We take care of us

When I faced a cancer diagnosis this year, I had to get honest and get help.

6 minute read
9 actors pose in a human sculpture at a crosswalk under a big bridge, hands touching each other's backs.
Who has our backs when we face life’s bridges and crossroads? Performers from the 2022 Free Fringe show ‘Free Fleet’ embody joyful collaboration. (Photo by Alaina Johns.)

“Ow!” I said, my breath hissing through my teeth.

“Is it normal for you to have that much pain?” my doctor asked, pausing her exam.

“No,” I said. She ordered an ultrasound, and then another one six weeks later. I didn’t have time to think much about it—the 2022 Fringe Festival was beginning.

In early October, I glanced over the radiologist’s report on my digital patient portal, and froze. I scrolled carefully back to the top of the test results page and read it all again as if the line at the bottom might change. It didn’t. “High likelihood of malignancy,” it said. A mass that looked like cancer was growing on my ovary. Get thee to an oncologist.

When my doctor called, she sounded calm, sympathetic, and serious. Everything might be OK. Or I might have to kiss all my reproductive organs goodbye, say hello to menopause at 39, and hope the cancer wouldn’t spread. I needed bloodwork, a contrast MRI, an oncologist, surgery, and a biopsy. ASAP. Less than a year after my hospitalization for bipolar depression, it was almost too much to bear.

Who needs to know?

As I cried into my keyboard (and my dinner, my pillow, and my dog) I struggled with whether or not to tell anyone about this—my colleagues, my housemate, my partner, my friends, my family … or you. And I wonder how many other people, especially the ones rocking a uterus and ovaries for any part of their lives, have felt the same. Many of us live in fear of taking up too much space or drawing too much attention to our bodies or our reproductive status (especially in post-Roe America).

Plus, how could I burden anyone else with this if I didn’t know what the outcome would be? No wonder my heart raced at the thought of trying to tell you or anyone else that I might have ovarian cancer.

After a few days, I told my immediate family, because I knew that if they were in my shoes, I would want to know. I told my partner because we spend too much time together for me to pull off my patented not-in-crisis act. I told my housemate because Covid-19 safety became paramount before my appointments and procedures. And I finally told Neil and Kyle here at BSR, because I didn’t want them to wonder about my uncharacteristic absences. My voice shook and I wanted to scream apologies for what was happening to me.

The hardest part?

The night before the MRI, I barely slept. That morning, the nurse couldn’t get the IV in and the needle poked and poked. Tears suddenly poured out of me and she had to stop and get me tissues.

“I’m not crying about the IV,” I snuffled. “I’m stressed because I’m waiting to hear if I have cancer.”

“The waiting is always the hardest part,” the nurse said.

If she was right, why was my agonizing uncertainty a strictly need-to-know item? I began to worry I wouldn’t even make it to the tell-all surgery if I didn’t have more help.

Over the next few weeks, I was more honest with my friends. One took me out to a sumptuous Italian dinner on a heated patio so I didn’t have to risk Covid inside. Another could empathize because he had undergone treatment for lymphoma. Others invited me to stay the weekend and walk in the Wissahickon, where the blazing yellow leaves and the blue sky were the perfect antidote to the MRI tube. Another had long, tender phone conversations with me.

My cousin met me at the oncologist’s and rubbed my shoulder while I waited dry-mouthed in the exam room, swathed in a crinkly paper sheet from the waist down. Two weeks later, my mom drove me to the hospital and fed me applesauce after I woke up, in too much pain to sit up and too groggy to hold a spoon.

What I deserved

My mom was also able to tell me what the surgeon told her: the suspicious mass was benign.

First, a flood of relief. Then, anxiety tinged with shame. I had made my loved ones worry for nothing. Would they be annoyed? Did I even deserve their care if I wasn’t facing a dangerous illness?

Honestly, thoughts like that are why I’m still in therapy. And they’re why I’m telling you all this—in case you have thoughts like that, too.

Because here’s what really happened.

My mom told my partner the good news while I was still under anesthesia. He made a video of himself telling my dog (who did not care) and sent it to our close friend (who did). A few hours later, when I could look at my phone again, the screen was full of notifications from people who knew about the surgery, wishing me well.

As soon as I was able, I began to text them all. Two fallopian tubes, one ovary, and a tumor were gone, but no cancer. NO CANCER. And it was like lobbing a little firework each time, feeling my friends’ relief over and over.

Later, I realized that this exponential joy would never have existed without the excruciating vulnerability. I realized how harrowing the weeks before my surgery had truly been, and how I had needed and deserved support, regardless of my prognosis.

Vulnerable, honest, liberated

In her new memoir Year of the Tiger, Alice Wong articulates a principle of disability justice: “Being vulnerable, as well as honest, is the key to collective liberation.” This isn’t easy. “It requires daily intentions, self-reflections, and support from the people who care about you.”

Right now, the Philly arts community is demonstrating the liberating effect of honesty in the face of illness: friends of Dito van Reigersberg (also known as beloved Philly drag queen Martha Graham Cracker) recently announced that he has leukemia, and he needs us. On December 21 from 5-8pm, Bob & Barbara’s Jazz Lounge will host an event featuring live music, drink specials, and the chance to sign up with Be the Match, boosting van Reigersberg’s chance of finding a stem-cell donor (and increasing the donor pool for thousands of others who also need a lifesaving bone-marrow transplant).

If you can’t attend the event, anyone eligible can still join the registry anytime—now that I’m recovered from my own surgery, I signed up, because it’s my turn to help someone else.

I’m grateful I was spared the ordeal of cancer—this time. Maybe you or I will face a similar crisis in the future. Maybe you already do. But that’s why I’m sharing this with you. Resilience and strength were never a solo project. We are all vulnerable. You are worthy of the care you need.

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