Discovering the Why

My short essay “Discovering the Why” has been selected for social media publication with Wildfire Magazine’s Family April/May 2024 issue. I’m so grateful to have discovered Wildfire almost three years ago through a friend in a virtual AYA cancer support group. At the time, I was wrapping up cancer treatment and longing for a community where I could share my love of writing with others who had been through cancer– and read about the journeys of other young women who could relate. My short essay “An Unlikely Ally” was published in the physical edition of their Identity & Aftermath issue in January 2023. Wildfire is “the only magazine for and by people too young for breast cancer”. If you’re a part of that community, I highly recommend connecting to Wildfire through their writing workshops and online community. Below is my essay “Discovering the why”:

The best part about learning of my CHEK2 mutation was that it answered the incessant “why” thundering through my skull.

Why was I diagnosed with stage 3 cancer at age 32?

Why was I abruptly faced with my mortality at 37 weeks pregnant?

Why was I thrust into an MRI machine, a PET/CT scan, a mammogram with engorged breasts still leaking milk one week postpartum, all with the constant threat of an aggressive invader spreading through my lymph nodes?

Why was my life upended?

Why weren’t all the healthy choices I made enough to keep me safe?

Why me?

Sitting down across the narrow table from the genetic counselor two weeks into treatment, I was given a part of the “why”: a genetic mutation closely tied to primary breast cancer risk, and to an increased risk of a secondary breast cancer, and additional risk of colon/rectal and other cancers. The handout placed in front of me painted these risks in percentages rather than realities; I’d already received the cancer diagnosis, and future threats seemed farther off than ever when my body was already an active war zone.

The mutation “literature” before me wore a bright red box with a white plus sign encircled in white. “Clinical significance: High Cancer Risk.” It seemed threatening, yet the handout was thin; there wasn’t much to deliberate. The counselor explained that my particular mutation involved the deletion of exons 8 through 9 in the CHEK2 gene. 

“What does that mean?” 

The genes that were supposed to be protecting me from cancer were not forming correctly, and instead had done just the opposite: allow cancer to grow unchecked, and at an alarming rate. By the time I was swooshed through the MRI machine for my initial scans, the primary tumor measured 6cm x 3.5cm x 6cm, the entire abnormal area within my breast expanding to 9cm x 5cm x 6cm within a few short months since I’d first noticed the change in my breast tissue’s texture. 

There was no clear answer for where the gene had come from. I might have inherited the mutation from either side of my family. Both of my grandmothers had already had breast cancer, albeit when they were more than twice my age. My dad had also received a prostate cancer diagnosis the year that I was married; he was only in his 50s at the time, but he was soon doing okay.

We’re both doing okay now. 

The worst part about learning of a genetic mutation is the guilt of inheritance. What do you do when you might have passed on something terrible without your knowledge or consent? 

Nothing. I can’t rip out my CHEK2 mutation any more than I can alter the genetic mutation that made my eyes blue or the one that turned my hair ginger (mutations in genes OCA2 and MC1R, respectively, if you’re curious), or any of the countless other mutations I likely have. Yet any of my three little boys might have inherited my cancer risk through no fault of our own. It’s a guilt that picks at me. I’d give anything for them to instead have inherited my love of adventure, or the joy I find when reading, or my tendency toward feisty outbursts, or my taste for spicy foods… God knows they’ve inherited all of these things already, but I wish I could guarantee the CHEK2 mutation would stop with me.  

My family spent 2020, the year of my cancer treatment, at home for the most part, the way many people spent that fateful year. I often wondered why it had to be that year, why did the mutation wreak havoc right before my youngest was born, and then why did the pandemic send everyone scattering away right when I needed people the most. 

But it wasn’t all bad. 

In May of 2020, my husband, kids, and I loaded into our red Ford Explorer and made the trip out to South Dakota. The Badlands seemed the perfect place to be in the midst of a pandemic as I recovered from the last round of chemotherapy and prepared for surgery. A road trip with three kids under six during a global lockdown when half the bathrooms and restaurants are closed, is about as hectic as you can imagine. My husband and I alternated between scolding the kids for touching everything in sight and laughing about how ridiculous it all was. 

When we unloaded everyone at Mount Rushmore on the second morning of our trip, the air was already unseasonably humid and muggy. I wore my lightweight chemo beanie and the most comfortable clothing I’d packed, but I could already feel my clothing sticking to my skin between myself and my youngest, who was tucked into the baby carrier on my chest.

The monument was nearly empty, though admission was free at the time. Some areas of the park were curtained off for renovations, and a couple other families were taking in the sights, drinking coffee on benches or carrying water bottles strapped to hiking backpacks. My husband tracked down a young couple to snap a few photos of our family sitting on the stone wall with the carved faces of presidents in the background. 

I couldn’t make the hike with my husband and the older two up the path for the closest viewing area; my body was just too weak at that time. My youngest, Corey, and I sat on a bench at the bottom. I popped him out of the carrier as he was fussing (my kids disliked sitting still even in infancy) and bounced him on my knees. I made up a silly song about his brothers hiking up the trail with Dad.

“We’ll join them next time, when we’re big and strong, next time, next time!” I sang.

He scrunched up his face, then finally managed one of his wide-mouthed smiles when I made my voice goofier. A hint of a giggle squeaked out. Success!

When the others returned, my oldest asked why I didn’t join them for the hike. 

“I’m still too tired,” I admitted honestly. “But I’ll join you next time. Next time!” I repeated outlandishly for Corey’s benefit. This time, the baby burst out into his signature wild giggles that he is still known for at age 4. Soon, all five of us were laughing. 

We haven’t been back to South Dakota yet, but I have faith that we will. I’ve felt my body regain its strength over the last four years and I’m grateful that I can join my kids on any hike they pick out these days.

2020 was the most difficult year of my life, but it was also a year of beautiful, treasured moments. It was a special year of watching my kids grow despite it all. By the end of that year, I was relatively certain that I would get to see them grow a lot more than I dared to expect when I first received my diagnosis. We made it through, and I know we’ll face anything else, mutation-related or otherwise, just as we always have: with tenacity, love, and, most importantly, laughter. ❤️