Every two weeks or so I am publishing an essay from an emerging writer. This week, we are publishing “Knowing Less” by Kayleigh Hughes. Kayleigh is a professional editor and writer from Columbus, Ohio. She has an MFA in creative writing from Virginia Commonwealth University and a BA in English from UT Austin. Her literary work has appeared in Northwest Review and Michigan Quarterly Review, and she has previously worked as a music and film journalist.
Stomas are the inside of the body made outside. An intestine that ends before it should, emerges outside the body like a highway overpass still under construction, going nowhere. She matches the adhesive ring of the bag around the ring of the shiny red organ, so exposed, and she does it quickly, before new shit can spill out. Her intestine has become a hose she can’t control. All she can do is wait for the smell.
Two round red rings on a marshmallow belly. Bulging rings, leaking blood, one almost always leaking blood because the sticky bit of the bag rips off more painfully on that one. Did you know feces is acidic? It burns through the sticky bit, the adhesive that connects belly to bag. The seal breaks, the shit leaks, the room becomes nothing but the stench.
Fact: You can get cancer in your vagina. I know this because my mother got cancer in her vagina.
When people learn she had cancer, for some reason they always assume that she had breast cancer. I suppose because she is a woman. Sexist! Except a vagina is a very traditionally womanly place, too. So is the cervix, and so are the ovaries, and so is the uterus, but what can she say? It was her real, actual vagina, and ultimately it was entirely surgically removed from her body. God how I wish I knew where that vagina was now – where does such a precious organ go after it turns on its host and must be cut away? But I’m getting ahead of myself.
Another fact: If it is a part of the body, it can have cancer. Hold on, that’s not quite right. Let me rephrase. If it’s living tissue on or in the body, it can have cancer.
We are always getting facts about cancer slightly wrong, my mother and I, perhaps because the big seeping presence of her own diagnosis took up so much space that there wasn’t enough room for the facts. That, and she was doped out of her skull and all the way to Saturn for several years on the pain meds. Those are a few of the easy explanations, at least.
My mother’s body was always physically compelling to me. A star basketball player, she began her lifelong intimacy with hospitals after being struck by a car at 16 and earning a cast up to her hip. The aftermath plagued her for life, exacerbated by her choice to return to the court in college. By the time she hit 40, she’d had a total knee replacement and dozens of minor surgeries. In her 30s, she nearly bled to death on an operating room table when a surgeon nicked an artery during a minor ovarian cyst removal.
I used to recite her stats with some sort of pride: the number of knee surgeries she’d had, surgeries total, hospital visits, pints of blood lost. As a kid, you need fun facts to make friends. But after the emergence of the vaginal adenocarcinoma in 2009, it became impossible to keep track of the figures and to me she became more of a static, constantly sick person, rather than a person who has just had many discrete medical experiences. I sometimes imagine my mother saving up her hospital bracelets like I save concert tickets as a way to plot her life on a timeline and prove she was there for it when her own memories failed. I think of this timeline of hospital visits starting as several dots in a row, and, eventually, those dots sit so close together that they are merely a line. A constant.
As the American Cancer Society will tell you on their website, “Radiation therapy is the treatment most often used for vaginal cancer.” There are two main kinds of radiation treatments available to the vaginal cancer patient: external beam radiation therapy and intracavity brachytherapy. As implied by the name, external beam radiation therapy is delivered externally, in a style not so different from an extended X-ray. During the latter treatment, well, allow me to quote again from the American Cancer Society: “radioactive material is inside a cylinder-shaped container that's put in the vagina.” As my mother put it in a recent phone call: “it was like a giant dildo.” You get vagina cancer, you get a radiated dildo. And even that description elides the grotesquerie of it, really.
As a layperson, it’s hard to go wrong with the American Cancer Society, but I don’t want just the basic explanations. I want the stuff doctors need to know. The stuff that can get me closer to a real, true understanding, so that I might get closer to who she truly is and maybe make fewer mistakes in my attempts to communicate about her and, especially, with her.
I have discovered that many medical schools’ websites include detailed information about gynecological oncology deep in their sitemaps, if only you google a precise-enough string of words. OncoLink, the website associated with UPenn’s Abramson Cancer Center, is highly reliable and thorough; it lauds itself as being the first cancer information website on the Internet, started in 1994.
OncoLink distinguishes itself from the many other online resources by providing photographs of the brachytherapy radiation tools, along with X-ray scans of the tool and radioactive material properly inserted into the vagina. The website for the state of Alaska’s department of health and social services, meanwhile, contains a somewhat high-level but terrifically helpful explanation of what radiation is as both a medical procedure and, I suppose, a scientific phenomenon. Not just the what but the why and how. And the page that explains brachytherapy from the University of Florida College of Medicine’s Radiation Oncology unit is dull and accurate and detailed and – humorously, if you like dark humor – interspersed with photographs of the unit’s doctors: all puffy, unsmiling older men wearing their lab coats and staring you down a bit patronizingly, though perhaps they mean to seem wise and knowledgeable. My mother received her treatment in Ohio and Texas, and there is no special reason for looking to the medical wisdom of Florida and Alaska and Pennsylvania – these were merely the websites that gave me the most information, the clearest and most useable. Many resources explain anal, bladder, cervical, colon, ovarian, rectal, and uterine cancer (all areas of her body that were eventually impacted by her cancer) but not vaginal. I’ll take what I can get, info-wise, but I want the most.
In hunting down all the facts of my mother’s cancer, I think I’m trying to get inside of her, not just understand her but become a version of her – except one with annotations or pop-up video blurbs contextualizing, clarifying, making sense out of the nonsense. Filling in what she calls the long periods of blankness where she remembers nothing. To be clear, I’m not at all sure this is a “good” or kind idea, populating those blank spaces with the data her brain worked hard to protect itself from. Much of what she doesn’t know is the result of PTSD, blackouts brought on by so much pain and suffering that the body decided those feelings must be rationed to avoid extreme psychological collapse. And the years of Dilaudid and fentanyl drips didn’t help. But what most ties my own brain up in knots is that a lot of what she doesn’t know about her cancer she never did know.
It has taken me a decade to understand why my mother went through this entire process— two bouts of cancer, several rounds of radiation and chemo, and several surgeries, including a whopper of a finale called a full pelvic exenteration—requesting to be told as little as possible. But now I look at these pictures on OncoLink of pointed metal rods shot up through reproductive organs carrying a container of radioactive material that lingers at the very top of the vaginal canal at the entrance to the cervix, emitting fatal radiation that, the American Cancer Society explains, will cause nausea, diarrhea, exhaustion, site-specific burns, bleeding, peeling and blistering. And I think about how that was just one type of the multiple radiation, chemo, and surgical treatments she underwent, the tip of the iceberg of six years of impossible lose-lose choices. And I see how knowing less can be life-saving. I can imagine any number of terrified, pain-averse people, myself included, facing these circumstances, these tools, and declaring “I’d rather die.”
My mother once told me while we were lying on pool floaties in the hills of Texas wine country that she never would’ve had kids if someone had told her what the whole endeavor entailed. She said this like, duh, no one would. She continued by waxing joyfully about how she was born to be a mother, that it was her favorite thing in the world. She wants me to have children desperately.
For her, it seems that difficult, irreversible choices must be made without knowing too much about the downsides so that you don’t end up never making the choice at all. To that I would say to her: but you can’t unbake a cake, so to speak. And if this were a real conversation, she might say back to me: Good thing I’ve never baked a cake in my life. And anyway, we’re not talking about cakes, we’re talking about children and cancer.
Among the many things my mother did not want to know about her cancer were the exact name for it, the stage it was at, and the survival rates. I believe this holds true for both the first occurrence and the second, which I often refer to very medically as “when it came back.” I think she knew that treatment the second time around didn’t work. I do not think she allowed the phrase pelvic exenteration to remain in her consciousness for even the smallest amount of time, but I do think she knew that this surgery was her final shot at survival, at least if memory serves (a hilarious phrase when you think about it; if anyone is doing the serving it’s me, constantly hunting down and plating up offerings to Memory, hoping in return it will bestow upon me something small and unblemished and true that I can use and trust).
In early February 2013, I remember her telling me she had a choice. Her gynecological oncologist could begin the surgical procedure, determine once “inside” whether it was possible to remove all traces of her cancer or not, and depending on that outcome would either stitch her back up and tell her to enjoy life until it ended (soon) or continue on for another thirteen hours of surgery. She did have the option to turn down the surgery, which would remove her ability to urinate and defecate in traditional ways and would involve the removal and total reconstruction of her vagina and vulva – with leg skin. If she didn’t choose surgery, the outcome was, once again, enjoy her last wisps of life.
There is no suspense about the outcome in most ways: the surgery happened, the cancer went bye-bye forever, and she stayed alive. But at the completion of surgery, none of us in my family knew just how much we didn’t know.
In one of our phone conversations this year, my mom revealed to me that she didn’t realize her colostomy and urostomy bags were going to be permanent. She thought maybe they’d get removed and she’d be able to use the bathroom like a normal person again one day. My dad has told her the details were explained clearly before she was given her choice, but for her, it’s like the conversation never happened. She tells me she’s not quite sure she could have handled the knowledge of that sort of permanent disability beforehand.
I was always certain that I could handle all the information, but my behavior often suggested otherwise. Take, for example, her birthday on June 29th of the year of her surgery. She was in the hospital. We didn’t know she would be there on and off for another year. I stood in the doorway of her room, a stereotypical hospital room right down to the dry-erase board on the wall to my left where a little squad of smiley faces in various states of misery or joy was drawn.
My mother’s bed was to my right, and she was nestled in it, her body too small and gray for who she is. She looked like she used to when I was a kid and she had a migraine day, but it was like she’d had one for months. She was all shot through with tubes and hooked up with cords and needles and pinchy devices and there were many beeping sounds.
And I, an actual adult, was standing there next to my father and my sister and I was holding a bright fucking pink box of giant cupcakes in my mom’s favorite flavor, carrot cake, which she could not eat. She couldn’t eat carrot cake ever again. What did I, foolish healthy daughter, really understand?
I remember finding an iPhone app in the hospital that allowed her to blow out virtual candles, since of course candles were not permitted. I held my phone up to her face, which was thin like crepe paper, like it could disintegrate, and she blew on it, but she did not want to. It was clear she did not want to, and I made her.
It took me nine years to determine what stage of cancer my mother likely reached. Some of that time was spent researching, but most of it was spent wanting to know but not wanting to ask. Even five years after the surgery, everyone in my family felt as if we were still a cancer family. My mother was still regularly rushed to the hospital to treat infections in her wounds, then later, even after they’d finally healed, to manage the physical side effects of her required new no-fiber diet. Here’s how it goes: An item gets stuck in what’s left of her digestive system, the colostomy bag hangs empty, and for days she sobs in pain and also starving until – success! – with the help of the proper treatments and techniques, her stoma explodes with a mess that coats her body and sheets. It’s a relief, medically, and also, to her, a miserable display of stolen dignity.
These hospital visits have grown rarer, as have some of the other consequences of a colostomy bag that give my mother constant anxiety and shame: the uncontrollable release of gas, the bulge of the bag, and, most agonizing for her, the leaking or exploding of a bag in public. She now always carries a second pair of clothing everywhere she goes. She knows double-bagging techniques for disposing of materials. She is an expert in scented room sprays.
The aftereffects of radiation and chemo linger as well, most prominently in a pervasive nausea that is most overwhelming in the mornings. She cannot start her day until my father has brought her a Diet Coke and a Special K brown sugar cinnamon pastry crisp, because cinnamon has always calmed her stomach since she was little.
Often, even when we are in different cities, when we haven’t spoken for weeks, I will feel a strange sister-nausea to hers. I am not ill, just wracked with the unexplainable nausea of loving an ill mother. Less inexplicable is that I have inherited her migraines, and their causes, so that when the weather is shifting I know we will both be trapped in bed, harassed by light and sound. We will be in the same position, and yet also not at all.
We sometimes call each other the next day, ask how the other is.
“Oh, better now. Yesterday was terrible.”
“Did you puke?”
“Not this time.”
“I puked.”
I recently broached a subject I’d been contemplating for nearly a decade. I think eight years ago, even four years ago, my mother might have handled the conversation differently, but now she is near-gleeful.
“What about,” I hesitate, then give up on the modesty we both have felt pointlessly controlled by for years, speaking plainly because facts are facts and these bodies are ours, “Your clitoris, what happened to it?”
I can hear her smile over the phone. “All is good. My surgeon is the best. Didn’t I tell you that years ago?”
Apparently, my father wrote him a thank you letter for saving my mother’s orgasm. I tell my mom I would remember if she had told me this. Then she kept talking, and she said things that made me love her more than I thought possible. She said she’s not sure she could have kept going without sexual pleasure. She said orgasms were a part of her identity, and she said that this embarrassed her. And I didn’t recoil at the thought of my parents as sexual beings, I just felt kinship and warmth and a deep and powerful feminine lineage, and I told her that she wasn’t embarrassing, she was amazing.
Is it strange, I wonder, this sincere devotion I have to doing right by my mother’s vagina, to telling its story in a way that does this piece of her justice? Is it reductive, or worse, perverted somehow? Even in an increasingly enlightened age, perhaps a woman should simply not look to the intimate details of her mother’s life for reflections of her own sexual identity, for all the ways she is a reverberation and also an expansion of the sex that has been had by the women in her family who came before her. But the thing is, when I approach these thoughts, I feel a throbbing heart-deep comfort, and I am the least lonely I’ve ever been.
I want every conversation with my mom to feel like the one we had about her surviving clitoris, but that’s unrealistic. When I investigate her most painful moments, I engage in a trade-off of our hurts. I have missed so much in us not being able to speak openly, always wondering what I still don’t know. This ever-questing state is an isolating one, and the more my mother tells me about herself, the closer I feel to her. But I know that I’m also pulling her back to the worst moments of her life and I must remind myself, still, after everything, that my needs aren’t the only ones at play.
Until recently, I believed everyone in my family had lost track of my mother’s exact medical stats. But last month, my dad wrote a Facebook post and it was a list of exactly what I’d always wanted and never found. Every figure, every date, every surgery of my mom’s entire life – all 70, it turns out. He even wrote down the number of days she spent visiting the hyperbaric wound treatment center to heal her open wounds (120), a time I documented on Instagram but with no quantifiable information. I learn information I didn’t know I didn’t know. That one of her internal bowel transplants died, grew gangrenous, and was the reason she was clinically code blue for the second time in her life. Our experiences overlap, my father’s and mine. We share memories as well as a boundless love for my mother. I am not just my mother’s daughter, I am reminded. I am also my father’s. I have them both. This, suddenly, is the least lonely I have ever been.
Having a mother with a colostomy, I appreciated reading this so much. It reminds me of all the ways she has adapted and reframed her life expectations and persisted and survived, and how grateful I am for that courage. Thank you.
What a fantastic piece. I’ve been trying to write about my mother’s cancer for years. This piece made me feel like I need to keep doing that work, though some days I can hardly stand it. Thank you. ❤️