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.

 

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.

 

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.

 

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.

 

My Second Life… Welcome, Stranger

Like you, I have a Second Life. Do you have a house in your second life? Mine is rather handsome, I must say. The house looks like an old 1930’s manse that you might find on a quiet street in Boston, or Chicago. It’s covered with an ivy that looks like Virginia Creeper and filled with antiques. The old 1940’s Wurlitzer plays contemporary Internet radio stations and I can walk out of the bedroom and look at my ocean view. It’s all part of my other worldly existence in Second Life, which by now, after all the press that Second Life has received in the past year or so, you have likely heard about. As the front-page of their website suggests, “Second Life is an online digital world imagined and created by its residents.”

My SL character is called, Mary Television. You have to choose from a list of pre-made last names when you sign up, which is, free, by the way, and Television seemed, at the time, to suit this particular incarnation. Mary Television was like a woman living in a television set - in a box, inexorably produced and regulated by the codes of virtual visibility and branding. Mary T looks a lot like Mary B. It’s uncanny, actually. It took me a very long time to figure out how to defeat the codes of femininity that regulate and shape every aspect of how Mary T functions - how she sits, walks, moves her body when she walks. And that is not particularly surprising. Queering all of that cultural gender and sexuality coding was, in much the same way, as exhausting and slow as it was, and remains, in my First Life.

Breast cancer temporarily ended my Second Life meanderings. I stopped logging on as soon as the diagnostic wheels started turning in the direction of cancer. Mary Television was suddenly illegible to me as a personage whose viability in the world I could inhabit. I lost the land that I rent in Second Life because I wasn’t there to make the weekly payments. And yes, the money is real My knowledge of breast cancer at that point in my life, Mary B’s life, could not translate into the language spoken by Mary T. She didn’t know what to say to the people who she routinely yaks with in SL. Her SL buddies. How do you tell your online friends that you have breast cancer? On one of my last BC (before breast cancer) visits to SL, I executed a Search for Breast Cancer, under Places, and found nothing. Nothing. There is, it would seem, no breast cancer in Second Life. And this is a place where there is something for everyone.

Now, AC, I find that I have become a stranger to myself. And that is in First Life. I look at myself in the mirror, and I don’t experience a comforting sense of visual continuity. I look back, deliberately, and with intention. I am not sure who she is. She looks different. I look at Mary B the way I used to look at Mary T. Who is she? The continuous after-shocks of recognition horror refract the everyday act of looking through a fun-house mirror.

So, how, then, to greet the stranger?

As Derrida cautions, one must confront, ethically, the mixed-messages that are effected in our “Welcome,” with which we enthusiastically seduce the stranger into our midst, by means of hospitality that is well-intended. The stranger’s welcome is, as he points out, negotiated upon the threshold where thinly concealed hostility lurks within our mechanisms for controlling the stranger’s location. And so it goes. The paradoxes of my everyday worlds. “Welcome!”

 

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.

 

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.

 

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.

 

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.

 

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.