CW: Cancer, fertility, blood, surgery
I.
My cervix and I were closer friends than many. I relied on her to fight my monthly stone man, to help manage my Pre-Menstrual Dysphoric Disorder. I knew what she felt like at different points of my cycle. I knew when she was lower and open versus high and closed, I knew what her varying types of mucus meant. I relied on those cues to know when it was time for me to start my cycles of monthly care, when it was time to take my meds, and when it was time to expect relief with the arrival of my monthly bleeding. I often marveled at how in sync with my body I had become. How I would notice the smallest changes. How learning to read myself was empowering and liberating. That’s gone now, because my cervix is largely gone. Some of these signs and language of my body may come back. They may not. I’ve mourned and mourn their loss. You took that from me.
II.
It started with an abnormal pap smear. After decades of regularly scheduled exams and normal results I suddenly was thrust into medical fear and uncertainty. They also tested me for HPV. It came back positive for a high risk strain. I knew it was from you, because it couldn’t have been anyone else.
I called cis female friends. Many of them have had abnormal paps. They told me what to expect, that it would be fine. That it happens all the time. But I knew in the back of my mind and from a quick google that my cells were different–they weren’t squamous cells, they were glandular, and they carried more serious risk. But it was only four months after you, and I figured that wasn’t enough time for anything to develop into something serious.
The colposcopy and biopsy were two hours before I had to moderate a panel at Harvard, a panel on centering Indigenous women’s voices. The procedure took place in the normal exam room, my feet in stirrups, my doctor and her assistant making awkward small talk. We talked about our favorite beaches. It seemed normal and mundane. After an examination, the doctor found two sites that looked “only slightly abnormal,” so decided to take “punch” biopsies with a tool that takes “just barely 2 millimeters of tissue.” With each biopsy she paused, told me to take a deep breath, and removed a piece of my cervix. No pain medication, nothing to ease the raw pain. Just a deep breath.
I can’t imagine a scenario where a cis man would be asked to endure this type of procedure with just an intake of air for his pain.
After my doctor had completed the biopsies I watched her place the used instruments in a plastic bag. I wasn’t supposed to see, she turned her body away from me. But I saw. I saw the clear plastic streaked with my bright blood. I saw what “just two millimeters” produced. I cried at the injustice and the indignity, silent tears rolling down the sides of my face as I stared at the speckled drop ceiling, head on the crinkling exam table paper.
Two hours later I sat on the stage, looking a mess, having done my makeup in the car as I was driving frantically through traffic, dictating potential questions into my phone, bleeding and in pain. “Take some ibuprofen if you need it,” my doctor had told me, “some bleeding and cramping is normal.” But as I sat on the stage I kept thinking, “Nothing about this is normal.”
Someone there mentioned you. I felt my stomach clench and I wished I could tell him. Tell him that an hour before I had made a blood sacrifice to the medical gods of settler patriarchy because of you. But I didn’t. I centered our voices as Indigenous women that night, but I still couldn’t tell him.
III.
The speculum was invented by a man experimenting on enslaved women without consent and without anesthesia. The tool that is so common to every experience in a gynecologist’s office was a tool of a monster, designed only to push tissue out of the way and hold it there so he could get the best view. It was not designed for any patient’s comfort. Not designed to ease the trauma of having a stranger stare inside of you.
The local sex shop down the street from my house has speculums in the window. They’re jewel toned and meant to look pretty, displayed next to vibrators and cheeky underpants, but the last time I walked by I felt intensely sick seeing them lay there. I think they’ll always make me feel sick now.
IV.
In Wisconsin, after a nightmare travel experience, exhausted, I laid on a hotel room bed, mentally running through my keynote for that evening. My email pinged with results of the biopsies. I clicked, expecting that if they had let me be notified by email it must be nothing. but it wasn’t nothing. Both biopsy sites showed Adenocarcinoma in situ–Stage 0 cervical cancer, very early stage cancer of glands of the cervix. I couldn’t breathe, I couldn’t cry, I didn’t know what to do.
I called my doctor, and left a message. While waiting for her to call me back, I googled. The internet is a terrifying place. Best case scenario, a cone biopsy surgery to remove a section of my cervix. Worst case, a hysterectomy. No matter what, surgery. Potential or definite loss of fertility. Potential second trimester miscarriages. Potential for preterm birth. Potential invasive cancer. Potential of a changed future forever.
I talked to my doctor. I cried. I called my partner and my mom. I cried. I took a shower, wiped my tears, and went to dinner with the Native students on campus. I laughed hard and deeply with them, I found healing in their stories and laughter. I did my keynote, I made my stupid jokes, answered questions, and tried to remain present. But running through my mind was a single word over and over: cancer cancer cancer cancer cancer.
I went straight to the doctor from the plane the next morning. I sat on the exam table, my long legs dangling, wearing the snow boots that had been necessary four hours ago in Wisconsin’s freak April snowstorm. I focused on how out of place they looked, back here in Rhode Island where the weather was approaching sixty degrees. I looked down at their faux fur and strong laces as my doctor drew a picture of my cervix on her clipboard and circled the large section she would be taking in the surgery, the surgery that needed to be scheduled as soon as possible.
As she left the nurse who had assisted on my colposcopy came in and gave me a hug. “You’ve been on my mind all day,” she said. “I’m so sorry. This was your first abnormal pap wasn’t it? What a shame.”
V.
I have a pseudo-tarot deck called “The Answer Deck.” I use it sometimes to get clarity, when I’m feeling lost. I asked it what to expect of the surgery, carefully turning the cards over in my hands as I meditated on the question. I flipped over the outcome card: “hidden enemy.” I pushed the cards away in disgust and fear, interrupting the careful rows.
VI.
I wore my ‘Feminist’ sweatshirt to the hospital for my surgery a week and a half later. It felt stupid once I got there, but that morning it had made sense. I tried so hard to be the stereotype of the “brave” and “strong” patient. I joked with everyone. My worried Mom sat in the chair opposite my bed, and I tried to put her at ease. They needed four tries and two nurses to get my IV in, because I was so dehydrated from fasting. It hurt, a lot, but I pretended to be fine. I even took a selfie in my purple gown (my favorite color!) and silly hat. I read my kindle. I thanked the doctors. Inside I was a mess.
I woke up in recovery feeling ok. The nice woman nurse who had been gently easing me awake told me in my groggy state that she would be cycling off and a new male nurse would be taking care of me. He gruffly moved me from my bed to a recliner, handed me water, and left. He came back with my mom, told me it was time to get dressed, and left again. I stood up, and began to bleed on the floor. I looked down at the small puddle, dark red and glistening, and was embarrassed. I looked around. He hadn’t given me a pad. I asked my mom for the one in my bag. I placed my paper gown on the floor over the blood. I put back on my Feminist sweatshirt.
VII.
Physical recovery meant alternating anger and love. The support and love I felt from my family and friends were immeasurable. I had delivered meals, more meals than I needed. I had deliveries of growlers of hand-harvested chaga tea. I had friends praying, lighting sage, holding sweats, and putting down tobacco for me. I had a mom who flew across the country and took care of everything. I had a partner who called multiple times a day to make sure I was ok. I had a department chair and colleagues who picked up the slack for the time I was out and offered to do more if necessary.
But I was angry. So, so angry. Angry at you for hurting my heart with your actions when you had given me so much hope, angry at you for hurting my body with your virus, angry at patriarchy, and angry at myself. Angry I didn’t feel well, angry I couldn’t exercise, angry at the blood, angry at the pain, angry at the exhaustion, angry that I couldn’t relax because I still didn’t have the results. Angry at the deep shame I felt. Angry I had to miss my sister’s bachelorette party, angry I had to miss AERA and meeting with my potential book publisher because I was recovering. Angry because I couldn’t write, and angry because you’ll never face any career consequences for this. You’ll still get tenure. People will still publish your books. You’ll be fine. I’m still not fine.
VIII.
My great-grandmother gave birth to my grandmother alone in her farmhouse. She cut the cord, cleaned up, and sat nursing my grandmother when her family arrived. That farmhouse where my grandmother took her first tiny breaths now sits at the bottom of a lake, taken by colonization and a hydro-electric dam.
There is research that we can carry the historical trauma of our ancestors in our DNA, and there has been recent attention on the terrifying statistics surrounding Black women and maternal death and complications in childbirth. There are no statistics collected for Native women, but we know they are similar. Stress from living in a marked and colonized body has real effects.
Stressed and depressed women can’t easily clear HPV. I have been, and am, both.
My grandma and all of my aunties on the Native side have had hysterectomies. Early hysterectomies, in their 40s. A medical rite of passage–the removal of a womb that carried babies and ancestral memories into this world. My mother had uterine surgery and had her ovaries removed. These women in my family have been separated from our culture and carry little culturally of who they are, yet still carry the trauma of being Native women.
We as Native women have always been the target of settler colonialism. The desire to control Native reproduction and the legacies of forced sterilization campaigns continue. We carry that trauma. Perhaps we carry it in our wombs.
IX.
A pre-colonization world wouldn’t have let this happen. A matriarchy wouldn’t have let a virus that is so destructive to women go unchecked because it causes no symptoms or harm in men. I wouldn’t have been made to feel so much deep shame that I didn’t protect myself better. I would have been protected.
There wouldn’t have been a movement to keep young girls from getting a life saving vaccine because it may cause them to be “promiscuous.” But there was. My doctor in college would have followed up to make sure I finished the series of shots. But she didn’t. You would have been encouraged to get the vaccine as a man. But you weren’t. Resources and funding would have been poured into curing this virus. But they’re not. Because of patriarchy.
There’s not even a test for you as a cis man to know if you carry this within your body. A cancer causing poison. And your virus is special, because somehow it mixed with the stress and historical trauma of my body to move from virus to cancer in four months flat. But you can continue to spread it unchecked to other women. And it will be seen as their fault for not protecting themselves, not yours.
X.
In situ means “in it’s original place.” Medically it means that the cancer hasn’t broken through the surface membrane, that it’s not considered invasive. Yet. but one cell through that membrane, and it moves to stage 1.
To be indigenous is to be not from a place, but of a place. But I will never be in situ. I’ve been removed and disconnected. Perhaps my cancer was more indigenous than me.
XI.
I held my breath for two solid weeks after the surgery. I didn’t have a single full night of sleep. I read every medical journal article I could get my hands on that discussed adenocarcinoma, in situ and not. I calculated statistical percentages, read about the rare cases like mine that went from HPV infection to cancerous cells in months rather than decades, about skip lesions gone unseen and unremoved, the deaths, the instances of reoccurrence, the metastasizing and spreading. I read message boards and support sites. I thought about worst case scenarios. I wondered if a conservative approach to preserve my fertility was smart. I didn’t tell anyone what I was reading and learning. I didn’t want to scare my partner or my family. So I held it all in with my breath.
XII.
Another hotel room, two weeks later. In a single week my world had clicked into place. My partner and I decided to move in together. I bought my first condo. I won a huge national fellowship. I was deeply loved and in love in a way I never thought possible, secure, affirmed in my work, and happy. So happy that I was convinced my surgery results were going to be the worst imaginable. That there was no way the universe would allow me all of that happiness. I didn’t deserve such full and complete happiness.
The doctor called. I took in a sharp breath like during the biopsy, to hold the impending pain. But I was clear. They got it all. My margins were negative. There was nothing nefarious hiding beyond what they had seen. There was no hidden enemy.
I am lucky. I have good insurance, I have a wonderful team of doctors, and these cells that are often very hard to catch and like to jump and hide in healthy tissue decided to hang out on the surface where my doctor could see them and remove them. I’ll have to have a pap smear and colposcopy every six months for the next 4 years. For two weeks a year, I will hold my breath and hope it hasn’t come back. Another surgery would mean I have very little cervix left. It would mean probable infertility. It would mean that patriarchy brought by settler colonialism took my future children. But I won’t think that way.
XIII.
I have no easy end to my story, no beautiful wrap up or message of hope. I’m still deciphering the messages and lessons this journey has given me and still realizing what it has taken away. I don’t know what I’ll do when I see you in the community spaces I know we’ll both occupy. I haven’t even really said the words “I had cancer.” I don’t know how to process that I got away relatively unscathed, when there are so many women who haven’t. I don’t know when I’ll be able to let go of the shame of feeling like I should have done more to protect myself and that all of this was my fault, that I should have known better.
But I know that I’ll keep fighting. Because that is all I know how to do.
That fighting spirit, like trauma, I carry. I will carry it in my womb, nurture it and protect it, and help it grow, to gift to the next generation. Together, they and I will carry it forward.
Comments
I’m currently waiting to find out if I have this. I have to wait until January. I’ve had abnormal cells for two years now, three colposcopies in that time and the weight on my shoulders is becoming unbearable. I was given HPV by my husband and I just don’t know how to cope with that knowledge. When I think about my cervix I feel dread, every twinge in my pelvic area makes me want to bawl my eyes out. The idea that I just have to wait around to see if we end up with cancer is obscene to me – just cut it out.
I love you.
Sending you hugs. I’m continually inspired by your strength and resilience. Love you.
Your committment to live and think and reflect in this blog is awesome and inspiring. How one can and does carry in ones body individual and collective trauma, especialy in regards to histories untold or unheard, is a profound truth.
Thank you for sharing your story.
Sending so much love and hugs and all the prayers in the world. You have been such a huge inspiration to me and I am so sorry that you are going through this. I’m glad they got it all and I pray that it doesn’t come back. Even though you don’t know me, I’m here for you, always!
Neyiwa, thank you, for your story. Peace and love to you.
Kak’getalatikeyi noki kak’getalatep’wi.
(Take care of yourself and take care of each other.)
Thank you for sharing
Your strength and vulnerability are beautiful. I’m sending you healing thoughts and tons of love! ❤️
This essay is powerful. And highly relatable. I have no more words. I know the pain you describe intimately.
It is stunning at first when one realizes that the universe has not made a special exception for your path. It’s rough to go through things like you recently have. I’ve done both. In college many years ago, the first fellow I had sex with gave me both genital warts and gonorrhea. I still remember the elder volunteer physician at the student health clinic roughly chiding me, “Didn’t you realize you have these warts!” I was then given a mega dose of penicillin which caused me a night of severe pain. When I reported that to the same old fellow, he said my tubes might be scarred and I might not be able to have children. So I lived with that sad thought for years, that is, until I became pregnant and gave birth to a beautiful boy.
Decades later I was diagnosed with a rare and potentially fatal blood disease. I felt as if the finger of dark fate had pointed at me, saying “It’s your turn.” But again, six years of taking very strong drugs with many side effects, and I reached remission. I’m now getting checked every six months.
So gather your wits and stay as strong as you can. See that gratitude is your shining light. Your story is being written day by day. So go on now and live that story.
So much love and gratitude to you, Adrienne. For your presence in the world, in this life, as a writer and educator, as an activist, as someone I have the honour to read and know. Thank you for writing about this, for demystifying the experience for others who will face it, for touching those of us who have had similar scares, or who are having them now. Holding you in prayer. Honour to you.
I am so very sorry for the pain and trauma you are experiencing right now. But to be clear, cancer is not sexually transmitted and I think that clarification is extremely important. Further, there is no approved screening available to men for HPV. These things are important for your readers to be aware of for their own health and well-being.
Thanks for your comment, I actually address both issues in the essay.
“I calculated statistical percentages, read about the rare cases like mine that went from HPV infection to cancerous cells in months rather than decades…”
“There’s not even a test for you as a cis man to know if you carry this within your body”
Wishing you the best of health always. You are a role model Adrienne! Your voice inspires people all across the world! You are a beacon of hope!
To the world’s indigenous peoples: Love, respect and admiration.
Rasheed
Amman, Jordan
You take my breath away. In fact I hardly inhaled while I read your post. Wishing you healing and with a deep bow of gratitude.
The notion that men can’t be tested for HPV is a half truth, there is a test for men but it isn’t commonly done. PCR, polymerase chain reaction, can detect HPV DNA. It’s used by sperm banks to test samples for dangerous HPV strains, but can be run using DNA from urethal and penile swabs as well. PCR is also regularly used in medical studies as an HPV diagnostic tool (search Pubmed and there are hundreds of studies using PCR for HPV detection in men). Here’s a good, free article about how effective it is, from 88.9-100% https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1828977/
I work in biomedicine and PCR is not a hard or expensive test to run, I really think it’s due to sexism that it’s not more widely used and that the myth of there being no HPV test for men is so common.
Your words are powerful. You’re powerful.
Hugs. I’m dealing with bladder cancer, also Stage 0. I understand some of what you’re going through. Sending hopes and prayers your way.
I wondered what decolonial gynecology would look like? I refuse as a Two-Spirit in a female body to go to the gyno. I went once and it is like assault to me. I believe we as Native folks can decolonize gynecology.
The speculum looks like the pear of anguish torture device – http://www.medievality.com/pear-of-anguish.html. I knew there was more to the story on the speculum.
Swift healing. Thank you for this and for your blog in general! I found you because I was trying to articulate to a white male friend why the term ‘tribe’ to describe casually affiliated groups of (often white) people was problematic.
I had a pretty harrowing experience with reproductive cancer at 19. I’m white, and so I didn’t experience the visceral colonial legacy around family. I can only imagine what that added layer of inter-generational pain was to the experience of structural misogyny & the general scariness of reproductive cancer. I love the reader response idea of imagining a decolonization of gynecology.
I had the same condition when I was 19, and remember feeling bewildered, scared and isolated in all aspects of my treatment. I was young and unsure sure what the right questions were. I didn’t know to ask about pain, blood, future reproductive risks… and nobody thought to offer any information. My cone procedure was abruptly scheduled and performed by a strange male Dr. with a demeanor so cold I assumed he was repelled by me personally.
I remember being met with a shrug and a vague explanation about a continuum when I asked “is it cancer?” It was, and it never returned. But I had to figure it out myself.
This was over twenty years ago. I’m not surprised— but I’m outraged that this still goes on. Having a female physician apparently doesn’t alter it much, because the structural imperative to control women’s bodies is so powerful. How on earth is it ok that anything in women’s health should ever feel like violence to a female body? How dare this unchallenged norm for ‘care’ compound a legacy of trauma on a female body of color! How dare there not be routine testing of men and a cultural expectation that they WANT to know and care for themselves and their lovers…
This took my breath away.
I don’t and haven’t had this, but I do have a chronic pelvic pain condition called Interstitial Cystitis (IC), and of course, it’s underfunded and underresearched. There’s no definitive test to find it; it, so you usually have to endure months or years of intense pain, super invasive tests, hurtful comments, patriarchy over and over etc until you get diagnosed. There’s been some strides in that field, but it’s still not great. A few months ago, I saw it listed in a Buzzfeed article (!!!) as one of the top 10 most painful conditions in the world (!!!). Not long after, I talked to a Dr. about a specialist referral and he said “you might wait a while, IC isn’t a priority to urologists nowadays, because it won’t kill you.” He’s lucky I’m already well-managed, because otherwise, I’d want to throttle him.
The year before I was diagnosed was 6 years ago now, but the trauma of invasive exams, of having “strangers stare inside you”, as you so astutely put it, of insensitive comments etc has stuck with me, as your trauma haunts you in this piece.
I’m white (as far as I know), but still I think a lot about your points about intergenerational trauma and how it combines with viruses or other pathogens to accelerate medical crises. My dad’s side of the family went through concentration camps during WWII and perhaps that’s reactivated when my medical trauma is, as well.
I thought I had sortof figured out which parts of my diagnosis story were “legitimately traumatic”, and which were just part of the process, and I think I’d subconsciously talked myself down from calling all of those invasive exams, even routine ones, ‘traumatic’, and that’s silly, because HELL YES, they are! They are when they’re designed to let a man get a good look and not the patient feel comfortable or safe. They are when they hurt, or even when they don’t, but happen over and over and over. I’ve lost count of how many abrupt, invasive exams I’ve had, but it got to the point that when I had pelvic floor physio with a fabulous physiotherapist that the tiniest discomfort had me sobbing.
It’s been really hard to feel ‘seen’ about this, because medical trauma isn’t really considered a ‘legit’ kindof trauma these days. Very few of my friends or anyone I know mention it or know about it. They talk about other kinds of trauma, and that’s fine, but when I mention this kind of trauma even to professionals, they scoff or seem aghast. How can an institution designed to heal, hurt you? But it does, for thousands upon thousands of patients.
Words cannot express how much this post means to me, and to so many of us, I’m sure.
Thank you.
Thank you.
Thank you.
Thank you so much for sharing this. I wanted to cry because this is how I have felt as well. I had my first abnormal PAP in 2018 when they found abnormal cells. They did the first colposcopy, and said that they were “abnormal” but not cancerous. My doctor said cervical is the slowest growing cancer and to wait a year a get re-tested. Another year passes and they do another pap which of course comes up abnormal, and suggest another colposcopy, which also produces “abnormal cells”. Well my original doctor retires before the second colposcopy, so when the new doctor does the colposcopy she does not test for HPV, and I didn’t think to tell her she needed to do since the old doctor had already outlined that plan for me.
After the cells coming back abnormal again she tells me to wait another year, and do another pap and possible colposcopy and they will test it for HPV. A t this point if they are still abnormal I will be looking at doing a LEEP procedure where they will cut off and cauterize the abnormal cells.
Now here we are another year later and I get a letter in the mail “it’s time for your yearly exam”. At this point I feel lost and confused over what my next step should be. After two painful colposcopies I don’t want to do a third to be told to “come back again next year”, so that I can also pay another $300 plus for labs and everything else.
After reading this I feel much less scared even if it does turn out to cancer. The feeling of “what will I do next? Will I die? What does this mean?” seems to be a lot less daunting after seeing how you went through in your own experience and how you came out of the other side.
Thank you for sharing something I didn’t know I needed at this moment. I felt every word within my own heart.