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.

 

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.

 

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.

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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

=============================

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.

 

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 survi