Insides Out

December 6, 2013 in coping, family history, gynecology, Uncategorized by Ami McKay

 

"Exquisite" by Susan Messer. (Part of the Exquisite Uterus Project)

“Exquisite” by Susan Messer. (For the Exquisite Uterus Project)

 

In the dark of the year, while I’m counting the days until there’s more light, I’ve decided to write the story of how I came to give up my womb.

December 2012

This time last year, I began having recurring, right-sided abdominal pain. Although it seemed as if I was having all the symptoms of a gallbladder attack, I worried that it might be something more. (In my family, colorectal cancer has often been heralded by such pains.) My family doctor understood my concerns, and immediately began searching for answers. She ordered blood work, an abdominal ultrasound, a ct scan and a colonoscopy. While working through my string of appointments, I instituted restrictions and changes to my diet in hopes of eliminating anything that might have created the problem. But to be honest, even when a vegan diet helped ease some of the pain, I still couldn’t stop wondering if I might have colon cancer. Awareness vs. worry is the double-edged sword you carry when you know you have Lynch Syndrome.

January 1, 2013       “I wept after midnight – not my usual way to ring in the new year. Excitement and resolutions feel overwhelming when there’s illness looming. Not sure I’ve ever felt such a lack of promise in a coming year. I’ll try to make the best of it by holding on to one wish – to make magic, always.”

created by Christine McCullough for the Exquisite Uterus Project

created by Christine McCullough (for the Exquisite Uterus Project)

January – April 2013

Much to my relief and bewilderment, every test came back clear. My blood work was good. The ultrasound showed no signs of gallstones or inflammation or “sludge.” My colonoscopy was clean. The only blip on the radar was a faint shadow on my ct scan indicating I had an ovarian cyst.

Meanwhile, I’d been keeping track of everything in my daily journal – every morsel of food and every cup of liquid I put in my belly, every step I’d taken – running, walking, hiking. When the pains struck again, I tore through the pages of my journal searching for any kind of pattern I could find. Oddly enough, the pain and my digestive troubles seemed to be tied to my monthly cycle.

May 2013

The day Angelina Jolie’s op-ed “My Medical Choice” was published in the New York Times, every branch of the media, traditional and social was buzzing with news of her preventive double mastectomy.

Words like brave and courageous were immediately used to describe her decision, alongside pointed remarks such as “medical fear-mongering” and “acting out of fear.” I linked to the article on my personal facebook page, knowing friends would be wondering what I thought about it. While her genetic mutation isn’t the same as mine, the topic of prophylactic surgeries (in my case hysterectomy and subtotal colectomy) was something I’d discussed with friends and family, as well as with my doctors in the years since I’d gotten the results of my genetic tests.

May 15, 2013 “I’m glad she feels confident in her choice and that she’s chosen to tell some of her story. More importantly, I’m glad she’s opened the door to conversation on the topic of testing for genetic mutations for cancer. There are women and men, right this moment, dealing with the implications that come from living with a genetic mutation for any number of cancers (and their various associated cancers.) Will I have my colon removed, my uterus, my ovaries, my breasts? The list of body parts seems to get longer every year.”

And then it hit me. Menstrual bleeding that had become quite heavy the year before, was getting progressively worse. In the past few months of worry over my guts, I’d shoved the knowledge of the very high risk of uterine cancer for women with Lynch Syndrome (especially those with my specific mutation) to the back of my mind. I’d been getting annual screenings, but my gynecologist was the first to admit that the surveillance methods for detecting gynecological cancers aren’t as reliable as colonoscopies are for spotting colon cancer. Suddenly the screening regimen I’d been following for the past decade no longer felt like it was enough.

"Free Will Offering" by Christine Pierce (for the EUP)

“Free Will Offering” by Christine Pierce (for the EUP)

I was done having kids, so making the decision to have a hysterectomy should’ve been simple enough, right?

Not in the least.

Yes, I was done having children, but it wasn’t as simple as that. I still had a fondness for the uterus that had shed its lining like clockwork since I was eleven, for the womb that had carried and nurtured my two sons. I’d had my share of “girl troubles” over the decades, nasty cramps and monthly migraines that had started when I hit puberty, as well as more recent rounds of heavy bleeding that had left me so drained and dizzy during my period I was afraid to leave the house. Still, I’d wanted to stick it out, hoping my problems would disappear once I reached menopause. A quick Google search of “hysterectomy complications” left me even more conflicted. (Talk about entering a world of fear and trembling.) It’s hard to think of benefits while you’re staring at a long list of risks.

Why couldn’t my body see itself through this mess? I wondered. I was as connected to my menses as any wisewoman I’d ever met. I’d never even called my monthly cycle “the curse.” I’d paid attention to my body my whole life, never smoked, rarely drank, ate whole, organic foods whenever possible. I’d spent years of my life researching the history of women’s reproductive health, made documentaries about midwifery past and present, created an entire novel out of my reverence for pregnancy and birth. (I swear my brain was a second uterus during the writing of The Birth House.) For years I’d been surrounded by women’s birth stories every time I spoke in public. I adored being immersed in that world and bearing witness to the struggles and strength of women. How could I possibly choose to abandon my womb?

Eunice Choi's contribution to the Exquisite Uterus Project

Eunice Choi’s contribution to the Exquisite Uterus Project

My mother had a hysterectomy when she was in her late thirties. All I can remember from that time is sitting next to her lawn chair in the backyard, grass prickling my bare legs while I stole sips from her rum and Coke. She’d avoided/evaded/escaped endometrial cancer, but would later be diagnosed with colon cancer, twice. She’d died just a few months after completing her second round of chemo. I couldn’t stop thinking of the words she’d said to me after her first diagnosis. “I’m angry. I feel like my body has let me down.”

I called my older sister to ask if she could remember what had led to my mother’s hysterectomy. The symptoms she listed sounded much the same as mine. As soon as our conversation was over, I hung up the phone and called my gynecologist.

At my appointment, we talked through various options, and what surgery might be right for me. Although it wasn’t an emergency, my gynecologist was quite concerned about my well-being and suggested we put a rush on the date. After I’d agreed that sooner was better than later he asked, “were you going to suggest we wait?”

I shrugged and said, “Just until I’ve finished my current novel’s draft.”

Shaking his head he said, “You’re forty-four. You have Lynch Syndrome. Think of how you’d feel if cancer arrived while you chose to wait.”

I knew he was right. What I couldn’t tell him was that although he was clear and kind and open with his advice, I was still struggling with my decision. Saying yes to the surgery meant letting go of a secret, beautiful dream I’d been keeping to myself – one in which I never needed to worry about cancer, one in which every test I ever took came back clean because I was, by some miracle, a superhero within my family tree – the girl untouched by Lynch Syndrome.

"My own Bayeux Tapestry" by Alison Gates (for the EUP)

“My own Bayeux Tapestry” by Alison Gates (for the EUP)

July 23, 2013. “Birdsong, sunrise after a full moon night.”

Two days before my 45th birthday, I was admitted to hospital for a hysterectomy. I made it through the surgery without too many bumps or bruises, and was released in time to go home for cake.

During my six week recovery there was pain, fatigue, night sweats, crying jags, and lots of rules (no soaks in the bath tub, no lifting anything heavier than a tea kettle, no this, no that.) I had an amazing support team at home headed up by a spouse who was willing see me through the laughter and the tears, the healing and the loss, (not to mention an intense case of “cancerhead” during the wait for my pathology results.) Thank heavens everything, including some nasty fibroids, were clear!

Even with my family around me, I couldn’t shake the feeling that I needed to shield others from my recovery process. I apologized for my lack of energy, my impatience and my blues. No wonder women tend to disappear after the surgery. I found it difficult not to feel like a lump of uncertain, unfocussed flesh. Still, I walked a bit further down the road each day, gaining more strength in body and spirit. When life only allows for one goal to be met each day, the setting (and meeting) of that goal takes on an air of magic.

"That's What She Said'" by Michelle Ciarlo-Hayes (for the EUP)

“That’s What She Said'” by Michelle Ciarlo-Hayes (for the EUP)

December 5, 2013

Five months on, I feel I made the right choice. I have more energy now than I had before the surgery, and the weight of worry that I’d felt over the impending threat of endometrial cancer has been lifted. (Plus, just knowing I’ll never have another endometrial biopsy makes me smile!)

Working up the courage to write about my hysterectomy was more challenging than I’d expected. In some ways my body has healed faster than my heart. I plan to write more about the ins and outs of my surgery and recovery in the days to come, but for now I’ll leave you with the following quote. It’s one that’s inspired me for many years, and has seen me through some difficult times. Perhaps it can help you in your journey, wherever you might be headed, as well.

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” – Anais Nin

A note about artwork: The images included in this post come from an amazing art collective called “The Exquisite Uterus Project : The Art of Resistance.” Special thanks to Helen R. Klebesadel for allowing me to share them on my blog. You can find out more about the project, the contributing artists, and see the entire collection via the following links:

The Exquisite Uterus Project

Exquisite Uterus on Pinterest