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.