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.

>>>>

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.

>>>>>>>>

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.

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

anniversary 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 dropped 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.

party in my body

The first time I went to yoga, just shy of three weeks after my mastectomy, I felt like I would never be able to do yoga again.

I thought I would never be able to lift my arms. I thought I would never be able to lay on my belly. I thought I would never be able to swing my arms into twisted up postures or hold my ankle in my hand and kick high above my head. I thought I would never be able to do these things again, ever. Just before the halfway mark of this yoga class I went to, I gave up. I couldn’t do anything. Though I was advised to take six weeks off yoga, I didn’t heed the advice: after all, I did yoga through chemo and I always adapt, or interpret doctor recommendations, anyway, and who likes rules like that?

But. I had not realized how you pretty much use your pec to do everything in yoga, and I couldn’t move my left pec muscle without terribly aching pain. My side ached, my arm hurt, everything was stiff, and I couldn’t do any of the postures. I walked out in tears. Dr. Yoga-Surgeon was there, and when I left she stopped making evil eyes at me for going to yoga before I was “allowed” and followed me out of the studio to reassure me that leaving was the best course of action, and that I would be able to do yoga just as soon as my body had a chance to heal the internal trauma. How kind of her. I half-believed her. I was horribly embarrassed. It sucked.

But now, the glory! Turns out the doc was right about waiting for my body to heal. Now, I can do many of the postures, almost as easily as before. Sure, I still have to modify certain poses because things are still very tight and everything gets very sore very fast, and I can’t lay on my belly, but every time I can do anything, or even part of anything, a gigantic surge of OMG! I CAN DO THIS! runs through my body and it is awesome. I get so excited I cannot stop smiling even though I feel like a total dork with a big old grin on my face in the middle of yoga class for no apparent reason.

It feels like a party in my body.

It happened again today when I forgot my dongle and had to dash from a meeting back to my office. I ran. And it didn’t hurt. And I couldn’t stop smiling and so I started skipping instead. And that didn’t hurt either. And it was awesome. Another party in my body.

I know what it feels like to have millions of my cells systematically killed. I know what it feels like to need to sleep for an entire week from chemo. I know what it feels like to shoot up my belly fat with medicine to make my white blood cells blossom. I know what it feels like to be so exhausted that watching a movie takes too much energy. I know what it feels like to collapse to my knees after five minutes of yoga. I know what it feels like to watch the nurse put on protective clothing to inject me with toxic medicine. I know what it feels like to wonder what, and how, and when to disclose. I know what it feels like to believe the yoga practice that has been a coping mechanism throughout cancer might be gone and impossible forever.

And now, I know what it feels like to get that yoga practice back. I know what it feels like to skip around UBC without aching pain. I know what it feels like to wear a wig with a couple centimeters of hair underneath. Mostly, I know what it feels like to move around this world and discover something new, something glorious, something marvelous, something amazing about my body. The past many weeks have been full of getting to know an unfamiliar body, a body I do not know, a body that feels like it is not mine.

There’s more to be discovered. For now, each time I go to yoga or the gym I learn I can do something new. Last night at yoga, I lifted both my arms over my head for half moon, and it was so amazing I couldn’t stop smiling for the whole class. I’m certain everyone thought I was a lunatic. I still am grinning about it, so delighted with myself. The little things. And the parties in my body, after my body was so devoid of parties for so long.

I have now to discover so much more about my body, the body with a breast I cannot feel, the body that has been battered such that I have had to radically alter my life plans, the body that has marched with me through the halls of the cancer agency, the body that is mine. It’s an odd thing, to have a body that is mine but with whom I don’t totally identify. It’s a slow process, bringing myself back into my body, becoming accustomed to this body. When I look in the mirror, the body I see isn’t the one I expect to see, and the vision of me I hold inside doesn’t map onto the material reflection. I shake my head, trying to clear the confusion and the surgeries and the chemo and the cancer residue and the life fuck-up, but the material reflection of someone I think I am not stares back.

And so for now, I just go to yoga. I relish the good feeling when I run and skip. I delight in being able to reach above my head and swing my arms. Party in my body. It’s what I got right now.

 

 

 

 

Oh, hello, wigs.

I have not worn wigs in weeks. Months. I decided bald felt more like me, it felt more honest, it just felt better, to leave the wigs hanging in my bedroom. I developed fanciful ways of responding to the inevitable comments about my baldness. Sometimes I tell people who ask why I’m bald that I was electrocuted and it burned my hair off my head. I get asked all the time. I told one person who asked I was doing an experiment to see how people responded to bald women in public places and that her (insensitive, uninformed) response would help me with my research.  She said I didn’t have her consent. I said she didn’t have my consent to ask me questions about my bald head. The comments which prompt these responses range from, “So, did you do that to yourself on purpose?” in the line for coffee, to Facebook messages from people I have not talked to in over five years that read “I was wondering if you chose to be bald, and if not, please let me know what’s going on,” to various and very plentiful comments about the supposedly pleasing shape of my head.

Being bald invites cancer comments too, and like the bald comments they vary widely. Yesterday, a doctor (yes, a doctor) said to me, “So what do you think is causing all this young breast cancer, it’s probably caused by excessive caffeine and alcohol.” Don’t worry, I jumped all over him about plastics, toxins, victim-blaming, and misinformed research and he stumbled around when he realized what an ass he was. Someone the other day told me I needed to consume copious amounts of banana and tomato to ward of cancer cells, and an acquaintance recently asked me to recount my stress levels over the last decade to see if there were any links between my stress and my cancer.

That’s barely the tip of the iceberg.

People always act surprised and horrified when I tell them about this, and I’ve started to wonder why. I think we need to get out of the land of make-believe and function in reality, where this happens, multiple times a day, every day. Surprise that someone would ever say some of these things only functions to continue to allow people to refuse to know what it is like living with and after cancer. Surprise is a-political. It keeps things as they are- because how could that happen? Easily, people, easily. We cannot afford to be surprised.

I get at least two or three of these malignant comments every day. Like today, at yoga, a woman changing next to me said, “Are you injured? I noticed you were not using your arm very often.” I shrugged and said, “Nope, I just had a mastectomy.” And she said “Oh, it looks beautiful.” (What the f*ck?!?! What looks beautiful- my breast? Why are you staring at my breasts? The only people allowed to judge how it looks are me, my hubby, and my plastic surgeon- and you are not one of those people. Or are you saying it’s beautiful because you assume I had reconstruction and you can’t tell? Just stop talking already). But no- she went on. “I am a nurse and I didn’t know that was an indication. Is it forever?” By now I’m like dude, I don’t want to discuss my medical history, even if you are a nurse, which makes me think you should know not to ask these questions, so I shrugged and said, annoyed, “Uh, as I said, I just had a very major surgery.” And then I turned on my heal and fitted my wig to my head.

I fitted that wig to my head because I am worn down. I am tired of these comments. I am tired of answering questions. I do not want to discuss this with the grocer and the man on the corner and the colleague teaching the same class as me who constantly asks me if I’m OK. The wigs are a protective barrier. When I wear a wig, people don’t assume cancer -even though I now have a centimeter or so of hair- and even the people who know me and know I’m bald under the wig seem less likely to invade my space with questions and comments and magic cancer-curing powders (yes that happened).

And so I broke out the wigs. I had the long redhead one washed and styled. I’m tired. I’m too tired to rehash this with everyone. I’m too tired to explain to you why your cancer-camp in Costa Rica will not cure me, and I’m too tired to listen to your stories about this person you know who just started chemo or that person who died of cancer or this other person who saw a movie about cancer.

I’m just done. I don’t want to talk to you about cancer, especially not mine, unless you either really get it (read: you had cancer) or you have something really smart and political to say, or you are one of the very elite crew who deals with my cancer on a daily basis and I’ve invited you in already and you’ve seen it all.

I am done being your friendly cancer curiosity. I am tired of explaining away your misinformed ideas. I want my hair to be long enough to look like me. I want to feel like me. I want my hair to be the same strawberry blonde-ish it always has been, not this ashy blond that’s covering my head in soft, dewey hair. I want to feel like me, and even though many people tell me they don’t like the redheaded wig much, it is the one I feel the most like me without cancer in, and right now, I need to feel like me without cancer.

I need to convince the people around me that I’m healthy, and perhaps, if I can convince them, I can trust my body enough to believe that in fact, I am healthy. If I have to wear wigs until my hair is long enough to pass as healthy when I look in my bathroom mirror every morning, I’ll do it. Fine.

Breaking out the wigs. Ready, go. Hurry up, hair.

a letter from my left breast

Dear Body,

I miss you. It’s been interesting being here on the other side, without you, Body. But I found the area for the breasts that had cancer in them, and we’re all here without our Bodies, and so that makes it a little more bearable. We’re together.

I’m not the new kid on the block anymore. Today, your cancerbuddy H’s right breast came to the other side. I was very excited to see her, and to show her all around. I introduced her to the breasts that comforted me when I first got here, and I showed her the best spot for sunbathing. Tomorrow we’re going to go floating in the ocean with the other young breasts who love to swim and I’m going to tell her silly jokes to make her laugh. All the other breasts are here, too, and I’m going to introduce her to everyone.

I know you think it’s make-believe, sometimes, dear Body. But there’s nothing not real about it. Telling stories is at the core of who we are as humans. We make sense of the world by telling stories, and by imagining our selves as characters in stories that are related to other people in the world. It’s where everything comes from. We teach each other about the world by learning about how others were, what they did, how they are. And so we participate in the stories, the making of identity and the knitting of community, and we teach those around us as we do. The stories become who we are.

The story about how the breasts who get mastectomy’d all go to a place where all the other breasts who got mastectomy’d went is part of your story, Body. It’s a story you share with lots of Bodies before you and lots of Bodies after you. I’m your breast in this story, dear Body, and the story goes like this: We are here together, me and the other breasts, and we are waiting for you bodies to finish living on earth. We’re not alone here, we’re all together. Just like you. You and all the other women who are tied to this place, because they’re breasts are here sunbathing with me. Each time you tell the story, Body, your words weave together new realities over here on the other side, where I can find warm embraces and intellectual stimulation and afternoon sunshine because you imagined it as such. Can you believe there’s all that on the other side for breasts who died too soon? Ah, the power of the imagination.

Remember, Body, when those young people we worked with in Nicaragua always asked why you believe in magic? This is magic, Body. Storytelling is magic. It holds us all together. The only way to make sense of such horrific knowledge as cancer forces on us is by telling stories, by making them up, by allowing words to coalesce until there is some way to imagine a little bit of glitter, a hand to grab onto for support, a deep warm embrace.

Maybe, Body, it’s time to make up a story for that hard, uncomfortable expander that’s holding space between your chest wall and your skin. It might be time to stop hating that piece of plastic, and come up with a story about how the plastic is gently and carefully holding the physical space in my memory. Maybe if you send that plastic warmth and believe that it’s not your enemy and imagine it as holding open my space for a little while, it will stop screaming so much every time you run. Maybe if you can get on the same team with the expander, then it will let you lift your arm over your head so you can go to yoga, Body. I know how much you need to go to yoga.

The thing is, that plastic is going to be there for a while. Three months, maybe six. You are so tired now, Body, and healing is harder this time. It might be easier to give up the fight, loosen the muscles, accept what is. Acceptance is never easy, I know. But the thing I’ve learned from the other breasts, over here on the other side, is that our capacity to resist is finite. Eventually, acceptance comes, and its easier if we can let go gently.

Know that I’m here, Body. I’m you’re Left Breast and I’ll always be your Left Breast. We’ve went through so much together, and I’m grateful. Remember the time I got bitten by a spider in Nicaragua and it oozed everywhere, and you called the wound your “triple nipple?” Remember the first time someone else touched me? Remember the time I starred in the totally not scandalous naked movie project you convinced your college buddies to make? There were so many good times, weren’t there, Body? So much to remember.

But I’ve got my spot now, and its on the other side. Don’t you worry, I’ve got lots of love here. I have friends and mentors and colleagues and tanning buddies. They’re taking good care of me, and I’m taking good care of them. Holding my spot open doesn’t mean replacing me, or pretending I wasn’t there. Holding my spot open might mean sometimes, you can pretend I’m there and that this whole cancer catastrophe never happened. I know that seems impossible right now, but some people say that’s the story you’ll tell next. Holding my spot open might mean that when you come over here to the other side, too, Body, I can slip right in so easily. Holding my spot open might mean that you can always touch the space where I was, and that you can always know that much of me will always miss you, Body.

It’s just a thought, Body. Maybe you need to fight the expander a little longer. Maybe you need to keep railing against it, reciting your hatred for it, noticing ever ache and pain it causes. But sometime soon, that will all come to a close. You can remember me and make peace with the hard as rock expander holding my spot open. But whatever you do, know I’m over here on the other side, and I’m OK.

It’s time for me to go now. I need to find your cancerbuddy H’s Right Breast, because she’s new here. She’ll find her family here, eventually, too, just like I found mine. I have a big old lovely family here, and they’re taking good care of me. Now you go, and take care of that space where I used to be. I’ll be here, Body, thinking of you, cheering you on from the other side.

Xoxoxoxo,

Your Left Breast

 

necrosis

The Greek root of the word necrosis means death, the stage of dying, the act of killing. Maybe we should use that word to describe all of cancer treatment: trying to kill cancer cells so they don’t kill me first, making me feel like I’m dying in order for me to maybe live, wondering if all the cancer cells died and withered, hoping “the act of killing” that targeted the cancer was wildly successful.

But I’m a little worried about “the act of killing.” You see, in the final minutes before my mastectomy, we switched from skin-sparing to nipple-sparing mastectomy. I’d keep my nipple. The little piece of personality atop my left breast wouldn’t go off to the other side, after all. Rather, she’d stay perched atop my expander, a reminder of what once was. I was happy to have her. Post-surgery, she struggled. She’s black and blue and bruised. There’s not much oxygen, you see. With no breast tissue beneath that little piece of personality, the blood has to travel a lot further, and only through the skin, to deliver much-needed oxygen. The blood has to jump across my lumpectomy scar, and that’s a wide jump for a little blood without a whole lot of space to maneuver.

So I’ve been sending the little nipple good vibes. You send her some too. I’ve been willing the blood to pump there. Yesterday the nurse visited, and in her words, “it doesn’t look good.” She wouldn’t discharge me from home health care. I’m eating tons of protein. Maybe that will help. I’m gently exercising, hoping the blood circulates up there to the little nipple, saving her from dying. Necrosis, the death of tissue, is a risk mastectomy carries, one I was well aware of but didn’t think would happen to me. Everyone probably says that. I never have complications. I just heal up, and everything is fine. But my body is tired. I am so over this cancer crap. Maybe my nipple is rebelling. Maybe she’s pissed that the initial plan, the one we almost went with, was to send her away to the other side. But come on little nipple, get on board. Scream for oxygen. Tell the skin to give you some life.

I’m afraid to pull the bandage off. Tomorrow I have to put a special cream on it again, which means the bandage has to come off. I get lightheaded just thinking about what lies underneath. Worse, pulling a bandage off of skin that is part of your body but has zero sensation is just too jarring. Pulling the bandage off, and feeling and not feeling it come away from the skin at once totally disrupts my sense of where my body is and where my body ends. Tomorrow Sammy and Ariana are going to peel away the bandage and we will see what it looks like. I hope the cream and the protein-loading and the gentle walking will breathe new life into the patch of dark purple skin. I hope there’s no more oozing. I hope it’s not gross. I’ll feel better once it’s covered again. I do not like looking at things like this. Thankfully I’ll soon be a doctor of philosophy (defense set for June 24!) not a doctor of medicine, and the doctors of philosophy-even the ones who study the cultural politics of cancer- mostly look at words and books, not bruised nipples and surgical stitches.

How wildly odd. My arm can brush my side, but I’m unsure if it’s touching my fake boob or my purse, unless I look. When they pull the bandage off, I can feel it in some places, and other spots, I can only hear it- the sound may be worse. It’s not like my leg being asleep, when I can feel pins and needles. It’s like nothing. It’s like someone glued on a breast to my chest. It’s like the skin isn’t mine. It’s like it’s dead. And so here I am, trying to revive a part of my body that I know intellectually is part of me, but which sensationally is not a part of me at all. How does one feel the contours of one’s body in space, with such a large swath of un-feeling? I wonder, if I were to draw an outline of my body on poster paper, like the way you do in elementary school, how would I fill it in? What would the breast look like? Do the lines trace embodied feeling and sensation, or do they trace what everyone else sees?

Having such a large area of my body be so foreign to how I know myself really disrupts my sense of embodied continuity. When I don’t know how to draw the lines around my body, to gauge where I end and the air between me and the next person begins, I can’t quite figure out how to be, how I am, where I am. Me is disrupted. Another person who had breast cancer recently told me that they are still self-conscious, even years later, about how their chest looks and feels to the rest of the world. The way my body feels is totally out of synch with out it is perceived. Embodied feeling and perception are supposed to map onto each other, at least sometimes, where we can be secure in being perceived by others in a way that is at least sort of similar to how we feel. Except now it’s like puzzle pieces from different puzzles. How I feel about my body- literally, how I sense my body, the lines I would draw around where I end and where you begin, my own materiality is disrupted, broken, scrambled.

The other day, the doc said “it’s a breast, it’s just not your breast.” Sure. A breast is all of the things we understand it to be when we layer it with meaning. Who’s to say that a breast filled with silicone and no blood supply isn’t a breast? I mean now that I’ve figured out the bra situation- stick-on cups and seamless camisoles are my best friends- you really can’t tell even in a form-fitting tank top. I mean I can tell, but I can also look in the mirror and know that the breast size difference is minute and that as the expander is filled with saline it will become non-existent. But I’ll always know it’s not my breast. My yoga-teacher-cancer-buddy-J tells me she doesn’t think about her fake breasts anymore, that they seem totally normal. I cross my fingers she is right, that when Dr. Yoga-Surgeon replaces this brick-like expander with an implant, it will seem totally normal. Maybe. But still, it’s not my breast. Maybe I can learn to live with it, though.

For now, I’m spending all my time trying to sending energy vibes to my little purple nipple. It’s not the whole nipple, just a little spot on the side. I know my vibes won’t save the thing. But what else can I do, besides follow the directions to cover it in burn cream and keep the bandages fresh, and try to eat like the nurse suggested- extra protein and lots of water? There’s so many layers. There’s the numb layer. There’s the nipple layer. There’s the cancer layer. There’s the bra layer. There’s the embodied sense of self layer. So many layers. Today, sending the nipple layer all the oxygenated blood vibes that I can possibly muster. Go, oxygen, go! Jump across the scar. Revive the purple part. Let the nipple stay on my body. Let’s not send her yet, to the other side. Come on little nipple, come on!

 

 

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.

 

A Letter to my Left Breast

Dear left breast,

Thank you. Thank you for holding the cancer inside of you. Thank you for taking one for the team. You saved my life, left breast. You worked your ass off to keep those cancer cells contained, and you did it, and you let me know there was all kinds of pandemonium happening as soon as you could, so we could get this life show on the road without too much traffic.

I love you, left breast. You’re one of the good ones. You’ve been there, leading the way, for so long now. I’m sorry we will part ways. You’ve been so good at matching yourself to my right breast, even though you’ve got two spine curves and some uneven hips to balance out, and I know that made the whole matchy-matchy boob prospect a challenge. But it was a challenge you faced and achieved. There are not too many left breasts in the world who can perfectly match right breasts on the same body at the same point in life, and I’ve prided myself on you, one half of my matchy-matchy boob set, for two decades, now. Sure, it’s purely aesthetic triumph, but triumph none the less.

I guess I don’t have to tell you about triumph, though. You know, because for the last decade or so- or how long was it, really?- you’ve been playing goalie of my body, making sure the cancer-team didn’t kick any of those cancer cells into my lymph nodes or blood stream. You’ll probably never know the awesomeness that your goalie-ship was, because now you’re going another step further, and you’re going away forever. That effing sucks. I know it’s the worst when you hear people tell me that it will be almost the same without you since there will be a silicone implant in your place, or that I’ll still be the same person without you. Of course I won’t be the same person without you, and nor will I be a better person. I’ll be a different person. I know it won’t be the same, or even anything close to the same. After all, a silicone implant can’t grow cells, can’t play goalie, can’t feel anything, can’t go matchy-matchy with the right side, can’t loll to the side, can’t be the total rockstar that you are. Even if that silicone implant stays forever- right now, it’s a stop-gap measure so that I’m not uneven until we make some more decisions and live a little more life- it’s an it. It’ll never be the same as you.

When you go to the other side, dear left breast, you should look for the other breasts that were slashed from our friends bodies, and you guys can galavant together. They’re gonna be waiting in the area for breasts who died too soon, breasts who spent their lifetime playing cancer goalie, just like you. I think the area for breasts who died too soon has lots of sunshine, lots of beach, and lots of salty water to float in. You will love it. And you so deserve it.

You have made me a girl, left breast. You held so many things I hoped for inside of you, tiny little futures and buds of possibility. You are so unique. Even the plastic surgeon said so, when she noted how impossible it would be to match an implant that looked just like you, or even build a breast like you. You’re too unique, too special, too one-in-a-million to be replicated, rebuilt, replaced. You’ll only be remembered.

Signing off for now, left breast.

Xoxoxox,

The rest of your body

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.