So, A Film.

So Callanish produced a film, about their retreats (one of which was so healing for me) and about six young women who have metastatic/recurrent cancer. Tonight, the film was screened. I went.

The film was beautiful. Shot in golden light. Edited carefully, with profiles of the young women portrayed with sunlight dancing on their cheeks and warm blurred moments and yellow daisies swaying in the wind and rose petals floating in a creek. The images were scrumptious, warm, and bathed in golden light. In many ways, these images reflected my own experience of the Callanish retreat: gorgeous, careful, golden, warm, full of heart.

The women told stories of times their doctors gave them weeks to live, they shared their decisions to get married and travel to India and do insane bike rides in the face of terminal diagnoses. They shared spirit, hope, and fears. They echoed the voices of other young adults I’ve known, and I felt many of their stories and worries and hopes deep inside my core. The film profiled a few of those professionals from Callanish who so beautifully receive spirits and bodies battered by cancer and who, through absolutely tender and amazing caregiving, heal the wounds the oncologists cannot see and awaken the souls of people who have been to hell and back. That part was so well-captured, and I could feel their care leaping out through the screen and enveloping us all. I know their care works, because it worked for me.

You know there’s a but coming though, don’t you? It’s a hesitant but. I don’t want to say anything critical about this wondrous place. I don’t want anyone to hear me utter a single word of not good-enough about these amazing people. But.

I could feel it in my chest, a tightening. I sat in a row of young adult cancer survivors, young people who have fast become close friends. We spent the afternoon together with lunch and lattes. We were stoic. Sometimes a tear escaped. Sometimes we held each others hands. Sometimes we nodded. Mostly we were stoic.

I could feel it in my belly, a stone sinking. This pain was real, but bathed in golden light. I yearned for sharp shadows and the harsh light of midday, for the hard angles of the sun that paint faces in black and white- angles and light that feel like cancer. I expected to see not only the loosening of the cancer knot wrapped around each person profiled- the loosening work so carefully done by Callanish- but also, how the knot was tied, how it was bound, how it left marks that yoga cannot soothe away. I know Callanish retreats are out-of-time, that they are out-of-the-rest-of-life, and I think that’s awesome and necessary. I wondered what it would look like to show the anger, to edit in the frustration, to account for the ongoing struggles around pain, medication, and loss. I know that the Callanish retreats are a sacred space that can expand to hold pain, ongoing struggle, and loss. Maybe Callanish retreats can hold so much pain because they are simply soaking in beauty.

But cancer isn’t all beautiful. It isn’t all retreat. And I think to really illuminate WHY that place must be, it needs to be grounded in what young adult cancer actually looks and feels like: grounded in veins that are totally shot from so many IVs, grounded in the humiliation of hair loss, grounded in feeling like the only one, grounded in a system built for older bodies, grounded in anger and pain and loathing and loneliness. Maybe some people know that, and maybe it doesn’t need to be explained and maybe it’s comforting and amazing for the audience to see the sacred space of healing. But I don’t know that people do know that. I actually think most people don’t know what cancer is like, and so they don’t get why the Callanish retreat space is so critical.

After the film, the six women talked about their experience. First, they introduced themselves and were asked to say a bit about how they are doing, now.

Every single woman smiled and said they were doing fantastically. Everyone used the word fantastic. Everyone. Each time, the feeling in my chest got tighter. My stomach flipped. Fantastic. Fantastic. I’m doing fantastic. I feel fantastic. Fantastic, fantastic, fantastic.

Come on.

But then I wondered what the other option was, sitting in front of a giant audience of people, everyone’s eyes on you. Is there discursive space to say anything after fantastic, after someone else has said fantastic? No one wants to be a killjoy. Fantastic. She’s fantastic. They’re fantastic.

It felt so out of synch with the sacred space for when things are not fantastic.

But really, what else can be said? How do you say, this sucks, to a group so large? How do you fail to respond to the question lobbed at cancer survivor after cancer survivor: “What did you learn?” How can you possibly speak anything but positive, happy cancer?

Do we even have the narrative building blocks to say anything but this story with a hopeful narrative arc, this story that resolves with defying the odds, this story that isn’t angry but is grateful, this story that isn’t crippling but is wings soaring? Isn’t it true, that we draw on the worlds we know to tell stories? Aren’t we just like children playing with building blocks, making castles out of squares and rectangles? What if the children need a lopsided octagon? What if their life feels more like a chartreuse squiggly oval, but they have to settle for a green rectangle instead, because the building blocks only come in rectangles and squares and primary colours?

Such are the building blocks of cancer storytelling. Those brilliant young women who shared their stories in the film got the standard set of building blocks, the same ones we all have: primary colours, shapes that fall easily into brick-like formations: squares, rectangles, and maybe a few long flat things. Maybe an octagon or a diamond. But those are the weirdest ones. Forget it if you want a chartreuse squiggly oval. Just forget it.

They were working with those discursive building blocks. But the restlessness in my legs and the ache in my chest and the knot in my belly, those feelings were chartreuse, squiggly, and oval. Anger has no place in these building blocks. There are not feminist building blocks. There are not queer building blocks. There are not sad building blocks. These are building blocks meant for public consumption. Building blocks palatable to the general public. These building blocks are language itself.

Sure, there can be anger at Callanish, because they’ve tried so beautifully to rid the space of discursive building blocks. You don’t have to talk. You don’t have to say anything. And sometimes cancer takes all the words and shoves them off the side of the cliff, so there’s nothing to say anyway.

But I was dying for someone to be honest. I texted my friend Catherine, hopeful her memoir will soon be ready for me to read, a memoir that she herself told me was too angry, too sad, and too queer for most people to like it. I am dying for her honesty. I am dying for her anger, written across the page. I am dying for her account of breast cancer.

I know these women know. I know the Callanish people know. We’ve talked about it. But what is the choice? How does one tell an impossible story, to a theatre full of waiting faces, a theatre filled with pairs of eyes staring down, expectant for something brilliant to be said? And also- aren’t we responsible to tear apart the happy narrative, don’t we have to change the world?

And then it happened.

Someone said cancer was a blessing.

Cue, my disengagement. I just can’t. “Cancer is a blessing” is probably one of the most popular blocks in the cancer-storytelling block set. It’s like a blue square. Hundreds of them. They are everywhere you turn. When you first get diagnosed, people dump “cancer is a gift” storytelling blocks on you like they are going out of style. If you’re me, you chuck them out the window. But then again, I’ve always like being a little oppositional. My mother says its the red hair. Whatever. But truly. A blessing? Why do we cloak it this way? To make others feel like it’s OK we got cancer so young? To placate? To brush away worry?

We needn’t placate. We need to incite. It isn’t OK. We need a revolution. Stat.

And then it happened again.Someone asked these young women what they could teach “us?”

OK, first of all. Us? Why us? And who is “us?” I knew right away I was not a part of the us. I wondered if this question-asker knew. Us- a discursive move that let everyone know that “us” were everyone else, not the aberration, the healthy people. The five of us, sitting in a row and digging our fingernails into each others’ palms- we were outside the us.

Second of all, really? Teach? People who have cancer are prophetic? Really, that was the question?

No one asked what they lost. No one asked what hurt the most. No one asked about a revolution. No one asked about channelling anger. How could they? There are very few building blocks available to ask these kinds of question. There are even fewer to answer with. And everyone knows it. I don’t think its conscious. I think it’s cultural. Political. How we do cancer. It was a pedagogical evening. Full of teachable moments.

I want to unteach though. I’m over pedagogical. I am angry. I am interested in telling a different story, though I know it’s extraordinarily difficult and in telling another story, we mostly fail out of green squiggly chartreuse ovals, and lean on blue squares. Like, with the song. We’ve tried to tell a story of the everyday, a story of the cancer-ed body, a story of anger and healing braided together. Were we successful in refusing the happy pink ribbon narrative? Sometimes I think so, sometimes not. But I’m proud of our effort. I’m proud of our insistence that we have to tell something else. I know that we told a little squiggly chartreuse oval, even we fell back on blue squares sometimes. Each attempt is imperfect, but necessary.

I think the film (which will soon be available on their website and you all should watch it!) was beautiful, but it was hard. It was not what I expected. My stomach was in knots. And you all know where I go when it gets hard- cultural theory! Feminist critique! Because theory always makes everything better. I feel kind of bad, because The Art Therapist Who Presides Over Acrylics and Feathers and Glitter asked me what I thought, and I didn’t want to burst into tears in the middle of the theatre so I started spouting off about discursive space instead, and how storytelling about cancer is im/possible, and how it’s different when people edit together their own stories- and she reminded me that one of the young women worked with the filmmaker. I didn’t mean to say it wasn’t beautiful or important or totally necessary or critical and real. Those are peoples’ stories and they should be held carefully and tenderly and hopefully. And that is all. Except we also have to be engaged and critical and our theories are inside our bodies, too. How could they not be? Embrained bodies. Embodied brains. It’s both.

So theory makes everything better. Or at least, it makes me feel a little less embodied sometimes, and more embrained, so I can get through the hard moments. Theory makes everything better. But then again, so does The Song. The song is, of course, theoretical. It’s deeply engaged with cultural theory and feminist criticism. It has to be- that’s why I love it so much. It lives in my body. But I need to see the anger painted in broad strokes, I need to know I’m not the only one who is sad, I need to hold up what still hurts and I need it to be witnessed. That is exactly what I have gotten at Callanish, but for some reason, the film as a media event also felt disjointed. Maybe that’s just who I am: maybe I should try to be less critical. Maybe I should just appreciate. Maybe I should be more like those young women, women who have worse cancer than me, if we’re comparing. Maybe I should say I’m fantastic more often. Maybe I should throw more rose petals in the creek. Maybe I should do more yoga (well, that is definitely true, isn’t it?). Maybe I should, maybe I should, maybe I should….

But fuck. I need a damn oval squiggly chartreuse building block. I guess I have to make my own. With the song. My friend Catherine is writing a book I’m pretty sure will fit in with my oval squiggly chartreuse building block, and a book I think will make another attempt at angry, queer, sad, feminist cancer, another attempt to keep my song company. Maybe we’ll fail. Definitely sometimes, we will fail. But maybe sometimes we’ll end up with something approximating an oval squiggly chartreuse building block.

Now why do I feel the need to end this post by saying how grateful I am for the film, by writing how beautiful and brave those young women are, by acknowledging that we all have our own processes and that each one is powerful and important and should be held carefully and loved. What is it, that makes me feel like I need to end on that note? A pull to the other kind of story? I’m ending it here. Time to go listen to my song.

Some videos

I’ve made lots since I had cancer, but not published any on the blog, or elsewhere, for the most part. Here are two: one from this week, one from November, just after I was diagnosed.

no malignancy detected

And that was that. Today cancer anticlimactically ended. Sorta. I find myself balanced on a ledge. I can see the abyss, a rock-climber who knows what its like to spiral through the air without ropes tied tight enough, without a visible safety net to secure the bottomless canyon. But we’re sitting on the ledge now. My legs are swinging over the edge, and I am looking out at the cancer canyon and gulping at the terror, the anger, and the good fortune that feels insanely uncertain, but which has delivered me to this ledge of post-mastectomy, post-chemo safety. From my ledge, I can survey the land. I can see my cancer-buddies who have backed away from the ledge, and who beckon me to join them, throwing rescue-rings and life jackets and whispering about the view from a vantage point where the ledge is not teeteringly close. And I also see my cancer-buddies still struggling to grab a-hold the rock-face. I want to throw a life-rope, but I don’t quite yet have my footing, and so I can only ask those far enough from the cliffs’ edge to make sure they throw ropes to my buddies trying to scramble up the slippery mountainside. I’m still trying to lasso something secure on this side of the cancer-cliff, something to hold me on the healthy side of the cliff, the side where hair grows and my biggest concern is whether my breasts are going to be the same size (and Dr. Yoga-Surgeon assures me, they will be, someday).

Yesterday I saw Dr. Yoga-Surgeon who, despite her training in surgical methods (generally also known as not warm-fuzzy methods) was a total force of nature in reassuring me that in fact, I’m going to be OK. That seems to be her mantra, “it’s going to be OK.” And she’s right. It is going to be OK. I think. She said it would be OK before the surgery, she said it would be OK the day of the surgery, she said it would be OK after the surgery. And apparently, the pathologist and my oncologist, Dr. G., agree. There is, after all, no detectable malignancy. The pathology of my 66 milligrams of breast tissue came back: clear. There was no residual malignancy. The nipple core read benign breast tissue. They could not find cancer in my 66 milligrams of breast tissue. I cannot explain the dizzying goodness of seeing the words no residual malignancy right above the line that reads: nipple core: benign breast tissue. It is definitely time to borrow the doctors’ belief in my ability to be OK. Until I can believe it too, I’ll borrow their belief in my being OK.

There is no test to know the future. No way to know what will happen. I know that. Dr. G. repeated it again and again today, and then told me to keep two filing cabinets in my brain, and to close the one filled with “I could have cancer again,” and leave the “I don’t have cancer anymore” cabinet wide open. The “I don’t have cancer anymore” cabinet is filled with ropes and knot-tying manuals and all kinds of tools to anchor myself into the cliff ledge, tools that I can use to feel secure even though a wind could still knock me over the edge. Tools that will help me grasp life  and love even when uncertainty is the name of the game, the air I breathe and the grittiness that seeps into my everyday plans.

The information came in a pathology report. Many have been asking me about this path report, expecting, I think, that I was on edge to hear the news. News is news is news. It’s cancer news. I was, actually, content to wait. I don’t know why. I wasn’t sitting on the edge of my chair. I wasn’t even expecting Dr. G. to have the report today: I expected her to say we would schedule and appointment to review my pathology in a few weeks. It seemed like the information would come as it should, in its own time. And today was its time, and it was absolutely anticlimactic. Nothing in there, she said. Could mean that the ductal carcinoma in situ found at the edges of my lumpectomy was never really the early stage cancer they thought it was; or it could mean that the chemo erradicated whatever DCIS was at the edges; or it could mean the pathologist just f*cked up and missed a spot of DCIS. Who knows, Dr. G. mused. But it doesn’t matter. All that matters is there’s nothing in the tissue they removed. And that’s what we’ve got to live with, to find comfort in, to move forward from.So now what? Mammograms and MRIs, every year. Blood tests. Oncologist visits whenever there’s an ache or pain. Waiting. The risk of recurrence goes down. In ten years. In ten years. In TEN years.

Doesn’t it seem like there should be a bell ringing? A cymbal clanging? A definitive sense of OVER? But there isn’t. There can’t be. We all hope I’m in the 80% of patients who are just fine five years after diagnosis. And we’ll only know as time passes. And so tonight, we celebrate this muted, awkward news. It’s sparkly, but only faintly so, for we are too cautious to believe in much more than a little sparkle. It’s hopeful, but marred with life or death reality most newlyweds have no ability to engage. It’s a ledge. It’s tentative. It’s maybe being able to anchor in ground that is solid, but waiting for a foot to slip over the steep, slippery cliff.

And now, it’s about convincing myself. I don’t have cancer anymore. Maybe we should take on the summer-camp methodology. It goes like this: I sing a line, you sing a line back. You ready?

I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore. I don’t have cancer anymore.I don’t have cancer anymore. I don’t

Maybe if enough of us say it all at once, if we fling our windows open and scream it at the full moon, if we soak up the summer sun and repeat after me, maybe I can start to believe it’s not only a fairytale. Maybe I can borrow enough belief from Dr. G and Dr. Yoga-Surgeon to convince myself I’ll be OK. Maybe we can start to live the life again where the cancer-free fairytale becomes real. Maybe.

 

Pre-surgery

Morphine + Oxygen? That seems OK.

mani-pedi 24 hours post mastectomy? don’t mind if i do!

toe decorations, even!

mother’s day brunch.

how to disguise the boob-uneveness everyone assures me only i see, but which i feel dramatically, drastically, totally.

post-surgery oncology appointment

no malignancy detected! benign nipple core!

we did it? are we supposed to raise our fists?

another appontment….

brother is a nurse. at the next graduation, sister is a doctor, and at the graduation after that, brother will be an oncologist.

 

 

 

 

 

where is the black & red, where are the sparkles and spikes?

I now inhabit a new body. I do not like it.

My left breast is hard as a rock. It is totally numb. It feels like someone stole my breast and left a stack of books in its place, shoved underneath my bruised skin. My body is angry, and the fury is evident in the pooling of fiery red liquid blood-pus in the drains* snaking out of the bandages. It seems like I produce more liquid each time we measure the liquid in these drains, like my body is getting more and more pissed off the less and codeine and morphine there is pulsing through my veins. Rightly so.

I can only wear pajamas. My healthy boob hangs on my torso, wishing for a bra, but there is no hope. The damage done to the right, the drains hanging out collecting the pooling body-anger in the form of reddened liquid, nerve damage that makes my skin feel as though someone is touching it with a fire-hot poker and singing it until it melts away, the fact that my rock-hard-book-boob is a quarter the size and three inches higher than the healthy breast— all of those makes a bra totally impossible. I hate it.

I was prepared you know. Prepared with button down shirts, easy to pull on over a mastectomy and pair with skinny jeans and cute flats for meetings and teaching. That is not going to work without a bra. All those cute artist-inspired, sleeves rolled up boyfriend buttons downs? Please. They allow the healthy boob and normal nipple to scream to the world, “I’m bra-less!” And they also allow the healthy boob to say, “And I’m pissed because I’m alone, and the matchy matchy boob that inhabited the space to my left is now small, hard, fake, and painful.” Excellent. It’s exactly how I wanted to greet the world, with this horrific boob situation that wears itself right front and center on my body.

At the bra store-regardless of which one- it’s all about the perfect rack. Now I can happily rail against the regime of control around women’s bodies. Anytime, folks. But it’s a knife in the heart that doesn’t stop twisting when all I see are perfect racks, matching racks, racks without cancer, and entire stores built on the existence of women with racks who will fit into bras meant to hug the perfect rack. So, right. There is a mastectomy store, a store for folks like me. But at the mastectomy bra store, it’s all about women who are old and who made a lot of money and who are now retired. Everything is seven times as much money. This is a place for old, wealthy women with breast cancer. Everything is breast cancer pink. It smells like old lady. And there are goddamn bows everywhere. I refuse to wear bows on my lingerie. I am not six. I will not wear bows and I will not wear breast cancer pink.  I know I had breast cancer and I don’t need a constant reminder that is breast cancer pink to hold my breasts inside my t-shirt: my library-book expander is enough of a reminder, thankyouverymuch. Yet again, a breast cancer space built for someone else, a space into which I cannot fit. This is not made for young women. Shocking.

They all say we (women who have had breast cancer) are “warriors” who “fight battles.” That’s fucked up in its own right, but even if it were true, where do I find the bras for said warriors? Warriors wear black and red and sparkles and spikes. I am pissed the fuck off. I want black and red and sparkles and spikes. I need some steel-toed boots but more importantly, I need some steel-toed bras. Why is the store for folks like me filled up with ribbons and bows? Where the eff are the spikes?

I hate all the options. I hate breast cancer. I hate pink. I hate bows on bras. I hate bras. I hate shirts that scream to the world, “you only have one nipple!” I hate stores made for old women with mastectomies because they don’t have spikes and sparkles and black and red for young women with mastectomies. I hate bra stores because they are premised on the non-existent perfect rack, which now definitely doesn’t exist, not even in a dream world, on my torso. I hate mastectomy. I hate surgery drains. I hate nerve-damage-pain. I hate tight skin. I hate bruises. I hate shopping for clothing to disguise a body I wish I didn’t have. Just, I hate.

 

***I have two drains that collect the fluid coming out of my surgical site. They are the size of lightbulbs, and they collect tons of fluid. Sammy measures the fluid every twelve hours, and I look away, because seeing them makes me nauseated. Soon, the surgeon or the nurse will decide that my body can handle the fluid without the drains, and then they will yank them from my body, and I won’t be walking around with these bulbs hanging from me anymore.

 

if you give a girl breast cancer

If you give a girl under 35 breast cancer, then you can expect she will need a mastectomy.

If you give a girl a mastectomy, then you can expect she will need to cry buckets of tears, for which she will need a lot of shoulders.

If you give this girl a lot of shoulders, then you can expect she may eventually cry her way to laughter about her mastectomy.

If she cries her way to laughter about mastectomy, then you can expect this stupid-cancer-anthem will make her dance like a wild-woman.

But if she dances like a wild-woman, she will tire herself out and again she will need to cry buckets of tears, and this time she’ll need the phone numbers of everyone you know who’s a young woman who had breast cancer.

If you give the girl the phone numbers of some other young women who have/had breast cancer, you can expect that eventually she will FaceTime one of them, and they will talk for a very long time about the cancer haunted house they walk/ed through, and she will feel so very understood finally. And at the end of this conversation, the girl may need you to help to mark time around her pending mastectomy.

If you encourage a girl with an idea to mark time around her pending mastectomy, then you can expect an intimate boob farewell party involving boob-cake, fuck cancer tank-top decorating, and boob-shaped chocolates.

And that is what happened. So we will be doing boob-farewell things, very soon. We will iron-on FUCK CANCER screen prints to our tank tops and we will be eat boob-cake.

What I am really grateful for, tonight as mastectomy looms and cancer sucks, are the people in my network who know people who know what is up. And I don’t mean people who have been around with me in this treachery (though I am endlessly thankful for you people too!!!), I mean people who know people who have been through this treachery, and connect me to them.

Today I spent almost two hours talking to someone I only just met, Catherine, who is the partner of someone I know through academia, someone who writes me reference letters and who has read some of my work, but who I don’t know incredibly well beyond that. But. Catherine had breast cancer, she’s young, she’s through it, and she’s rocking at life, according to my definition of rocking at life, which is a pretty good definition, and involves: being alive, being healthy, writing some things, and showering the world in compassionate justice.

The point though, is that there are ways we can connect to each other that we never expected, there are people connected to people we know connected to people we know who share the deepest, most intimate experiences with us, and when we share our lives and are open to connection with each other we get something totally awesome. The universe tosses people in our paths who are just what we need- but we have to be able to see them. All too often fear, shame and uncertainty make the water murky and it becomes hard to connect.

I was very hesitant to tell the person who connected me to Catherine that I have breast cancer, but today, I know it was a hundred times the right decision, because well, look what happened. If we could measure how much better I feel now as opposed to before I talked to Catherine, it’d be off the charts. And yet, it took me months to reach out, though I’ve long known Catherine has breast cancer, and I’ve long-since binge-read her blog. I was tentative- I know the person who links me with her through a professional relationship only, even if we exchange emails with emoticons in them. I didn’t want to reach beyond or outside of professional relationships. I didn’t want to mess up the amazing reference-letter-skills of this academic, or dampen good will.

But you know what? F*ck that. We need to do away with the whole “professional” thing where it keeps us- and by us, I mean young women with breast cancer, but also, folks dealing with challenges that would be made easier by dealing with them in community- apart from each other. We young women are already so few and far between in breast-cancer-land, and there are so many grannies with breast cancer taking up space in between us it’s really hard to see through them all and find each other. So I’m delighted to have smashed those kinds of boundaries to let another kind of connection emerge. I still have the professional relationship. Now I just also have someone who’s experience is more like mine, someone who totally gets the unique contours of this experience I can’t quite yet grasp.

I am going to open my eyes. I am going to fling wide open my networks. I am going to make sure I connect people who travel similar roads. I am going to share what’s going on in my life, and soak up the connections. If not, what else is there?  And universe, if you give a girl like me breast cancer, please also give her the people in her network to connect her to the other girls like me with breast cancer. We need each other desperately.

I’m being researched

Everyone keeps saying cancerland will eventually stop being so strange, that eventually I will become accustomed to the smells and the colors and the multiple times each day that “BC Cancer Agency” pops up as the caller on my phone screen. It’s been three months now, exactly. Today’s my three-month cancerversery, and I still find it profoundly strange and destabalizing, despite the fact that I have now amassed so much cancer knowledge I could write a second dissertation on the subject. There are really significant ways my life has radically changed in the past few months, and really mundane ways in which it is utterly the same.

A major marker of the radical-cancer-shift in my life is this little pedometer that I have in my possession. I am supposed to wear it to track my steps per day. I need to do this for seven days in a row. I am utterly incapable of completing this simple task. You see, I am part of a research study, and for some reason they want this information. That’s right, I’m a research subject. The research project is about women with breast cancer and how exercise improves the chemo experience (anything would improve “the chemo experience,” dare I say, which is the worst experience ever), but I suppose the goal is noble- to make having access to a gym and a trainer the standard of care for women with breast cancer in chemo. I could also write some kind of significant article about being a research subject, which is profoundly weird. Wow, I should totally do that. I could be a researcher researching the researchers researching me.

Anyways, back to why it’s so strange, being researched, that is. When I go to this gym space, lots of people are more than a decade older than me, and most of them are more like two or three decades older than me. There’s a bit of horror around my presence in that space, and a whole lot of “you’re so young.” Sometimes women in that space who are, like me, searching to understand why cancer happened, ask me questions like if I carry my cell phone in my bra, because they saw on TV that the cell-phone-in-bra-phenomena causes breast cancer in young women. I feel defensive when this happens, and anyone who’s worked with me in Latin America knows the best location for a Nicaraguan cell phone in hundred degree heat is always in the built in bra of a tank top. I assure you, that’s not why I have cancer.

Other times, reconstruction comes up, and a couple of women have now told me that if they were young like me, they would have had reconstruction, but it doesn’t matter now that they are “old” and “not like me” and “don’t wear tight shirts.” This is such a perplexing conversation to me, especially because it repeats again and again with women older than me who have had breast cancer: what is it they are actually saying? That women over fifty are not sexy? That I need to have breasts to be sexy because I’m young? That younger bodies need to be sexy, and that one must have breasts to be sexy if one is appropriately girly? That I will stop caring about sexiness on the day I turn fifty? That I should wear tight shirts so people can see two breasts? I’m confused. As far as I know, people over fifty have sex, still want to be sexy sometimes, if not all the time, whether they have breasts or no breasts, and sometimes even wear tight (read: sexy, I think?) shirts, and also, there are clothes that are not tight shirts that are sexy, and people without breasts who are sexy, and there are people who have sex with one breast and presumably are just fine. It’s not like reconstructed breasts are right front and center in the sex realm, because they don’t have any sensation, people! Really, now. I find these conversations really interesting, when everyone tells me they made X reconstruction decision, but would have made Y decision if they were young, and so I should consider Y. My reconstruction decisions, though, are another post.

So back to being researched. It’s a quantitative study. Numbers. Rankings. Counting of steps. This kind of research kind of makes sense to me, but I’m constantly perplexed about all the ways in which I cannot be encapsulated as a research subject, into a number of steps per day and a 1-10 ranking of work-out difficulty. The steps, oh the steps. I can’t remember to wear this pedometer, so sometimes I shake it vigorously above my head, until the number of steps on the screen accounts for for my walk to the store, and maybe a little more- I don’t want them to think I’m inactive. Ah, the performance of good research subject- there it is. Here I am, manipulating their data so that they think I approximate what I think they think is “good.” Same with the ranking of my workout: each time when I get off the treadmill, I am asked to rank how hard I worked. I subtly shift– “well, I didn’t feel good today, so I’ll go with a low number to reflect my nausea,” or I think, “my heart rate was really high, so pick a higher number even though it didn’t feel very high,” and the truth is, I don’t know what I’m comparing to, so I just pick a number somewhere in the middle, lest they think I found it hard to exercise on a treadmill! I want to know, how is this accounted for? How is my ambivalence about the pedometer represented? What about the conversations on the treadmill about reconstruction, where are those in the data? Where am I, where is my body, my experience, me, in the data?

My body, my experience, me is not in the data. I exercise because it is supposed to improve my chemo-experience, but nothing is mentioned of the community of people with breast cancer, and the possibility that my experience is better not because I am exercising but because I am able to relate to a whole bunch of women on the same breast cancer trajectory as me. Instead, I am translated into a series of numbers and points. In a multiple-page questionaire, I was actually asked to rank my feelings 1-10, and to pick a number for how breast cancer changes how much of a woman I feel like. A number! I couldn’t answer this question. I literally didn’t know what they wanted. I wondered if they were asking about my femininity in relation to being hooked up to and flooded with poison every other week? Or were they asking about if losing some of the body parts that make me an F on my passport made me feel less like a woman? And what did they mean by woman? I’m still floored when I think of that initial survey, and the assumption that one could answer a question about one’s embodied way of being in the world with a number. How utterly minimalizing.

Then there’s the “volunteers” and “students” and “PhD student researchers.” I can’t quite figure out what their purpose is, these mostly UBC students who seem to do little more than weave between exercise machines making small talk with women as they work out. Sometimes they take blood pressures and heart rates, and maybe they enter data or something, I don’t know. When they come to hover near my treadmill or bike station, I never know what to say to them. Technically, many of them are my peers- MA and PhD students at UBC. However, they would never know this. They never ask what I do. They already know enough about me: cancer. In relation to them, that’s all I can be. It seems I am supposed to ask them what they do, though, so I do, and they tell me they study exercise and physical therapy and cancer. I keep my identity secret, though I’d share if they asked, and insideI roll my eyes a little bit because it feels like they think they occupy a very special student-place in relation to those of us who are merely, cancer. It’s as though they cannot fathom that one of their peers- another PhD student- could ever inhabit this space of breast cancer, could ever be a body with cancer. I am just another body on a machine, my worth is as a research subject, not as a peer who is also a graduate student. I offered the information up once, to one of these people identifying herself as a “PhD student,” and she engaged this information briefly. Then I mentioned I didn’t feel I was getting enough of a work-out with the target-heart-rate, and she told me to trust her, she knew what she was doing, and she knew bodies on chemo, because she had lots of experience. At that point, I shut down completely. Obviously, I know my body best, and I know when I’m not working hard enough, and I know best what I need, chemo or no chemo. And yet, she’s “the researcher,” she knows, and presumably, I, the research subject, don’t know, because I don’t know “bodies on chemo” or have this kind of experience.

Except I am a body on chemo. I live from inside a body that receives chemo, and I am the one to animate and feel this body-full-of-chemo in the gym as well. I have this experience of being a body on chemo. From the inside. I think in fact, the researcher should trust me. How could anyone know better, from outside this body on chemo, what is best for this body on chemo?

And yet, I think I’m supposed to feel grateful. I don’t think I am supposed to complain or wave my critical feminist theory in any one’s face. After all, they are giving me a gym. They are letting me work out under the supervision of a really awesome and compassionate trainer. I think I am supposed to clap and smile and be grateful. What is it about this research project that engenders this particular kind of subjectivity, where I feel a need to perform thank-you-for-allowing-me-to-particpate?

I look, aghast, at my own research. My own participants. My own youth. They said thank you. They must have felt similarly. Thank you, because since we participated in your research project we got to make movies and have access to media tech, and so we now need to perform this same kind of thank-you that I feel I need to toss out every time I leave the gym. I know my project- an interventionist one- had this tendency. I try desperately to engage it in my writing. I think that qualitative work has a better chance at dealing with some of these complexities, though I know I delude myself somewhat in order to continue doing this work.

I cannot fathom any way in which this feeling circulating around and inside of the gym where we go to exercise and provide our rankings will emerge in the data. Quantitative data can’t do that. It leaves no space for my objection. It holds no recognition of the big, fat feeling hovering over each number I provide. It can’t account for how we relate to each other or situate one another as we are so busy learning how to be and do and embody researcher, researched, breast cancer patient, breast cancer trainer…

What’s incredible is that I have about seventy million more paragraphs to write about this… but I need to go work on my actual dissertation research. Youth media production project, I’m coming, and now that I’ve been a research subject, we got some things to talk about!

mammograms

I am totally exhausted. And totally incensed at the pack of pathology reports I requested- and received- from BC Cancer. Certainly, the doctors are awesome. Their reports are complete and full and attentive. I am receiving excellent care.

But WTF, screening technologies. “In particular, the left breast is unremarkable.” “Not seen on mammogram.” “Most likely a benign fibroadenoma.” “Negative mammogram.” “On physical examination, there was no specific discernible palpable mass.” “Mammogram unremarkable.” “Invasive cancer not seen on mammogram.” “She looks well.” “No suspicious enhancing lesion identified in either breast.” “Benign appearing mass.”

So, the incense is twofold. On the one hand, why did my Left Breast cells start morphing, when everyone else’s Left Breast Cells are just as exposed to toxins and plastics and pesticides as mine, at least on a daily basis? But mostly, why all the furor around early detection mammograms? Why’s everyone running around telling me they are going to get mammograms now that I have breast cancer? BECAUSE I HAD A MAMMOGRAM. A NEGATIVE MAMMOGRAM. That’s right. It could have gone like this: feel lump, have mammogram, negative results, go home fine, end up with metastatic breast cancer in a few years, die before 40. That is what would have happened, if I had not insisted on more investigation, even though, as one doc put it, “I’m not concerned.” So don’t go parading around the world like a mammogram is going to save you, or could have saved me, or might save any person in particular, especially if you are under 40. Clearly, early detection mammogram screening is not what is going to get us out of this mess. We need something radically more political.

The only things that got me here was insisting a mammogram was not enough. Which, when you read this section of one oncology report, you, too, will understand why a screening detection system (ie, MAMMOGRAM) that doesn’t work and that isn’t even used to screen young women seems outrageously ridiculous:

“…Given Chelsey’s age and ER positivity, this represents a high risk breast cancer and studies suggest that ER positive breast cancer in young patients represents a unique, more aggressive disease entity compared to their older counterparts. Her risk of recurrence, regardless of axillary node involvement, is high. She will require adjuvant chemotherapy, horomonal therapy with tamoxifen for 10 years…”

It’s an interesting dynamic, because most people think that I know I have breast cancer now- at this young age- because of something like “early detection.” They think I’m a mammogram machine, knowing I already have breast cancer. It is totally random I found that lump, for the record, and multiple doctors said it was not a palpable lump, that that was how normal breast tissue feels. So, I’m never really quite sure what to say to the smile that accompanies the comment, “Well, early detection! Lucky you got it early!” Don’t let age fool you. Don’t let the early-detection-madness fool you. Breast cancer is worse in younger women, like most cancers. Most younger women are diagnosed with more extensive disease than I have, and with the same aggressive markers I have.

If you haven’t checked it out already, please watch PINK RIBBONS, INC.

Tonight, I saw Hunger Games. There are so many parallels. And that post will come, as soon as I grade six more student portfolios from this semesters’ class….

cancer girls group

I went to the Rethink Breast Cancer group tonight. It was weird.

Everyone was so nice. There was probably ten women there, all in their 30s and 40s, and while they were still mostly older than me it was really OK to be surrounded by women close enough in age.

It was just so strange to recognize myself , and to be recognized by others, as part of a community of young women living with and after breast cancer. Everyone else was already through, I guess I was the only one with, and they were all after. They gave me lots of tips about getting through, and were so kind, and offered a completely different kind of support and space than others who have not ever had cancer can offer. Both are valuable.

Truth is, though, I wanted to bolt. Run in the other direction so fast that I’d be a blur, and nothing about that blur would scream cancer. Just a blur no one could read. Being read in the world as having cancer is extraordinarily unsettling. Relative young-ness and breast cancer were the organizing mechanisms that brought this group of young women together to discuss turmeric and lemon water and buying olive oil in dark glass bottles.

I don’t want to be organized near, by, or with breast cancer. And that, my friends, is the sticking point. I don’t want someone to call out cancer to me, I don’t want to be able to answer the cancer call. I don’t want to be recognized as having cancer, doing cancer, knowing cancer, being cancer. And at the same time, I also feel the polar opposite. I want to sit in this room with women with breast cancer and drink tea. I want to stare into their eyes and see what I find. I want to listen to the stories. I want to be in a place where cancer things are made for young women. I want to nod knowingly. I want to trade stories and ask questions of these women who look like me. Who’s lives are kind of like mine.

And also, I don’t want them to ask. I wish it was already over. I squirm when they ask about stage and chemo and wigs. I hate recognizing the knowing look in their eyes, when they learn I’m newly diagnosed. I know they know, and their knowing makes my knowing more palpable. I can fool most people. These are not women who can be fooled.

I desperately want to be there. And more than anything, I wish I could un-do that want.

the view from here.

sometimes it’s best to see the world through a lens. this is what it looks like from over here. they don’t look like my normal photos, but they look like the world now.

cancer buddy

I have a cancer buddy!

I now know two people who have/had breast cancer. And one is the same age as me, with the same thing as me, a month of two ahead of me in treatment. It’s pretty awesome to have a cancer buddy. She’s a friend of a friend, and we connected immediately. There’s more of me! There’s her, and that makes us. Never ever thought I’d be so excited to have a cancer buddy. But hey, I do and I am. Which is great. We can cancer-world-make together. Cancer-buddies are critical.

Today I went to BC Cancer Agency for the first time. Everybody there has cancer. Or they are with some who has cancer. Or they are a cancer medical professional. Everything is about cancer. And that is kind of terrifying. It’s terrifying to say, “I’m going to BC Cancer Agency.” It’s terrifying to walk in the doors, underneath the BC Cancer Agency sign. Mostly because, I am now about cancer. I fit in there. I’m like everyone else here, I am about cancer. It’s a major, disorienting, confusing identity shift.

It’s odd to walk into a place  with other people who are also cancer. When I look at the pairs of people there, I know, mostly, who has cancer. It’s the mother with her daughter. The elderly man with his partner. It’s the one who is old(er). It’s the one who is sick(er). But Sam is older than me. And we are both younger than everyone else. And I don’t look sick! Is this my new tribe? Will I, too, come to dress like them, and walk like them, and inhabit this space in such a way that everyone knows its me?

I haven’t read the book in a while, but Susan Sontag, in Illness is Metaphor, writes about citizenship, and about the double-passport we all carry, where one side is the healthy public sphere, and the other grants admission to illness. To places like BC Cancer Agency, where everyone cancer lives. No one wants to acknowledge they, too, have the flip-side of the passport, the side that means the body is invested, inhabited, taken over by cells that must be destroyed.

In this new country with my newly inked passport, we speak a new language, we have a new way of relating, it’s really a new country entirely. There are words in this new country that floated up to the healthy side, words that sound familiar from a world I was never part of. Estrogen positive. Disease. MRI. Mitosis. Chemo. Invasive. Carcinoma. It’s a country where everyone marvels at my age. They can hardly believe I’m using this passport. The other people, the sick ones, the cancer ones, I think they see me to be lost, wandering the halls of this place of sick looking for someone else.

And so I breathed a giant sigh of relief, when I emailed K, my cancer buddy, and when she responded. She, too, an imposter in cancerland. We won’t dress like all the people here. We will buy hats and scarves off Etsy. We will dress them up with giant hoopy earring that, for once, will have no hair to be upstaged by. We are like a tiny tribe inside this world. I should clarify, I don’t even know K. We’ve had a few emails. We both know my AMIGOS friend, another K. But I feel such an affinity with her. We share entrance together, into this strange, disorienting cancerland.