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

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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.

chasing life: sex, gender, cancer

Lately, I’ve been following abcSpark’s new show, Chasing Life. It’s about a young woman diagnosed with Leukemia at 24. It’s about her experience: what’s happening, who she tells, how her family and friends handles her illness- in both awesome ways and shitty ways, the cancer-friends she makes, the insane complications and heartbreaking moments. It’s got its fair share of problems I could dissect as someone committed to a feminist analysis of media texts…. but as another young adult with cancer, I love it. They get a lot of things right- the anxiety about telling, the over-caring and the under-caring, the fertility preservation issues, the total crap that chemo is, the lifelines that cancer-friends become even though you’ve known them for such a short period of time, the weird and hopeful naturopathic treatments.

One of my very own friends who has really ridden the cancer roller coaster with me, someone who has come to almost as many appointments as Sammy, who has heard the good, gross, and horrific, who has shown up always even though it was hard, has been watching Chasing Life alongside me. I did have to suppress the familiar feelings of critical engagement when I first saw this scene, but I did suppress them, if only so I could stay engrossed in the story, until that very own friend of mine who’s ridden the cancer roller coaster with me brought it up again.

The scene is this: In episode 8, the group of cancer-friends get together. One of the young women- one portrayed as always very sweet, with a scarf on her (presumably) bald head, is about to live out one of her life long dreams. The cancer-friends gather in a strip-bar. And suddenly, we see this always-sweet-always-scarf girl on stage, wearing a fabulous and luxurious, long, blonde wig. She’s pole-dancing. She’s taking it off. Because we know she has cancer and is so sweet (and presumably innocent because she’s sick) her pole-dancing is pretty much absolutely adorable, her friends are thrilled for her, and this one rich, white-boy cancer-friend who supposedly makes all his cancer-friends’ dreams come true with financial gifts (he paid for the main characters’ fertility treatments, anonymously, and took another cancer-friend on a trip he’d always wanted to go on pre-death) shines as the humble but sweet and so generous star- he arranged  this opportunity for the sweet cancer friend to pole-dance. And then Ms. Stripping/Pole-dancing does the thing that makes us love her even more: she whips off her wig to cheers of “Take it all off!!” You can watch it here on Youtube- it starts at minute 18. 

OK. So my first thought, when I watched this scene, was- YES SHE IS SEXY. YES SHE CAN BE SEXY WHILE SHE HAS CANCER. YES SHE WANTS TO BE SEXY WHILE SHE HAS CANCER. I was happy to see a representation of cancer as normatively sexy, and excited to talk to my cancer-friends about how cancer = not sexy, and there was this Chasing Life moment to talk all about sexy, cancer, gender, desire. So what does it mean for a young woman with cancer to want to be looked at, to want to place herself in a situation where others see her as sexy, to dare others to see her as a sexual being? What does it mean to be able to acknowledge those kinds of desires? I mean so many people have them and ignore them, and here we have a media representation of a sick girl throwing her sexuality in your face in a normative way, in a way we are accustomed to seeing healthy, hot, hyper-sexualized young women?

My dear appointment-attending-always-showing-up-even-when-it-was-hard friend, though, she called me and was horrified at how this young woman could only be tentatively sexy because she’s the “godly” and nun-like character, the one who could do no wrong- she does embody the typical good-girl persona, the one who could never do any wrong. There is a serious problem in our world, where young women’s sexuality is persistently denied, framed as dangerous, racialized, and otherized. We police girls and young womens’ bodies with school dress codes, decisions about what’s “appropriate,” and regulations and standards that dictate how young women should move, who can be sexual, how whiteness and upper-class-ness correlate to a latent but private sexuality. This scene played into many of those  stereotypes.

Yet, I’m not ready to give it up. There is a way in which in contemporary media culture, sick and disabled bodies are not sexual bodies. Sick bodies are rarely cast as desirable bodies: rather, they are to be taken care of, they need help, they are infantilized when everyone else knows what is better. Sex is rarely discussed by doctors, though sex conversation runs rampant in young adult cancer circles. There’s an undercurrent, but when have you seen a body so medicalized as bodies are when they have cancer, also take up normative representations of what is sexy? Rarely.

It’s an interesting conversation for me, because sex, gender, and cancer all circulate around the body. As someone who has had breast cancer, my cancer feels like it embodies all of the conversations surrounding gender, image and sex in new ways. I am mostly left with questions, as I rethink this sexy pole-dancer scene. Sure, I might have liked it more if she had some kind of sex desire that was totally non-normative. But would I have even recognized it as sexy? What I can definitely recognize as “sexy” is a girl dancing on a pole, even if I can critique why that particular image is really problematic.

So then, what happens when the infirm body, the chemo-body, the pale body, the cancer-body takes up pole dancing? What about when she owns a secret desire? What about when its arranged for by a young white guy who ends up looking like a hero? Do we all need young, cute, rich white boys to manifest our desires, put us up on stage? Is it his gaze that makes her sexy, his acknowledgement that she looks good, or is it that she actually looks good? Why is he so prominent? I think part of what seems really fascinating here is the relationship between this wish-granting rich white cancer boy friend, and this young angel-like girls’ desire.  There’s something really sticky, really powerful, really concerning, really shocking, really hopeful-  about a girl body with cancer doing a sexy dance in front of her cancer friends.

Lots to think about tonight, about the intersection of sex, cancer, sexuality, dancing bodies, gender, cancer friends, fake breasts, media images and representations…

zombie babies

In my fridge, there are boxes and bags filled with syringes, glass capsules of powdery hormones and saline solution, alcohol rubs and these tiny little medicine mixers called Q-caps where I concoct medical solutions from different viles before injecting myself in the belly. It’s literally a science experiment, and I’m the mad scientist shaking, injecting, pinching fat, tapping bubbles out of the syringes.

You see, chemotherapy often results in decreased fertility or sterility in young women. There’s basically a black hole of research when it comes to very young women and breast cancer, particularly in terms of fertility and chemotherapy, likely because most women with breast cancer are over 45, and most of those are over 55, and so of course, most of the research dollars go to that bulk group. Most folks are not frantic about baby-making, because they’ve already made babies by the time its time to use modern medicine to kill all dividing cells in the body. Cells that make eggs are cells that divide. Cells that chemotherapy kills.

And so here we are. Sammy and I were just waiting to think about what city we’d raise our bilingual, bicultural, rockstar babies in. We were waiting ’til my medical chart would read “Dr. Chelsey” for the birth of the newborns. We had a vision, of these bilingual babies and the home we would decorate with bright colors and the pups that would roam the land around us and the professor and composer/musician jobs that would fill our bank accounts with enough money. And we were so close. Close enough to smell the soup simmering on the stove and close enough to hear the symphonies and concertos filling our home with sound and close enough to think about which publishers might turn my diss into a book and close enough to imagine the next projects in our research and musical careers.

That was life B.C.. Life Before Cancer. Then, now, there is life A.C., After Cancer.

In this life, we freeze embryos. We are part of a special program where fertility preservation is seriously subsidized— all you need to do to get affordable, nearly free IVF is get cancer.

Some people think I shouldn’t be so public about this. That getting ultrasounds of my now-swollen ovaries every 48 hours, and that injecting my belly fat with three different needles every night is private business. But you know what?

This cancer is not private business. Cancer is about plastic and toxins and the stunning realization that the careless way we treat our environment, the world, others, profit, capitalism is manifesting in my body in ways that I cannot control, manifesting in such ways that it could eat its way through those dreams, cutting away the time I needed to publish more books, to paint living room walls bright blue and vibrant red, and to cuddle in front of the fire with tea and popcorn and lovers and best friends. So it often seems like an old and tired argument, but here it seems apt. The most private, what happens inside our breasts, breasts who’s image is torn between the pornographic, the sexy, the motherly, is absolutely political, public, and practically bursting to be discussed, to be chewed over, to be written about thoughtfully, carefully, complexly. Cancer is most definitely a public issue, a political issue, and especially when it comes to breast cancer in very young women like me. Its wildly hot, insanely unjust, and urgently in need of radical, responsive attention. It’s an over-boiling zone, where environmental justice, feminist theory, cultural studies, globalization and toxins, biology and fertility are in red-hot collision, producing sparks and flames and smoke.

So yes, I think its absolutely appropriate to write about this journey through heartache, where the dreams shatter and the babies become not babies, but frozen embryos. Neither dead nor alive. Which makes them ZOMBIES. That’s right. The doctor told me today it looks like we’ll end up with about fifteen embryos from eggs in my oh-so-swollen ovaries. And those embryos will be frozen in time. Neither dead nor alive. How odd it is, to think we’ve come to a place in the world where we can stimulate ovaries to over-production, harvest them from a woman’s body like apples from a fall tree, and fertilize them with the sperm from her man lover, and then hold them indefinitely, suspended in time and in ice, until there is a uterus, probably not mine, that they can call home for long enough to grow and become human, alive, long enough for them to grow eyes and ears and hair and a pair of lungs. Inside someone who is not me.

Not me, because I will most likely be on tamoxifen for 5-10 years. 10 years! We know young women with estrogen positive breast cancer do better when they stay on tamoxifen, which inhibits estrogen production, for ten years, instead of the standard five. Some young women go off this drug to get pregnant, and there are very mixed reviews about this practice. On can find studies arguing its better to get pregnant and that pregnancy decreases the rate of local and distant recurrence in young women, and one can find studies arguing the local and distance recurrence rate skyrockets with pregnancy. Recurrence is a really big deal, because its mostly the second time women get breast cancer, in the form of a recurrence, that they die. Once breast cancer spreads beyond the breast and lymph nodes to the bones, liver, lungs, or brain, where breast cancer cells like to set up shop, there is no cure.

So, I hope someday our zombie babies, the frozen embryos to be made from my swollen ovaries, will take up residence in the uterus of someone I love. It’s really so much to ask, for someone to give up nine months of their lives, hold a baby in their bellies, and then hand us the baby upon birth. We are fortunate that maybe a sister or two, and maybe a friend might be able to donate their warm and healthy wombs. But who knows if that will work out, with visa laws and flight-bound-embryos… that said, we’ve been through enough visa and border trials that if anyone can make a zombie baby into a real baby across borders and with visas, its us.

I know lots of people struggle with fertility: that is evidenced in the swanky service-for-pay offices the fertility doctor inhabits, and that it’s not easy for anyone to have swollen embryos. Many people have reminded me of this, and yet this, I think, is distinctly different. It’s not the ups and downs of living from a human body, the necessary but frustrating tribulations of human imperfection. It’s cancer, it’s deadly, it’s caused by human malfunction, human abuse, and environmental trauma. So I feel some solidarity with the women crowding into the fertility office, hoping to make a baby and throwing all those carefully socked away funds at their baby-dreams. And also, I feel nothing like them, I feel entirely out of place.

Lots of folks deal with devastating illnesses, infertility, disabilities, challenges. I don’t think its worth comparing. I know it’s entirely unhelpful to think about who has it “worse,” and what “better” is for different bodies. What I know certainly, though is this. I am insanely, imperfectly, horribly jealous of everyone without cancer. That feeling is ugly, especially in the face of “cancer is a gift” and that feeling is rough on the ears, especially when folks need me to affirm I will be OK. Jealousy is harsher than sadness, anger, and spite, and it speaks to the kind of relationality that allows us to think about who we are, we were, what we might become. Jealousy makes painfully clear that we are all implicated here, knotted together in a web of toxic, plastic capitalism. Jealousy is the feeling of capitalism.

I have no idea if I’ll be OK. And what is OK, after all? Is OK just alive? Is OK a PhD? Is OK fear of recurrence? Is OK avoiding terror of cancer in the other breast with a bilateral mastectomy even though the medical community assures me it won’t improve my survival? Is OK a baby in someone elses’ belly? Is OK a house with colorful walls? Is OK breast cancer in my bones and a prognosis? What percent is OK? Is OK having a few breast cancer buddies who get it? Is OK when my BFF comes to visit and I wish she’d never leave? What prognosis is OK? How is OK a percent chance at five-year survival?

So for now, zombie babies. We’re making them. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is.