininity. There are many normative investments in this line of reasoning, including but not limited to a view of the female body as equivalent to the feminine body, and a view of the female body as being made up, symbolically, of essential parts, such as breasts. On this view, there is a whole which can be radically compromised by the subtraction of specific parts. And so most texts about breast reconstruction take for granted that the stigma of mastectomy will involve an injury to femininity that can be corrected surgically. The degree to which this is a symbolic restoration is underscored by the things that are left out of these accounts, like the fact that using the best of current techniques, breast reconstruction can not repair the nerves that provide sensation to the breast.

However, for me (and many others) the fundamental problem with what I will call, the Restoration Story, is that it incorrectly identifies my gender identification in general, and in particular, the role of breasts in my gender identification. And so a refusal of, or resistance to, “breast reconstruction” is, in fact, often not a desire to refuse a reparation to the damage of surgery, but rather, a refusal of the notion that there ever existed a normative relationship with breasts. How do you reconstruct what was never there? It’s one thing to co-exist with breasts that never felt like they belonged on my body. But how could I ever choose to undergo surgery in order to “restore” what never was — which I could simply define as a state of normative femininity?

I have been thinking about my options. I know that they don’t include the recreation of breasts. However, I also know that I am pretty sure that I don’t want to live out the rest of my life with a chest that is entirely unintelligible as a chest. Or at least, I am drawn to the notion that “body alchemy” involving a potent mix of feminine and masculine identifications creates a kind of “gender trouble” with which I feel a deep and familiar affinity. So now what? Well one of the options that I have been thinking about is the form of body modification that f>m transgendered folks call, Top Surgery. Loren Cameron’s gorgeous book of photographs, including his own self-portraits, document this Body Alchemy as practiced by f>m trans folks, wherein breasts become a chest.

I didn’t feel like I could talk about this with Dr. N, whose desk was covered with an array of breast implants and nice diagrams of busty beaming women. There is a plastic surgeon in town who does most of the f>m top surgeries. I have to wait a year to see him, but maybe I can just hunker down and be patient. It is SO not my best trick, but it may be the only trick in my book. It wouldn’t be something to undergo without a lot of thought, in any case. All very interesting to contemplate. I wonder what our public health plan will say to f>m chest surgery in lieu of breast reconstruction. Or in my case, chest surgery as the only genderqueerly-intelligible form of reconstruction. Think the logic will work with the billing bureaucrats?

 

Welcome back, Welcome forward

“Life can only be understood backward, but it must be lived forward.”

— Søren Aaby Kierkegaard

It’s a good thing, you see, that the clocks went back this weekend. There has been a kind of temporal shift in my life since the 2nd opinion visit with the oncology team last week. Getting such a definitive “All Clear!” prognosis has blown a lot of anxiety out of my life and left, in its place, something like excitement, clarity and momentum.

Cancer stopped time in my life. Or to put it more specifically, It had the impact of waving a strong magnet over a compass. All the persistent and reliable frames of reference in my life imploded, right there, in the moment of a singular articulation {CANCER} in the phone call by my GP while I sat in the Edmonton airport, trying to come home.

It’s very symbolic, of course, to have a major course deviation while trying to “come home”. But really, since April, I have been trying to move forward in a universe where what had previously seemed solid melted into an unhelpful fluidity and internally, what had felt reliable was then rather universally unhinged. And time was a central marker of this newfound and extremely unpleasant altered state.

Trauma theorists have written extensively about the impact of trauma on temporality. One of the most consistent observations in this exciting and profound academic domain, is that within the space of trauma, experience is not attached to temporality in somatically or ontologically familiar ways. In the “after” space of trauma, time seems impenetrable. It is as if time has been frozen, or happening someplace else. And so people do things like, revisit the “scene of the crime” in order to attempt, once again, from a different vantage point, to pry open the arrested time of a traumatic experience so as to re-enter the space of trauma and make it somehow narratologically accessible, manipulable, finally.

For a week now, I have felt elated and oddly, familiar to myself again while being absolutely confident that nothing is the same. After about six months of profound insomnia, I am sleeping like a baby. I have just spent five long languorous days that were fun, and without much planning, lists or purpose. If you know me, you will know that the absence of lists and organization is a rather extraordinary developmental shift. And this is not, I must emphasize, an “I learned an important lesson from cancer” feel-good story. All I know is that I am, once again, moving. And I know that my points of reference once again, make sense. Like time.

Something is profoundly altered in my universe. For one thing, I am taking chances that I would never have ventured before. This is especially true in the social realm. A few days ago, I stood in a friend’s kitchen and told her exactly what were the fears that had placed such a stringent limitation on our relationship. At a party this weekend, I walked straight up to a rather daunting woman who I didn’t know, and engaged her in conversation. I am excited about life. I am engaged with life. I am in love, again, with life itself!

 

All Clear!

Yesterday was eventful. I went to see Dr. R at Sunnybrook Hospital, in Toronto, for my second opinion dialogue. My wonderful pal and sister-in-law, M, came with me. I have been staying with M and my brother, Tom, for the last couple of days. They have been so incredibly kind and generous as hosts, inviting over friends and family, cooking marathon meals, and generally being the wonderful people they are.

In some significant way, it is M’s own cancer story, or part of it, one really important detail, that may have saved my life. M had pain in her left breast a couple of years ago that prompted her to seek a diagnostic mammogram, only then to learn that she had breast cancer. When I experienced continuous pain in my left breast this past Spring, it was the echo of M’s story that sent me on my own path to my GP seeking a diagnostic mammogram, and finding likewise, cancer in the other breast.

M and I made our way to Sunnybrook Hospital, and to Dr. R’s office in the Cancer Centre. To recap, for the uninitiated, following my surgery, there was a conflict between the cancer diagnosis at time of biopsy (microinvasion) and at the time of pathology analysis following surgery (no invasive cancer). I located, with Dr. R’s assistance, a dedicated breast pathologist who specializes in the kind of cancer that I had (DCIS) and had ALL the slides sent to her for re-analysis – a fresh and highly skilled pair of eyes. Dr. R offered to provide a consultation regarding the whole case once the pathologist had finished her work.

The important facts that emerged from my conversation yesterday with Dr. R are as follows:

-No indication of invasive cancer

-Clear and significant surgical margins (greater than 1 cm)

-Mastectomy was, in fact, my only surgical option because the cancer was not just dispersed (multi-focal) but also existed in two large and separate locations (multi-centric) which removes lumpectomy as an option.

The clinical implication for the findings is that there is no need for any further treatment of any kind, and I don’t even need to pursue any kind of follow-up monitoring.

I really appreciate the effort and commitment demonstrated by Dr. R, who organized the pathology second opinion, and offered to talk to me with no formal referral — just following contact by email. I can’t say clearly enough how wonderful it was to be able, finally, to ask my questions and feel heard.

You have likely participated in some way in my cancer story, if only as a reader of this blog, which has been, for me, a vital way to connect with a social network of folks who offer solace, wit and the critical factor of co-presence. To all of you, I need to say how very grateful I am that you have been strong enough and persistent enough to be part of my life in this strange time. With this new clarity concerning the present – my present body – I feel like I can finally take a big first step away from this grotesque disease that is cancer.

 

In Memoriam

Do you feel like you have a doppelganger? I do, and her name is Kathy Acker. For as long as I can recall, I have been fascinated by Acker. Kathy Acker, punk, queer, was an American novelist, taught at various universities, in addition to being an essay writer and porn performer. Like me, Acker sported lots of earrings and was fascinated with tattoos. Like me, Acker was 48 years of age when she was diagnosed with cancer in her right breast in April. Except that for Acker, it was April, 1996. Like me, Acker had a double mastectomy. Unlike me, Acker’s cancer had spread to her lymph nodes, and she declined chemo. About a year after her surgery, she died in an alternative treatment clinic in Tijuana.

Acker was a total French po-mo theory nerd. Acker embodied the radical performative. She wrote some incredible books. Since getting breast cancer, I have been meaning to learn more about Acker – to plumb the depths of my obsessive interest in this amazing woman. What do you know about her? Whatever it is, post it here. I will be eternally grateful.

And of course, if you don’t know anything about Kathy Acker, pretend like you could. I love the license plates in Quebec — “Je me souviens.” I always think that they perfectly represent a performative imperative that says something like, “Pretend that you remember.” In Quebec, you get to pretend that you remember a time when French was a respected and dominant language – mon pays. And so with Kathy Acker, this extraordinary bright light. Je me souviens. There are so many, like her, who must not be forgotten, even if to remember a time when she mattered entails a conjurer’s art.

 

Go Vote

“Law Mom” is a student and blogger living with breast cancer medical bills, going through chemo, and one of twenty finalists chosen for a scholarship that will afford her a college scholarship. Go read her blog, and consider voting for her to win this scholarship. It’s just a mouse click. You can vote up to midnight, October 28th. It’s better than shopping for a cure.

 

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.

 

 

Breast Cancer: New Thinking and New Therapies

I wouldn’t usually suggest that you “Go watch TV!”. But in this instance, Jacqueline, of Rebel1in8 blog fashionista fame, has participated in a really decent newsy documentary about breast cancer. Jac has the best line in the show – “I decided to look at my body as a different kind of architecture” – where she is talking about the decision to create a new line of clothing for a post-mastectomy and non-reconstruction body. Now that, is agency.

 

Diagnosis 2.0

“Patients with multifocal DCIS with microinvasion have a five-year actuarial disease-free survival of 78% compared to 98% in patients with simple DCIS.” Ductal Carcinoma In Situ of the Breast

I am the fourth woman diagnosed with breast cancer on my mother’s side of the family in the past thirty years. Both my great-grandmother and my grandmother’s sister died from metastatic invasive breast cancer. When cancer runs in families, it tends to show up earlier with each successive generation. My cousin was diagnosed with exactly the same cancer as me (multifocal DCIS, comedo carcinoma, Grade 3 with a focus of microinvasion), at precisely the same age as me (I’ll never tell).

My cousin had the same surgery as me (bilateral mastectomy), but unlike me, she did chemo and tomoxifin. My Rx post-surgery was “no further treatment”. I am getting a second opinion about my breast cancer case. If you’re an American, you may be shaking your head right now, and thinking, “What’s the big deal about a second opinion?” Well, in Canada, it’s not common to get a second opinion, and the medical system is not set up to facilitate getting a second opinion.

I have never been able to rest easy with the discrepancy between the finding of microinvasion at the time of my biopsy, and the lack of a finding of invasion in the pathology analysis after my mastectomy. There are multiple possibilities. It is possible that there was a single focus of microinvasion in the DCIS at the time of the biopsy, and that the biopsy itself removed that microinvasive section of cancer cells. It is also possible that the post-surgical pathology missed the invasive component. Another option is that the biopsy pathologist was mistaken about an invasive component. The difference matters, because there are implications for treatment.

The basic question that needs to be answered with a reasonable degree of confidence is, “Did the cancer (DCIS), prior to the surgery, already progress to the point where some of the various tumour segments included invasive cancer cells that could have travelled beyond the confines of the ducts?”

Certainty in this matter of the diagnosis is not on the cards, because all of the methods for the identification of the kind and grade of cancer cells, and the degree or not of invasion, involve probabilistic techniques. No pathologist has the time to look at every cell, nor does the technology to do so even exist. So what pathologists do is based on a cost/benefit ratio acceptable to most parties, that goes something like, “If I slice up the tissue and make slides that I examine carefully from ten or so of the possible thousands of slices, then I will have a representative sample of the total population of material that could be examined.” And there are disagreements, of course, to pile on to what statisticians call, “standard error of measurement”. So if your life depends on getting the correct answer, then adding a second look to the first opinion is a very solid place to begin to improve the accuracy of the total diagnostic picture.

I was very surprised when I asked my surgeon what was the consensus about the error rate for pathology analyses, and she nonchalantly ventured that the generally accepted error rate was about 10%. Imagine that your life depends on the accuracy of a given diagnosis, and that in ten percent of the cases, a second-look would reveal that the facts were actually different. There is a decent body of research on the rate of disagreement amongst pathologists, like this study, by Canadian oncologist, Dr. E. Rakovitch, of Sunnybrook Hospital in Toronto. If you saw the news reports about Stronach’s DCIS and mastectomy back in June, you will have seen Dr. Rakovitch interviewed in just about every report. Dr. Rakovitch’s research shows that when you get a dedicated breast pathologist to provide a second opinion on pathology slides, a significant percentage of errors show up from the first opinion, resulting in a change of treatment plans in many of the cases (29%).

I searched out a breast pathologist, and an expert oncologist who specializes in DCIS, and together, they have agreed to provide a second opinion. I am really glad that I followed my gut feeling about the complexities of my case, and my family history. I am incredibly grateful to the doctors who helped me to find the right people to provide the second opinion. I’ll know more when I meet with the oncologist in about ten days. I am really nervous about opening up the space of uncertainty again. However, in fact, the space has always been open. All I am doing is gathering more knowledge with which to interpret the various uncertainties.

After my visit with the new team, I’ll update you. When I know, you’ll know.

 

Shame On Me

Pink is definitely the colour of the month. It’s everywhere. This past weekend included intense bursts of retail therapy, which meant countless encounters with a stunning array of pink products. Pink is contagious. Many good incisive things have been written about what’s wrong with pink marketing strategies, and that’s not what’s on my mind today.

Every time that I walk into the local Safeway, I find myself scanning the pedagogical texts that everywhere litter the walls, windows, and space beside the cash register. The Breast Cancer Awareness campaign posters tell you what you can do to avoid getting breast cancer. Eating 5-10 servings of fruit and vegetables a day is bolded, presumably because that’s something you can do right then and there at Safeway. Spend money, buy a cure, get cancer off your mind right here, right now.

Much to my surprise, in the face of all this pedagogically-motivated reading material, I experience shame. Why, shame? Is it because, in realizing that I am not the intended reader of this material, I feel like I have already failed the test? It’s too late, for me. Which of the ten items on the list did I forget to complete? The text does not address me. It looks right past me. I am outside of the text – marginalia. But all of those are just paranoid readings of the text. It’s actually worse, perhaps. I am the perambulating object lesson, the embodiment of warning – a prognostic signifier for what can go wrong.

Eve Segwick has written some very smart things about shame and breast cancer in A Dialogue on Love, and observes that shame is most intensely experienced at moments where relationality with another is interrupted by estrangement – where the other, or the self as other and non-recognizable, literally seems an unexpected stranger. Shame, she writes, in Touching Feeling, “floods into being as a moment, a disruptive moment, in a circuit of identity-constituting identificatory communication. … In interrupting identification, shame too, makes identity.” (p. 37)

Shame, Sedgwick argues, is a peculiarly queer affective relation. And it is in relation to shame that Sedgwick’s distinction between paranoid and reparative readings is especially helpful. Writing of reparative readings, she suggests that “What we can best learn from such practices are, perhaps, the many ways selves and communities succeed in extracting sustenance from the objects of a culture – even of a culture whose avowed desire has often been not to sustain them. (p. 151)

Today, shame is on my mind. It colours my world, and it suffuses my sense of who I am. Or more to the point, who am I? That I am not quite sure is the genesis of this sense of shame, and the understanding that there is much to be learned here, in this awkward place.

 

Bad Days, Good Folks

I knew when I saw the pink t-shirt in my CIBC Run for the Cure bag that I wouldn’t be running the race. Yesterday was not a good day. My bag of t-shirts, identifying number tags and other race paraphernalia contained an extra t-shirt. A pink t-shirt. A survivor t-shirt. And I couldn’t go there. I couldn’t even look in the bag once I realized what was lurking there. I “earned” that pink t-shirt because I have an embodied relation to breast cancer that is recognized in this particular fashion. I am, in some way, symbolically aligned, now, with the motivational engine that runs the race – that makes the race run. No survivors, no race. And yet, I can not identify with the survivor emblem, nor the survivor discourse. I have written about this before.

It’s surprisingly hard, in this space, to tell a story that is not happy, or that doesn’t contain some generative moment of insight, or victory against ignorance, or fighting back against “the system”. I am very aware that you may not like this story, or that you may think it should have a different ending. Sometimes I think that blog entries should have ratings like movies do. This entry could be rated as, RA (Reading Avoidance advised): Theme or content may be excessively maudlin and introspective. May contain trite observations and narcissistic self-indulgence.

Yesterday was a sad day. It was a day of remembrance, and of mourning. I don’t know how to be a “partner with cancer”. I miss my old body. I miss the carefree relationship to my body that I had before cancer. Sure, it was often an unhealthy relation. As if immortal, I used to smoke, drink to excess, and ingest olive oil as if it were air. Cancer eats through fantasies of the displaced body. Cancer is really not sexy. And cancer makes happy places a lot harder to find and to sustain. I don’t need any extra burdens in the “look on the dark side of life” department, believe me! My life has always been a precarious race against anxiety, and now, I feel like I am dragging some enormous and unwieldy set of bags alongside me that I just can’t shake. I can’t talk my way out of this one.

Lots of good folks contacted me this morning to give me their CIBC Race for the Cure news. Thanks for that! Brandy’s Babes is the team I was registered to run with, and they had a really great time, despite the deluge of rain that blanketed Vancouver yesterday. And I heard from P/J who ran and fund-raised in my name, that they raised serious cash and were like gazelles from start to finish. My buddy S, in Regina, was led through a pre-race warm-up to the tune of “it’s raining men”, which, knowing S, he may have been hoping for. S ran on a 23-person team that raised lots of dough. WAY to GO!!!!

Thousands ran yesterday, and I was not amongst them.

 

What’s to Know?

Today’s newspaper headline was confusing and intriguing, “Don’t bother with breast examinations, cancer group tells women.” The Canadian Cancer Society has revised its policy on breast self-examination, following mounting evidence of the lack of efficacy of this practice. Just think about the hundreds of locations where the pedagogical imperative of this form of self-knowledge has been addressed to you. And likely as not, you have tried to follow its trajectory — the flattened hand firmly following the circular contours of the breast, unceasingly faced with the terrible difficulty of knowing how to think in this particular (dis)embodied relation to the self. What is it important to know, here? How is it supposed to feel? I always felt like I was doing it wrong, and like I couldn’t tell the difference between good and bad lumpiness. And now, research in the field of breast cancer has conclusively shown that sure enough, this was never a very useful way of coming to know the breast, or cancer. So what is worth knowing, here?

“Cancer”, the DCIS Info website tells you, “makes everything you know useless and everything you need to learn hard.” When I saw this, I felt an immediate sense of recognition that connects up with the anxious tenor of my struggles since finding out about my breast cancer in June. Cancer presents unique pedagogical challenges. How shall we think about “learning about” cancer? What’s to know? What would this learning look like? And who needs to learn, here, in this site of extraordinary risk, fear, boredom, shame, sadness, trauma and death?

Of course, there is a world of clinical facts about breast cancer. And it is absolutely the case that for most folks, gaining access to and mastering that knowledge is a very important element in a regime of care of the self. Being informed and knowledgeable can most definitely throw a wrench in the gears that power communicative relations with medical personnel of all stripes. It was, for me, and is for countless others, a really critical part of learning how to live post-diagnosis. However, this aspect of learning – clinical facts about cancer – while invaluable, seems relatively insignificant compared with the learning that is required to cope with the the deeper epistemological and ontological shifting of the very ground of life itself that cancer brings in its wake.

The other day, I hugged a friend who I hadn’t seen since before my mastectomy. Post-mastectomy hugs locate me in a wholly new relation to others’ bodies. My breasts are no longer there, in between, a buffer providing a safe measure of separation and distance in the embrace. She recoiled, visibly, from the intimacy of the exchange, which was, I suppose, too close for comfort. So many quotidian acts forever locate me in a relation of difference, both to myself, and others. How shall I know this new body? What’s to learn about its surfaces and contours? How shall I learn to metabolise the sadness? How to manage the constant reverberations of fear and anxiety?

I am very partial to the analysis of learning, not learning and the vicissitudes of learning that are the focus of Novel Education, by Deborah Britzman. In Britzman’s psychoanalytic account, we encounter “a literary knowing that reaches the recesses of one’s emotional world of learning for the purpose of representing emotional reality to the self and Other.” In this complex and multi-layered account of knowing, there are few pedagogical facts, free association is seldom free, and whereas learning is frequently sustained by the desire to contain anxiety, beginnings are almost always marked by incontinence and regressive desires.

It’s very hard to figure out how to tell people about cancer, and what to tell. That in itself will, at some point, need some good analysis. The overlap with telling and queerness is obvious. People can’t not know, but what can they know, and who can not know – what can they do with what they know, and what does it mean to know. All really crunchy and interesting to me, now.

 

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

 

Psychic Incontinence, or, Putting Women::Queer::Cancer on the Map

The very first day that I heard from my doctor that I had breast cancer, I Googled, “Queer Women with Breast Cancer”. I got nothing at all. No hits. You don’t get much with, “Queer Breast Cancer” either. I was surprised. I started this blog, in part, as a way of creating a formidable cluster of links in the sparse chain of significations that coalesce around Women::Queer::Cancer.

There has been a really cool discussion on the Comments page of a previous post, about relationships between being lesbian/straight, and the likelihood of breast reconstruction after mastectomy. What I think is really amazing and interesting in my journey through breast cancer world, is the collection of very brilliant and tough women of all sexualities who are queering cancer, and what it means to survive and thrive. There are lots of queer straight women and you/they are radically improving my quality of life by blogging your/their worlds.

So what does that mean, Women::Queer::Cancer?

Go and listen to S.L. Wisenberg, of the Cancer Bitch blog. Go take a look at Rebel1in8‘s Classic Rebel1in8 T-shirt . Go take a spin through the Assertive Cancer Patient‘s blog about the One-Breasted Woman Fashion Show. Hang out with Pocketina, at DIY, Not DIE. I could go on…

It’s my current obsession – to queer cancer. Eve Sedgwick, in Tendencies, notes that, “The word ‘queer’ itself means across—it comes from the Indo-European root twerkw, which also yields the German queer (traverse) [and] Latin torquere (to twist)” (xii). Queer typically yields a distinctively modificatory meaning, when inserted in front of a noun or verb, as in, Queer Cancer, that means, to distort, ruin, spoil or otherwise F*CK with cancer.

This is where my psychic incontinence becomes relevant, in case you were wondering about the obscure title of this post. Since my diagnosis, I have been coming undone. I am all over the place. I am, I could say, without being overly dramatic, in the midst of a breakdown. Now before you think you should pick up the phone and save me, I don’t mean that I am unable to cope with the tasks of everyday living. Yes, I have fed and walked the dog today. What I mean is that there is something so primal about the impact of breast cancer generally, and for me, a bilateral mastectomy in particular, that I am experiencing a fragmentation of identity and sense of self and the world. I am radically unsure of everything. I can’t contain my psychic unrest. To survive, then, as I traverse breast cancer, I must twist its conventional meanings and cultural significance. And so I blog. And I join the collective imagination of Women::Queer::Cancer. I spread myself across the world, social networks, the keyboard and the screen and everything in-between and elsewhere. Breast cancer is already something/somewhere/someone else.

 

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.

 

Pledge Support for Ovarian Cancer

Hey, talk about timely (relative to my most recent post). There’s an Ovarian Cancer walk tomorrow, Sunday, and you can make a pledge in case you can’t be there. I got an email about it today, which I am pasting here. And FYI the donation you make is tax deductible. The team mentioned here is in connection with Spike of the amazing Something Evil This Way Comes ovarian cancer blog.
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We walk on Sunday. Our team name is The Van Dykes, and Spike is team captain. This year we’ll be not only raising money for the cause, and thinking about Spike’s journey of recovery from cancer…

… we’ll also be walking in memory of our friend Marianna, who died this morning from Ovarian cancer. I have no words.

Please sponsor me, or any other walker, or join us in the walk.
https://secure.e2rm.com/registrant/StartUp.aspx?SID=1586365

More details below.

- Elaine

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You have been invited to pledge Elaine Miller in the 2007 Winners Walk of Hope. The Winners Walk of Hope is a remarkable event designed to create a sense of community for women living with ovarian cancer and their family and friends. It’s a day filled with hope and support, creating a greater awareness around ovarian cancer.

Secure online donations can be made with your credit card and an official charitable tax receipt will be sent to you by email within five minutes! You can make an online donation now:

https://secure.e2rm.com/registrant/StartUp.aspx?SID=1586365

To date, the Winners Walk of Hope has raised over $2-million, providing the opportunity to strengthen support, education and awareness programs across Canada while funding research initiatives. For more information on Ovarian Cancer Canada’s many programs, please visit www.ovariancanada.org

For more information about the 2007 Winners Walk of Hope, or to join us on Sunday September 9, 2007 at 9am, please visit www.winnerswalkofhope.ca

Thank you for your generous support!

 

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…

 

Lost

Twice in the past week I have lost my car keys, and not just anywhere. I have lost my car keys at the house of a close friend. Hmmmmm. As Janice said after it happened the first time, “Freud would have something to say about that.” I am sure he would. I scoffed the first time she said it (silently, of course). But whenever a deeper, and likely embarrassing meaning looms over a seemingly inconsequential action, I am instantly overwhelmed with a sense of dread that likely, Freud – read, the deeper meaning – would actually be the correct interpretation. I feel as if the curtain has been drawn aside, the pants drop to the floor — whatever the cheap metaphor, you get the drift. The truth has been revealed, and it cuts to the bone. So what is the truth, here? Do I want to hand the keys over to someone I trust? Am I perhaps not ready to grasp the wheel and embrace freedom? That would hardly be a radical theory to posit at this point in my “healing process”. Suffice it to say that this is a time of deep transition. In the breast cancer books, of which I have far too many, they talk about it as learning to live with “the new normal”. I wonder if that’s harder for me because there is no “old normal” to fall back on?

 

Black Holes and Time Machines

This past week, of, as you likely noticed, total inactivity on the blog, I revisited a wonderful chunk of land on Galiano Island that I used to call, home. And Janice and I also went to Seattle for two blissful days of immense fun in the BIG city to the south complete with lots of retail therapy, waxing (I will say more, later), power walking, and unrepentant dining in fabulous restaurants. It’s hard to imagine anything more splendid after a July and August from hell, especially as we slide towards the terrain of the unmentionable (school starts anew)!!!

The land on Galiano is very sunny and stretches langourously across a fertile valley with lots of fruit trees and berry bushes. Our host, Sz, provided lots of work-fun chores, like picking apples that had fallen from the trees and needed to be redistributed outside of the deer fencing to feed the local deer population. I also picked copious quantities of blackberries and made a delicious berry-peach sauce for the vanilla ice cream that appeared after dinner one night. All I can say is that nothing tastes better than that fresh berry sauce. Nothing. We hiked, walked by the ocean at Montague Bay, which is stunningly beautiful, read for hours uninterrupted (OMG, I had forgotten just how good that is), didn’t check email or surf, bumped into old Island friends and got updated on the local gossip… Good shit.

I noticed several things about myself over this 7-day period that seem worthy of mention. And it’s all about the BC/AC phenomenon. Yes. That would be, Before Cancer and After Cancer. I am not at all sure that, After Cancer is the right moniker, since in fact, there probably is no after to cancer’s ubiquitous death grip on life, but you know what I mean, here. I just mean, after the tumultous period of active treatment.

So my AC self is unsure of herself on some fundamental level in social situations. Now if you know me, you could say, “Oh come on Mary. That’s nothing new.” Aren’t friends great!!! Yes, I have never been a social butterfly who glides effortlessly around the room blabbing. Ok. I know that. But I am dealing at present with a whole new kind of social malaise that has something to do with the fundamental ontological gap between me and folks who have not lived with cancer. We inhabit different worlds, you and me. And I am not sure how to cross that barrier. Maybe it’s the newness of the trauma. But I do know that I am currently metabolising something that feels like a species of “recognition failure”. That is to say, I am not sure who I am, AC, nor how it is that I would like you to recognize me in this transformed state. There is something fundamentally different and distinctive about life AC that I need you to know about and to acknowledge, and I just don’t yet know how to tell you what it is. Fuck that’s vague. But it’s the best I can do, today. And like I know that it matters that I’m queer, I know that it makes a critical difference that my life has been forever altered by cancer. That I have lost body parts to cancer is just the starting point of a discussion about transformation. And contrary to some others who write about cancer, I don’t choose to frame any of this discussion of change in positive, life-enhancing discourse (cancer, the gift).

The second thing that I have noticed about myself is that I experience sudden, intense, almost random bouts of terror. Susan Sontag, writing about her breast cancer experience, put it like this:

“Panic. Animal terror. I found myself doing very primitive sorts of things, like sleeping with the light on the first couple of months. I was afraid of the dark. You really do feel as though you’re looking into that black hole.” Susan Sontag, Illness as Metaphor

The terror produces a kind of epistemic and locational vertigo. There is no solid ground under my feet and that most solid of cartographic indices, time, is spinning out of control like the needle of a compass under a magnet. My entire relation to time has been altered. I think it may have something to do with the peculiar use of time that prevails in cancer discourse where prognostic indicators and treatment effects are only every reported in Disease Free years and Percentage Survivors after X number of years. If you read much cancer discourse, you assimilate thousands upon thousands of estimates of Cancer Time – how many lived or how many years might you expect to live. It’s very weird. I blogged about this shortly after the mastectomy, in Living in Prognosis. This is the least read entry in this blog, btw, which I think is strange because it is one of the best written, IMHO.

 

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.

 

Life, Hope, Gifts…

Back in July, Brenda from Saskatchewan sent me a lovely story about how she got new pots and planted flowers in my name, thinking about my challenges and wishing them to grow and be healthy. Well I heard from Brenda today, with a story about a big storm and how lots of blossoms fell off the totemic plants, but how they then weathered the storm and had come back full force. I think that’s brilliant. I think it’s an amazing gift to me from someone I barely know, who I met at my brother and Marg’s wedding. I am very moved. It actually gets right into my marrow and makes me feel so much hope and compassion for others. So thanks to you, Brenda, and to everyone out there who has reached out to give me something – a kind word, an email, a blog comment, a phone call, a visit, a book, a bottle of Maalox when I was in the hospital and felt like my stomach was going to implode, a couple of boxes of Earl Gray tea when all there was to drink in the hospital was no-name…. You get the drift. It would be a VERY long list.

 

And the Beat Goes On…

So for about a week or so, which means more than just my time — the microworld within which I live and lean on folks and am connected up with — a huge stressor was the unexpected discovery, via my gyne/onco surgeon, about the elevated level of a key breast cancer tumour marker (CA 15-3). And true to form, since my breast/onco surgeon was out of town and I couldn’t just check this information out with her right away, I learned everything there is to know about this tumour marker and just how bad my prognosis looked, and nearly drove myself (and others) into an early grave.

Well, today my breast cancer surgeon was back in town and saw me this morning and let me know that the other folks made a simple reading error, and that in fact, the pre-op tumour markers were NORMAL. Get that? Got your pencil out and at the ready? Normal.

False alarm. That will teach me about the perils of reading.

If you are one of the folks that I bombarded with this stuff, well, I am sorry it was so scary, but I didn’t make any of it up, and fuck, life with cancer is scary anyway. But I am sorry it was quite SO scary unnecessarily.

 

Fear

I was just looking at my blog tag count and noticed that Fear is the single most frequently used tag in my blog entries about my various entanglements with cancer this summer-that-has-not-been-a-summer-at-all. My life is organized around fear these days, which is an incredible shift — like, a tectonic alteration of my previously known self. I dunno when or if that will change.

My friend Spike, who has an amazing blog, Something Evil This Way Comes, wrote recently about the havoc wrought by cancer in her life, and about the terror that is omnipresent and fucking awful. Personally, it reminds me of the impact of the Dementors in the Harry Potter novels — evil forces that suck life out of you, just for the hell of it.

The terror today focused on making a plan to leave town. So far this summer-that-has-not-been-a-summer-at-all, I have made plans three times to leave town, complete with air tickets, hotel reservations and so on, only to have everything dashed to the ground in the face of yet another medical meltdown, Katrina style, bearing down on my life. And today, all I was doing was trying to bring myself to make a ferry booking to Galiano. Now that’s a far cry from what had been my summer travel destinations, like Amsterdam and the Napa Valley.

But I feel jinxed. And it’s not going away. I also feel incredibly vulnerable in a whole new way that I don’t even begin to know how to metabolise.  Yeah I know — I can go to a therapist and yak yak yak about all of this, and hear some sage advice about what I have survived thus far, and taking things one step at a time and all that good stuff. But the fact remains. My life as I knew it is over. And this is a new post-resilient self. Too bad there is no post-cancer self. I hate what I have lost — that sense that the biggest challenge to getting out of town is finding a place to board the Loki dog, and not thinking too much about what it will all cost.

I did, though, book the car onto the Galiano ferry. And I also bought a yoga mat and some cute yoga shorts for my new healthy lifestyle. Retail therapy continues to be the most effective intervention in my personal health program to-date. And I may even book a couple of nights in Seattle for next week. WOW. How to think big. If you’ve ever read anything REALLY cool about fear and how to wrestle this nasty beastie to the ground, or can think of a really good movie I should watch, let me know. I am ready to let go, I just don’t know how — YET

Love you guys — special thanks to all who have messaged me in this mayhem, or intervened directly to take a load off my mind, distract me, amuse me, or what-evah. And comment if you have been lurking. In case you haven’t got the punchline here, life is short. Speak up!!!

 

Death by Numbers, or, the Patient From Hell

“We found that elevated pre-operative serum marker values were correlated with early replapse and death from disease. Possibly, the release of tumour associated antigens at the time of diagnosis proves blood supply respectively vascularization of the tumour and by consequence the possibility of already existing micrometastases and bad prognosis from the beginning.” F. Ebeling et a;. (2002). Serum CEA and CA 15-3 as prognostic factors in primary breast cancer. British Journal of Cencer, 1217-1222.

I am reading a really cool book at the moment — The Patient from Hell, by Stephen Schneider, a professor of Biological Science at Stanford who has documented his extraordinary and highly atypical strategies for informing himself at an expert level about a rare form of cancer, and using that knowledge effectively to significantly alter his medical care. Some days I try to be the patient from hell. I read all the information in my medical charts. I follow up by reading articles in the medical journals. I formulate questions based on my research and try my best to articulate a reasonable dialogue with doctors. It kind of works, sometimes. And it often falls flat. Schneider’s characterization of medical reasoning helps to shed light on several key factors that explain why it fails. Basically, doctors are trained to follow particular protocols, and a line of reasoning that isolates one or two findings in an If, Then logic. Add to the deficiencies in reasoning produced by this kind of linear thinking is the simple but devastating impact of economics on medical protocols. The kind of care you get is based on a cost-benefit analysis that is modeled on whole populations. There are particular shortcomings to this form of reasoning. Like, that it could kill you.

I have not been able to rest easy with my breast cancer surgeon’s decision that I should not see an oncologist following my mastectomy, and in the same vein, that I should not have any form of adjuvant therapy (like Tamoxifen, or radiation, or chemo). I am not comfortable with the biopsy finding of micro-invasion. That tells me that cancer cells could well have escaped the confines of the ducts. Yesterday, a new piece of information on my diagnostic profile blew me away — the micro-bomb. I was being a good “patient from hell” and reading my chart while waiting for my family doctor. I learned in a letter from my initial gyne surgeon consult to the internal medicine doctor who was in charge of my case while I was resident at UBC Hospital, that at the time of my breast cancer diagnosis, my CA 15-3 cancer marker was elevated, whereas it had significantly decreased post-operatively. My breast cancer surgeon had never disclosed the fact that CA 15-3 was elevated at diagnosis. And the implications are chilling.

CA 15-3 is one of the “tumour marker” blood tests that are typically done at the time of diagnosis. CA 15-3 is a cancer antigen – a protein that is shed by breast cancer cells. There is a lot of research on the prognostic value of levels of pre- and post-operative CA 15-3, and it’s not at all good news, in my case. A 2002 study reported in the British Journal of Cancer by Ebeling and his colleagues shows that amongst early breast cancer patients, “elevated pre-operative serum marker values were correlated with early relapse and death from disease.” Shering and colleagues (2000) report that amongst early stage breast cancer patients, “the probability of disease free survival at 5 years was 44% in patients with high CA 15-3 levels compared with 65% in patients with low CA 15-3 levels”. YIKES!!!

I know as a somewhat educated (in this domain) person that it would be erroneous to make huge assumptions based on one test result, but imagine not having known this upon making the decision to pursue no adjuvant therapy for breast cancer. It sure doesn’t make sense to me. Now what? Arrange for a second opinion, collect up copies of all the test scores, make a list of the key questions, go back into cancer world, keep fingers crossed, and so on, and so on… That’s my hope — to be another patient from hell who survives and thrives.

 

Post Treatment Blues

A big hello to all the kind folks who have read and commented on my blog over this summer from HELL. I have been very reluctant to write anything in this space for the past week or so because I am basically very depressed, tired and frustrated with the multiple chronic health problems scenario — layered on top of cancer — that now defines the grain of my everyday life. There is, also, a very common period of intense depression, anxiety and mourning that follows closely on the heels of aggressive treatment — like, oh, maybe, two surgeries in a period of 5 weeks. The pyscho-babble folks call it, Post Treatment Blues. Basically, your soul catches up with the realities that have befallen your body that the very intensely helpful trick of DENIAL has been pushing off to the side so that you could actually withstand treatment. Then you crash. And there is nothing interesting or sexy about this struggle. It’s just brutal.

My gastrointestinal system has been decimated with pills and drugs over the past two months, including about three weeks all together of opiates, eleven days of intravenous antibiotics and countless other shit. Acid billows up into the back of my throat constantly, making me cough and go hoarse and nothing I do stems the flow. Then there’s the diverticular disease they found when I went into the hospital a couple of weeks ago. There is almost nothing left that is safe for me to eat between diverticulitis and GERD (reflux). And if I don’t keep the diverticulitis under control, the only option will be a very nasty and risky bowel resection surgery. I don’t actually even know how to think my way through ever going on vacation again under these circumstances, or even how to get on a plane and go to a conference. Then there’s the breast seroma from the mastectomy that has not resolved. I could go on… See what I mean. There’s nothing interesting about this at all and I can’t figure out how to write about anything else because dealing with all of this is the sum total of my daily life.

Blogs are odd public spaces. Maybe I am from the wrong generation to feel entirely comfortable to put the minute details of my struggle out into the airwaves. Or maybe I am just worried that it could seem like a passive aggressive call for help, or for encouragement.

I need, if only, to figure out what the hell I am living for other than to cope with personal health catastrophic failure.

 

When Pain Overstays its Welcome

A couple of really good friends came to visit yesterday, and I was really bowled over by my attachment to their invocations of a future (our camping trip next summer) where my life might be organized outside of the institutions of acute medical care. Last week, while still resident in the hospital and having been give the “gift of life” that is more commonly known as, a “day pass”, I actually referred to the place as “home” — ACK… “Well I should be home by 5…” just slipped out. Fait accompli, I had migrated my place-making antennae to a new location and it had insinuated itself in my unconscious as the “nouveau” home.

I can’t rest easy, yet. That’s the problem. I don’t know who owns this f*cked up body, but surely its only home could be in a hospital, and here I am actually at home, and I don’t feel like I belong t/here. One of the not so secret characters in this tragedy that has few comic overtones is Pain. I will capitalize Pain because it does not, or at least, has not, gone away. Like a voice, Pain has a sonorous tone, timbre, inflection and even addressivity. Pain reminds me that something evil lurks beneath the surface that might as easily, yet again, launch me over into the hospital zone. Pain put me there in the first instance. Pain could put me back. Some days, my pain flickers like a diminutive candle and almost promises to make an exit stage left. And then it returns.

And so, yesterday, when C/J and Janice and I were chatting about a possible trip to Quadra, Pain was the uninvited guest at the party whose apparent sole function was to undermine my confidence that I could ever safely leave Vancouver again. It’s insidious. And at the same time, I just want to throw my arms around the folks who, like C/J, enthusiastically are insisting on holding me inside of the circle of possibilities, joy, exuberance and futurity.

 

Can you come home, again?

I am home, again. “What’s home got to do with it?” ask Biddy Martin and Chandra Talpady Mohanty, a brilliant feminist, critical race theory duo. Good question. Can you come home, again? I am uneasy and remain in what I think of as, “Code Blue” mode. High alert. What could go wrong, will go wrong. Can you rest easy? Can you ever relax again? Can you trust your body? Martin and Mohanty ask us to question the politics of comfort and of some idealised notion of origin connected with the construct of “home”. This is hardly relevant to my present situation, where surely, after having endured two major surgeries in 5 weeks, and two encounters with the “medical cancer complex”, I can presumably afford to “take it easy”. I can let go, right? I suppose that just one of the tasks at-hand is to relearn a relationship to my body as something other than a disaster area – a site of catastrophic failure.

Perhaps I should start with the good news. I spent 11 days in the hospital awaiting surgery that quickly escalated into a scenario where ovarian cancer was high on the list of possibles and ended up with a more or less clean bill of health and a much less drastic surgery. Or perhaps I should relay an adequate account of the events of the past 11 days spent in two of Vancouver’s hospitals and dispersed across a veritable phalynx of doctors, surgeons, nurses, caregivers, friends, family and others. It’s hard to know where to start with this new episode. “Another chapter for the book” was my maternal grandmother’s favorite phrase deployed in order to decompress a tragic event and re/present it as simply another event in a busy life. Maybe that is how I should think about the recent spate of unfortunate events – another chapter for the book.

How about a simple chronology of events, as a way to begin.

July 3 Bilateral Mastectomy

July 20 Follow-up appointment at BC Cancer Agency for mastectomy, where unexpectedly, I run into my gyne oncology doctor, Dr. M, in the hallway – I had gone to see Dr. M for many years of colposcopic examinations of the cervix as a monitoring procedure because my mother had been given DES when she was pregnant with me, and DES daughters have a high risk for cervical cancer.

July 21 Notice left ovary pain for the first time

July 27 Left ovary pain has been increasing all week, so I call my GP, who recommends that I go to UBC Hospital Urgent Care in case it is a ruptured cyst. UBC Urgent Care is amazing – great doctors and diagnostic technologies. I get a CT scan and it shows a huge left ovarian complex cyst (10.5 by 8.6 cm, or grapefruit size) as well as a diverticular attack in the colon. I get a couple of prescriptions for antibiotics and leave expecting to consult back with my GP about the cyst. The pain gets worse over the next two days, as well as omnipresent nausea.

July 29 I go back to Urgent Care because I am feeling extraordinarily awful. The cyst pain is not getting better and the nausea is considerably worse. The doctor who is on-call in the Hospital recommends admitting me. I think that she is unusually kind and attentive because she is a school buddy of my friend B, who accompanied me back to Urgent Care. Dr. C is very concerned about the shape of the cyst (irregular/complex) and the link between ovarian and breast cancers. There is much talk about how to get in to see a surgeon about the cyst sooner than later. The tone, it is impossible not to notice, is getting that dire quality that stretches itself over the scenario like a taut netting. It’s disconcerting. My gown is not coming off this time. I am being wheeled into a hospital room. I have a tag on my wrist. I am here to stay.

July 29-August 6 I am resident at UBC Hospital where the amazing Dr. P tries every known combination of pain and anti-nausea medication to control my symptoms. He is one of many incredibly kind people who treat me during this period. Exactly as in the breast chronology, three days later I am let out of the hospital for a few hours to go to VGH to see the gyne oncological surgeon, Dr. McA. She is no nonsense about it all and schedules me for surgery August 7. The senior surgeon who will be overseeing the operation is my gyne oncology doc who I had run into at BC Cancer Agency, Dr. M. I really like Dr. M. I can’t believe that I am heading into another surgery where cancer is the overly determined backdrop.

August 6 I am transferred from UBC Hospital to VGH. I am on the gyne oncology surgery ward. It’s a very serious place. The nurses are very matter of fact about everything and not at all — what’s the right word here — kind? They do their job competently and don’t actually want to know how you are doing, when they ask “How are you?”. I have an amazing team of friends who come to visit from morning until night. They make me laugh. They go out and get broth and jello when the cafeteria brings the wrong meal and I am not allowed to eat anything but fluids. They push for me to get medication when the pre-surgical bowel prep meds I had been given created an explosive reflux problem that was burning a big hole in my throat. They give me hugs and take funny pictures with cell phones. My friends cradled me with love and care. The evening of August 6 the surgical resident, Dr. S, came to talk to me about the surgery scheduled for the next day. The dialogue was surreal. She walked me through a procedure where the surgeon biopsies the cyst and sends a frozen section to pathology for immediate diagnostics. While they wait for pathology’s response, the surgeon would remove my pelvic lymph nodes on both sides. OMG. At this point in the description of the forthcoming events I was freaking out. WHAT?!? Why start harvesting body parts before they even know whether or not the cyst is malignant? I start playing “Let’s reorganize this surgery” with the resident. How about they wait until they find out about the frozen section before they begin organ removal? I am emphatic that I must now revize the Surgical Consent Form. Sanity is disintegrating all around me even as I very rationally talk about the procedure with the resident, who reassures me that Dr. M will visit me before the surgery tomorrow and that I can “discuss this” with her. F*CK.

August 7 My surgery is supposed to be at 2pm. It’s a long day. I haven’t eaten now for 48 hours. Dr. M did come and see me and agreed to hold off on removing body parts until seeing the results of the pathology. I am feeling a little more confident. I am also terrified. I have a lot of pre-surgical angst. Just before they wheel me into pre-op a nurse comes in and tells me that the medical student has ordered an anti-coagulant shot. I can’t believe my ears. Who the heck would expect a shot of anti-coagulant just before an operation. I imagine bleeding to death on the operating table just because I foolishly agreed to a shot ordered in error by a fledgling doctor. So despite my intense desire to be a “good patient” I refuse the shot. Down in pre-op the nurse there tells someone else that I had “refused” the Heparin. I try to locate a doctor who can tell me whether or not I should actually be getting the shot. Everyone asks me the same litany of questions about allergies as if no one person shares their information with another and there is no central record keeping. It’s a zoo. We wait. And we wait some more. And my pain level increases intolerably because I have had no pain meds for hours now. There is someone else in pre-op also scheduled for the gyne oncology team, who I have come to think of as the “Dream Team”. And at 2:30, my time, the other person gets wheeled in. Dr. M tells me I might not have my surgery today if the other procedure takes too long. And we wait some more. I meet my anaesthetist, who turns out to be the same wonderful guy who was my angel of sleep for the mastectomy, Dr. B. How weird is that? Two surgeries within 5 weeks, and I get the same brilliant and kind anaesthetist, who goes to great pains (ha ha) to clarify for me the critical difference between “anaesthetist” and “anaesthesiologist”. Cool. Dr. M shows up and it’s time to wheel me into surgery at about 5pm. I try to chat with the OR folks for as long as I can to put off the “procedure”. I hate the”going to sleep” part of it all, cuz the “waking up part” is too soon after that moment, and then, the pain comes.

But wake up I do, and as soon as I can focus, look down to my abdomen to see what kind of incision I have — laparoscopic (maybe not cancer) or vertical abdominal (cancer for sure, all parts out). WOW. It’s laparoscopic — just three sections of steristrips. A nurse comes by. Someone tells me that they didn’t take out anything other than the cyst, which they think is benign. Only the pathology report will confirm this critical detail, but apparently with cysts, appearance is a reliable diagnostic tool. They didn’t even bother sending off a frozen section to pathology during the procedure. And it wasn’t, in the end, an ovarian cyst either. A fallopian tube became walled off and cystic, and expanded to grapefruit size. The sheer weight of the cyst and the fact that it became separated from the ovary and was swinging around and pressing on my colon and bladder is what had produced all the pre-op pain.

My friend P asked me if I “felt like I dodged the cancer bullet for the second time”. And oddly, I don’t. Maybe I should feel “lucky”. Perhaps in time all of this will settle somewhere, and might exist as some version of my grandmother’s “other chapter for the book”. But for now, I just want to feel the comfort of being “at home” – at home in my own body, in my domestic space, in the world. And once again, I am bowled over by the kindness of strangers — all the amazing people in the medical institutions that I travelled through who went out of their way to be helpful and empathetic — and by the kindness and generosity of friends and colleagues. SO much love.

 

Life stuff…

Since I want to enjoy the sun and my family today, this entry will have just the basics with no frills, no theory, and no clever commentary. So I haven’t updated my blog because for a week now, I have been in hospital. Yeah, I know. It’s f*cking unbelievable. But that’s also just the way it is. I am currently at home for a few hours on a day pass. Like a good inmate. Then, back to the institution. A week ago I ended up at the ER because I had been trying unsuccessfully to cope with intense abdominal pain for about a week. Something sure wasn’t feeling right. And it turns out that is because I am sharing my abdomen with a 10.5 by 8.4 cm mass on my left ovary, and maybe a diverticular attack as a chaser. The higher risk factor that I now carry for ovarian cancer pushed me to the top of the list, more or less, and I have been fast-tracked for surgery on Tuesday, Aug. 6. I know and like the surgeon who will be operating Tuesday. She may elect to take what few bits are left out (both ovaries and fallopian tubes), or I may just lose the mass and one ovary. It all depends what has chosen to take over my body. Many of you have helped to pass this time joyfully and have been incredibly supportive. I love all of you, whether you are one of those folks or not. People in the hospital have been extraordinarily kind. I am terrified and also not alone, so it’s almost bearable. I will have more to say when I get back. That’s a good motto I guess — yeah — more to say when I get back…

 

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!

 

The Cost of Living and the Return of the Repressed

“My intellectual work, I now know, is an outgrowth of the life I’ve led. It has transformed whatever traumas I’ve survived into something useful for myself, and I hope, for others. My work has changed my life. My life has changed my work. … I know that my work must be accomplished in the face of uncertainty and chaos, when instability threatens to engulf me, to spin me out of control, for only then will I achieve a clarity of vision that comes when I try to integrate my life’s work with my life. … Now, and not later, I will try to understand.” Louise deSalvo, Vertigo

Why am I continuing to write this blog now that my terrifying “really bad brush with breast cancer story” has come to a happy ending? Perhaps I should stop writing. But I am not ready to stop writing about this – either my own experience, or what I have learned about the terrifying “facts” of breast cancer and the not unrelated gruesome details of the pink politics of breast cancer cash, the cancerocracy, and the misuse of breast cancer by major corporations to brand their products to the boomer generation with those fucking ribbons.

Breast cancer does not ever disappear, nor is it “cured.” And we are living in the midst of an epidemic of breast cancer. Cancer’s return overshadows life itself. Yesterday a friend sent me an article about the relationship between daily consumption of vegetables and “cancer’s return.” What blew me away about the article is not that an excess of vegetable consumption is unrelated to breast cancer survival, but that within time elapsed in the five-year study, a whopping 10% of the study participants had died – and these were “women who had been treated successfully for early-stage breast cancer.” Holy shit. 10% of early-stage, success stories of breast cancer treatment have died after five years, and we are supposed to be thinking about vegetable consumption? What is wrong with this picture?

All I can think about when I wake up is – it just takes one rogue cell — yeah I know that I am not being the compliant happy heroic figure of my own tragedy. But that is all it takes for metastatic cancer to set up shop in the other places breast cancer likes to live – about 25% ea for bones, lungs, liver and brain. And my life, or at least prognostically speaking, hangs on the competence of the guy who reviewed my pathology specimens. And they don’t look at it all, of course. They just look at slices.

That’s the thing about cancer. Well, one of the things. It’s never over. No sooner do they tell you about the pathology report, then in the next breath is information about recurrence.

I wish I could be more cheerful today and celebrate the happy news about my pathology report. I am supposed to feel like I have been handed my fresh new identity card for a “second life”. But actually, there is no second life. There is just this life. And I have work to do, now, with this life that I inhabit. And so I will keep writing. I will write to save my life — as if writing might save this life. As deSalvo articulates so beautifully, “Now, and not later, I will try to understand.”

 

Full Circle, Kind of…

Deena Metzger, Tree, Photograph by Hella Hammid17″ x 24″ black and white poster designed by Sheila Levrant de Bretteville.

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Includes the verse: I am no longer afraid of mirrors where I see the sign of the amazon, the one who shoots arrows.
There was a fine red line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart.I started this blog not so very long ago with the story of a woman I loved, and a poster on her wall of a post-mastectomy woman (Deena Metzger) with an amazing tattoo. Well, I found that image today – yes, today – even though I have been looking for it unsuccessfully for weeks. And today I found out from my pathology report, again, unexpectedly, that I am prognostically-speaking, cancer free and that my treatment has come to an end. Yeah I know, it’s really weird. I have not exactly adjusted to the news yet. But it’s amazing and real.

Think about the symmetry here — I get a tattoo on my chest in the late 1980′s to mourn the death from cancer of a woman I loved. I get this tattoo on my chest because of the post-mastectomy tattoo in the poster by Deena Metzger on Ange’s bedroom wall. And then like Deena Metzger, I get breast cancer, and that tattoo gets redrawn. And in the most unlikely turn of events, (a) the surgeon decides to save my tattoo, which looks virtually the same as before my mastectomy, and (b) I get a clean bill of health in the pathology report. And then life starts again. Hope you weren’t sleeping at the wheel. Ha ha.

I had to go to the surgeon’s office five days prior to what was supposed to be the unveiling of the post-surgical pathology report because I have developed a very common complication following a mastectomy – a fluid build-up that the body can’t drain in the space where the left breast was, which is known as a seroma. So, in we go to visit Dr. C and get the seroma aspirated. Back to the scary place at the hospital. The wonderful R, Dr C’s nurse, mentioned quite casually when we arrived that she had received the pathology report and so would be cancelling the planned follow-up on Friday. YIKES. I had kind of anticipated that the report might be there and so had figured out a preliminary set of questions for Dr C — questions about chemotherapy, radiation and hormone therapy — but I SO wasn’t actually ready to hear the news.

Ready or not, there was Dr C and in we went. She had the report in her hand and I can’t likely ever adequately convey the state of stark dread with which I was anticipating the information about the post-mastectomy pathology. “Well it doesn’t get any better than this.” is how Dr C began the conversation.

The pathology report was as follows: No invasive cancer beyond the DCIS in the ducts. No cancerous cells in the lymphs that had been removed for the sentinel node biopsy. Clear margins.

The bottom line from this kind of report is that any systemic treatment would have a higher probability of causing harm than the probability of stray cells going metastatic. End of treatment.

My reaction to all this has been disbelief and disorientation. I had so thoroughly prepared myself for systemic treatment that I am not sure how to reorient myself to no treatment at all. That’s ok. It probably is totally predictable.

I will have to keep going back to the surgeon’s office to get the seroma aspirated until it stops filling up again. But apart from that, I can now get on with the business of recreating my life, again.

I will have more to say about all this, but I wanted to post something as soon as I heard to get the word out. I don’t quite know how to thank all of you for your support. So for know, let me just say that I am incredibly moved and very grateful. You have been very kind and very courageous to step into this awful place with me and hold my hand.

 

the “Good Enough” Friend…

This is a pic of me n Janice yesterday. Janice is the best gf on the planet. It’s that simple, folks. Janice and Stuart took me out to celebrate the removal of the drains. They windsurfed with the incomparable pedagogical assistance of Dr. JB. My friend B came along, and D and B from work were there too. Kewl. We drank beer – I drank a LOT of beer. I even called Sz when we got home and made her talk to me despite the fact that I was quite plastered and incomprehensible.  My friend D told me that my chest was “flat as a board, girlfriend”. And boy howdy is he ever right. It is flat as a board. Which is kind of ok. I wasn’t offended. The afternoon was almost normal. What a concept. I have never aspired to “normal” but yesterday, normal was quite the accomplishment. I love my friends. It’s that simple. Yay you!!!!

So how do friendships survive the exceptional stress of cancer? In the short time that I have been living with cancer, I have been hyper aware of: (a) the difficulty of talking with friends about cancer, (b) negotiating the terrain of friendship, and (c) transforming and recasting the shape and the content of relationships given the requirements imposed by this bizarre, terrifying and intensely weird condition in which I have found myself.

I really like British psychoanalyst DW Winnicott’s construct of the “good enough” mother. The loving caregiver, according to Winnicott, creates a holding space for the child that takes her own inevitable failure into account. The “good enough” mother trusts the child to be able to hold herself together across the necessary space of Otherness that separates them one from the other. And the same could be said of friends.

My encounters with cancer have cast a very bright and somewhat brutal light on my friendships and it is only the relationships that are good enough that will endure here, in this harsh and unforgiving climate. So what is a good enough friend? I think that on the whole, those folks who trust themselves, and me, enough to bear witness to what is happening and who can freely acknowledge their own fears and discomforts around cancer, extreme surgery and the like — those are the relationships that are withstanding this extraordinary time.

The good enough friend knows that s/he can’t take my cancer away, and also that I am going to be afraid, in pain and discomfort, and that I will have to endure a hell of a lot of institutionally defined practices and settings – doctor’s offices, tests, the Cancer Agency and on and on and on — spaces of governmentality to which I have a particularly well honed allergy. S/he knows that s/he can’t step into this situation and make it all better. At the same time, there s/he is, going through the experience with me, laughing about it, asking questions, and basically, not pretending that “all’s well that ends well in the best of all possible worlds”.

I love the folks who phone me up and pepper me with questions because they have been reading about breast cancer, or thinking about something I said the other day about my diagnosis, or they are really afraid about something that they don’t understand and they just want to clear up a misunderstanding. I think it’s awesome when someone volunteers to go with me to something really gross and freaky, like when I had to have radioactive dye injected into one breast and it hurt like hell and I knew it was going to hurt ahead of time so I was unusually freaked out.

When I told one of my neighbours, J, about the cancer, she just cried with me and didn’t say a whole hell of a lot, except that she would bring me meals. We both cried, and then we were laughing about how finally I would be able to get rid of all those bras that I can’t stand to wear, and we were done. For that time, that day.

The good enough friend is tough enough to hear what something is actually like without feeling the need to alter my narrative to fit her own tolerance for pain and discomfort. When s/he asks me how I am doing, s/he wants to know, really, how things are going, knowing full well that they may not be going well at all.

Some people can’t bear to hear the truth and they have really well honed defenses against reality. One of the people I know couldn’t come to visit without bringing her girlfriend along to act as a buffer. Someone else in my social network hasn’t talked to me once since the diagnosis, and will only phone my girlfriend, so that he never has to actually talk to me. Other folks immediately proffer advice as a way of fending off the intrusion of the immediate and the Real.

It’s hard to sustain a good enough friendship under these conditions. It’s going to be a fragile enterprise. There will be system failures, bugs and crashes. Inevitable failure — that is Winnicott’s contribution to our understanding of how to give care. And it is an amazing thing to navigate the seas of life in this storm of incalculable risk and disorientation and to see how incredibly courageous people can be, and how very generous and kind. That’s good enough for me.

 

the Gift

“If there is gift, the given of the gift (that which one gives, that which is given, the gift as given thing or as act of donation) must not come back to the giving (let us not already say to the subject, to the donor). It must not circulate, it must not be exchanged, it must not in any case be exhausted, as a gift, by the process of exchange, by the movement of circulation of the circle in the form of return to the point of departure. If the figure of the circle is essential to economics, the gift must remain aneconomic. Not that it remains foreign to the circle, but it must keep a relation of foreignness to the circle, a relation without relation of familiar foreignness. It is perhaps in this sense that the gift is impossible. Not impossible but the impossible. The very figure of the impossible.” Derrida, Given Time: I. Counterfeit Money

I have been thinking a lot about gifts in the last week, and about Derrida’s recasting of the gift as the “figure of the impossible.”After all, what is my life now, if not impossible? And yet it is paradoxical, right, because in its absolute impossibility there is life itself. There is tension and extraordinary generosity and absolute terror. And much of that has taken the form of a gift, of sorts. I have received many gifts in the short time that has elapsed since my breast cancer diagnosis and mastectomy, and I want to talk about several of those here, today. I want to talk about “the gift” in part because I am an awkward recipient. There’s more work to do there. And I want to think about “giving” because I am so blown away by the huge blanket of love and support and kindness that so many peopled have stitched together around me. It holds me together, your generosity, literally and figuratively.

Let’s take today. Today my drains came out. OMG I hate/d my drains. Two surgical drains came home with me, in me, sticking out of my chest and draping down my body ending in vacuum sealed pouches that needed, daily, to be emptied and the contents measured and classified (by me, here recast as “Junior Scientist”) as to colour and so on. How utterly alien a way to enact the hospital homecoming, already more than half-cyborg. I was terrified the drains would catch on something every time I moved anywhere in the house, let alone outside of the house. Well today, Sz came over from Galiano to hang out with me, including to hold my hand while the home nurse pulled the drains out. And Sz is really squeamish. What an amazing gift – to be there, beside me, while the nurse carefully cut the stitches and pulled out the, oh, about one foot of tubing that was coiled up inside the surgical area. One drain per side. Twice the trouble and twice the fun. And it hurt. Oh yeah. It really hurt.

And then there is the gift of the “drain apron”. Speaking of these dreadful post-surgical drains, my neighbour, J, gave me an apron to carry my drains around “hands free” several days ago when I was ranting on about how hard it was to go anywhere and take the drain apparatus with me. The apron get-up worked really well for the drains because I could slip the ends into the pockets and then I used these cool velcro strips that Janice and Stuart got for me at Home Depot to attach the tubing to the apron ties. Stuart, by the way, came here last week, arriving the day before the surgery, to be a helpful friend. Imagine what that would be like! The gift of presence is, in this time, as always, maybe, of incalculable value. I think it takes courage to show up and hang out for my mastectomy.

My friend B gave me the means to create a safe way to sleep with my drains. B gave me a long bolster pillow for the bed that was incredibly helpful in my creation of what I called, the Chute. The presence of the drains meant that I couldn’t turn even once during sleep. Turning could have got my arms or body all tangled up with the drains, which even if it hadn’t yanked the stitched tubing right out of my chest, would have hurt like hell. So rather than sleep in a recliner, which would have worked, but kept me way too far away from Janice, I created the chute. A pile of pillows kept my body half upright, the the bolster pillow wedged me in on one side. Another blanket wedged in on the other side, and I was locked in for the night. I actually slept for seven nights like this, and stayed on my back all night long. And I slept. Thanks for the gift.

And there is a whole lot more. I will forget to mention something here. Mea culpa. Every day I have received flowers. Yesterday, a huge box came from my favorite organic grocery store that was jammed full of every possible food item that a recovering gal and her home-care buddies could ever hope to stuff into themselves. My work friend SP sent that box over, and even though we have never once done anything remotely domestic, like go grocery shopping together, SP knew excactly what kinds of food that I would most love to eat. And Y knew how to do just that same thing when I was in the hospital. She brought over a whole bag of lovely edibles that I munched on in-between hits of demerol and vicodin. L/L made me a huge casserole of my favorite kind of chili. WOW! My fridge is full.

There are signs everywhere of the impossible – of hope proffered during a time of desperation and fear, of love given freely in the most bleak and desolate landscape I could ever have imagined, of generosity and kindness and honesty and passionate, fierce affection. Likely we don’t need Derrida to help us to make sense of the gift. I am just an unrepentant theory nerd. But I do know that it is critical for me to accept these gifts as they arrive – naked and unadorned. The very figure of the impossible. I live with that. And your gifts are recasting that figure into something that moves, and with which I am so very happy and honoured to be moving. And for that gift, the gift of life itself, I am so terribly grateful.

 

Survivor, 2.0: Just Say “No!”

“To the extent that current methods of detection and treatment fail or fall short, America’s breast-cancer cult can be judged as an outbreak of mass delusion, celebrating survivorhood by downplaying mortality and promoting obedience to medical protocols known to have limited efficacy. And although we may imagine ourselves to be well past the era of patriarchal medicine, obedience is the message behind the infantilizing theme in breast-cancer culture, as represented by the teddy bears, the crayons, and the prevailing pinkness. You are encouraged to regress to a little-girl state, to suspend critical judgment, and to accept whatever measures the doctors, as parent surrogates, choose to impose.” Welcome to Cancerland
by Barbara Ehrenreich
Harper’s Magazine, November 2001

The first weekend after my diagnosis I made Janice and Sz take me down to the Dragon Boat races where there was a whole slew of ABreast in a Boat breast cancer “survivors”, paddles in hand, taking to the water with style and great energy. After their race, the survivor teams held carnations in the air high above their votes in tribute to those women who had died. I knew that watching was going to be hard, but I needed to begin to imagine myself in one of those boats, and soon, paddling my way to survival. I was haunted by the voice-over narration during this very moving event. Maybe I am just an over-achiever, but I was struck by an intense pressure both to meet the challenge of being a “survivor” and to feel a fearful guilt that I might be always-already a loser in the survival game. What if the probability of death and the will to agency don’t actually intersect in a Lance Armstrong moment of skilled determination?

There is a hard kernel of an obscured Real – a residual by-product of deliberate ideological distortion – in the “survivor” discourse that is foundational within the breast cancer community. I am supposed to be learning how to “be a survivor” of breast cancer. How can I not want to survive? After all, I have just undergone radical surgery and will in all likelihood be faced with countless further treatments all aimed at producing enhanced longevity in the face of an illness characterized at its root by its relentless capacity to cut life short. Do I just have a bad attitude? What is wrong with the discourse of “survival”?

Go and watch Alien Song, an animation created by Victor Navone that went viral online a while ago. It’s a perfect enactment of the Real that lurks in the survival discourse. Full of energy and passion, mid-song, our friendly alien is crushed by the disco ball. I loved it when I first saw it years ago, and it seems especially insightful now.

Yeah, I want to survive. But cancer is a process of cellular proliferation. It just takes one cell. If it shows up somewhere else, well, there goes “survival” and I don’t want to always-already feel guilty that somehow I have just not been strong enough, or virtuous enough, and have therefore failed the survival challenge because I didn’t try hard enough, or I wasn’t cheerful enough. And I am no god damn hero.

 

the Treatment Tunnel

For as long as I can recall, I have had one single phobia — being trapped and suffocating in a deep dark tunnel where there is no room to manoever. You can just imagine how hard MRI’s are for me! So far, my cancer treatment experience has been a rather too perfect enactment of this, my worst and deepest fear. Every procedure is just like that tunnel from my most intense nightmares. I am sucked into the tunnel – there is no room to move – it’s hard to breathe – there is no chance to turn around – it seems endless – and just when I think I can’t stand it one more second the tunnel releases me. The tunnel is ruthless and narcissistic. The tunnel doesn’t care how I am feeling. The tunnel has only one function, which is to hold me in a way that I loathe, in large part because the tunnel encroaches completely on my sense of self/control. Cancer is all about treatment tunnels, and each one seems deeper, darker and longer. And I have no propensity here to go into the language of karma. Cancer is not “teaching me” about how to inhabit a series of tunnels, each one progressively darker and longer. It just is, itself, located within and dispersed across a set of medical treatments and practices all of which serve to wrest away control – just like getting sucked into a conjugated series of tunnels.

At the moment I am lodged in the mastectomy tunnel, with its associated strictures, like the drains that are lodged on both sides of my chest and that I must scoop up and take with me everywhere I go. It’s impossible not to live in a constant state of terror about catching the tubing from one of the drains on any one of the thousands of obstacles that a house is made up of. Yesterday I experimented with putting the drains in the pockets of an apron so that I could have my hands free and bake Janice a cake. It seemed really clever, until I realized that the reason my fly wouldn’t close properly as I was getting dressed was because one of the tubes was caught in my fly, which I had not been able to see because the apron shielded the tubes from easy surveillance. How to navigate space when every object becomes an obstacle?

 

Support

Telling people about cancer is extraordinary — by definition — extra/ordinary. There is never a right way. Some people are really weird and it’s hard to forgive their reaction, which my wonderful therapist, Dale, aptly characterized as a form of “manic defense”. On the other had, some folks are amazingly courageous and forthright about their response to the unexpected revelation. It’s not that different, in some ways, from telling people you’re queer, except for the fact that most people are WAY more freaked out by “cancer” than “queer”. I am not exactly an expert in coming out as a cancer — A cancer what? — a “cancer patient”?, a “person with cancer”? — having only been living with the diagnosis since June 8th.

What I have learned so far is that in about 2 seconds I know everything there is to know about whether or not I will be able to co-exist with the person – at least in this, the most active phase of “treatment”. There are some clear lines of demarcation. Any attempt to tell me (a) what it means to have cancer, as in, “Cancer is a gift” or (b) why I have cancer, as in, “I know why you have cancer. It’s the toxicity in your family.” are immediate grounds for exclusion. Most folks struggle with their fear, and it’s good when they just get that anxiety right out into the open. People tend to be freaked out by the fact that there is precious little they can do to help me out with a potentially fatal problem. And they can either co-exist with that vulnerability, just like I have to, or they can’t, in which case, they will quickly slip away from the tangible landscape of my quotidian existence. I am good with it all. Most people want to know, concretely, what they can do. They want to be supportive.

Ten days before my surgery, I went to my brother Tom’s (and his partner) Marg’s wedding in Toronto. It was a tough thing to do – maybe tough for all of us. I was newly diagnosed and facing surgery, and they were celebrating. All I can say is that Tom and Marg and their friends (Hi Peter, Rick, Jorge, Willard and Ernie!) were amazingly supportive. No one talked about my cancer much, and when they did, it was openly and frankly and not in hushed whispers. One of those friends, Brenda, from Saskatchewan, emailed me a few days ago and told me a really cute story. Brenda bought some pots for her garden, and new plants, just the day after my surgery. She talked to the plants and asked them to stay healthy and beautiful, “for Mary”. That is, for me, a beautiful and touching story. Someone I barely know, thinking positive thoughts and taking action and having the guts to reach out across the social awkwardness that plagues us all to share their kindness. That helps. And there are so many examples I could add here, of support in this awful time. Thanks to all of you – You know who you are!

 

Living in Prognosis

It’s amazing to read something that seems to speak directly to you when you are in the grip of an extraordinary trauma. I can imagine getting really flaky, which I could not have envisaged pre-cancer. Yesterday my friend Stuart gave me a paper by Sarah Jain called “Living in Prognosis: Toward an Elegaic Politics” (Representations, Spring, 2007). It’s a funny thing, coincidence. I met Sarah Jain last year, having exchanged articles by email sight unseen, as folks commonly do these days. And then I discovered that another new email friend, Kris, from the University of Chicago, knew Sarah Jain, as does Stuart. How odd is that? And now this incredibly smart woman who teaches at Stanford and whose work I have been getting to know is writing about uncertainty, risk, discourses of temporality and breast cancer. Wow. I am almost ready to start talking about angels.

Everyone wants to know when I will get my pathology report and it concerns them greatly that (a) I am not sure, and (b) I don’t seem to be motivated enough about reading the analysis of the evidence from the diagnostic work on the breasts following the mastectomy. These folks who are concerned about my apparently lackadaisical attitude don’t have cancer. Well let me correct that. They are not “living in prognosis” – to use Jain’s elegant formulation. Prognosis is a very inexact set of practices. The reassurance that my well-intentioned friends think will be provided by a set of statements about the tumour and the presence of absence of cancer cells in the two lymph nodes removed in the sentinel node biopsy is actually a pipe dream. In fact, someone working in a lab will look at slices of the breast tissue and the lymph nodes, and provide a set of descriptive statements that, as a collective set of facts, will link up with another set of aggregated probabilities. The relationship between the population statistics and what the pathologist notices, and between these two sets of relations and treatment options – well, it’s just a big huge open field of uncertainty.

Tumour size, single or multi-focal, cells in the lymphs or not, estrogen and/or progesterone positive or not, age on diagnosis, micro-invasion or not — yes they all translate into slots in an actuarial chart — but no, there will be no moment of clarity and comfort in this clinical picture. Chemotherapy yes or no, radiation yes or no, hormone therapy or removal of the ovaries or both. Any and all are possible elements for my treatment and I am rather glad that at this point, today, as I am riding the waves of post-anaesthetic nausea, that there is a lot that I still don’t know.

 

Up and Over

Today is Friday, and my surgery was Tuesday. That’s how long I have been unable to get to my computer and update the blog. Not bad, really. And I could even say that about the surgery. Not bad, really. It wasn’t.

All the staff at VGH were incredibly kind. I was so very appreciative of their warmth and empathy. Usually I am not one for falling into the outstretched arms of others, but the day of my surgery was all about letting go and believing that other folks really could look after me. And they did. My first challenge was the injection of radioactive material into the breast to enable detection of the lymph nodes closest to the cancer – part of the sentinal node biopsy procedure. I had read about this injection online and frankly, I was really terrified of the pain. So I told the radiologist, and he very calmly and gently described the typical reactions to the shot given without a local anaesthetic. He didn’t rush me, nor did he discount my fear. I am so appreciative of that kind of response. And sure enough, the pain of the agent entering the blood stream, while it wasn’t pleasant, wasn’t awful either. The whole event was a good object lesson.

When they wheeled me into the operating room, I relieved some of my anxiety about waking up after the operation by telling the anaesthetist about my bad experience waking up in agony post-hysterectomy. Yeah. Just three years ago, I gave up another anatomical marker of femininity. Dr. B, the anaesthetist, was very sweet and told me that he would consider it a very significant personal failure on his part if I had to go through that kind of trauma again. He said it like he meant it. Just the words I needed to hear at that precarious moment. And life is so very precarious. It’s just times like surgery that push the very fragile fabric of life up into microscopic view. And fragile can, of course, also include resilience. Sure enough, I did not wake up from my surgery in agony. In fact, I had to look down to make sure anything had been done at all. My surgeon was — what can I say — like any surgeon I have encountered. Not cold exactly, but — what is the right word that I need here — clipped?

Dr. C told me that two lymph nodes were removed in the sentinel node biopsy, which is where they look for lymph nodes that are close to the cancer so that they can examine them to see whether or not cancer cells have moved beyond the immediate site of the DCIS. I really won’t know much about the state of invasiveness of the cancer until I hear about the pathologist’s report, which will be a couple of weeks after the surgery. Dr. C was VERY excited that she saved my tattoo. It is rather extraordinary and I still don’t understand it anatomically, but somehow, she managed to remove my breasts and save most of the skin that covered them, and in so doing, save the tattoo. It wasn’t my goal to save the tattoo at all, but the challenge clearly appealed to Dr. C’s achievement orientation, and that is probably good. Keep the surgeon amused.

My time in the hospital from the end of my operation until discharge was just under 24 hours. During that short time, I was showered with love and flowers and food and incredible kindness by my amazing friends. I can’t express adequately how deeply I am moved by my friends. They created an amazing blanket of love to wrap me up and they all stood with me in that horrifying place of fear and pain and anxiety and they steadfastly kept me close. And of all of those folks in my life, none has been more brave than my amazing and gorgeous partner, Janice. From the nerve-wracking time of the initial diagnostic mammograms through to the mastectomy, Janice’s support has been nothing short of heroic. There is a lot of misuse of the discourse of heroism in cancer narratives, but in this case, it would not be awry. Love, love and more love.

 

Confronting the Unimaginable

Today I will lose both of my breasts to a double mastectomy. This is, without any doubt, the most difficult day of my life. I don’t think that I am afraid that I will hate how I look without breasts, or anything quite so mundane. And in some ways, its odd that the loss is what I fear so deeply when really, the only thing that matters in this scenario is whether or not the cancer has actually spread, setting up the scenario for metastasis. No, I think it has something to do with the impending reorganization of the topography of my body. I have inhabited this body for 48 years, and although I didn’t ever feel like I was particularly fond of my breasts, they are part of what Miller called the “temple of the familiar”. My body. My shape. And all this is about to change profoundly. It feels like I am about to participate in some kind of enforced phenomenological reorganization that could only ever come much too quickly. I could never be ready for this. I am terrified.

 

Living in Pink

I have yet to detect a familiar or comforting level of gender trouble in what I have come to think of as “breast cancer world”. And no. Breast cancer world is not gender neutral. Think about the pink ribbons. Pink is the colour of this cultural enclave, and cultural diversity in respect of gender has so far been very elusive. Granted, my time in this universe is not extensive and who knows what I will find. But as a queer women with a very distinctively transitive relationship to her own gender, the lack of play with gender makes me really nervous. I can’t really do pink. My first observation of this phenomenon was my initial visits to the mammogram clinic. They do other kinds of medical imaging there, and there is a special room for the mammogram folks with a door that says “Ladies Only”. Inside, one is immediately handed a pink gown and told to “put it on and sit in the waiting room with the other ladies”. Never having identified as a lady, it’s all rather disconcerting. But now that I am a person fighting cancer directly, my experiences are not so fleeting. The other day, when I went for my preoperative breast MRI, the technician told me, as I was leaning down over the frame that would hold my breasts for the imaging, to “put your girls in there.” My girls. Ok, so it’s maybe kind of cute depending on the mood you’re in, but in my case, my breasts have never been “girls” and pink has never been my colour. This lack of “gender trouble” becomes, of course, much more serious in the dialogues and discourses around “breast conservation” and/or “reconstruction” surgery. Audre Lorde, in her Cancer Journals provides a really good analysis of the role of gender in the cultural shaping of medicalized practices related to the insistence, post-mastectomy, on wearing a prosthetic and then the various and complex medical debates about the relative safety of various forms of breast augmentation as part of reconstruction (e.g. silicone implants). If breast cancer treatment is in some critical way organized structurally around a deep and enduring (and some would say, mannic) commitment to the preservation of the breast at all costs – any breast whether real or fake, how is this shaping what would presumably be the primary goal — saving life and improving quality of life?

 

Dancing on Knife’s Edge

I have wondered how to start this blog. Just thinking about writing my cancer onto the screen is way too real.

I have been living with a breast cancer diagnosis for three short weeks – days that have been filled to bursting with specialist appointments, blood tests, MRI, and hundreds of desperate and sometimes awkward conversations with friends and family. And I have cried. I have never cried so much as I have over the past 21 days. Buckets. I never know when the tears will start.

The beginning of this story probably involves a minimum of three combustive elements: queer love, a tattoo and cancer. I could start this account 17 years ago, when I had fallen desperately in love with a woman called Ange. She seemed like a heroic figure to me at the time. When I met her, Ange had just been through surgery for colon cancer. She had “the bag”. And she had a poster on her bedroom wall of an Amazonian woman with an amazing floral tattoo that wound its way across her double mastectomy scar. Ange died of cancer about six months after getting the all-clear from a doctor at the B.C. Cancer Agency. And now, today, I am quietly waiting for my own bilateral mastectomy (double) which is scheduled for the day after the day after tomorrow. And the tattoo that I have so proudly sported for the past seventeen years – a floral wreath that winds its way across my breasts in Ange’s honour – will itself be severed, and distorted; brutally cut short, just like my love of Ange.

I wanted to start this blog right away – back then – in the early days – but I just couldn’t bring myself to do it. I didn’t have the energy or perhaps, the courage. So this first entry will be a retrospective on the first three weeks.

June 8 – a mere three weeks ago – I got the call from my doctor with the results of my core biopsy. I was sitting in the Edmonton airport, waiting to fly back to Vancouver after having done a couple of really good research interviews. I am working on a project where I am looking at media, sexuality, communities and knowledge. When I saw my doctor’s name flash across the call display I knew before I even clicked the little green button that the news wasn’t good. After all, why phone me with good news? “Are you sitting down?” she ventured. My doctor told me that the biopsy of the right breast had revealed DCIS (ductal carcinoma in situ). “We’ve found it very early,” she exclaimed buoyantly, “and it’s totally curable. 100%” She then told me that she was heading out of town herself, but that she had set up an appointment with a surgeon. I remember that I couldn’t hear the surgeon’s name, and that I was utterly at a loss for words. I couldn’t metabolize the information at all.

It was a Friday, which meant that I couldn’t get into the doctor’s office until Monday to read the radiologist’s report on the biopsy. So I read whatever I could get my hands on about DCIS. Monday, I knew what to look for in the report. And when I finally got to see the report, I couldn’t fathom the intention of my doctor’s good cheer. The DCIS was multi-focal, grade 3 comedocarcinoma, and with a focus of microinvasion. Not good. But my doctor wasn’t around, and the next step was to get in touch with the surgeon, and to see what I could find out about her.

Dr. C works at VGH and is an oncological surgeon. So far so good. I found published papers she had authored. I didn’t find anything awful, although I am not sure what I was expecting to find. When I called Dr. C’s office, her secretary set up an appointment the very next day. I was just four days post-biopsy news, and heading into the oncological surgery floor of a major hospital. I didn’t take that as a very reassuring sign although, of course, I was also really grateful.

Dr. C’s office manner was a breath of fresh air for me. She took one look at my page crammed with notes and questions, and asked me what I thought about the situation. I remember thinking, “Wow. How novel. A doctor who wants to know what I think before even giving me her opinion.” So I ventured forth with my impression of the biopsy report, outlined my family history of bilateral breast cancer, and ended with the notion that I would probably be more comforted with a simple mastectomy of the right breast than a lumpectomy, despite the equivalent survival rates, because the fear of recurrence would likely prove untenable for me. My presentation felt oddly clinical – like I was an extra on House who had just nervously stumbled her way through a case presentation during Rounds. I thought Dr. C would vigorously disagree. After all, how hopelessly old fashioned of me to suggest a mastectomy for DCIS when I could opt for lumpectomy and radiation – or what we call, “breast conserving” treatment. But instead of trying to persuade me to keep my right breast, Dr. C steered us right down the path of deciding the fate of the left breast, and about 60 seconds later, I had settled on a bilateral mastectomy. There wasn’t a whole lot left to talk about at that point, save for a discussion of the sentinal node biopsy – a technique for testing the cancer status of the lymph node closest to the cancer and that is designed to reduce the risk of unnecessary lymph node removal. Then came the date for the surgery. July 3. 3 days from today.

I don’t know how to accommodate to the fact that I have cancer, nor to the fact that in three days, my breasts will be removed. Some days, the loss of my breasts seems like the really bad thing that I have to somehow get used to. And then, cruelly, comes the realization that after all, what’s the loss of breasts in comparison to the very real possibility of metastatic cancer?