The journey back to myself
Navigating romantic love after a traumatic experience is overwhelming and no one prepares you for it,
Mary Ellen Brett writes
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The candles were lit and my partner was already in bed. I was taking a quick shower, trying to magically will my romantic juices to flow. I ran my hands over my abdomen. To the right of my belly-button, three inches below, my fingers slid over a shiny red mound: my small intestine. Or, to be precise, the ileum: the lowest part of the small intestine. It looked a bit like a strawberry, its head poking out through a surgical opening in my stomach called a stoma. I had named it Ron.
My partner called out to me, "Everything all right in there?"
"I'm okay, just dealing with Ron, be there in a minute."
Ron's official title is "ileostomy" and his main responsibility is to secrete my waste into a small beige clip-on bag that I empty throughout the day. The bags are insanely pricey; I could have bought a Birkin by now with all the money I've spent on them.
Later, lying in my partner's arms, I said: "You know, Ron is actually the most perfect shade of red. If he were a lipstick colour, he would be a bestseller – 'Ileum Red' by Revlon."
"There is something seriously wrong with you," he laughed.
I kissed him. Yes, there was.
Three years ago when I met my partner, I was ileostomy-free. When we first started dating, both of us in our mid-forties and divorced, I got sick a lot. I blamed it on Toronto's weather.
"I lived in Los Angeles for 12 years and was never sick!" I would complain. Turns out I had an aggressive, incurable cancer: peritoneal mesothelioma.
"Leave it to you to get a weird rare cancer that no one has ever heard of," my partner said.
It's true, I've always had a flair for the dramatic. Peritoneal mesothelioma is cancer of the peritoneum, a Saran Wrap-like layer covering the abdominal organs – who knew?
We were only one year into our relationship when we received the news; the proverbial honeymoon stage was over. My partner smartly decided we had to get away before my surgery. Off to the Bahamas we went. A week later, I was splayed out on the operating table being gutted like a fish, while sporting tan lines and a coral pedicure.
After the eight-hour surgery, heated chemo was poured directly into my abdomen while I was still on the operating table. The procedure is called Hyperthermic Intraperitoneal Chemotherapy, or HIPEC. But I prefer its less formal name – Shake 'N Bake.
After two months in two hospitals (because of complications), I was discharged weighing 95 pounds and sporting fried hair, sunken eyes and wearing my partner's old Waterboys t-shirt.
Preparing ourselves for our unknown future together was something we dealt with differently. My partner's approach to life was science and evidence based. There was no sugar coating, no rose-coloured glasses, no unicorns and no God. He didn't dare hope for the best – that was too emotionally risky – but he also didn't waste time worrying about the worst.
I approached life from a more emotional, anxiety infused, multireligion perspective. Every night, I prayed to God, Goddess and the Universe. That's what you get when you combine two years of Catholic School with Women's Studies at U of T and living in Los Angeles. I worried obsessively about worst case scenarios.
Although I knew my recovery would be long, I was not prepared for the difficult journey back to emotional and physical intimacy with my partner. Navigating the world of romantic love after surviving a traumatic experience, not just cancer, is overwhelming and no one really prepares you for it. My nurses taught me how to care for my stoma and how to self-catheterize with a tiny tube (my bladder had suffered nerve damage during surgery because of the location of my primary tumour), but no one taught me – and really, how could they? – how to be comfortable being intimate again. How to switch my brain from survival mode to "It's okay, you're still alive, now live a little" mode.
Like a magician's trick, my libido had vanished into thin air after the hysterectomy that had been part of my surgery. Despite being allowed to use hormone-replacement therapy, my body lost any ease it once felt being sexual. A pelvic physiotherapist gave me a lavender-coloured, five-piece dilator set to "retrain" my vagina. It looked a bit like a mid-century sculpture. I kept it on a vintage floral tray, along with the estrogen cream that I once mistook for hydrocortisone and applied to the side of my nose.
I feel shame about my lack of desire, my sexual challenges and my body. And then, I feel deep guilt for feeling shame: I'm insanely lucky to be alive. Many people with mesothelioma (aka the Asbestos cancer) don't live more than a year after diagnosis. I go round and round in this ridiculous, neurotic circle of crazy.
So my partner and I move forward together, in three month increments, waiting to see what fate has in store for us each time I get scanned.
We maintain a full and rich life – we've simply learned how to work around my fatigue. My partner loves going to see live music, so I nap before concerts and we skip the encores to get home earlier. We plan vacations, but not too far in advance.
My partner is practical when it comes to our precarious situation. He says he is just grateful that I am still alive and that every day with me is a gift. For a man who doesn't sugar coat anything, those are indeed the sweetest words.
Mary Ellen Brett lives in Toronto.