Hold all things lightly

Five more years in a body cancer almost stole from me

On Halloween 2019, I was diagnosed with cancer. Stage 3a endometrial adenocarcinoma. I sat in the oncologist's office, both my girlfriend Kai and I in cat-ear headbands. Festive. Not believing this appointment could result in news so life-altering that the event would be forever remembered. Naive. Naive, in cat ears, with cancer.

The diagnosis followed a surgery, initially meant to be laparoscopic. At my insistence, with a hope to save my ovaries and not enter menopause at 33, the oncology surgeon attempted to biopsy the tumour. The tumour capsule ruptured, and the surgery converted to an emergency laparotomy. Or, in my body's experience, my abdomen was cut open from navel to pubis, and my doctor put both her hands inside me to stop the bleeding. She almost couldn't. But she did, and with the help of other people's blood, I survived. The cancerous ovary was removed, and we knew that surgery could not be the last.

I was given enough time to recover (physically – mentally, I had not grappled with what had almost happened), and in January, I had another surgery, this time a planned laparotomy. My other ovary, uterus, ovarian tubes, omentum, lymph nodes, and cervix were removed (miss you all). My recovery was infinitely better, thanks in part to an epidural (that, unfortunately, has caused me significant ongoing back problems).

Bringing us to March 2020.

As a reformed agoraphobic turned panicked overachiever, cancer stopped me in my tracks. Tracks that looked an awful lot like someone running from something. I let go of three out of four jobs, and then eventually the fourth had to go as well. All my community building and activism work was put on hold. But then, so was the world. I started chemo and radiation just as lock-downs began. Day after day for five weeks, I went into the hospital to get treatment, answering the questions about exposure, about travel. Doctors sitting in the far corner of the exam rooms, handing me diagrams of my own body with gloved hands. No visitors allowed, though my girlfriend was permitted to help me at times. For the most part, I spent those five weeks alone in the cancer recovery lodge attached to the hospital, living parallel with other patients that I passed in hallways but wasn't allowed to share meals with.

When I finished my treatment and rang the gong, there was no one in the waiting room to cheer for me. But the hospital staff did. With that muted fanfare, I returned home to see my face on the front page of the local paper, discussing the hidden costs of cancer in a country with universal healthcare.

A crowd-funding effort got me through. I was on the other side of the community I'd worked so hard to create – and which, I thought, had depended on my ability to show up, to help, to spearhead.

My therapist asked me if I thought my relationships were transactional because I spoke about fearing they would dwindle and disappear now that I have so much less to offer. Yes, I realized, with a jolt of disgust. I had thought that if I can't give, no one would want or need me and I'd be alone. Cancer forced me to have one of the most startling realizations of my adult life – that people love me even when I have nothing to offer. (Another startling realization would come later: that even when I'm disabled, I still have so much to offer.)

I learned radical acceptance. Learned how far down the root of 'radical' really goes. I was put in a position to practise everything I preached, and from that, I had to winnow down my belief system into what actually proved true and useful.

This is when I learned nuance like, I can say my cancer happened for a reason, but if you do, I might get grumpy.

I learned that what I thought was naivete was just hope.

Like many cancer patients forced to confront mortality, I realized that I am not all that afraid to die, but I do not want to suffer. So of course I sought out ways to alleviate my suffering.

Simple things became complicated for me. It's hard to sit, or stand; it's hard to move and to be still. I practised yoga in my daily movements when I couldn't get on the mat, and meditation in my mind wherever I was.

I learned to many tiny, infinitesimal movements toward being the person I wanted to be. Because the time was going to pass anyway. Until it doesn't.

During this time, I've done some of my best writing. Including my piece The Long Driveway, shortlisted for the CBC Nonfiction prize. I took my pages and pages of medical notes and made poetry. Every evening before bed, I write about my days, lest I forget them. I'm working on novels, short stories; I've never been bereft of ideas.

I decided my audience is me.

I began the work of excavating my belief system, of interrogating my self-defeating thoughts and practices, of witnessing. I grew into myself.

It wasn't that I got cancer five years ago and have been recovering since. The amount of secondae one can suffer is truly limitless. I had blood clots including a DVT, ocular migraines, scar tissue stricture closing my ureter, kidney damage, menopause (with its double digit subheadings), the most intractable insomnia of my entire life, pain that debilitates, anxiety that rages, and depression that devours.

And still, I write.

As always, I want to encourage anyone reading this to take all odd symptoms seriously. It was my heretofore clockwork menstrual cycle going off-kilter that made me follow up with my nurse practitioner, who referred me to a gyne specialist, who referred me to a gyne-oncologist. And she told me, that Halloween, that I had cancer, and they caught it early – at stage 3. Because this kind of cancer kills women all the time.

Since then, I've been told I have Lynch Syndrome MSH2, a genetic mutation that makes me much more likely to get cancer, specifically colon cancer but also cancer of basically any abdominal organs (and elevated risk of skin and brain cancer). My sister and mom also had genetic counselling, also have Lynch Syndrome, and have both had Lynch cancers, caught and treated early because of our stringent monitoring.

Another day I'll share the story of how my genetic journey led me to find more family than I would have thought possible, and pass along the information of Lynch with a lineage that suffered countless cancers but was never tested. This has helped me change lives – maybe even save some. A reminder from the universe that my work goes on, even when it feels like I'm standing still in the swirl and clamour.

I don't think I'm naive. I think I'm open. I trust and when people break it, the wound is with them, not me. Which means that if I go against my intuition and break my own trust, that wound is with me. So I endeavour to take myself seriously (but not too seriously), and hold all things lightly and with love.

I hope you are held thusly. Thank you for reading.