Did You Hear About Betty Rothberg?  

There’s a great scene in St. Elmo’s Fire when straight-laced Wendy takes wild-man Billy home to meet her family. Wendy tells Billy, “There are certain words my mother finds too horrible to utter so she whispers them. You’ll get used to it.” They cut to her mother sitting at the grand dining room table, “Did you hear about Betty Rothberg?” Then she loudly whispers, “CANCER.” Betty Rothberg’s whispered *cancer* became an easy punchline for me whenever the mood needed a little lightening. I found it hilarious and a little ridiculous. What was so bad about cancer? Why can’t we say this word out loud? What’s the big deal? When my own grandmother was diagnosed with breast cancer when I was a young adult her cancer was also too horrible to utter. I was told she had “The Big C.” I had no idea what this was. Did she have chlamydia? Of course not! She had the “C word,” which had a very different meaning than my “C-word.”

What I learned, during these exchanges, is that one must never mention the word “cancer” out loud. I couldn’t understand the reasoning, I just knew, like one knows not to talk about Fight Club, that you don’t talk about cancer. Perhaps it was like the scene in The Lion King when the hyenas are talking and the evil lion Scar says “Mufasa” and the hyena, Shenzi, says, “I just hear that name and I shudder.” Was the word cancer itself so scary that it strikes fear into the hearts of those who mention it?

But then it happened: The Pinkening. Breast cancer became popular, trendy even. Walks and 5Ks sprung up to spread “awareness” and find “The Cure.” Denim companies sponsored days you could wear jeans to work if you donated to their cancer foundation. And somehow, someway, breast cancer took on the identity of Pink and took up residence within the month of October. Any product, company, or team that can, throws a pink ribbon on itself “for awareness.” And the general public seems to like The Pinkening. Pink is pretty and girly and non-threatening and that is what people think of breast cancer too. It’s curable, no big deal, early detection, blah blah blah.

I’m disappointed to say that, before I was diagnosed, I too thought breast cancer was no big deal. Movies and TV shows made breast cancer look like a Vision Quest type journey where you come out stronger and with great wisdom on the other side. It was the “good” cancer, the curable one. You even got a free boob job!

Then, in August of 2019, I was diagnosed.

Before my staging MRI, when the shit really hit the fan, I was rather optimistic. My doctor personally told me I had the “good” cancer. “It will be a tough year but you’ll be fine.” I was 42, this would be a small bump in the road. I joked with my friends about getting new boobs. I made a meme starring Wendy’s mom in St. Elmo’s Fire, “Did you hear about Erin Weiss? CANCER.” I decided it would be hilarious to share that I had cancer like people do when they are expecting new babies. My friend and I spent an evening making fake birth announcements for my cancer which we cackled at.

In reality, I posted a selfie of me wearing a black t-shirt that said “NOT TODAY CANCER,” with a sweet paragraph about being diagnosed and being strong and fighting hard. This corresponded with the beginning of what I lovingly, yet sarcastically, refer to as the “Newly Diagnosed Starter Pack.” My hashtag, #ErinStrong, got started. Can you even have cancer these days without your name becoming #WhateverStrong? An acquaintance made hundreds of pink rubber bracelets that said “Erin Strong” with an anchor on them and they were given out to loved ones near and far. I was gifted 23 adult coloring books and six sets of colored pencils, seven blankets, 12 novels, 41 bracelets, loads of pink ribbon related stuff (which I liked at the time), and five cookbooks about fighting cancer with food/juice/tea. A friend set up a Meal Train. And I started my CaringBridge page. Ta Da! I have breast cancer!

But then everything turned to shit. The staging MRI showed I had Stage IV/MBC de novo. Instead of dealing with a little bump in the road, I had a sinkhole, and it was going to kill me. Not only did I feel alone within my diagnosis, but I also felt completely isolated from The Pinkening and popular breast cancer culture. A color shouldn’t represent cancer, especially a cancer that kills 30% of us. I threw out my pink ribbon t-shirts and water bottles and pens and statues and bracelets. I distanced myself from the faux-culture, and I opened my eyes to what it really meant to be a young woman with breast cancer, especially the metastatic kind.

This diagnosis has significant meaning in our lives and it completely disrupts our realities. It robs us of our bodies, our relationships, our fertility, our futures, and for some of us, our lives. We want to be seen and heard and understood by doctors and loved ones and society. We want to be taken seriously when we find a lump, even though we might be “too young for breast cancer.” We don’t want the grocery store to vomit pink in October, in fact all of Pink-tober could go away and we’d be fine. We talk openly about scans and scanxiety, PTSD, and the emotional impact of having this disease. We share treatments, and side effects from treatments, that are sometimes worse than cancer itself. We show pictures of mastectomies, reconstructed breasts, flat closures. We talk about intimacy and being robbed of feeling like sexual beings. We shave our heads publicly and share pictures of ourselves bald. We talk about fear; fear of recurrence, fear of the unknown, fear of dying.

And we do all of this not for shock value, or to make people uncomfortable or feel shame, but to connect. Because if I’m going through it, maybe someone else is too. That connection creates strength. And there is something pretty incredible in knowing you aren’t alone, and normalizing something that initially might not feel so normal or comfortable. We don’t want to be a footnote in the cancer literature. Young women are being diagnosed with breast cancer at staggering rates. We are here. We aren’t hiding. And we aren’t going to whisper about our cancer anymore, or Betty Rothberg’s.

^{This piece has been republished with permission from WILDFIRE Magazine, the “Cancer Culture” issue, published originally February 19, 2022. More information available at  wildfirecommunity.org} 

^{WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit  wildfirecommunity.org for more info.}