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.

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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