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.

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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.

othering me: i can’t fold my body that way

Ouch, she said. It’s the bones, of course. It’s not being able to move normally. It’s aching from deep inside the marrow. It’s a tremendous pain that begins as soon as I sit down, lay down, am still. It creeps through my ankles and hips and ribs and femurs and spine. And so I walk. I pace. I go to yoga and kickboxing and the gym. I ride my bike. I bounce on my toes at my standing desk while I type.

I’ve never had chronic pain before this. Sure, my back hurts sometimes from sitting in front of my computer writing, and my ankles are weak and perpetually sprained and swollen from my totally clumsy way of navigating the world, but it’s never chronic pain like this. I mean this is actually, pain. Like a really terrible headache, but in my body. Sometimes I can feel the toxicity-based-pain in my skull and in my fingers- no bone is spared, but mostly, it moves quickly between my hips and femurs and ankles. I am the highest dose of the medicine that’s supposed to fix this, but alas, it hurts like a b*tch. Luckily, it won’t last forever. As soon as the ugliest poisons are diluted enough each cycle, the bone pain will fade, leaving in its place neuropathy, which means that my hands and feet are basically numb from absorbing so much toxicity. Probably, the bone pain will fade tomorrow. Then I have one more cycle left.

Today, I went to an academic lecture and discussion at UBC. I went to a different one last week, and at the beginning of that one, the speaker said something to the effect of, “I want to invite you to do whatever you need to do with your body to be comfortable, whether that means walking around, stretching, laying on the floor, sitting on a chair, etc., in order to bring awareness to the ways that academe shapes and disciplines our bodies and excludes particular ways of being in the world through that shaping/disciplining.” I thought that was so cool, and today, I would have taken her up on the offer. After ten minutes of listening to today’s lecture, I couldn’t sit in my chair any more. The bone pain was traveling between my hips and my femurs, and I had to get up. I stood in the back, pacing and bouncing and marching in place. I’m sure people were like what-the-eff? I worried I’d distract the speaker, but she never looked up from her paper.

And so then we moved spaces, and the group became markedly smaller, and we had a “discussion.” I warned the person convening the discussion I’d need to move about beforehand and she was entirely fine with my doing laps around the meeting table, but I’m sure the other participants were like WTF?

I can’t fold my body that way. I can’t fit into academe’s stringent body-shaping. I can’t sit in a chair for more than ten minutes, especially if its lecture/professional-style, with my feet on the floor and my hands in my lap, and the only variation is crossing my legs.

Today’s experience trying to mold my body into normative shapes and be comfortable about it felt glaring. It was just another time, and now, a time where it was very obvious to others, that I no longer belong in the realm of the healthy normal, a time where I had to broach normativity and where I embodied otherness in a way I never did before cancer. You see, I am and have a body I can normally make fit, a body that can normally access privilege without a second thought. I am a white body, a cis-gendered girl body, a body that is whacked and policed and monitored through gendered body image, but nevertheless a body that fits in airplane seats easily and that can fit into the sizes available at stores where I shop.

Because of my body, I’ve gotten a lot of “things,” if you will- I’ve gotten on airplane and flown across multiple states without any identification post-9/11, and I assure you, this ability to convince folks I was just a girl with a lost purse and a real need to get home was directly related to my race and gender and relative young-ness. At that point, I was probably twenty, maybe twenty-one, and I smiled cute and shrugged my shoulders and forced my eyes to fill with tears when they tried to block me- and suffice to say, I got from Houston to LAX without a hitch and even ordered some alcohol on the way.

Similarly, most of my before-cancer experience in hospitals took place in Latin America, where I was a white female body negotiating for care for other white, mostly cis-gendered female bodies. I knocked that shit out of the park- I got the best doctors and I cut all the lines and had all the tests expedited. I refused to wait, and so I got what I wanted- be it a helicopter to air-vac a teenager from Nicaragua to Miami now, or be it skipping ahead of the waiting-room full of patients, or be it having the doctor close her office to drive with me two hours to someone with an allergic reaction. You don’t need to tell me how insanely colonial and racialized this is: effectively, I used the power afforded to me by my white skin, my emergency credit card, and my ability to demand I get what I want to make sure my people were treated before everyone else. I took full advantage of all sorts of privilege and justified it by saying that the people I was caring for needed it, and that I was insanely busy and couldn’t wait in the waiting room. We could do a whole analysis of development work and youth programming vis a vis health care, and the sorts of colonizing relationships justified in the face of something like health, or safety. But such is not today’s topic.

Today’s topic is that today, the multiple ways in which cancer has othered me, in many ways for the first time ever, became blatantly apparent in the lecture, when I became so other, so unable to meet the simple and normative standard of sitting in a chair and listening. It’s not just this moment, there are many moments in which cancer makes me the other.

bell hooks, writing about her experience in graduate school, writes “nonconformity on our part was viewed with suspicion, as empty gestures of defiance aimed at masking inferiority” (hooks, 1994, p.5). Refusing to conform by sitting did indeed warrant scowls and stares, raised eyebrows that seemed to suggest, “And why can’t you simply, sit? And why can’t you discipline your body, as we are, here, together in this room?” Of course, they would have certainly looked the other way and nodded knowingly, probably with pity, if they knew I had cancer. But they did not know, and they seemed to ask, why must you refuse this basic norm, when we are already here in a space that feels threatened, discussing critical race theory, when we are here already trying to undo legacies of colonialism, racism, misogyny? Of course, they didn’t actually ask, and I am writing of how I interpret their gazes on my body, their turned heads and the feeling emanating from their body to mine.

I wonder, did they remember what the last speaker asked, about making space for bodies out of chairs? Did they watch me bouncing on the balls of my feet in the back of the room and think, like I did, of the last speaker who gestured to refusing that our bodies be disciplined by chairs? Did it occur to anyone, that we were together discussing global justice, talking about capitalism and its ill-will, and that, perhaps the reason I was pacing was because the front-end of capitalism- cancerous invasion of our bodies- was playing itself out inside of my breast?

No, I am sure they did not think that. But that is not the point. The point is, cancer has forced me to experience otherness in a way I never did before. Even in the cancer-world, I inspire horror. Regularly, when I meet older women with breast cancer- which is like, every day- they gasp about my age. Their hands fly to cover their mouths as they murmur, “but you’re so young.” In the regular world, horror, too. I inspire skin-crawling fear. I embody that which no one wants to be. Nobody wants to imagine it could be them, and I’m too close. That girl, that almost-Ph.D. with cancer. It’s easy to imagine it only hits the old people, the sick people, the people who drink too much coke and eat too much fast food. Having me in your midst disrupts that false sense of security, pops the bubble of the other— the other is your peer, your graduate student, the girl sitting next to you. Even at the breast cancer exercise study, I’m decidedly othered as impossible in relation both to the many older women present, and most significantly in I’m othered as impossible in relation to the graduate students working on the breast cancer project: for they are different than the women with breast cancer. Except then there’s the grad students with breast cancer. Sorry dudes, I’m here. We’re here.

There are of course safe spaces. There are safe spaces too, of course. There are knowing nods from other women with cancer. There is the fact that everyone in my academic circle is insanely supportive. There are big hugs and knowing hugs from my academic mentor who had cancer, and who is of course in charge of this space.

But still, there are the raised eyebrows. Surely, they would turn right into kind eyes if they knew, but I think the point here is that we can’t always know. Besides, its entirely unfair to only be accommodating when you know, and puts the burden of educating and informing and telling directly on my shoulders to expect me to justify not being able to fold into an appropriately disciplined chair so that others can be comfortable, can be knowledgeable, can make kind eyes instead of eyebrows-raised-eyes.

And so I have to wonder: what might a pedagogy look like, where there are no expectations? Would it be a pedagogy of encounter? Situating the self in relation to other in such a way that denies and rejects expectations is such work: like anti-racist pedagogy, it takes consistent encounters with the uncomfortable, consistent ability to reside in a space of unknowing, consistent willingness to f*ck up. How might we encounter the political in the space of cancer, in the face of the constant seduction of normalcy, of body policing, of urge to hide cancer, of positivity? What does a political pedagogy of cancer look like, and how do we engage such a pedagogy as communities of people where not everyone has cancer?

I wonder what would happen if we took the chairs out of the lecture? What if we sat on pillows instead? What if we started each lecture with some way for participants to share their experiences of the day, like -oh no, here we go- with an energizer or short check-in? What if we put on different ways of sensing the world, and thought theory through those glasses that are not our own? How do we think about what is radical and political, in a space already so policed that we almost need normativity in order to gain credibility? What does it mean to be a young scholar who cannot fit oneself into normativity and cannot thus gain credibility that way?

There is much yet to think about in terms of how cancer others.

There is much yet to think about in relation to how we might engage a political and embodied pedagogy of cancer.

There is much yet to think about in a world where we so clearly wish to ignore, expel and banish cancerous bodies.

henna

I’ve done henna a few times. Once, at an Indian wedding where the artist stayed during the reception and painted hands in a booth. Another time, Telegraph Avenue, teenage years. Casual henna. Nothing serious. I’ve always thought the curls and scrolls and dots were intriguing, whimsical, fun.

ImageAnd so, Friday night after my BFF arrived I limped into the henna shop, sat myself down in a chair, and chatted with two sisters while they freehanded my head, promising me the whole time it would make my hair grow. I was limping because, well, you know, there’s so many things they don’t know about my diagnosis, my medicine, my treatment, my outcome, and this time, my side effects. To look at the bottom of my feet, you’d think nothing was wrong. They look entirely normal.

Five or so six days ago, I thought I was developing some kind of painful-ish callus on the bottom of my foot. So, of course, I set up a foot spa. I used a bubbly soap specifically for feet, soaking for a while before I went at that callus with an industrial strength pummice stone. I scrubbed and scrubbed, and my feet became oh so very soft, but the weird pain was absolutely not going to be scrubbed off. I probably made it worse in my quest to pummice-stone the pain away, but really, who would think chemotherapy, injected into my veins and traveling through my blood stream, would cause painful spots on the bottom of my feet?

By the day we went to get the two sisters in their red henna and brow bar to paint my scalp with curly cues and squiggles reminiscent of of peacocks and spring flowers, the pain was becoming really significant all over the right foot, and starting up on the left foot. What’s a girl to do? Obviously, strap industrial strength ice-packs to the bottom of my feet and curl up in bed. It was becoming so bad that I could only walk with thick fuzzy socks and slippers on my feet, even inside.

The next morning, worse. I went everywhere in the slippers and fuzzy socks- outside, grocery store, yoga, even out to dinner with my jeans tucked into myphoto(23) slippers and my hot pink extra-fuzzy socks peeping out over the side. It was classy. When I called to report this ailment to the nurses’ line, they had the on-call oncologist call me back. She was baffled. Totally confused. The kind of chemo I’ll receive after I finish the AC is Taxol, and Taxol can cause numbness in the hands and feet, but right now I’m on AC. And AC never causes numbness, which is the most common symptom of taxol-caused-neuropathy, though occasionally there can also be some pain. Nevermind the fact that my feet are absolutely not numb, but rather, intensely tender and painful. She called another oncologist, inquiring about possible causes. Nothing. No one knows why my feet decided to freak out and put a halt to walking for a few days. No one knows why they look kind of like they are the wrong color and are still tender to the touch. Simply, no one knows. Most people around me seem horrified that they could not know what is going on, or at least, that they couldn’t figure it out or venture a guess. To me, it seems par for the course. There’s so many unknowns, so much uncertainty. Cancer is, precisely, not knowing.

An hour after the sisters started my henna, they finished. I left the henna on all night, but still, it didn’t set very well, leaving only a pale orange-ish print all over my scalp. Still, it was fun. I like it the curlies and the dots and the little designs they painted. I’ve not really worn it this way in public, still wearing a wig or a hat, but I did wear it this way in yoga, which was entirely anti-climatic and totally fine despite the fact that it seemed like a big deal I was going to yoga with a bald head. I do wear it this way at home, admiring the designs in my reflection in the mirrors and windows. It’s much too cold to go out with a bald head, anyway.

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sick

After each chemo, I become what I think most people envision when they think she has cancer: very sick.

I sleep twelve hour nights. I watch movies. I cannot decide sometimes whether I am insanely hungry or horribly nauseated. I sip ginger ale and suck on ginger tablets and wager if I can get buy with less of the dreaded steroids that make me feel so jittery. I wear pajamas all day. I take long naps. I ask Sammy to buy out ginger-chew Gravol (like Dramamine) at the drug store. I marvel at how much my bald head looks like an alien in the mirror. I eat apple sauce and frozen grapes, and sometimes plain rice. I have zero desire to cook, though I’m always trying to think of other easy-to-prep and easy-to-digest options.

I had chemo Friday. I even start to feel sick just thinking about it, it’s that awesome. I’m immediately OK after chemo, but it doesn’t last long. Soon after, the blood drains from my face and I turn ghostly pale. As I’ve gone through the treatments, this happens faster and faster. After the first chemo, I woke up the next morning and went to a dissertation committee meeting. Chemo numbers 2 and 3? Definitely sleeping the next morning.

The sick feeling generally lasts four days. The first day, my pee is the color of koolaid, like the cocktail they inject with me. After that, I’m left to lull around in a half-awake, really-yucky state for a few more days. On the fifth day, I’m still very tired, but I can creep out into the world, and kind of pretend I’m healthy. Then I have some really great days to write my way out of five lost dissertating days before chemo again on day 13. Those are the days people generally say, “Wow, you look so good!” Trust me, I don’t look good on the post-chemo days, but thankfully there’s a bit of a reprieve between the infusions.

I’m already dreading January 23, the next chemo, though I imagine afterwards I can cautiously celebrate that Jan 23 will be the last of the cocktail that causes flu-like symptoms, before I switch to one that folks describe as making you feel like you “have a really bad cold.”

So that’s chemo for you.