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.

 

 

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.

 

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.

 

Confronting the Unimaginable

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

 

Living in Pink

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

 

Dancing on Knife’s Edge

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

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

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

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

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

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

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

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

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