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.

 

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moments

Sammy called me this morning, frantic. The car was missing. Last night, I parked it on the corner. This morning, it was gone. He needed to go to work. How had our one-year old Prius vanished? We had four phone calls in a five minute period. All four were haphazard, fragmented, incomplete. I straddled my bike on the corner of Broadway and Ash, and dialed the impound lot. Sammy called back. I disconnected the impound lot. No car, frantic Sammy on the line. I was the one who used the car last. Where was it?

You know that kind of moment? Frantic, scared, incredulous, the moment when you need the world to stop so you can right everything immediately before you lost your brand new car right when you have a seventeen page to-do list? Cancer is like that, but the moment doesn’t right itself. Instead the world spins in slow-motion while you stand there and get dizzingly sick from chemo, and you are trying to hear but you are too tired, and you are straddling your bike  but you can’t hold on because your hands are swollen as f*ck and tender and blistering, and there is someone offering you three different flavors of a re-hydration drink but you can’t quite reach them, and your pounding heart is seventeen hundred times louder than the very busy intersection. The moment lasts six months.

Then, after being in this moment for six months, you can clip your helmet back on and start peddling, and at least get to the next intersection, where the crossing guard is Dr. Yoga-Surgeon. It will probably be the worst intersection because it is the intersection at which you will volunteer your arm to a nurse who will wiggle a needle into your vein even though you detest needles, and you will wake up hours later after Dr. Yoga-Surgeon amputates a body part that is intimately a part of how you understand your entire way of being in the world. Dr. Yoga-Surgeon will leave that body part in a specimen jar in a drawer at the cancer agency and it will never feel pleasure, it will never go topless in the sunshine, it will never overflow out of a push-up bra, it will never be whistled at by an inappropriate someone, it will never feed a baby, it will never bounce around in a built-in-bra tank top, it will never shimmy in between your shoulders (ok it never did that anyway, but now it really won’t). It will never do those things ever again because it will be in a specimen jar in formaldehyde at the cancer agency and the top of the jar will probably gather dust as it sits in its spot on a shelf with all the other cancerous, amputated breasts who’s owners traveled this particular and harrowing path.

This intersection will be worse, but before you even get there you find yourself weaving through a gauntlet someone called a street. It is a gauntlet. Broken glass pops your tires. You weave through cars and you carry in your backpack a prescription for a medication that will cause false menopause and block all estrogen in your body, all folded up with your list of dissertation references that somehow still has a thousand errors. The medicine will make your bones weak and your belly flabby. You haven’t fallen off your bike in years, but you skin your knees and your chin and your left elbow when you fall off again and again and again and again. Even though all the knobby points of your body are bloodied from the number of times they have scraped asphalt, there’s some really warped cheerleaders silently screaming about positivity, and you could care less because you think they must be dead cheerleaders come back from the worst Halloween you can remember. Their costumes are terrible. The phone rings, and you ride one-handed while listening to your doctors’ secretary explain something that makes no sense. You wonder about gender and why you never realized how much you loved your breasts. You pause on the curb to download medical articles so you can explain to your doctors’ secretary, so she can explain to your doctor, why she makes no sense. The clasp on your helmet clatters to the ground and that’s the loudest sound you hear even though there are trucks blowing carcinogens into a cloud right in front of you. You begin emailing with your cancer-buddy about the media-archive-storytelling-young-cancer-project you need to do more than you need to breathe, and in rapid-fire style you hammer out a goal broader than the sky itself. What kind of activism would it take, you wonder, to throw the trucks that make clouds of carcinogens off the edge of the world? The amputation intersection is a mirage in the distance, and you cannot tell how close or how far the amputation intersection is from where you straddle your bike, you only know that like you desperately need to start your media-archive-storytelling-young-cancer-project, you  desperately need Dr. Yoga-Surgeon’s secretary to change the number of days until the mirage is closer.  It would be ironic, asking her to move the mirage, if you had time to think about what a mirage is. But meaning is lost, vocabulary woefully insufficient, language has never seemed more destitute. The feminists/poststructuralists/queer theorists/critical decolonial thought producers had better get to making up some words with slashes and dashes and lots of letters in between, new words, words we’ve never heard of, sounds that have yet to roll around in our mouths, but probably we will also have to make up a whole new alphabet for this one. Language fails. Metaphor fails. Mirage fails. This is these days between chemo and surgery. The only respite is yoga. The bike isn’t allowed inside the yoga studio, but Dr. Yoga-Surgeon is there, and so you know it’s not a dream.

In case you were wondering, the car was moved, towed to the other side of the street. Thank you, tow-truck, for not towing to the impound lot. I left it too close to the driveway. That worked out a little better than cancer.

 

I’m being researched

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

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

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

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

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

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

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

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

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

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

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

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