Say Hello, Say Goodbye

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

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

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

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

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

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

 

Mary’s Christmas Queer

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

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

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

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

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

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

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

 

Breastless in Vancouver, and You?

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

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

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

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

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

 

Life, Hope, Gifts…

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

 

Can you come home, again?

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

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

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

July 3 Bilateral Mastectomy

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

July 21 Notice left ovary pain for the first time

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

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

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

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

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

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

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

 

the “Good Enough” Friend…

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

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

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

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

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

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

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

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

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

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