To you, she who was just diagnosed.

To you, she who was just diagnosed.

First of all, I am angry. I am livid you are joining me here. I am pissed off people are telling you to be positive and hopeful. I am astounded they continue to tell you you will be OK, when really, we don’t know if you’re going to be OK and mostly, what you need is for them to acknowledge you’re in the most unstable, unknown, unpredictable, absolutely terrifying land ever.

Second of all, I love you. Sure, we haven’t spoken in years. Maybe we never even really talked much back when we shared the same space. Maybe we were besties. Maybe our lockers were near each other. Maybe we knew someone in common. I don’t care. Somehow we knew each other. Somehow, you reached out. Somehow, we connected. And I know it wasn’t easy, to reach out, to connect, to ask for help and support and love. For that impulse you had, that tiny glimmer of knowledge you had that maybe your harrowing cancer news would be a teeny tiny bit less harrowing if you reached out, for that enormous risk you took in contacting me, I am eternally thankful.  I believe this earth holds a wisdom deep inside, and I think that you accessed our earths’ wisdom when you reached out, and I am glad you did. Glad isn’t even the word. I am heartened. I am hopeful. I cannot imagine you not having connected. We need each other. We do. Badly.

I’ve learned nothing from breast cancer, but from my cancer friends, I have learned we have to stick together. Together with a young adult here and there, I made it through treatment and I’m trying to make it through the aftermath. We lost our hair together, we cried about our fertility together, we lamented being the only young ones, together. Then there were the friends who I met who could relate, because they were diagnosed before me. There was one in particular, and she was steady. She was still vulnerable and she was still pissed off but she was real, she was present and she was able to show me what could be. It was different than getting it because you were losing your hair at the same time. And it was comforting. I hope I can be like that friend who was diagnosed before me, to you who was just diagnosed. I hope I can acknowledge and never diminish the wild fear, the never ending tears, the incredible misunderstanding.

So you, she who was just diagnosed. Barely 48 hours ago, you were diagnosed.

When you messaged me on Facebook, time stopped. Goosebumps rose. Tears filled my eyes, and my blood pulsed with anger. My heart broke in a million pieces. I had an incredible urge to hold you tighter than tight, to never let you go, to keep you safe and warm inside my arms.  All I could do was call.

Your voice was heavy with fear. In each question, each comment, each admission, I heard myself. I heard my own quavering voice, asking about radiation, mastectomy, hair loss, telling family. Each time another part of the story unfolded, I remembered the familiar creases in the fabric, the familiar not knowing, the familiar grasping at anything, something, anything that made sense.

I’m so glad you messaged me.

To you who was just diagnosed, I wanted to tell you. Advocate for yourself. Preserve your fertility. Ask a million questions. Stop googling. Stop google-scholar-ing. Take the ativan they offer. Stop researching. Trust your oncologist. Call the people you know, the ones who you aren’t sure about, but who maybe had something like this. You need a tribe. Don’t be ashamed to text like mad. Call all the time. Stop googling. Hydrate. Stop researching. Hydrate. Trust your oncologist. Ask questions. Reach out to any person who looks youngish. They are your tribe. We are your tribe.

I am so sorry.

People will say crazy things. They will bring you green powders and tell you to be positive. Fuck them.

People will come out of the woodwork. They will bring you dinners and movies. Love them.

Tell whoever you want. Don’t tell the rest.

Hide under the covers. Ignore phone calls. Only eat ice cream. Watch re-runs of the worst TV shows from your childhood.

Wear cowgirl boots, if they make you feel powerful.

Tell. Don’t tell. Tell part. Don’t tell the rest. You get to decide.

Find the colours the are comforting, and build them into your life. For me, it was aqua and warm, knit blankets.

Get a naturopath, if you like. Listen to their advice, sometimes.

Watch a lot of movies. Distract yourself. Distract, distract, distract.

Color. Draw. Make friendships bracelets.

Go to yoga. Lay out of all the postures, because, chemo. Go anyway.

Crawl under the blankets and cry. Demand your doctors tell you something about their lives before you show them your tits.

It’s a decision for you, and only you, the mastectomy or lumpectomy. Trust yourself. Its a decision, only for you.

Reach out. Keep reaching out. You already did it. It’s so important. It’s so hard. Keep doing it.

It’s not positive. It’s not pink. It’s not happy. It’s cancer. You don’t have to be any of those things. Promise. Fuck them.

So to you, she who was just diagnosed. Call me. I’m here. I want to shake you and tell you, I’m here. You’re taking all the space up in my heart and I can’t stop thinking of you, so please call, and please text. Don’t not contact because you think its too much. It’s too much to have breast cancer when you’re this old. It’s too much to be the only young one. It’s too much to consider mastectomy. It’s too much when every single person tells you to be positive and it’s too much when everyone tell you you’ll be fine. It’s too much to wait for more information. It’s all so fucking much, and it’s not too much to call or text. Promise.

To who, she who was just diagnosed. I’m here. All ways, and always.

Love you.

Me.

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Good Bye Mama Bear, Fare Well.

In the golden days of summer, I met her. “I’m in with the young ones! They think I’m young,” she cried out as she introduced herself. Only minutes into our meeting at the Callanish retreat, she lifted her t-shirt to show me her two round, perfectly matched nipple-less boobs. She’d been sunbathing topless, she told me, sunbathing until they were the perfect shade of golden. I knew right away, she’d be the type with the flow-y skirts, clothing printed in brilliant colours, and charms hanging from around her neck. She was the only one who, though closer to my mother in age than to me, climbed into the hot tub with Ashley and I to stargaze and imagine, to compare cancer notes and tell stories of oncologists and side effects.

Char wiggled her way right into my heart. Maybe it was the steaming coffee she brewed every morning, just as I was waking up. Maybe it was the sliced fruit she left for Ashley and I as we rushed in the morning. Maybe it was the late nights she stayed with me in the art studio. Maybe it was the advice to always bring my inside voice with me on life adventures. Maybe it was her steady belief in the goodness of the world. Maybe it was her ability to disrupt the age barrier. Maybe it was the peace charm she wore around her neck, the charm she showed me as she told me the story of walking on the beach, hoping for peace, when a plastic peace trinket appeared among the rocks at her feet. Maybe it was the way she mothered me, and everyone else, too. Whatever it was, she climbed into my heart and set up camp. In her, I could see who I wanted to be when I was all grown up (even though we all not know that’s never going to happen!).

It was a hot afternoon and I was feeling exhausted and sad for all cancer has taken, for all the losses, for all the forever changes. She came and sat on the corner of my bed, where I was curled up amid the pillows. She rubbed my back and wiped my tears and told me it was OK I didn’t have babies yet, and she told me she knew I’d be a mama someday. She cuddled into the pillows with me and the sunlight streamed into the bedroom and kept us warm. We talked until the words ran out, and after some silence, we laughed and laughed. We laughed at how she heard me singing in the creek, when I thought no one was listening. We laughed at our mismatched boobs, hers nipple-less and mine full of corners as though someone shoved a book under there. We just laughed. And she mothered.

Char cared. She showed me how to care, how to care in the details and in the fleeting moments. Her presence was warm, full of love and laughter, replete with sass and spice. Goodnight, sweethearts, she called as we climbed into bed, our fingers still stained from playing in the art studio. Good morning, coffee is ready, she called up the stairs, always awake first and taking in the morning light from the porch. She evened out the little duo I formed with Ashley, the third point to our little triangle, the other person to whom I felt most connected. Mama Bear, we called her. Mama Bear, she was. We emailed. Here and there. This and that. Always lots of explanation points, smileys, words laced with sarcasm but somehow also full of warmth.

Once she convinced me to go with her to a Callanish movement and meditation event. I went because she was going, and because my recent surgery banned me from Bikram. It was January, and she was exuberant. She asked me a hundred questions, and listened so carefully to the stories I told her. I shared the most precious of news- news that is not yet public- and she was ecstatic. For me. So sick, so ill, and still her grin reached from ear to ear, and she hugged me hard and close. Mama Bear, indeed.

I found out today. The Art Therapist Who Presides Over Acrylics and Feathers and Sand told me. Better than finding out when the offensive email shows up in my gmail, bearing the saddest of news. Char is gone. She died at home. Breast cancer took her. She was not old enough to die, and we the people of the world, we were not old enough to lose her. The gap is wide, the ache in our hearts, the enormous hole she left in the world that will never be quite the same again. And this afternoon I rode my bike, and the tears fell into the wind, and I missed her, and I wished I’d visited her, and wished she told me, in those emails even just weeks ago, how hard it was getting. I rode and I rode, down to the ocean and along the water, and it was raining.

Char, I promise to take my inside voice, I promise to sing in the creeks, I promise to let the world deliver tiny plastic peace charms just when I need them. I am so sorry Char, I am sorry you left to soon, sorry it hurt, sorry your children will forever miss their mom, sorry we can’t have tea again, sorry it happened, sorry the world continues to spin without you. That spin without you is unimaginable, unthinkable, unbelievable. I’m so sorry. I made you this little video, today when I got home from biking. I changed into sweats and dumped out the coffee beans, and it smelled like you in the mornings, the early mornings, making coffee for us even though you didn’t have to, caring so deeply even when you, too, came to the retreat to be cared for. Your care was so healing. Caring about you too, was so healing. Our friendship was so healing, for me, and I’m so sorry you are gone now, gone forever. This is for you, with so much love, from me. Goodbye, Mama Bear, fare well, friend. I will think of you often. Love you.

R/O Mets

I’m scrolling through my phone. Who do I want to know about this? I get to Z, and I don’t want to tell anyone.

I do a search for “cancer.” Ashley, Samantha, Catherine, Tasha, Aimee, Kara, Kristina. They all have cancer after their names, in my phone. Maybe I’m Chelsey Cancer to them too. I pick two. I send out a text. They respond.

No one else knows.

We were walking the seawall. I doubled over in pain, the throbbing radiating out of my sternum. And then it was gone, and I was normal, walking, talking, breathing. I rubbed the bone just under my skin in the center of my chest, the place with no muscle to pad it, the place where my ribs come together. Here, and then not. Painful, and then normal. Weird.

I was doing rabbit pose. I pulled my heels, and then the pain flooded through my chest and I uncurled with a velocity totally unacceptable in yoga. I laid on my back. And then it was gone. I did the next set, and felt just as I did two postures prior. Normal.

Chatting on the phone. I had to stop and breathe. Not too deeply, for that would make the throbbing worse. I pretended to take another call. And sooner than I could have taken a message, the pain dissipated and I went right back to giggle chatterbox.

I emailed our family doc. I don’t really know how to know if this is some normal random thing, or something I should come in for. I’ve had this for a long while now, since the chemo. My oncologist did a PET scan last summer, and it was not cancer making my sternum ache. It was not cancer. She said whether I came or not was up to me, but that I could definitely drop in and she would see me, and I could come in whenever. How are you feeling? I was surprised at how much a doctor could care. I made an appointment. She is sending me off for an X-ray. If you didn’t have a history of breast cancer, I’d send you home. X-Rays are scary enough as it is, since I’m fairly certain my scoliosis X-Rays are what caused my cancer in the first place.

The requisition form reads: acute onset of sternal pain with radiation hx of left breast cancer, on tamoxifen. r/o mets.

R/O METS.

METS.

We are ruling out mets. Mets, in cancer-speak, is short for metastatic cancer. Metastatic breast cancer is what kills. We are ruling out mets, and I have to remind myself we’ve already ruled out mets. Nothing has changed since the PET scan for the same symptoms, last summer. It’s gonna be fine….

I don’t want to tell anyone. No one. I don’t want anyone to worry. I don’t want to see eyeballs fill with tears. I don’t want the pity. I don’t want the swearing. I don’t want the worry. I don’t want advice. I don’t want you to relate. I don’t want anything.

I want to stand next to the ones who know. Who know inside their bodies what it feels like, the ones who have bodies warped by scars and who are riddled with plastic forms holding space where there was once tissue, the ones who know that feeling that feels like a belly full of ice cold water rising up into their chest.

I don’t want to be on the outside of this fishbowl called life, peering in. I don’t want to be on the inside, everyone else peering down into my fishbowl that is void except for my fear.

This is life. Life after cancer. Worry for the future. It is a good day to write a worry on a paper scrap, and roll it up inside my worry doll’s little worry pocket, so that she can take care of that worry that is so real, and so that I can focus on the present. At present, I know nothing except that I’m probably fine. At present, I know I have a long to-do list and a 4:15 yoga class. At present, I know I love Sam and we have great surprises and adventures on the road ahead. At present, I know if I call on them, my people will show up with buckets of love. At present, I know I have to get through this, on my own. On my own, with constant cancer-friend texting.

And maybe with The Song, if I can bear to hear her sing “I think I’ve got everything under control, it’s gonna be fine, it’s gonna be fine” when I feel so wildly out of control, when I’m unsure if indeed, it’s gonna be fine.

And so I scroll through my phone. I still don’t know who to tell. So I guess I’ll blog about it, and then everyone will know. After all, being a bad-ass is about honesty, isn’t it? It’s not about shutting everything inside, it’s not about no-feeling, it’s not about risking it. It’s about drawing the contours of what happened, of what hurts, of how it changed, and being a bad-ass is about making enough space by telling my own story that in the end, others have enough space to tell theirs, too, be it filled with hurt or tears or hope or anger or laughter. Isn’t that what I wished for, the other day, when I attended the Callanish film screening? It is, and I believe we have a responsibility to make this world the way we need it, the way we need it to survive. And so today, I’m doing that. I’m telling. This is what I need. It’s gonna be fine….

A friend’s diagnosis

Imagine me saying “You know, I just thought you shaved your head. I mean, hehheh, your parents are hippies and everything.” That’s what my childhood BFF Rebecca said, yesterday when we talked on the phone for the first time in over a decade, as she reflected on having seen me bald without knowing I had cancer (I know there’s others of you out there, who assumed I’d just shaved my head bald….). She said it, but I could have said it. If I had said it, I would have placed the hehheh exactly as she had, and I would have used the same up turn  at the end of the sentence. Because you see, we sound exactly alike. Apparently, during all those years that were pretty much just an ongoing sleepover at each others’ homes, we developed identical speech patterns. Or so we discovered, twenty years after the fact. It was uncanny. In her words, “I feel like I’m talking to myself.”

We were talking because 24 hours earlier, another close friend from those years was diagnosed with cancer. How weird, right? I kind of thought everyone connected to me was safe, like I took one for the team and the statistics would just never allow for someone I know to also get cancer at this age. But, as a cancer friend once said, “Haven’t you learned we’re not statistics yet?” And so, here we found ourselves, on the phone after all this time, though she sounded exactly the same as she did on the phone twenty years ago. Which must also be how I sounded, and how I sound. But more to the point- we have someone else to support. Someone else, young, body contaminated, facing stats and scary surgeries and the dreadful chemo. And so we lapsed into our old patterns, into conversation that could only be described as the most familiar.

I am so heartbroken for the other friend, D. Rebecca is so speechless. She will make it through, but D will be lonely. Lonely. Cancer is lonely, I explained to the childhood BFF. No one understands, no one we know has had cancer (except, of course, me) and no one knows what to do. And as we talked about being alone and being lonely, about getting the other friend wigs, about how f*cked the environment is, about how our parents are just as weird as ever, about that one camp counsellor who turned us vegetarians as children, about cancer-lonely, I realized. I realized cancer sometimes has to be alone. I realized there are people, like Rebecca, making plans to visit the other friend and who care with all their hearts and souls, people like Rebka who would literally do anything to wipe it away, but still. Still, cancer is lonely, because there is no way to wipe it away. It is writing on the wall, writing with a permanent marker that can’t even be scrubbed off with sandpaper.

D is at the very beginning, the time when the words roll around in the mouth like they don’t belong, so big and awkward that they are unspeakable. Rebecca will love on her, I am sure of it. I will stay in touch. A childhood friend, turned cancer buddy. But I know, things will wane. D will get through treatment, and the meal train can’t go on forever. The visits can’t go on forever. Friends cannot support forever. They will get D through this chaos, this madness, this challenge. They will make sure she has chemo buddies and movies and meals. I know because Rebka told me so, in the same voice I would have told you so, and that voice is so close to my own I can do nothing but trust it. How fortunate I feel to have reconnected with this wondrous person, this person I spent most of my childhood with, this person who sounds just like me, this person who now must be protected from cancer, now that both her childhood friends have been diagnosed so young. But I also know, that this won’t be over for D when her hair starts to grow back soft and fuzzy, and I know it won’t be over when she returns to work, and I know it won’t be over when everyone else is breathing a sigh of relief because it’s over.

It likely seems pessimistic to you, reading this. But it’s real, the loneliness that is cancer, the solitude that is the aftermath, the heartfelt sadness and the physical pain that lingers are real. I know that afterwards, when she is looking aghast at the life that has crumbled, that the friends will be tired. They will want to keep giving, but at some point, they will be tired. And they will need to step away to nourish their own bodies and souls and spirits, and by definition cancer does not nourish, cancer taketh. And then D will be there, alone as she really is even when they’re there, and the din of distraction will wane. And that is cancer. D cannot step away. She can’t opt out of the heartache or the doctors appointments or the lingering side effects. I cat yet tell her this story, but that is why my heart is broken for her. That is why my eyes fill with tears for her. It is terrible to endure the treatment, of course. It is the worst when hair falls out, when skin turns dry, when the body aches. And the enduring solitude is expansive, even as the body heals.

Tomorrow afternoon, I’m going to go down to the beach, where the water meets the forrest. I’m going to sit and think of D, and I’m going to ask the earth to take care of her, and I’m going to hope she feels the ways we are interconnected. Because, we must. We have friends, the best of friends, but they can only accompany, and they can only sometimes witness. We cherish them when they do, especially those old friends like Rebka who can pick up the phone and ask all the hard questions, and who can really listen and feel our responses. And sometimes we must be alone, sometimes there are no witnesses, sometimes we must be where the ocean meets the forest and where ultimately, we can heal.

the language we speak

There is something so profoundly powerful about being in a room four other young adults who have had cancer and two women who really get it, and listening. It’s not just us, listening, either. It feels like all the other young adults who have ever sat in that circle, under those skylights, around beautifully prepared food are listening, too. Listening to the rain pounding on the skylights. Listening to the silence, to the quiet on everyone’s lips, to the way we sit together and wait until someone decides to speak. Tonight I went to the young adult group. I hadn’t been in a few months, because I’ve been teaching. But what a relief it was to go tonight.

We shared stories and sorrows and the way cancer is met by utter mis/understanding by… well, by the world. As there always are, there were tears and tissues and times when I think all of us had to sit on our hands to keep ourselves from reaching out and gathering the other in our arms and holding them and whispering in their ears “It’s all going to be ok.”  The thing is, this is a crowd that is way too in touch with what happens when it isn’t OK, way too aware that its not always OK, way too weary of believing in OK when its so consistently not OK, because cancer isn’t OK and how are you supposed trust there is even an OK during, or after cancer? It’s so interesting because I can know and believe and want things to be OK so profoundly for each of those other young adults. At the same time, I can be so completely unable to know that I will be OK, and also so completely aware that someone telling me it will be OK is so entirely useless. Those words fall on my ears like oil poured into a glass of water. They don’t stick. They simple cannot get inside of me, those words. And maybe that’s why the group is so incredible. No one says “its going to be OK.” They just listen. And then we listen back.

I thought I would write about all the things that we laughed about after all the tears had been shed, about the way we all know the stand-out characters that make the Cancer Agency feel like you’ve tumbled down Alice’s hole into a warped Wonderland, and about how we all avoid hand sanitizer because it reeks of the alcohol swabs that were used to clean our ports pre-chemo. But I won’t. Those stories are ours. They are little treasures we can share, treasures that we don’t have to give away. They are common touchstones, ways to identify camraderie in a world in which we feel otherwise so lost, so alone, so without others. I want to hide those stories, hoard them, protect them, save them. I want a whole jar of them to keep to myself and admire, a whole jar full of silly experiences and weird encounters that are common in this tribe. A whole jar of stories that remind me I am not alone, a whole jar of stories that remind me I’m not the only one, a whole jar of stories that remind me there are lots of others who can grasp these feelings, those worries, this knowing.

When I was a young, my childhood bestie and I had our own secret language. We thought it was amazing, and it really kind of was. Rong-e-bong-e-cong-cong-a a-nong-dong Cong-hong-e-long-song-e-yong. But what was really special about it was that it identified us to each other, it gave us a way to make our very own world, it was a special passport to our own little make-believe world that we ong-spoke into reality, into something all our own.

The stories I want to stuff in my jar and tuck away for safe keeping, the anecdotes and smells and experiences of all those weird characters, the way we all know about that one really weird porter on the fifth floor- it is our language. It is our way of connecting, of showing each other we understand, of being not alone, of knitting reality together from the broken shards of what feels impossible, of world-making in this absurd Cancerland. It is a language, just like Ong was. It is a language, and it is ours. It is such a relief to speak this language, and have it recognized. It is such a relief to hear this language, and identify. It is just a relief that we can share this writing into being, together.

Judith, of course, wrote something about this. And it is brilliant. I find such comfort in her words, just as I find such comfort in the discursive practices of tonights’ young adult group, in our language of being, making, and social existence, in hearing others call, in answering that call, in the social definition of being together as young adults with/out cancer, in the recognition of my existence in each of them, and their existence, in me.

And by Judith, I mean JB folks. Judith Butler.

Language sustains the body not by bringing it into being or feeding it in a literal way; rather. it is by being interpellated with the terms of language that a certain social existence of the body first becomes possible. To understand this, one must imagine an impossible scene, that of a body that has not yet been given social definition, a body that is, strictly speaking, not accessible to us, that nevertheless becomes accessible on the occasion of an address, a call, an interpellation that does not “discover” this body, but constitutes it fundamentally…….. Thus, to be addressed is not merely to be recognized for what one already is, but to have the very term conferred by which the recognition of existence becomes possible…” (Butler, 1997, p.5)

Butler, J. 1997. Excitable speech: A politics of the performative. New York, Routeledge.

the day we sang to cancer, fuck you

I sing often. By myself. In the car with the windows rolled down. While I cook when I’m the only one home. I can sing in a group, silly camp songs that have little or no melody and are mostly screamy-shouty-silly. And sometimes when in a large group around a campfire, but only when there’s lots of others to carry the tune and I can mumble along under my breath. And that is it. Never in public. And so when we talked about me and some cancer buddies singing the chorus of the cancer-song I wrote with my friend Kate, I was of course really worried about my never-in-public singing voice.

Except today, I sang loudly and you could hear me and it was awesome.  Today we recorded the song. It was complicated and generative and full of emotion and awesome. We left Vancouver early, and pulled up to a house by a creek out in Coquitlam. In the basement recording studio they were setting up drums. Bit by bit, they worked through each line, practicing. The guys on the drums and bass, Kate on her guitar and singing, me in total disbelief that these people were actually recording this story in music, giving voice to my experience, listening and carefully crafting sound so it can be shared. I mean seriously- when does that happen?

On our way over, we discussed the way some folks raised their eyebrows about the swearing in the song. “It takes away from the message,” they explained, “It will turn people off.” Others worried we might offend health care providers with the chorus, which goes “And they took my left tit away like they didn’t even give a shit/and I’m the brink of a fit of rage ’cause all I’m surrounded with is breast cancer pink.” You know what I think? I think people are responding to the voicing of breast cancer as angry more than the expletives or even the “they didn’t give a shit.” I think it’s uncomfortable because its too close to the skin. It cuts too close to the heart. It’s too painful to think about. And so people react.

It certainly is my experience that they didn’t give a shit- literally, they cannot, because it’s not their breast immobilized and cut off. It’s not their breast that becomes hospital trash. They didn’t save the majority of my breast, the parts they didn’t use for the pathology. They trashed it. A cancer-buddy informed me today of a scandal in which hospital trash was used to generate heat and air conditioning for Californian homes. I could maybe get on board with heat. But air conditioning? No. Even if the doc has the best bedside manner ever and even though I certainly feel so cared for by them- they still cut into my body and removed a part of me and it’s gone forever, and probably a lot of it got thrown in the trash, and maybe its in a landfill next to used computer screens and broken wine bottles, and maybe there’s seagulls eating it, and maybe it is being burned to heat some Northern Californian home. That is not caring.That is participating in a system that doesn’t care, and even if you’re participating because you want to cure breast cancer, its still horribly pathologizing and its still not giving a shit. If it was testicles we were talking about, they would have found a way to save them by now that actually works, not like the half-assed attempts at lumpectomies that result in lower survival rates among young women, and that provide no comfort at all, especially if you’re under 40 and have no way to access any kind of reliable screening. Giving a shit would be answering my question when I ask how much longer until they get the needle out of my breast, and giving a shit would be offering me a screening MRI because my cancer was undetectable without me having to ask. Giving a shit is almost impossible in the system.
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Anytime any of us says anything negative about our doctors, or anything that’s not “they’re amazing they saved my life” everyone gets up in arms. There’s such a need to glorify doctors, and patients are supposed to be grateful. It’s gendered. An angry man would be more appropriate. I should instead be grateful they saved my nipple, grateful they reconstructed a lump that kind of matches the other half of my chest, grateful grateful grateful. I am of course grateful to be alive, but the purpose of the song isn’t to make those doctors feel OK about their work. Their paychecks should take care of that. The song is supposed to give voice to something else, someone else. There’s not words for cancer-trauma, it is especially word-less, especially unable to be metabolized in language, especially deserving of a giant fuck you. When I asked a fellow young breast cancer buddy if the swearing was OK, ending the question by explaining that some people had reservations, she retorted, “These people with reservations have their left tit intact? Then they get no say. It’s totally appropriate.” Obviously. The song is supposed to shock you into rethinking your assumptions about breast cancer, its supposed to queer this exhausting happy-happy narrative, its supposed to make our experience visible.
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And yet something felt weird, a little raw, kind of embarrassing as we sat together in the dark basement studio, and the sounds came together in the most awesome of ways. They appreciated the words, these musician guys, I think. But they were guys, they haven’t had breast cancer- or any cancer- and I doubt they’d call themselves feminists. We slipped upstairs for some tea. Kate felt it too, acknowledging the challenges in doing feminist work in a studio full of men. The breast cancer narrative is so entrenched and so gendered. It’s hard to queer that pink-ribbon story, hard to weave a breast cancer experience defined by anger and frustration into public discourse. I took great comfort knowing Kate felt that too, and that she’s been doing this kind of queer and feminist work for a long time, and sometimes it’s hard, but it’s still insanely critical, so important, good and hard work. You gotta look up to someone who rocks out like that- both literally and metaphorically- so hard. And so we took a few breaks. She’s been close enough to breast cancer that she can grasp the horror, see through the bullshit, and laugh at the right moments. Being able to both grasp the horror and laugh at it is both totally unique and incredibly important.

And when it was time, us cancer girls gathered around the microphone, and tentatively at first, we sang the chorus. And then again. And then again. And then again. Until we sang it so many times there was no more tentative, there was just lyrics on a page and a fuck you cancer feeling and us singing. It was awesome. And I sang in public. Or public-ish, at least.

It was all of the emotions, today in the studio. I was excited to be part of the process, I was nervous to sing, I was intimidated by these amazing musicians, I was in awe of the music, I was sad about the cancer, I was giddy to hear my story sung, I was pissed off about patriarchal capitalism, I was reflective about this whole long year, I was grateful to have such creative-earth-shaking friends. As the music and the feelings filled the basement studio I cried because it was awkward and the boys didn’t get it; I cried because cancer sucks so hard; I cried because when I heard all of our voices together- my voice and Kate’s voice and Kara’s and Kristina’s voices in the second to last chorus- it sounded like an entire cancer-chorus and I felt so not alone; I cried because it’s such an incredible thing to have this story-song and I’m so intensely grateful to Kate and the boy musicians and Kristina and Kara for making it happen.

We did it. It was awesome. You will hear it soon. I love it. I will keep listening, and the song will continue to be a generative source of healing, comfort, and awesome. Here are the four of us, after singing our hearts out in the chorus. It was incredible, and it was healing, comforting, and awesome. Oh, and we’re fucking pissed off about breast cancer.

pissed off

I thought it was The Onion

When I saw this picture, it felt unreal. It felt surreal. It felt impossible. This picture popped up all over Facebook on the one year

10383718_10152714513382708_868238968349762656_oanniversary of my very first lumpectomy, the lumpectomy that was for a lump that had only a teeny, tiny, itty bitty, percent chance of being cancer. Ha. This picture doesn’t even seem real. It seems like The Onion. Doesn’t it seem just totally impossible? I think the critique of pinktober, of breast cancer pink, of the horrible capitalist monopoly surrounding breast cancer is pretty accessible, totally public, and mostly part of general knowledge. Like you’re a person in the world, you’ve probably heard the critiques. If you haven’t, please start here, and don’t stop reading until you’ve also watched Pink Ribbons Inc. And then commiserate with me about how insanely ridiculous it is for Komen to partner with a freaking FRACKING company. I mean come on, next to pink capitalist crap, fracking is another major issue that’s gotten a ton of publicity lately and that is basically embodies the evil of all capitalist humanity. It is surreal, unreal, unbelievable, impossible.

You know what else is surreal, unreal, unbelievable, and impossible? You know what else belongs on The Onion, not on my body? This fake, no-feeling, rigid excuse they call a fake breast that people herald for it’s perkiness and perfectness. A few weeks ago, some folks from Callanish helped the Art Therapist Who Presides Over Feathers and Sand and Acrylics make me a new breast cast, one that captured this thing on my chest, as it is now. And today I stared at the sculpture that had been sitting behind a dark blue curtain, waiting for me. I looked it straight at it, that replica of my chest in paper machet, and was stunned into total disbelief. Only for a moment, I could recognize my own body as actually having been through cancer. I could only barely believe it for a second. For one second, I could actually believe I had cancer, I could I actually know my body was forever and totally changed. It felt real and impossible, like I was seeing double, like my body was a mirage from the inside out, like I couldn’t fit into myself. They’re connected though, the old breast and the new one. The old breast is off in the land for breasts who died too soon, with all the other mastectomied breasts. But my heart is still pumping blood through the skin. And maybe there’s a connection. Maybe in the mirage, the double vision, the not-fitting, maybe they can talk to each other, be together, become together. Maybe the body accepts and loves the space that once was, the space that kept the cancer inside and away from the rest of my body, the space that sacraficed itself so I could be well. Maybe. It feels weird, but maybe a little less like it could be in The Onion.

And then I went to Blenz Coffee, and they served me a latte in the most awful hot pink cup with a horrible hot pink top and I lost my coffee craving. Another young adult with another kind of cancer recently told me that they felt jealous breast cancer got so much attention. But you know what’s weird about that attention? It’s intensely focused on making my actual breast cancer experience, you know, the experience I had while I had breast cancer, totally invisible. There’s signs all over about a “future without breast cancer,” which is great and all, but the only outcry about fracking funding cancer research is on facebook. It’s so ironic. And then of course, there’s the endless signage about how to avoid breast cancer, passed out on hot pink notecards at the grocery store and hanging around tin cans collecting change at the bank, signage that imagined I am not there. Signage that clearly states instructions for not getting breast cancer: lift weights, eat salad, don’t get wasted every night, stay skinny. Signage that says nothing about fracking. Signage that totally denies my body, denies my experience, denies that I did all those things and still got cancer, denies that I even exist. Signage that speaks to everyone else but those of us afflicted with breast cancer, during breast cancer month. Signage that looks right past me. Signage that makes me invisible. And signage that writes me out of reality, writes some warped version of history without my story, writes a world that has amnesia, a writes a world in which there are fracking drills for breast cancer even though fracking causes breast cancer. And that is why I hate all this pink stuff so much. Sure, it’s political. But it’s also horrendous and so unnerving to walk through the world during a month dedicated to the illness that invaded my body and feel so totally and completely invisible, impossible, and ignored by the “awareness” celebration for the illness that invaded my body. I am both everything and nothing, in relation to the breast cancer awareness month. It’s f*cked.

Breast cancer “awareness” is f*cked. We need a cure: we ALREADY ARE aware. We need people to know what it feels like to be in two bodies, to be disenchanted with the way your body takes shape, to wonder what if. We need people to see double, to feel triple, to move big. Tonight one of my besties A photo-3dropped by on her bike. She peed, and she asked what I had written on the mirror in lipstick. She asked if it said I AM OK. I was taken aback. It was merely a reminder to take my tamoxifen, and I’d scribbled TAMOX on the mirror behind which I keep my face cream and toothpaste. But things are not always as they seem. There’s always a double meaning. Pink ribbons make me- a breast cancer survivor/patient/something- feel invisible. Breasts beneath shirts may be merely plastic ridges filled with saline. TAMOX might actually mean I AM OK. And TAMOX meaning I AM OK might be really hopeful. Can you see it? Can you see how it could mean either TAMOX or I AM OK? Sometimes, nothing is as it seems. That is today, that is tonight, that is Pinktober, that is cancer.The breast isn’t as it seems, the cancer isn’t as it ever seemed, the casts are not as I see them in my mind, the lipstick doesn’t read to her as it does to me. That is today, that is tonight, that is Pinktober, that is cancer. I love that she didn’t see TAMOX. I love that she saw I AM OK.

You know what feels really good, like f*ck you pink everywhere, f*ck you fracking, f*ck you people who write me out of public discourse, f*ck you cancer? The song. Kate’s song. On repeat. Adnauseum. All the time. So that’s why I can’t hear the phone or the doorbell or the FB ping you sent. I’ll give you a free preview. The chorus goes: Cause they took my left tit away/Like they didn’t even give a shit/And I’m on the brink of a fit of rage/Because all I’m surrounded with is breast cancer pink. When the world doesn’t have what’s good enough for us, sometimes we have to make it. Or our friends do. We have to make the music that will heal our souls and tell the stories that no one else is telling. Because clearly, we do exist. Brightly, wildly, we exist.