One morning last October, I caught sight of my hair in my full-length mirror. It had been colored a few months before, so my natural red shade now had gold highlights. Its recent blunt trim left it looking particularly thick and shiny beneath the overhead lighting. I started crying.
I was due to begin chemotherapy for early stage breast cancer in a matter of days and had learned that, in addition to potential side effects ranging from merely annoying to serious, I faced losing all my hair. In that moment, the loss seemed unbearable.
Looking in the mirror that day, I realized how much I love my hair. I regretted every moment I spent complaining about “bad hair days” or wishing its wavy texture away. There were other emotions, as well. Facing chemo was scary, but I was prepared to do what I needed to. However, I am a pretty private person and didn’t like the idea of having my very personal struggle made public at a time when I was at my most vulnerable. I also wanted to look in the mirror and recognize myself, not see a cancer patient.
My surgeon had mentioned something called “cold capping” that could help chemo patients save their hair. It involves cooling the scalp during infusions, to put hair follicles into a hibernated state. The practice has been used in Europe for a decade but was underground in the United States before the Federal Drug Administration cleared a system called DigniCap in 2015. Before this time, the practice was occasionally covered in the media and passed on by word-of-mouth, but hospitals didn’t offer accommodations.
Since being diagnosed, I set out to learn everything I could about breast cancer and treatment options and I approached cold caps in the same way. I searched online and soon after turned to Instagram hashtags, where I found a whole new community.
I was overwhelmed by how openly these posters shared their experiences — I’m a Gen Xer, and these were mainly millennial women. They documented their stories down to photos taken in the chemo chair while wearing cold caps. I began reaching out with direct messages, and was soon talking to other people facing similar treatment. I not only felt less alone, I was better equipped to handle the tough months ahead, armed with new information.
I’d decided to have chemotherapy at Michigan Medicine and chose Penguin Caps, the first company of its kind in the U.S. and a brand known for a high rate of effectiveness. I also needed someone to help with capping — it’s not a job patients can do themselves — and the company rep put me in touch with her cousin Laura, who had worked as a capper for a few years.
I’m not going to sugarcoat it: the process is expensive, involved, and uncomfortable. Fifty minutes before an infusion, Laura would apply protective pads to my hairline to prevent frostbite. She’d then put on my first cap. Since each gel-filled cap had been chilling in blocks of dry ice, they reached a sub-freezing temperature. Caps also had to fit snugly every time, or the wearer would end up with bald spots. It was teeth-grittingly painful at first — I’d inevitably ask myself just how much I really needed hair. But as the time passed, my scalp got numb and eventually it wasn’t so bad. In a strange way, the caps helped distract me from the disturbing fact that toxins were being injected into my bloodstream.
The upkeep was arduous, too. I could only wash my hair twice a week in cold water. No hair dryers or heat styling, and hats or anything else that would warm up my scalp were off-limits. But every time I caught sight of myself in the mirror — no matter how exhausted or anxious I was — I felt grateful.
I was careful to only cautiously hope that I’d keep my hair. I had read that by day 18, many patients’ hair generally starts to go. But that day came and went. As the weeks wore on and I had one infusion after another, it became obvious the caps were working. “You have new growth,” Laura commented, pointing out the fine baby hairs that were still defiantly sprouting around my hairline.
Laura had become my angel. Her kindness and compassion helped me get through each of my 12 chemo infusions. I had other angels, too. A local dry ice supplier named Ivan, whose mother had passed away from cancer, donated dry ice for my caps. After learning that 50 pounds of dry ice is pretty expensive when you buy it from local grocery stores, I’d contacted his wholesale company asking to purchase small amounts of it every week. Ivan never charged me. My Uncle Tom, who’d always been one of my favorite people, picked it up every week and drove me to my appointments and back again, cracking jokes along the way. Then there were those friends who came with me to doctor’s appointments, the mother of my best friend who helped me get in to see my oncologist, the former boss who offered me freelance work that I could manage during treatment, the mentor I was matched with through breast cancer support network ABCD (After Breast Cancer Diagnosis), who has returned every anxious text and talked me down after emotional appointments. And my father who helped me pay for my caps, which are not covered by many insurance plans. (Nonprofit organization HairToStay helps chemotherapy patients afford treatments.)
It’s important to say that some people don’t feel as strongly as I did about losing their hair. Many see their bald head as a sign of strength. For me, though, keeping it symbolized holding on to a part of myself, retaining a sense of privacy and normalcy during a highly abnormal time. And of course, there’s more to my story than hair — how I found the cancer myself in spite of clear mammograms, how I’d had a persistent feeling something was wrong, how I got through treatment, how my life changed as a result. But that’s another story.
After I finished chemo, I waited a couple months to make sure my hair was staying put. Then one warm spring day, my uncle and I drove to see Ivan so I could thank him in person. We pulled up to a nondescript building located in an industrial area outside Detroit. Ivan and his coworker came out to meet us and I gave him a hug and a bag of bakery goodies. His coworker talked about how his wife was a breast cancer survivor. She was doing fine. Getting back into the car afterward, I caught my reflection in the car window. It was hard to believe, but I was, too.