the head, the heart

“It was worse for me, than the cancer itself.” When I heard those words, I sighed a big, giant sigh of relief. On the other end of the phone line was a woman telling me about how cancer stole her fertility. It was worse, she told me, than the the cancer itself. I thought I was the only one. I wasn’t. And even better, she’s through. Her depleted ovarian function and out-of-commission uterus was worse than the cancer itself, but she got her baby anyway, and she’s expecting a second one soon, a second baby squirming in the uterus of another woman until it’s time for her to hold that baby in her arms. She spoke with wisdom and calm, of the turmoil and of the resolution, and of the way things happen in the end, just as they should. I was relieved.

I always knew we’d have children, it was only a question of when. We were waiting until I was through the PhD, until I had a tenure track position, until we were solidly situated in a city we would expect to call home for a long, long time. That was the way we organized time, how we thought about our lives, how we organized events on a timeline, one after the other. But we’re not on that path anymore. We have no timeline. The organization is amuck. And who knows where we will be in a year, in two, in ten. And more importantly, who cares?

With a cancer diagnosis and many months of treatment under our belt, the way I think of time is entirely different. There isn’t a ton of it, and it’s never certain. There’s always an unknown, a question, a not-knowing. Things could change in a moment, and radically so, or they can march on in the mundane, so mundane that it’s boring. And we can never know. There is no vision, no mirage, no whisper of what the future holds- simply, we cannot know. That’s not hopeless. In fact, it could be just the opposite. It is both hopeless and hopeful, it is impossible and settling. We cannot know, we don’t know what will come. And so planning things like babies and careers is both exciting and pointless. It is thrilling to think ahead and utterly without reason.

Yet part of me is still stuck in the rut of planning, obsessed in the security of what should be, what could be, what is, what was, what I know is impossible. That part of me is my head, telling me we should be practical and watchful, waitful and hopeful, telling me a baby should wait until I have an office on a university campus and something to profess over. But the rest of me, the heart beneath my fake boob that is feeling the world, begs to differ. The rest of me shakes her head at  waiting, at willful planning, knowing that it is useless, knowing that following the heart is a path more studded with jewels than the journey the head wants to take.

I am extraordinarily fortunate to have a family member I trust deeply who wants to carry our baby, in spite of the warnings and risks that made me raise my eyebrows at the fertility clinic. It just seems so intentional, and it is intentional, and intentionality lights the fire of planning, of details of spreadsheets and worry. If she becomes pregnant with one of our embryos, it is intentional. There are so many costs, so many details, so much coordination to be ironed out. It’s not as though we went off of birth control and let what happen will: it’s the willful, intentional, hopeful act of implanting an embryo. It’s way more intentional than sex without birth control.

The intentionality is hopeful and heavy, and brings to bear questions that make me wonder what will happen, if we don’t have enough money? Will it be insane to start a job with a newborn? What will happen if I don’t get an academic job? Is it a bad time? Have we waited long enough to ward off cancer recurrence? Is this smart? Of course, it is my head asking away with questions, when I know that we will be OK, that poor people and wealthy people and stupid people and weird people have babies who are, for the most part, OK, all the time. Besides, my mother assures me lots of people move and get jobs with babies. Thanks, mom, I didn’t know that.

My heart laughs. Who cares if I’m on the job market? Why wait? Haven’t I learned anything from cancer? Isn’t it blatantly obvious, now, that waiting for something you want badly is without reason, that money is the way capitalism chokes the life out of beautiful people, that if its time, its time and the rest will follow?

And my head intervenes. But you’re on the PhD job market. But you have visa costs. But you don’t know where you’ll be in a year. Yes, my heart responds, but you do know. You will be home, somewhere in the world, with Sammy and Benito and Lulu, and you will continue to do something you love, as you always have, and there will be yoga classes and salsas simmering on the stove and friends who drop in to say hello. So in fact I do know where we will be in a year, we just don’t know the specific details I obsess over. But we do know something.

And so? The head? The heart? Who gets to say when we get to implant an embryo into our dear, dear surrogate?

loving kindness, my tenderhearts: before and after

Before I had cancer, I never said things like “loving kindness” and “tender-hearted,” unless, maybe, I was talking about orphaned bottle feeding kittens. I mean I fancy myself a good facilitator, one who opens spaces for young people to participate in social justice initiatives and media programs in risky, empowering, hopeful, terrifying, bold ways— but mostly, I fancy myself the facilitator. I like to be part of- ok, in charge of- moving and shaking initiatives, feminist power-house communities, youth organizers, creative media-makers.  So I might have told my youth to be gentle with each other, to tread carefully around the stories they shared with each other about social justice, to witness each others’ stories and the group process— but I wasn’t really one to get all up in the witness-y/tread gently/tender-hearted discourse around my own experiences of the world. I mean hey, I go to yoga, I eat good food, I bottle feed kittens and write about gender, media, and civic engagement. Isn’t that enough tender-gentle-things? Warm fuzzies all around, too, as long as I’m in charge. Of course, I’d give my speil about my experiences in order to model how I wanted youth to tell their stories with vulnerability, but I kind of thought grown-ups stopped doing that. Like once you out-grew the youth category, the group hugs and silly ice-breakers faded into the distance and were replaced with high-backed chairs and yellow notepads and people working in offices (oh, the horror!).

Enter cancer, at which point I ceased to be in charge of, like, everything, and then I met all these people who kept saying “loving kindness” and “tender this heart and tender that soul” and the like, until eventually I sort of started thinking (not saying, but maybe whispering and definitely writing) those things too. Even though I pretty much felt like I was dying last February, someone pointed me in the direction of Callanish and I went to a young adult cancer group there, and it was tender, and it was loving and it was kind and it was real. And in July, I went to a retreat, and it was also tender, and kind, and loving, and real, and careful, and magical. And today, I worked with the artist there on my breast casts, and it was tender, and kind, and loving, and real. See, I’m writing about loving kindness and tender moments, even if I’d rather hop on a roller coaster and whirl right through them in a blur so colourful and so fast no one would really be sure what was happening, not even me, but soon enough, we’d be on the other side, breathing hard and waving our hands to gesture at that one time, when I had a touch of breast cancer.

But since my fairy godmother apparently forgot to leave me a magic wand to grant myself these kinds of wishes, I’m left instead with an organization that cares, an artist who does work with girls in Nepal on the side and who stocks her art therapy studio with glitter and feathers and acrylics, two breast casts that my dear friends CJ and A made for me when we had the infamous “Goodbye Left Breast Gathering,” and a body that no longer fits into these two breast casts.

I literally no longer fit.

My breast is not that shape anymore. It can’t move and bend and squish into a pre-determined form the way a natural breast can, much less the form that was made from my old breast. Sounds kind of like my life trajectory, doesn’t it? Like pants you discover are too short five minutes before you need to leave for work when you’ve already picked out your top and your shoes and your earrings and they only match the now-too-short-pants. It’s a rushed, shocked, kind of not-fitting, but also the kind that can’t be given too much attention because there is too much else happening, too many other moments exploding and opportunities blinking and desires flashing, and also, you still have to find some other pants to wear because you can’t well go to work in your undies, even if they are sparkly and lacey, and you do have to go to work, because you need to pay the rent and your students need to learn about globalization and you want to go on a fancy vacation, which requires some ahead-of-time work, of course.

You know when it really hits me, this not-fitting, the absurdity of this fake-breast shoved under my pec muscle, albeit shoved skillfully by Dr. Yoga-Surgeon, an artist in her own right?  When I chop garlic. Weird, right? You see, I’m right-handed. So I smash the garlic cloves, with my right hand on the butt of the knife, and my left hand pressing down sideways on the sharp part, and the garlic peel curling off the clove underneath the side of the knife, and the smell erupting from underneath the knife and the kind of sticky garlic residue leaking onto my left hand. To do all that, I kind of lean into my left pec, and my hips press into the counter, and I’m sort of on my tippy-toes. And the breast imposter, what does it have to say about smashing garlic? It sears. It aches. It screams, “this is not how it is supposed to be.” The muscle is angry to be separated from my ribs, and yanks the whole boob-expander up my chest each time I crush a garlic clove, in what would be the weirdest “I can move my boobs on command” party trick ever.

So here I found myself, with the Art Therapist Who Presides Over Feathers and Sand and Acrylics, and the breast casts that seem frozen in a moment in time that is so wildly distant, a moment in time I so achingly want to inhabit. I painted the first one, the one we made as a practice, white. I know, I know. White. It’s the same color as the breast cast. Would you even know I painted it? Who cares if you know? It’s for me, anyway. And I added some silver and some blue, and more white. Inside, outside, white. Touch of silver. Maybe there was a touch of cancer underneath. I’m pretty sure the Art Therapist Who Presides Over Feathers and Sand and Acrylics doesn’t care if they’re white or plain or ugly or offensive, so why should you? I want to cut up the words from all the medical files, and stuff them inside of the breast as it was, plaster them on the breast pathologized and ruined, the breast that kept the cancer inside, and I want to splatter paint it with the pints of blood they drew from my poor veins, I want to trace the violence they enacted on my body on the faint lines of paper mache that tell the story of CJ and A, molding the breasts casts while everyone I love in Vancouver looked on.

It’s a tender evening. It’s a night we cooked together because we couldn’t bear to be far apart, and we smashed garlic for the arrabiata sauce, and we poured wine and bottle fed kittens and snuggled on the pink shaggy carpet in our living room. There is no roller coaster for me to hop on and make curlycues with instead of making my careful way through the cancer evidence, the breast casts and the fake boob, the scars and the friendships, the nausea and the memories. So maybe there is such a thing as loving kindness. They say there is. Maybe it’s like cuddling on the shag carpet and bottle feeding kittens and watching movies. Maybe grownups can still have group hugs and blue elaphants to sleep Maybe it’s like feeling tender and open and taking a bath and reading a novel (gasp!) instead of hacking away at the job letter. Maybe it’s just letting things be how they are. Maybe it’s just playing the ukelele with Sammy until the moonlight streams through the window.

Maybe.

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.

maybe.

I had the dreaded chemo Thursday. Today is Saturday. It’s only Day 2. Based on my last three experiences, this fourth one should have brought endless sleep and icky nausea and general malaise.

It is different this time. Dare I say, I feel OK.

Yesterday I woke up so, so, groggy and made myself drink some ginger tincture, and went to the exercise study (deserving of a post in itself, but I go to a little gym three times a week full of women with breast cancer and a lovely trainer and I’m a research subject instead of a researcher). I walked on the treadmill, which I never do, not even reaching my target heart-rate, a number I usually far exceed. I lifted weights and chatted with the only other woman close to my age in the study. I stretched. Then I left, and I bought $10 organic berries from Whole Foods. I gulped some ginger tincture. I had tea with my fellow dissertator S, which was lovely, and came home and napped. I got up and rode my bike to yoga, where I practiced next to D, one of the most hard core exercise people I know. I did one set of everything, and two sets of some things, and I laid in savasana a lot. Then I biked home and had more ginger tincture. And I made an awesome dinner for Sammy and me– vegan mac’n’cheese with quinoa pasta! Amazing. The cheese was red bell pepper and tomato and onion and cashews and turmeric. Delish. We cuddled and watched one of the amazing movies our dear friends lent us (don’t worry, we are taking such good care of them!) I thought maybe I was feeling OK from the steroids, but this morning, also OK. I woke up and Sammy made me fruit salad and I ate it all. That’s right, I ate something besides plain white rice and frozen grapes. And then I cleaned the kitchen. And now I’m writing a blog post and drinking the chai tea my college roomie sent. And I don’t feel like I’m going to hurl. I better have some more ginger tincture.

I spent the whole day only taking care of me and my body. I worked out twice. I napped. I listened to Sammy play the marimba for me. I ate whole, organic, home-made, good foods. I drank warm tea. I biked in the sun. I wrapped myself in an aqua shawl, which is a healing and calming color. I cuddled with Sam and wore fuzzy slippers. I took a bath and read a novel (not a diss book, people. a novel, a fun book, a story). I went to bed before midnight. Maybe we should all take care of ourselves like that more often. It occurs to me that taking such good care of our bodies is pretty rare. When was the last time you put on fuzzy socks and brewed your favorite tea and read a really good book for fun? When was the last time you thought about what color you should wear to make you feel good? When was the last time you just layed in the sunshine and let it soak into your skin? When was the last time you really tasted a berry salad? When was the last time you were brutally honest about what you want in life? When was the last time you let yourself day dream? When was the last time you let yourself sink into soft blankets without thinking of anything but how soft the blankets are? When was the last time you let yourself lay in savasana in yoga? We should do that more. We should take care of ourselves more, we should surround ourselves with soft moments and caring and color and kittens.

I’m kind of waiting for the other shoe to drop. I expected to feel crappy. I dreaded this chemo. Sam had to change his schedule all around to come with me even though I had other chemo-buddies who volunteered, since I was so worried it was going to go poorly. People sent vibes. Maybe it’s that. I have not taken off these anti-nausea wrist bands. Maybe it’s that. My mom generously gifted my a totally epic massage at the Hammam pre-chemo, and it was divine. Maybe it’s that. People brought movies. Maybe it’s that. The naturopath prescribed all kinds of things, including ginger tincture, and I definitely think it’s that.

It just feels… tentative. Maybe this weekend will be OK. Maybe I can go on a walk in the sunshine with a visiting college friend. Maybe I can finish editing my job letter. Maybe I can do laundry. Maybe. Maybe. Maybe.

That’s kind of what life is right now. Maybe I can do this or that or the other thing. Everything is uncertain, because I have cancer, and also because I’m on the totally uncertain PhD job market, and I’ve only had on Skype interview which resulted in not getting a follow-up interview. Maybe I’ll get an academic position- a job or a post doc or something. Maybe we’ll be in Vancouver at this time next year. Maybe I can go to yoga tonight. Maybe I’ll lose my eyebrows and eyelashes in the next round of chemo. Maybe I’ll remember to buy green tea the next time I’m at the store. Maybe it will help that I’ve cut flour, sugar, corn, soy, eggs and most animal products (I just can’t give up on cheese entirely) out of my diet. Maybe it makes sense to have radiation. Maybe I should contact an editor at MIT press about getting my diss into a book. Maybe the chemo will work. Maybe I’ll go on a young adult cancer adventure retreat. Maybe my cousin will be pregnant with our baby sometime soon. Maybe I should go to the store and buy out nausea wrist bands and ginger gravol. Maybe I should write my methodology. Maybe I’ll continue to feel well.

Working with uncertainty, living in uncertainty, feeling out what it means to live in this world with maybe, without the ability to reliably envision and depend on any kind of certain future. Today, uncertainty is delivering a sunny afternoon and a calm-ish belly. I’ll take it.

stranger and stranger

Things are so odd in cancerland. Every time we get more information, or I take a phone message, or I look at my body, or I make a decision, things get weirder. I am making decisions I didn’t even know were possible to consider a month ago. I am interfacing with people, places, and spaces that are entirely foreign. And it is profoundly strange.

We got the results from my node surgery: negative! This is very good. I do still have a node in my neck that is slightly swollen, so I get that biopsied Friday, but otherwise, the nodes are clear. Everyone is very invested in knowing what stage my cancer is- everyone asks this, all the time, urging me to discuss it with my doctors and to have a clear idea of stage. I think people might not realize that stage is a bit arbitrary– someone decides what stage the cancer is. It is about size, node status, and grade. Mine is large, my nodes (look) clear, and its grade 3, which means it’s aggressive and fast-growing. The cancer is stage 2. The thing, though is that who knows if that means anything. Maybe it means a percent here or there, but actually, does it matter? In my case, who knows. We don’t yet know how nasty the cancer that took up residence in my body is, we don’t know if it will recur or when it could recur. Stage is knowledge people I care about crave, and I understand the relief at the early-stage diagnosis, and also, it feels entirely arbitrary. It feels like little more than an assurance cast into my world by doctors answering my questions. For such a sought-after piece of information, the doctors give it little time and attention. Just a tiny piece of knowledge, produced in our interactions, in my attempt to understand more and their inability to communicate years of much more finely tuned complexity to me in such a short period of time. Likewise, I have passed on this not-very-informative piece of information, and people grasp and run with the wind like the fact that the cancer is stage 2 matters more than the world itself.

Hair matters. My dissertation matters. Who can be a surrogate matters. My sweet little kitten matters. What we’re having for dinner matters. I’m just not so sure percentages actually matter.

Speaking of what matters, today Jose Esteban Munoz died. Munoz was a rock-star academic who’s worked seriously informed scholarship on race, gender, sexuality, temporality. I love his work on utopia, and his insistence that something more, something beyond can exist; I love his work on queerness as the insistence that something not yet materialized can inform and become the world in ways we do not yet know. He just died. I don’t know why, despite multiple internet searches. Simply, an academic in his late forties, he stopped existing yesterday. There was no warning. No one to tell him his body was in any kind of “stage,” or that he had a such-and-such percentage of five year survival, or that if he integrated milk thistle and lemon water into his diet, he’d have a better shot. Nope, he just woke up one morning, and that was all there was left.

What would he have done differently if he had known? Can you think backwards like that, obsessing over the past, over moments and choices and possibilities before they became decisions? I obsess sometimes, over backwards thinking. What if? If this, then that? As any good poststucturalist scholar knows, I am well-aware that this sort of correlation and causation is impossible. And yet, I cannot stop wondering, thinking, meandering back into the recesses of time, hoping for a glimpse at what never was, wondering if what never was included breast cancer, now.

Thinking backwards. There is a possibility my Aunt Sara had breast cancer in her early 30s. Why, I wonder, did I not know this? My grandmother, Sara’s mother, died of melanoma when she was not very old at all- in her early 50s. Melanoma and breast cancer are loosely correlated, with melanoma being related to the gene mutation that is linked to breast cancer. Three generations. Three women. We’ll know with the results of the gene test, if this is a horrendous coincidence or a family mutation.

Family got in the way. No one talks to Sara. They say she’s manipulative and mean-spirited and obsessed with wealth. It may be true, partially true, sometimes true, if of course, we pause for a moment to ascribe to the idea that there could ever be any kind of truth, however multiple, fractured, or shiftless. Truth doesn’t seem to be a good measure here, mostly because I have no truth of my own to compare- I have relatively few memories of Sara.

I remember once, when I drew Aunt Sara in a family Christmas picture and presented it at dinner, and she asked why she was so much bigger in the drawing than everyone else. My seven year old self realized in a split second that though she was obese, it was wrong I had drawn her as such. Mortified, I said she was pregnant and that I wanted a cousin. I remember another time when she took my brother and me to F.A.O. Shwartz in San Francisco, and she bought us stuffed giraffes and tool belts. In retrospect, maybe she was trying to break the gender binary, however I was utterly confused about what to do with a tool belt. She often told me how much I look like my grandmother; her Oakland hills home at white carpets and a spiral staircase I loved; once, she made garlic mashed potatoes and I found a hair in them. And that is all I can tell you about Sara. The rest of what I know of this blonde woman, who married a man as old as my grandfather and lived in the Oakland hills is hearsay. Drugs, stealing money, sex, the fast life. A house in Tahoe, scandals, manipulations, tantrums. The list is long. I’m sure she is probably nuts, but really? Her brothers aren’t sure if she had breast cancer in her thirties? 

What is knowing? Did they not want to know? Is knowing too hard to know, sometimes? Knowledge is produced in between people, in relationships and events and moments and practices and beliefs. Families make knowledge over dinner, designating what is important enough to think about and what should be left aside; Sara made knowledge with me when she asked about my larger drawing of her body, and I knew, immediately, to obscure that I had meant fat when I drew her. I learned fat was not OK. And did she mean to teach me that? No. But I learned. We shared knowledge about bodies, as we sat at that family dinner. I am most certain I am the only participant in this knowledge-sharing moment that remembers.

Knowledge is fleeting and sensual and intimate, and we can forget knowing. It happens in the small moments, like when I press the doctor for a stage, a prognosis; like when everyone else digests that piece of information through their pop-culture-cancer-lens. When knowledge is traumatic, sometimes we forget it. We block trauma in ways that are healthy and life-giving: some things are too hard to remember. And yet, it seems unethical to block knowledge, and the ripples are far and wide. It feels entirely wild that I could have an aunt who maybe had cancer in the 90s and that my family could have not known. It seems violent.

Knowing about cancer is violent for some people. Having cancer is even more violent. How could they not know? When we block cancer-knowledge like we do trauma, we feed into a system sticky with environmental trauma, plastics, and toxins, and their violent interaction with our genes and our cells and our lives. And a sister! How could they not know?

This world is so strange. Everything seems like fun-mirrors. Family, genes, stages. At every turn, something weirder happens. It keeps getting stranger.

cancer and my ’90s phone

Many of you know about the phone dramas I’ve had lately. First my iPhone died, and so i got a new iPhone5. Six weeks later and 3 weeks into the cancer diagnosis, my phone slid from my back pocket into the toilet bowl, where I peed on it. I only wondered where it was when my mom Facetimed me and it became to ring— from the toilet bowl! I fished it out, but it was too late.

Luckily, Sam had convinced me to buy the insurance, but the phone still took about 10 days to be replaced. In the interim, I have been fielding phone calls from what feels like hundreds  of medical professionals, and I have been doing this from the cheapest replacement phone I could buy: A FLIP PHONE. It has felt like the late 90s and early 2000s.

And there has also been something strange and almost sensual about the tactile sensations I get from this phone. It’s so hard to send texts because I have to click through all the numbers, and it makes these loud beeps when I hit keys, and has ring tones that could only belong to the first few cell phones I owned when I was 17, 18, 19, 20. Sam can even play whole songs on it– this morning at the doc’s office he made me smile while they fished through my bruises for a suitable vein to draw blood by playing “Jingle Bells” and “Mrs. Robinson” with my sexy little flip phone. Only a really musically talented pareja can do that.

Cancerland is not-time, out-of-time, a foreign time. My little black flip phone fit perfectly out-of-time in this f*cked up world.

In her article Living in prognosis, Lochlain Jain writes:
“for one thing, living in prognosis severs the idea of a timeline, and all the usual ways one orients oneself in time: one’s age, generation, and stage in the assumed lifespan……………Living in prognosis, then, is about living in the folds of various representations of time.”

The phones, side by side, for me are these folds of time. I wish when I had my first set of flip phones, I’d found this lump. Known then about this cancer, for surely when I was still delighted about my little flip phones there were cancer cells lurking in my left breast, sliding around in there, waiting until I discovered them. Most breast cancers are around 2-10 years before you find them.

“Cancer is creepy. After it shows up one realized that it must have been there for a while, growing, dispersing, scattering, sending out feelers and fragments. After the treatments, often one hasn’t any idea if it is still there, slinking about in organs or through the lymph system- those parts of the body you can’t really even visualize. But the apparently definitiveness of the prognosis, which seems at first counterposed to the unpredictability of the disease, can be as mysteriously tricky as the errant cells.” -Lochlainn Jain, Living in Prognosis

I wish I knew why. Was it the scoliosis X-rays? My mom swears there were only 4, and judging by the fact that she has in her possession all of the X-rays I’ve ever had since I was 8, with the exception of an ankle X-ray I had at 25, she’s probably right. And so its tricky to treat- should I have the other breast removed, it, too, tainted by the radiation they used to monitor my curvy, curvy spine?

 “Because cancer is always about time. Its progression is marked by stages the staging is not exactly arbitrary, but neither is it terribly precise….. Cancer spreads over time, but no one knows how or when: it is possible to have metastasis after Stage 1 cancer, or none with Stage III. But no matter one’s stage, virtually everybody wants to have been diagnosed sooner”  -Lochlainn Jain, Living in Prognosis

I cannot stop thinking, about this old phone device- that’s also new to me-  and this newer replacement, and the different times they represent in my life, and my different relationships to them, and the way my entire sense of time has radically shifted since Halloween, when I found out I have cancer. It’s the 90s and the now, it’s a recalculating of now and the future, its slipping between these building blocks that were built out of big, sturdy logs and that were the structure I stood on, I understood, I oriented to. I could see for miles, months, years into the future. In that future, I saw myself as a professor, a lover, a mother, a public intellectual, an artist, a Bikram yogi. It’s as though now, the logs are floating on water. They are slippery, moss-covered, and beneath me there are depths unknown. And in my hands, are these phones, a hot pink iPhone5 and an old-style beeping flip phone.

 

if only i’d eaten mung beans

A few days ago, I went to Chapters, the big giant bookstore here in Vancouver. I proceeded to buy all of the breast cancer books in the store. There were six, not including the novels. I don’t want the novels. Then I went home and ordered several more off Amazon for good measure. Reading makes me feel better. I’ve now read most of the academic articles that show up on googlescholar about “very young women with breast cancer” and so now it’s time to move on to all the books in the bookstore.

When I read these books, I start to wonder. Sometimes I get angry that, even up to a week ago, I was eating french bread and toasting with wine and being really liberal with one of my favorites foods, cheese. I desperately wish I could go back in time, and maybe if I ate better I could avoid this. I wish I could turn back the clock and eat more mung beans. Less diet coke. More turmeric. As if this would have changed things. But I cling to the idea that if only… what could I have done, what should I have done? How could I have not cared more about what I was putting inside my body? Why didn’t I do regular breast exams? How come I didn’t notice it was lumpier? Why didn’t I say something sooner, find it before, recognize that living in this world is risky, and do something about my diet, the air I breathe, everything, a decade ago? What I wouldn’t give to turn the clocks of time back. I’ve probably had this thing growing inside of me for many years- somewhere between 3-10, they say. What if, if only, I wish…

I can’t turn the clocks of time back. I can’t control that. I’ve forever lost the sense of safety that was knowing, before, that I was healthy. I can’t get it back. There’s always going to be a possibility that a single cell has escaped, traveled through my bloodstream, taken up residence elsewhere in my body. The world isn’t safe anymore. My body isn’t keeping me safe. All those ideas about how tomorrow, next week, next month, next year, even the next decade should be, will be, could be– they all shifted in the moment the doctor called me to say, “I’m afraid it’s positive,” the second she answered “Yes” to “So I have cancer?” I wish I could grab the clock arms and swing on them, twist them, pull them until I could move them backwards.

There’s really very little I can control in this adventure. Very, very little. I can’t control when my appointments are, and I can’t move them when they fall smack in the middle of my teaching commitment. I don’t know enough to really talk to the doctors, and I can’t control the fact that I’m here in this cancer-world made for much older people, or at least, made for someone that’s not me. I am tied to the multitude of tests that I need to have to figure out what’s going on. Even though it seems like I should be able to walk into the hospital and say, “SEE ME FAST I HAVE CANCER,” it kind of falls flat when everyone has cancer.

What I can control is what I eat. And I’m terrified of eating something that will make it worse. And so today, armed with my list of breast cancer foods, like milk thistle tea and sprouted mixed beans and baby kale and flax seed oil, I went to Whole Foods. I never go to Whole Foods because its’ so pricey, and it’s so overrun with white people in Lululemon making a selection from a hundred different coconut waters, that, well, the veggie market and mostly local and sometimes organic is good enough for me. But today I didn’t care. I filled up the cart with organic licorice tea (something about estrogen receptors) and bulgur and wheat grass and beets. I felt triumphant when I read about how important vegetable juices are, and loaded up on organic veggies for my juicer. For some reason, the oddest thing I think I bought was mung beans. I just never thought I’d buy mung beans. I don’t even know how to make them, but the books all talk about mung beans. So I got some.

I spent $172.45 and I don’t even care.

Then I came home, and made a salad lunch with black sunflower seeds and spouts. It’s one thing I can control. So, here I am, drinking my green spirulina juice every morning and adding turmeric (which seems to be the spice of the most magical, magical powers) to mung beans and roasted cauliflower. So, out with the non-organic things. Tossed so many jars and bags and boxes this afternoon. I don’t care if its $172.45 every time I go.

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