Most women in their 30s remember belting out Janet Jackson’s “Control” in the late ’80s.
I’m in control.
Never gonna stop.
To get what I want.
News flash: That song is definitely not about having breast cancer.
In 2010, I was 32 years old, fresh off a broken engagement and ready to regain control from a life that had gotten away from me. I slept in the middle of the bed; I ate peanut butter from the jar while watching hours of terrible television and my life felt as if it were slowly falling back into place.
Then came my breast cancer diagnosis; a tumor in my left breast became two tumors just far enough from one another that a lumpectomy was off the table. A mastectomy and reconstruction where three lymph nodes had tested positive became six rounds of invasive chemotherapy, six rounds of not-so-invasive chemotherapy, six weeks of radiation and a year of exhaustion.
I had no control over any of this — not over what my body was doing, not over my anxiety about having cancer, nothing. There was very little about the breast cancer process that made me stop and say, “I’m in control, never gonna stop.” Lies, Janet, all lies.
Sure, I could have opted not to have a seven-hour surgery that would reshape the body that I had been born with, or could have ignored my oncologist’s aggressive treatment plan, but there I was, sitting with the oncology nurse after I had asked her if I was going to lose my hair. She stared at me point blank and replied, “Yes.”
I came home, stared at myself in the mirror and cried. I cried because I didn’t want to look different — I wanted to look like me. While I might have been diagnosed with cancer, I felt totally fine. It’s the treatment to cure the cancer that will make you feel like shit and typically leave you bald. Up until that point, I was able to walk down the street without the “Oh dear, look at that poor girl; she must have cancer” face that I am sure, unintentional or not, you have given to someone at some point.
I did not want those looks or any looks, really. There had to be a way to take control over some small fraction of this breast cancer journey. It had to exist.
That’s when I decided to freeze my head during chemotherapy in order to keep my hair.
Yes, you read that right. While most cancer patients sleep or watch Netflix while being pumped with the poison that will ideally save their lives, I chose to keep my head at a cool minus-23.8 degrees F for eight hours, four during treatment, four after, every 21 days for six months in an attempt to prevent my hair from falling out. My oncologist, my nurses, friends and family thought I was insane. Why would I add another layer to an already intense situation? Some people would call it vain. Some people would call it absolutely crazy. I called it being in control.
It was up until that point the only thing I could take ownership of. It was my choice to wrap the blue caps that had been sitting in dry ice around my head and change them out every 30 mins while bags of chemo coursed through my veins. It was my choice to line my forehead with moleskin that up until that point I had used to save my feet from three-inch stilettos to protect my skin from freezer burn. It was all me.
This one choice helped change the entire narrative of my treatment. I was able to walk down the street without getting “those” looks. Sure, I had no hair anywhere else — my eyelashes and eyebrows growing sparse as my treatment progressed, but my head of wavy, frizzy brown hair (my nickname in college was the Dark Helmet) was all there.
In 2010 through 2011, when I went through treatment, hair conservation was not commonplace. In fact, it hadn’t been approved by the FDA, which is why my team was so skeptical. They had never seen anything like the traveling circus my parents and I were every time we walked into the office with a cooler filled with dry ice and the caps. Today, that’s changed. The FDA approved cold cap therapy in 2015, allowing more and more cancer patients to change their narrative as I did mine.
I’m now six years out of treatment, and see my oncologist every six months. Without fail, he will say to me, “You were really ahead of the curve on hair conservation.” I agree — and finally feel in control.
Meredith Goldberg is the author of, From Cocktails to Chemotherapy: A Guide to Navigating Cancer in Your 30s, now available.