Shattering the Illusion of Control

Jenn Sutkowski

The call you don’t want: “May I speak to Jennifer, please?” “This is,” I answered, shaking because it was Kelly Dusenbery from The Hofman Breast Center at Mount Auburn Hospital in Cambridge, Massachusetts. “Unfortunately—” That word echoed and ampliied in my head so loud I swore my husband could hear it because he peered around the corner at my face as I slumped onto the couch with the heft of the news. Suddenly there was a crack in the ground between my old life and me. F-ing cancer? I was diagnosed with Ductal Carcinoma In Situ, stage zero, in my right breast. After my irst mammogram (and subsequent biopsy) at age forty. Like, huh? It’s nearly the last thing you expect. “In Situ’ means it is in place, in the duct, it hasn’t spread,” Kelly said. “That is good. It is the earliest stage, and you’ll have surgery and probably radiation but not chemo, and then you’ll go on medication, and if you tolerate the medication, you’ll stay on it for a few years.” I took a deep breath and sighed long and hard. “OK?” Kelly said. “OK”? Can I say no? How about: “Yeah, not OK. Smell ya laterrrr. Byeeee.” But I said yes. I mean, what the hell else was I going to do? I wondered how much of my body I would lose. I had cat scans and ultrasounds and MRIs and blood tests to check if the cancer I had was the only cancer I had and whether I was prone to more cancer. While waiting on my genetic testing to come through – to see whether I had the BRCA-1 or BRCA2 mutation – the room that was my body expanded and contracted like I was on acid. “How much of this am I going to keep?” I wondered, holding my breasts and my belly. Sharp butterlies lew through my stomach with every thought. “Should I have a mastectomy? A double mastectomy?”

Ovarian cancer tore my mother from me when I was twenty-four. She had breast cancer irst. She did not have the BRCA mutations, but she had a variant of one of them. What if I was walking the same short road, canyons on all sides? What if my path was precisely her path? She was terriied as she was going through her illness. You could smell her fear in the curtains. You could smell through the whole house when she emptied her colostomy bag. And she was ashamed. “Your path is not your mother’s path,” my friend Sara told me. “It just cannot be. It is your path.” Having someone like this to share that with me showed me it was diferent. Also, my husband was more attuned to my needs than my father was with my mother. Dad tried – they even went to Germany for alternative treatment when my mom refused the last chemo course. But sometimes, while she was in treatment, he was pouring Johnny Walker Double Black into the chasm where his certainty had been – certainty that being a good Catholic would keep our family safe. My genetic testing came back without mutations. OK, just a lumpectomy. “Something, maybe nothing,” on my breast MRI sent me into another swirl of searing panic, so I breathed (too quickly) while dangling over another potential abyss. There was nothing extra there, either. Phew. A lot changed in the week after my diagnosis. I suddenly gave so fewer shits about so many things. I stopped (temporarily) caring what people thought. I also realized I didn’t allow people to nurture me enough and started lowering the drawbridge to let myself receive without guilt. I couldn’t decide whether to tell my father about my diagnosis. He was struggling with Alzheimer’s and I didn’t want him to languish in the vague memory that something was wrong with one of his kids. The part of me that ached for my parents’ love during this momentous time felt ripped from his side. I didn’t tell him. I leaped into the trust that I’d ind what I needed, though, and my sisters drove up from New Jersey to Cambridge to help me through some appointments and surgery. “Mom told me before she died, ‘Make sure you take care of Jenn,’” my sister Karen told me. I wept with gratitude. Maybe Dad couldn’t scoop me up, but in a way, my mom could. After recovering from my lumpectomy, I was ready for take-of in the radiation machine. It was pretty easy sailing, relatively speaking, besides the

time the techs set the thing up to radiate the wrong breast. I listened to Beach House almost every day for those six weeks on that excellent sound system in Radiation Oncology while they zapped me with the healing light ray – that’s what I called it. It was like being in space. So many women held my hand step by step over this uncharted territory. Sure, there was a physicist who poked my nipple with a pen by accident, searing me with blistering awkwardness. The women, however — all amazing. “You’ll see a lot of people down here going through some intense treatment and stuf. You’re not their comrade in arms,” Dr. Lamb, my radiation oncologist, said. Because what I had going on was not so bad compared to, say, the woman in the wheelchair clutching a giant mason jar of green tea. The fatigue was exactly as gravitational as I’d heard. One day while driving, I thought, “I can see how people could just slip away and die from this kind of exhaustion.” I scrunched and opened my eyes so as not to ironically lose my life in a car accident while being treated for cancer. I savored small, sensual moments, like soaking in a bath, reading Patti Smith’s Just Kids, and putting my hand on my husband’s shoulder while he slept. There was, in fact, joy on this side of the pink line. But even though it was “not life-threatening,” as my breast surgeon had said, I still felt the ground slip away from me as I stared down my mortality. “What do we want?” my husband and I asked ourselves. I had already been wanting to leave Cambridge. We had many friends there, but I was starting to feel like I was squishing myself into the Cambridge-shaped box instead of living somewhere my body could breathe. I was lucky – not everyone could pick up and go. “I want to go to Boise when this is over,” I said. We would visit about every six months on our way to or from Pocatello to see my in-laws. We were in a cross-country band with our dear friend in Boise and thought, what if we lived there? So, we visited, looked, found something. “It happened so suddenly,” my sister Mary Beth said about our move. Some friends agreed. “True,” I said. “But it was time.” We would still travel back and forth to Boston for a bit but living somewhere I could hear myself think felt like a bridge to whatever was next and right.

Before we left Boston, my husband and best friends and I snuck into Walden Pond and skinny-dipped during the full moon. “I need to seal myself back into being a body in the world instead of a body in a hospital,” I told them. I would have to remind myself (and still do) that I trust my life. And this could have been a more disruptive story had I not had privilege or insurance or a nurse practitioner who pushed me to get a mammogram even though the guidelines for age and screening were changing. Other people in my position might not have had a mammogram at all. Out West, I was grateful for the quiet of the high desert and playing music with friends after my life felt like it could fall apart or, like, end. Cancer is a sledgehammer that upends your life if you’re lucky. You might heal of it. But if you’re like me, you’re left with post-traumatic medical stress in the hole where the cells that went awry were. After a rupture like that, tucking into a new place and continuing to heal helped me see there wasn’t an ever-widening crack beneath my feet. I tried to focus on the steady ground instead of all the potential gashes to come, even though I often found myself absentmindedly picking at my body for more lumps and clots and manners of my demise. But this is what life does. So, choose to focus on the hands extended to you while lailing in the cosmos. Look into the void and be afraid – but reach out and keep moving forward. Oddly, perhaps, I prefer this path to the one I would have remained on had everything stayed perfectly intact. There was only ever an illusion of control anyway.

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BREACH

I want to test and glory in each day, and never be afraid to experience pain.

SYLVIA PLATH

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