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.

airport cancer

Did you know it was a thing? Airport cancer, I mean. It’s a thing. I’m in Salt Lake City, on a layover en route to San Diego. And I’ve met a total of three people because of/about/surrounding cancer.

First there was the lady. I parked myself at a restaurant bar and ordered what would turn out to be flavorless pasta and a glass of wine I couldn’t finish. As I flipped through my emails, I felt her hands on my back. You are beautiful. I want you to know you are stunning. Where are you in your treatment? She was in the know. I knew she knew in the visceral way only other people who have/had cancer know. I finished the chemo, and I have a mastectomy in two weeks. She nodded. And again. You are so beautiful. I had breast cancer. I did it all. You are going to be just fine. And then as soon as she appeared she was gone, though I felt her watchful eyes on my back until I finished my dinner, paid my bill, and turned to wave goodbye- and found her seat empty.

The bar was mostly empty. But this youngish white guy rolls in and picks the seat right next to me even though my suitcase that’s really too big to be a carry-on is taking up all the room between the two stools. He maneuvers around it. He makes small talk. He’s from San Diego. He was in Vancouver. We were on the earlier flight together and are on the flight to San Diego together, too. After twenty or so minutes of strangely persistent small-talk twists and turns, he tells me he’s a researcher. Another Ph.D.. One who works on hormone-sensitive cancers. Prostate. Ovarian. Breast. Bingo. Is that why he sat next to me? How strange we ended up sitting next to each other- I have breast cancer. Is it ER+ positive? Is it in your nodes? (It doesn’t feel invasive, this line of questioning, and I feel like I need to say that, because as I write it sounds invasive.) But he knew what he was talking about. You’re going to be fine. No markers in your blood, nothing in your nodes? Best case scenario. He likes my young breast cancer cultural politics research plan. He knows what #bcsm stands for. He’s so clearly in the know. When you’re that in the know, the questions are informative. When you’re that in the know, you know how to cut the bullshit, talk particulars, and be clear and hopeful about the outcome. We talk more. He tells me about a receptor-chemo he is working on for metastatic breast cancer, and about a trial to shut down and eliminate the ER receptors (or something like that). I am so relieved to know this person is working on breast cancer research behind the scenes.

Finally, I board the plane. There were no empty seats, so I am stuck in 22C even though I tried to play the cancer-card and get moved, as I did on the last flight, to an empty row or even better, an empty first class row. And as the last few people fill up the seats, a boy in his late teens approaches. Look, he says, I really want to sit with my girlfriend. Want to move to first class and take my seat? Who are you, I think silently, a lanky, pimply twenty year old with a first class seat? OK, I nod. I’ll do it. Wouldn’t you? The flight attendant moves my suitcase. I move up to the third row. Mr. Tall-Lanky-Pimply-Boy-In-First-Class left a note on the seat. You look like you need this seat more than me. What? This is so weird. But I do. And I have this seat now. So OK. Maybe he knew I had cancer. Maybe the note wasn’t even for me. Maybe it was a random act of kindness I suppose I could ask, but I kind of like it this way, not knowing, magical anonymity.

What is this dreamworld I’m living in? Oh, I forgot, it’s not a dream-world. It’s America (as my friend Ariana always calls the US). So this is what its like to have cancer in America. I didn’t know. This many people would have never spoken to me in Canada, even if I walked around bald. Even in yoga, the many strangers I practice work don’t say a word, even though they watch my eyebrows melt off and see me paint them back on after the grand sweat and stretch.

America. As soon as I cross the border, each and every time, it feels different. The city is irrelevant. Doesn’t matter if I fly into NYC or drive into Bellingham or land in Oakland or pass through Salt Lake City. It’s like a release of breath I didn’t know I was holding. It’s easier. The servings of onion rings are bigger. I can understand the second language around me- and it’s Spanish. More people wear flip flops. No one says sorry in that Canadian twang. It’s home.

But lately I’ve disavowed this place I’ve called home. I’ve announced I never want to return. I’ve proclaimed gratefulness at being treated in the Canadian system. I’ve waxed horror for my American young breast cancer afflicted peers. Tonight makes me think again.

Americans get right up in your face. The old lady put her hand on my back and didn’t take it off. The flight attendant inquired about the surgery date. The guy asked questions I felt I needed to defend for being invasive when they didn’t feel that way (have I become entirely aculturated, Canada?). Americans care in their abrasive way, and while in Canada people stare but stay silent about my baldness, here even a wig invites conversation, comraderie, questions. Certainly, it also invites too much curiousity at times, too much in your face grittiness, too much. But I gotta say, it’s a breath of fresh air, too. Or better articulated, it’s a release of breath I didn’t know I was holding.

I’ve learned lately, over and over and over again, that its always better to do something, say something, respond, try, ask, reach out and f*ck it up wildly than do nothing, retreat, be tentative for fear of f*cking it up. The person to whom you’re offering can always turn you down or simply not respond. That should be absolutely respected each and every time without question- it’s called consent. But that’s why you ASK. That’s why you REACH OUT. That’s why you DO SOMETHING. It’s an invitation, a provocation, a caring, a smile. It doesn’t have to be returned, accepted, responded to. I’d rather throw it all into the universe, shower the people I care about with feeling, and let them decide what threads to weave into our friendship. Better to offer a hundred different yarn colors than only blue or yellow or worse yet, none at all. And yet— that’s just what the tons of people have done. They’ve offered nothing. They’ve retreated, rolling up their ball of yarn and running.

I think it’s classed, cultural. The Canada I know is enmeshed with British reserve. There’s a upper class value haunting privacy. Privacy, keeping to oneself, discussing body-matters, health-matters, relationship-matters in whispered phone conversations and presenting a facade of collected presence- it’s something you perform to show you belong to the middle-upper or upper class. It’s proper. That plays out in Canada, in the vein of British reserve. And as soon as I cross the border to America, there’s a brashness, a willingness to engage, a rawness that can horribly wrong and that can be horribly endearing. I’m the first one, almost always, to tell you effed up the States can be. But man, tonight I was reminded, as I meandered through the very American Salt Lake City airport, that there’s something awesome about Americans, that there’s a reason I let out the held-breath when I arrive here, and a reason that I can identify with a wink of the eye as American. Maybe there is actually reason to be hopeful.

Oh America. You’re so weird.

 

my cancer card

So I am headed to San Diego- cousin’s-wedding-week-writing-retreat-college-buddy’s-wedding. Yesterday, a friend emailed me, discussing airport-ride options from the second wedding. She asked if I was flying out of Palm Springs airport, a 15 minute drive from our hotel for the second wedding.

Umm.

My flight was out of San Diego. GoogleMaps revealed this was a two hour drive from a hotel, and it was a 6am, Sunday-after-the-Saturday-wedding flight. I called and ask to change it. $600, they said- the same amount the ticket had cost me in the first place! After a little freaking out, Sam poured me a glass of wine and I went to bed.

In the morning, I called the airline. Still $600 to change the return flight from San Diego to Palm Springs. And then I said “Look, I have cancer. I can’t do all this late night traveling. Is there any way you can help me out here, compassionately waiving the fees?” AND THEY DID. They waived the whole thing- the change fee and the flight difference. OMG. I swiped the cancer card and it worked. They quickly emailed me my new flight, exactly as I wished- flying into San Diego as planned and they changed my return flight to leave from Palm Springs. Thank you, Delta!

My brilliant and very funny brother thinks I should tell them, today when I get to the airport, that I need to be secluded. It’s true, I cannot get sick, and it’s true that my white blood cell counts are probably still a little below normal from the chemo. And it’s definitely true I wouldn’t mind be bumped up to first class…

…. and, update. Now I’m at the airport. And all I had to do was say, truthfully, “I have cancer and I don’t want to get sick! Can you make sure I have a seat as far away from everyone as possible?” And boom, I was seated in first class and they let me carry on my bag even though it’s too big.

Cancer sucks. At least I got the airline to change my gigantic mistake for free! And to seat me in first class! Hey, one could argue chemo brain led me to book a last minute ticket out of the wrong airport. You know. =)

 

American Horror

I am horrified. Mortified. I have no way to understand why my outrage is not shared with the general American public enough to have already incited a massive revolution years ago.

My friend with good health insurance in the US found a breast lump. She required a mammogram and ultrasound. In her early thirties, she was referred for these tests by her doctor.

She had to pay $700 for these tests, because she is under forty. Are you fucking kidding me?!?!?!?! No, no, no, I’m not.

She doesn’t have breast cancer- thank god- but she’s out $700. Fine for her, but what about everybody else?!?!?! What about the people who don’t have an extra $700?!?!?!?

Now about that Canadian residency application….

 

Knowing

Rationality. It exists in the mind, not the body, the white man scholar who lives in the ivory tower declared. The female body in particular is made of flesh that can steal rationality or tilt the balance upon which rationality rests. Women are constantly written off for being emotional, irrational, because of our bodies. Rather than be in our bodies, we need to get outside of them, survive them, be awesome in spite of them- be emotionless and rational and neutral in spite of the female body (read: endeavor to be like a man, and call it neutral, even though it’s not, its thinking/being/doing like a man).   Patriarchy has built a particular looking glass, and in this looking glass, being enmeshed with the body is a function of being woman, or being other than man. Elizabeth Grosz, one of my favorite feminists, writes of this patriarchal looking glass, “Women are somehow more biological, more corporeal, and more natural than men” (Grosz p.14). Challenges of the body- embodiment, the body and knowledge, knowing from the body, knowing without the body, knowing through the body, knowledge traveling through the body- figure large in feminist arguments about the construction of knowledge that dismantle the way that rationality has been heralded as an out-of-body, emotion-less, male quality.

As a scholar, I try to stay in my body. I try to acknowledge the way my embodied privilege informs my writing. And as a breast cancer patient, I notice all kinds of tensions happening in between my body and my mind. I’ve disengaged from my breast. In preparing to have it removed, I’ve stopped relating to it entirely. Sometimes, I am frustrated I care so deeply about a breast, and I roll my eyes at myself, rationalizing the decision and feeding my mind statistics and information. I shouldn’t care. I know gender is socially constructed. I’m a feminist, I know I am more than my breasts. I tell myself to be rationale: this breast actually tried to kill me, of course it should be kicked to the curb. Just the other day, I admitted to an ardent feminist who had breast cancer, that I wish I didn’t care, I shouldn’t care, a feminist should know she didn’t need to care. I shouldn’t care.

But I do. And in the tension between stats, information, and surgeries I recognize that my own disregard for feeling and for my embodied experience of my breast and breast cancer is reflective of so many of the rationality/embodiment/gender conversations feminists have been having for decades. There is very little space, in the medical world, to account for the embodied experience I am having.  I am constantly showered with opinions, stats, rationale decision-making, suggestions, ideas, recommendations. I am tired of rationality and I am tired of being told rationality is neutral. I am tired of being given stats and listening to numeric explanations. I want to shake some of these people, and ask them to stop trying to rationalize my body away. My body is here.

I am a body. A body marked female at a birth. A body that is supposed to have a pair of breasts. A body that has cancer growing inside one of those breasts. I am also a scholar, a partner, a friend, a kitten-foster, a writer, a dissertation candidate with an external identified for my defense, a lover of artichokes, a crafter, a world traveler, an organizer. But here in cancerland, my body is constantly assaulted with rational claims, claims that, even though they are about my body, deny my embodiment. The onslaught of claims are launched at me, the cancer patient, and the claimants mostly refuse to acknowledge me, everything else. So much is denied, and in the end, even my body as a cancer patient is denied, and I’m supposed to acquiesce to someone else’s mathematical calculation of what I need. Seriously.

Just this morning, I stood on a treadmill at the cancer-gym and prepared to start my cardio. A grad student came over (I’m part of a study and there are all these grad students/volunteers who run the exercise programs) and asked me if I wanted to try intervals. Actually what I wanted to do was read the book on my kindle, but what was I to say? So she stood there, and she narrated this whole story about knowing exactly what rate and incline I needed to get to a particular heart rate from my previous exercise test. She went on and on. And then she wrote this information down on a yellow sticky, smiled, and left me to do her perfectly calculated intervals. Stupid calculations. I didn’t get my heart-rate up to my target, even though I followed their calculations exactly. And worse? Then I didn’t get the work-out I wanted, so I was pissed off.

Who cares? Me. I care. I care that I cannot fit myself into a calculation.

As this grad-student-person’s words came at me, staccato and punchy and happy-happy, I willed myself not to roll my eyes. She has no idea. A calculation can’t account for the horrible cold I had during the test she is calculating from, or for my late-night Easter escapades, or for the fact that I only got on the treadmill at all because my cancerfriend was on the one next to it. A calculation can’t account for my body. It seems absurd as I write this, that someone would actually believe they could tell me how hard I should work to achieve a physical goal, from outside my body, doesn’t it? I mean how could she possibly have that information? Obviously, she didn’t. The calculations were wrong. I knew they would be from the second she stuck that stupid yellow post-it with the stupid smiley face on my treadmill. And that is how it always is. People telling me all kinds of shit about my body, that they apparently know because they are some kind of expert.

Any feminist can tell you that expert knowledge is situated, embodied knowledge. And that the person most situated, most embodied, most full of expertise about a body is the person living in that body. And yet- here I am, day in and day out, being denied expertise about my own body. People telling me, every single step of the way, that they know better about my own body than I do. The world of breast cancer is absolutely excellent at stripping from each patient her own set of relationships to her body, her knowledge, her epistemology. In this warped world, smiling and “helpful” people, fliers, information is available at every turn to share with me their particular expertise about my body. Not about their body. About my body.

My body is constantly being assaulted by these staccato pieces of information from “helpful” people. It’s not the doctors. Nurses. Family. Friends. Grad students. Do this, try that, maybe this, maybe that. I feel like a tin can, and each directive feels like a tiny bullet has been launched from a slingshot. My tin can is riddled with pings. It’s a battle of tiny assaults, a residual wearing down until I’d rather just hide my tin can somewhere away from all these helpful people. Most people have not even looked closely enough at the tin can to know what kind of tin it is, or how the light glints off of it in the late afternoon, or how it’s anchored to it’s base. No one else is inside the tin can, so continuing to ping me with slingshots only increases the ping marks, even if the pings are meant to help me rally back into a good-tin-can shape.

It reminds me of an old song, about a pile of tin… “I”m a little pile of tin, nobody knows what shape I’m in. Got four wheels and a running board, not a Chevy, not a Ford.” Yep, no one knows what shape I’m in. And so they try to ping me into the shape of an older woman with breast cancer. Fail. And so they try to ping me into the shape of a healthier young woman. Fail. And so they just keep pinging. And it’s beyond intrusive.

My body is tired and riddled with helpful, stupid, pointless, smart, weird tidbits everyone unleashes onto me all the time. And so when I think about my pending amputation, and how I shouldn’t care, it’s also like I don’t want to care, I don’t want to feel and know from inside this banged up and out of shape tin-can-body. I don’t want to justify that I’m not being irrational. Patriarchy is so seductive, and I’d rather slink out of this body and slither around without a body, only a mind, and then I can use patriarchy’s rationality to know that all is well. Knowing from my gendered body, knowing from a feminist place, knowing I am terrified to know in such a way that engages the breast to be amputated. Knowing that I am angry and it is easy to reach to my bookshelf and disappear in critical texts that explain things away. Knowing that I don’t want to do embodied, knowing that inside of me, misogyny is alive and well, embodied in my sometimes-refusal to engage with my body. Knowing that patriarchy is alive and well in the breast cancer world. Knowing that I will write from this embodied place, and that soon, I will write from another kind of body all together. Knowing.

 

 

i have to write about cancer

Well, the title says it all, doesn’t it? I have to write about cancer. I have to write about women under 35 with breast cancer. And I don’t mean write, like blog. I mean write like, research.

I’m so desperate to read something critical, brilliant, something smart about breast cancer in young women. Something about how we negotiate breast cancer. Something like all these rock-star blogs, but something academic. I’m insanely enraged that this has happened, especially because if we (as in, humans) treated our earth a whole lot better cancer would be preventable! It seems like something is begging to be researched.

I want to write about how young women navigate breast cancer. I want to write about the media communities that we flock to, and about the spaces we carve out for each other in private facebook groups and chats to talk in ways that are not “happy happy” breast cancer survivorship, and about the scattered but strong network of young adults with cancer. I want to write about why young adults with cancer become activists, and what the figure of the young adult cancer survivor turned activists looks like and means in cancer research. I want to research and write about sex and tamoxifen and gender in breast cancer in very young women. I want to write about why this happening in very young bodies, and why it’s tied to politics and capitalism.

You see, last night I was at yoga. I went to not-my-favorite-teacher, which was a leap for me, and I thought about the future while we did poses. I want to live somewhere with clean air. I want to live close to the mountains and to the ocean. I want to wake up and be able to walk down the street for a coffee. I want our children to be able to walk to school.I want to live somewhere warm enough to bike ride casually, as I do, in many of the summer months. I want to work on breast cancer. I want to write about feminist politics. I want to write about young cancer. I want to make a difference about the cancer invading breasts and bodies under 35. That is what matters to me.

The sharpest fighting tool I have is writing. And I am enraged. And so I will write. Bring it.

on money, working, cancer

Some people are always shocked- happily so- when they find out I continue to work and teach and everything as I do cancer. It seems to satisfy their need for me to be OK- “Well, she’s working, she must be OK!” I want to be clear about why I continue to work.

I have to.

I am a graduate student in the end stages of my dissertation. This is work. Some people have the wild idea that doctoral studies are not really work, and I’m not even going to get into that. I work harder as a doctoral candidate- between writing my dissertation, teaching courses, doing service work, collaborating with other grad students, supporting an academic unit, and participating in various conferences, talks, and other scholarly activities- than I ever did when I worked in non-profits and in schools. This is not the topic.

As a graduate student, I do not have access to paid leave. My Vanier Fellowship only provides paid maternity leave. There is no paid sick leave, not even when you have life-threatening cancer. When I was diagnosed, I did call around my university, wondering what sorts of resources and supports were available. I called all of the appropriate departments and centers and people who oversee graduate studies. There’s really no safety net for students who have life-threatening illness during graduate school. Had I taken a leave of absence, I would have had to pay back funding I had already received in the semester where the leave began. I was welcome to take a leave, but my funding would be put on hold. If I took a leave, I would be ineligible for any university based work- no teaching, no supporting academic units, none of the things available to me as a graduate student.

I decided I did not need to be stressed out financially on top of being stressed out about cancer. Was this a decision? Yes. But would you decide to take a leave when it meant that none of your sources of income would be available to you? And so, I continued working on my Ph.D. It did not seem I had a choice, and even now, six months into cancer, I don’t know how I would have managed the decision to stop working.

Financial stress is one of the major differences between young adults with cancer and everyone else. Often, we do not have the resources to take time away from work in order to heal. Of course, there are plenty of older folks who face similar challenges, but particular to my experience is age. Cancer survivorship is classed, and those with more resources fare much better. But this is about relative age and about youngness. Trust me, it sounds great to be able to watch movies all day and spend more time exercising and crafting perfectly organic meals, and my body would thank me times a million if I could take off time to rest and heal. The thought, though, of having no income at all made my skin crawl at the beginning of this, and the last thing we needed was more stress on top of the cancer. I need to justify this decision to myself and to everyone around me, and so I remind myself what a good distraction the dissertation is, I remind myself I really want to defend in June, I remind myself I want to get on with my life. And it’s true- I do want those things. I just might want something else had there been another option.

So, when you ask why I continue to work, and applaud the decision, take a moment to consider what isn’t said. Think about the financial impact, on top of the cancer, of not working. This comes up with other young adults with cancer all the time. Everyone is stressed about finances. Many of us are working. Others moved in with Mom or Dad to save money and to have access to people who could care for us while we are sick. Those of us who don’t live in the same city as our parents, like me, often ask the parents for financial help during this time, and some of us, like me, are lucky enough to have parents who can help, but many of us are not. I am unsure why finances are so taboo, but let me tell you, cancer burns right through any savings, cancer eats up extra money, cancer makes money really, really tight. For some reason, it seems like the world wants cancer patients to take it easy, do nothing, rest, but the world never whispers about the financial strain of resting. It seems like those around us want to believe in this mythic world of resting and relaxing in the face of cancer, and in this mythic world there is enough money for organic groceries and naturopathic care and expensive post-surgery clothing. It’s a myth, guys. Please join me in reality, where I spend my time with other young adults with cancer who tell me stories of  watering down yogurt to save money, sewing their own drain-holders into camisoles since they can’t afford the post-surgery clothing, moving in with their parents because their resources have been obliterated, and, in my case, teaching a course starting ten days after my mastectomy surgery. Don’t tell my surgeon.

Finances considered, I think there are better and worse times for getting cancer. A worse time is when you are not financially stable enough to take time away from work to heal. A worse time is when your barely existent savings are wiped out entirely by cancer costs. A worse time is when you worry about how much parking and wigs and mastectomy camis cost more than you worry about how long you have to nap or which kind of reconstruction you should have. A better time is when you are much older, have a secure job and nest egg, and can take time off work without worrying about how you will pay for the organic cucumber juice your naturopath recommended. Sure, it’s never going to be great, and it’s always going to be a horrendous time because cancer is horrendous.

For many of us young adults, cancer smashes the heart and the piggy bank at the same time, and we are left to wonder how to start picking up the pieces from this particular kind of ruin. It seems good, productive, helpful, necessary to acknowledge these distinct challenges. Don’t assume that a working young adult with cancer is working because they want to, they need to be distracted, they like their work, they are doing “well,” whatever that means. They have cancer. It’s probably a very complex decision, and there are probably layers and layers of challenges underneath the decision to work. For me, there are. I am glad I am working on my dissertation, I and do hope to finish in June. But that is not the whole story, and somewhere a little bit of the road that led to the decision to continue work should be illuminated for everyone else, should be heard and seen and considered. I don’t know why we cringe so much at the mention of finances- and even I was worried, as I began writing this post, about exposing our financial situation, about discussing money. But really? That’s what our world is built on. Why would it be any different in cancerland? Cancer bodies play in capitalism, too. You would think that would be obvious, with all the products marketed to us, especially to breast cancer patients. Our buying power is coveted, but we forgot to talk about our piggy banks. Broken hearts, broken piggy banks. That is young adult cancer.

regrowth. resistance. resurgence.

 There has to be regrowth. Resistance. Resurgence.

My body has resisted. Each time I was pumped full of poison meant to kill the cancer cells, poison that also killed my intestinal cells, the cells that become my hair, my red and white blood cells, and the cells on the inside of my mouth, my body resisted. That poison made me feel like I was dying, and each time, my body built itself back up. My body scrambled to make sense of what was happening, and I got better. Every time. It got harder and harder, as evidenced in my blood cell counts, where each week, my white blood cells count dropped lower and lower, and each week, it couldn’t quite get back up to where it had been the previous week. That said, it never dropped below the very low end of normal, hovering at .4 above the lowest “normal” at last count. Bodies are amazing. I am amazed that my body recovered each time, time after time, especially because as soon as my body was just starting to get a hold of things again, boom, I was pumped again full of poison. No time to recover on the dose-dense cycle. As the weeks wore on, my nails really started turning colors. They yellowed, and they grew extraordinarily brittle, and they flaked and they grew too tender for manicures. I hated it.

Now, it’s been just about three weeks since my last chemo. A week ago, my friend Ariana and I got manicures. The manicurist tried to buff off the yellow, but of course failed, for this is a yellow deep inside my nails, the physical manifestation of weeks in and weeks out of chemotherapy, the way the cancer treatment wreaked havoc on my body. In the last few days, I felt like the top half of my nail was not attached to my nail bed. It was odd. Today, I removed the remaining pale pink nail polish, and look what gross-ness I found underneath.

ImageImage

But also. Underneath the yellow and the white and the dead and the ridges of nail utterly exhausted from trying to cling on, there is normal, pink nail bed. Time is marked on each nail, and I can see that after the ugliness grows out there is something sweet and pink and healthy. I can tell that the poison will drain from my body (and hopefully it will take the last of the cancer cells with it) and that soon, there will be evidence of health growing on my fingertips. They might still fall off. I do not know. Where they are discolored, they are not attached to my nail bed, and each time they bump against something, or get caught on the sponge when I’m washing dishes they hurt and I have to look down, wondering if I’ve torn the entire nail off.

I could get a manicure. I did once already, to cover up the ugliness. I won’t this time. I’ll watch, as they grow out and the gross-ness fades away and new nail is born, and my body stays strong enough to keep growing new nail until all of my nails are pink and healthy, and none of them are dead, yellow, painful. It is the passing of time, marked visibly on my body. It is the passing of cancer, marked visibly on my body.

There are so many ways that my nail growth mirrors the emotional havoc that cancer has wrecked on my life, and on the lives of people close to me. It will pass. I will still snag my nails, they will still ache, just as cancer will continue to f*ck sh*t up and meddle in both my day to day decisions and my longer life plans. But soon, it will be less visible. I will cut my nails and the cancer will move to a place of lesser prominence. It will no longer be front and center.

There will be regrowth, even in place my body has resisted. There will be resurgence of things I love, and already, that is happening, resurgence of things I love that were pushed to the side and forgotten about while cancer took center stage. There will also be splinters of resistance, the cancer not wanting to be entirely forgotten, and I see the small white marks still marring the bottoms of my nails, and I wonder how long it will be until my skin returns to normal, and the dry, dry chemo-wrinkles that make my hands look over sixty fade. Or will they fade? Certainly, there will be permanent scars, on my breasts and in my armpit, and on my collarbone. With time, those will fade, too. But my body will be forever changed, and because my body will be changed so to, will my experience of the world. For now, I will watch as time marks my fingernails, and the days go on and on and pile up high enough that my fingernail clippers can remove all traces of discoloration, all the brittle and yellow and brown cut off, forgotten. For now, my fingernails will remind me that time marches on, and that cancer has an end, and that there will be resistance, resurgence, and regrowth.

vignettes

I’ve sat down to begin a series of different bog posts this week, only to be distracted or unable to finish. And so this is a series of thoughts and beginnings without endings, a collection of moments gathered haphazardly and carelessly from my life in cancerland, and strung together in no particular order, as is so often the case with… everything in cancerland. So.

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The first 72 hours of this week borderlined on disastrous. My academic supervisor made me cry. The receptionist at the surgeons office made me cry. The disgusting raw cat food spilled and made me cry. What went wrong? Cancer. Cancer, and I can’t take off the cancer-glasses. We talk about my dissertation, but it’s all tangled up with cancer. We talk about my BFF visiting, and its all tangled up with cancer. We talk about anything, cancer.

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Red lipstick has got some kind of super power built into the tube. I imagine this is the super power that the “Look Good, Feel Better” people were trying to capture, except they fucked it all up and it became, according to me, “Look Fake, Feel Worse.” So anyways, red lipstick. I bought some. I’ve been wearing it. It feels bitchy. I feel bitchy. It fits. I wear it when I go bald. We’re bitchy together, me and bald and a tube of red lipstick.

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Did you know that the root of courage is cor-, related to the Latin word for heart. In Spanish, corazon means heart. Apparently Brene Brown has already said something to this end, via a TedTalk, because when I mentioned this revelation to a friend, she asked about Brene Brown, and I quick google search reveals her quote:

“Courage is a heart word. The root of the word courage is cor – the Latin word for heart. In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.” Over time, this definition has changed, and today, we typically associate courage with heroic and brave deeds. But in my opinion, this definition fails to recognize the inner strength and level of commitment required for us to actually speak honestly and openly about who we are and about our experiences — good and bad. Speaking from our hearts is what I think of as “ordinary courage.” -Brene Brown, I thought it was just me: Women reclaiming power and courage in a culture of shame

Courage is in the heart. It is being heartful. It is wearing our hearts on our sleeves. It is knowing, being, walking with heart. Lately, I’ve noticed and been really exasperated by the performance cancer demands of me. When I walk into a room where people know I have cancer, the conversation almost instantly shifts to “you’re doing so well.” It’s as though everyone so desperately needs me to be doing well for their own peace of mind that they declare me as such before I even open my mouth. I’m doing well, sometimes. Other times, I’m not doing well. Other times, I’m pissed off. Other times, I’m exhausted. Other times, mortified. And so I’m trying to live with courage. I’m trying to live from the heart, and to let the heart lead. I’m trying to wiggle my way free from the performances everyone else needs, the reassurances they require, the discursive act they engage each time we meet in order to make me OK for them.
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I may not be able to defend my dissertation in June. That is mortifying. Terrifying. Horrifying. Maddening. I want so badly to be done with it. And I am tired. Exhausted. Annoyed. I begin to wonder, do I want this thing, after all? And writing, oh writing. Am I good enough writer? What is, who is, a good enough writer to write a dissertation? Am I? I wonder if this little monster sticker that I stole from the desk of my favorite cheerleading professor will help me get this done. He’s blue and he has a big smile and yellow horns, and he now is stuck to the corner of my laptop.
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I am grieving for my left breast. I will miss my left breast. I want to keep my left breast. Having body parts cut off, its like being torn into pieces, it forces me to re-examine who I am, who I want to be, what I am, how I am. There is no way to not think about my gender now, as the tamoxifen obliterates all traces of estrogen and I scheme to rid myself of body fat, because the one thing ovaries and body fat have in common is the production of estrogen.  So if I have one boob, and the parts inside me that make me a “woman” -just hold for a second on the complex gender analysis, people- are essentially shut down, and if when I read the literature I see that my symptoms are actually caused by a lack of testosterone, and if in place of my left breast I get silicone, what does that make me? Yes, yes, I know gender is social. BUT. I am one of the privileged ones who has never had to question her gender, correct a pronoun, or hide my relationship to my gender. My gender matches the gender I was assigned at birth when I was born F. Except now maybe my body no longer matches the F with which my gender was born. The girl chemicals are off, one breast is shortly to be hacked away and the other will soon follow, what most made me woman in the world- breasts- tried to kill me. What? And now I’ll have a new body to dress. One I never imagined living in. One I don’t want. So what am I? A cyborg? An alien? A zombie, like our frozen embryos? Someone who’s gender isn’t quite up to biological snuff?
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I can barely recognize myself without hair, without eye lashes, without eye brows. I look in the mirror and see someone else. Someone else who looks like they have cancer. It is surprising to see myself this way, and it makes me wonder who I am.
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I saw the cancer agency nutritionist today, which pissed me off. She was supposed to help me think about whether I could manage my tamoxifen-induced-headaches by including or excluding particular foods. She failed. I almost hopped on my bike and came right home, but my cancerfriend was one floor up, getting chemo, and I thought I’d feel better if I saw her before I went home from the stupidest appointment ever. The nutritionist treated me like I didn’t know to eat salad, like I couldn’t cook a quiche, like I hadn’t already discovered the dirty dozen and the estrogenic foods debate that is so prevalent in breast cancer communities. I was even excited to see her, thought I would learn something new. She told me nothing new, and she gave me a copy of Canada’s Food Guide. Because I need that. I can learn more from Google in 90 seconds than from having a woman recite to me the importance of whole grains and plant-based meals. Duh. I already do that. I want to know about hemp hearts and lemon-water and edamame and milk thistle tea and turmeric. Lucky for everyone around me, my cancerfriend was getting chemo above me and we could hang out and have fake mimosas for a little before I came home and commenced banging my head against my dissertation. That did make me feel a lot better.
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It seems like most of my friends are in crisis right now. I love them dearly. And yet, my patience is thin. I want to shake them, because they don’t have cancer. I want to jolt them out of complacency and into action. I can’t, and I know that. I even know it’s not fair for me to situate their crisis on a heirarchy, where cancer is at the top and jobs, girlfriends, partners, boyfriends, law suits, children, husbands, supervisors, dissertations, parents, divorce, grad school and cat drama are all staircases and staircases below cancer on the hierarchy. There’s even a cancer hierarchy at the top of this shitty life deals pyramid, and I’m not at the top of it. I have a friend who recently went through a miscarriage late in her pregnancy, and I think that’s pretty close to cancer. But nothing else is. Hierarchies suck ass, but I’m not in a place where I can do away with that yet. That would be such a mature place to be in. My head is there, but my heart is bitter and angry and stuck to the pyramid of shitty life deals, and I am standing at the top with some cancer friends looking down the stairs at everyone else’s less shitty life deals, and I am judging. Maybe I’ll get to a place where I can get my heart the hell out of here, because it’s no fun.
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I’ve been going bald almost every day now. People stare. Sometimes- seventeen times today, and it’s only 3pm- they even let their heads turn. I wonder if they know I know. I’ve never turned so many heads in my life. Everyone looks. If I wanted to be noticed, this was obviously the way to do it. The sun feels warm and springfull on my head. I feel like raising my eyebrows and rolling my eyes and challenging every single person who’s eyes turn and follow me as I walk down the street. I am a bald woman with cancer. That is only something that can be understood from the bald woman with cancer embodied perspective. Don’t tell me you understand if you are a bald man. You have no idea. Don’t tell me you understand if you are a bald woman without cancer. You have no idea. Girl cancer buddies, you get me.
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I wonder what it was. Was it the non-organic grapes I traded for at lunchtime in elementary school, tiny pieces of delicious fruit I wanted so badly and that my family never bought because of striking grape pickers? Was it the non-stick pans I replaced every six months with a trip to Ikea in my mid-twenties? Was is the angry feminism? Was there too much chlorine? Did I get too close to the men spraying crops during those many AMIGOS summers? Was it the scoliosis X-rays, and Dr. Blackman, the back doctor who failed to warn my mother of the harm x-rays could do? Was it too much coffee and not enough green tea? Was it too much sitting and not enough mountain climbing?
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I am bitter. I am bitter about the friends who have not called, or who don’t acknowledge I have cancer when I run into them after months of radio silence. I am bitter about the fact that my surgeon can’t twist someone’s arm to get more OR time sooner. I am bitter about my dissertation feedback. I am bitter about the way the estrogen blocker makes me have low-grade headaches every single day. I am bitter that my nose hair has not grown back and I am bitter that when you don’t have nose hair, there is nothing to catch the constant drizzle of watery snot. I am bitter nose hair has an evolutionary purpose. I am bitter about visas and green cards and the way they put a noose around our travel possibilities. I am bitter that I don’t have an academic job. I am bitter that my hair has not grown back. I am bitter that my bike helmet clasp broke. I am bitter that breast cancer hijacked pink, and now I hate a color I loved before. I am bitter that people tell me not to be bitter. There’s a place for bitter, I guess, and I’m in that place.
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During chemo, you are sworn from eating grapefruits. Now, I consume them like they are going extinct. I buy them at Whole Foods every time I go, even though they are heavy and I will have to carry them up the stairs. They remind me of AMIGOS. They remind me of sweet. They remind me chemo is over. They are so good.
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Today, I am going to write. I am going to re-organize. I am going to muster all the energy out of the center of me, and I am going to wrestle with my Introduction to my Dissertation. I have prepared myself with smelly pens and poster markers and butcher paper. I am full of fire to accomplish, of weariness of distraction, of the desire to move slowly and carefully so this comes out right.

my eyelashes had the last laugh

“No eyebrows. No eyelashes. When it rains the water will run straight down into my eyes.” -Catherine Lorde

Sometime in 2010, three years and a bit pre-diagnosis, I attended a research group meeting. Someone was presenting their work on breast cancer narratives and the insane public need to tell stories with language that is happy-happy, that makes use of totally offensive metaphors like battle, fight, win, and lose. She provided us with one chapter of Catherine Lorde’s “The Summer of Her Baldness,” which we were supposed to read and respond to and with in relation to her own writing. One sentence from this chapter she provided stands out to me, and stuck with me:

“No eyebrows. No eyelashes. When it rains the water will run straight down into my eyes.” -Catherine Lorde

These words rushed back to me upon diagnosis, three years after reading the piece. No eyebrows, she wrote. Rain in her eyes, she wrote. I felt those words deeply before I was diagnosed, though maybe some part of me already knew, for surely the cancer was already growing. Maybe those words resonated because at a cellular level, as I sat there and thought about how I knew nothing about cancer, I already knew at a cellular level, an embodied level, that I would soon relate to those words just like Catherine did. I already had cancer, I just didn’t know it yet.

I live in Vancouver, where it rains so much sometimes the pavement doesn’t dry for days on end. What would it feel like to have the rain fall into my eyes? Despite being surrounded by cancer researchers of the critical, qualitative, queer, feminist, cultural studies type, I really had read very little scholarship on and about cancer, and so Lorde’s piece stuck with me. What, I wondered, would that feel like? Raindrops falling right into the eyes, pooling right in the irises. What an embodied way to think about how a moment with cancer would be so radically, completely, totally different from my own life. Of course, at that point I probably had no idea just how radically different being with cancer would be, even though I was certainly already living in concert with cancer. I was living in concert with cancer already, but I couldn’t hear the music. I didn’t even know there was music playing. I wouldn’t have known how to even recognize the music.

For months and months of chemo, I waited. I bragged. I was the one who’s eyelashes did not fall off. I re-read Lorde’s book, and I knew, then, that she knew something about cancer that I did not, for her eye lashes fell off. I read my cancer buddy K’s blog about looking like cancer and I knew that she, too, knew something I did not. K and Lorde knew something about being eyelash-less in the world. My eyelashes were sticking around, though. Chemo 5, chemo 6, chemo 7…. I still coated my lashes, each morning, with dark brown mascara. I did not look like cancer, and the rain did not run into my eyes. There was a way in which having lashes allowed me to forget, to believe this couldn’t be true, to roll my eyes and wonder if they’d actually mixed up my diagnosis with someone elses’ diagnosis? I had lashes. I didn’t look like cancer. It couldn’t actually be.

My lashes started clumping together, I noticed. Thinning. Brows, too. Not quite as thick, my lashes, as they were last week. I wore fake lashes one day. But I didn’t really need them. They took me 45 minutes to glue on and I sweated one off at yoga. And then there was chemo 8. I bragged too much. My eye lashes fell. Big, wide spots on my upper lid, no lashes. Seven lashes on the left, fifteen on the right. I counted.

The rain fell in my eyes. The dust blew in my eyes. The air settled right on top of my eyeballs.

I knew what K and Lorde knew. I knew I looked like cancer.

I tried pasting lashes to my lid. I did for a couple of days. They look garish.

I tried lining my lid with a pencil. It looks like a lashless lid lined with pencil.

I gave up. I am lash-less. My eyes hurt from the elements. Literally. You can’t even see the twenty-two lashes that remain, because, as I have explained to many, I have clear eyelashes, eyelashes so light you can barely see them anyway. My brows, too, are quite thin. They look horribly over-tweezed. I didn’t count the number of brow hairs left, but I bet it’s under thirty. And so I wonder, now do I look like cancer? I squint all the time because my eyes hurt from the elements. It sounds like I live in the wild west when I say my eyes hurt from the elements, but there is just no other way to describe it. The air is just too close to my eyes, and I feel like the glorious smell coming from the blossoming trees in the city is actually in my eyes. Alas, the elements.

“No eyebrows. No eyelashes. When it rains the water will run straight down into my eyes.” -Catherine Lorde

The line perfectly and poetically gets at how cancer warps how we touch the world. It hints at how our bodies change, and in that change, how we live with and interact with the world of course also changes. And yet, my lashes have never been visible, not even before cancer. My eyebrows have always been faint. They were always the color clear. But now they are naught. They are totally gone. How I touch the world is warped with cancer, and if you look, you can tell. I can stare in the mirror for hours, wondering where they went, the row of lashes I used to own. And I look like cancer.

Looking like cancer, feeling like cancer, is odd, it’s an embodiment of something I never thought I was, someone I never wanted to be, a skin I can’t quite climb inside of but I can’t shed either. It’s like I’m halfway in between, stuck, both, inside and outside. Looking out from my body is so different without eye lashes. It’s so profoundly odd. It’s so unknowable, it’s so impossible to describe, without feeling what it feels like to have your eyeballs not protected from the air and wind and rain. My eyeballs are too close to people, too. Too close to their words and assaulted by their breath and too close to everything. There is a way in which eye lashes provide protection and cover, even though they are just thin little hairs no longer than an inch.

And it’s so odd what stays with us. The times I’ve thought of Lorde’s line are all cancer-times. Whenever it came up as someone’s research, there were those words, in the back of my mind and the image of a raindrop falling into an unprotected eye informed me, always. Cancer came up in other peoples’ research all the time. My academic supervisor, who also had breast cancer, writes about the cultural politics of breast cancer, and so do some of her other students. I wonder though, how can they? How can one write cancer without having felt what it feels like to peer out at the world from eyelash-less eyes? It’s impossible to be informed without having ridden up the elevator to the chemo floor, with your eye lashes or without them, knowing that when you step out of the elevator and sit down in one of the chemo chairs they will pump you full of deadly poison? It is am embodied knowing.

An embodied knowing I wish I could shed, but it is too deep inside me. And my eye lashes fell out. I guess it wasn’t the eye lashes that had the last laugh. It was the last chemo that had the last laugh.

Of this chapter.

I want to keep laughing forever.