Controlling my story with scalp cooling

Reactively, I put my metaphoric boxing gloves on and decided to fight back with every part of me. I did this in many ways, but the most physically obvious is that, despite going through a chemotherapy regimen with a 100 percent chance of hair loss, I am not bald. In fact, now a year out from my final infusion, my hair is the longest and thickest it has been in years.

One of my initial looming thoughts during my transition to cancer patient was, “Will I lose my hair?” I assumed the answer was a resounding “yes.” To my amazement, I was wrong. Through a simple Google search, my mom discovered that hair preservation during chemotherapy is possible through a method called “scalp cooling.”

This option was not presented, or even mentioned, by any of the doctors or nurses on my team. Most had never heard of it. When I asked about scalp cooling, my oncologist discouraged me from moving forward with it, saying it was “too painful” and it “would not work.” He said the only patient he knew who had tried it was a model, so she must have really needed her hair. The insinuation that a woman going through cancer treatment who wants to keep her hair is doing so simply for vanity only gave me more encouragement to prove my doctor wrong. I had already lost my breasts. I was preparing to possibly lose my fertility. I was grieving these losses while also learning how to surrender to the growing list of changes that were out of my control. Why would I not at least try to retain my sense of self at a time when there was very little?

Scalp cooling, also commonly known as cold cap therapy, prevents hair loss during chemotherapy by cooling the hair follicles during infusions using cooled headpieces. I had four caps that were chilled to approximately 35 degrees below zero using dry ice. For each infusion I spent 10 hours wearing these cold caps. I started an hour before my infusion start time, wore a cap through my entire infusion, and kept wearing for 4 hours after my infusion concluded. During this time, I had to change the cap every 25 minutes for a colder one from the cooler to keep my follicles at the correct freezing temperature. Imagine a full day of the worst brain freeze you’ve ever had without the satisfaction of the ice cream.

The process was a lot of work, particularly for my family, who helped me unfailingly during each infusion. I would arrive each treatment looking like I was wearing a giant blueberry on my head. Meanwhile, my family arrived ready for our chemotherapy tailgate pulling a large cooler of dry ice and snacks to keep us going. I quickly, and proudly, became known as the “cold cap girl,” as I was the only patient using them in my treatment center.

Each family member had a vital role. My husband monitored the temperature of the caps and kept them rotating in the dry ice. My mom and mother-in-law barely had time to sit down before they had to remove a cap from my frozen head and replace it with a colder one, strapping it to me as tightly as I could tolerate. My dad would massage the caps in the cooler as they became harder throughout the day from being on ice, in order for them to be shaped and fitted onto my head correctly. The goal: Don’t let your hair follicles get warm, thus preventing the chemo drugs from roaring their poisonous heads on your delicate strands.

Hair care in between treatments and the 6 months following the conclusion of my chemotherapy regimen was challenging, and often greasy. Per the instructions from the scalp cooling company providing my caps, I was only able to wash my hair twice a week under an extremely delicate water stream, and of course, in very cold water. I could not apply product to my hair, nor could I use a hair tie to disguise my dirty locks. After each cap session, my scalp would flake off from the freezer burn, which I quickly learned to embrace, as trying to remove the flakes put too much stress on my hair.

I knew the therapy was working when, 2 weeks after my first infusion, I began to lose my body hair but the hair on my head stubbornly remained. At the conclusion of my chemotherapy treatment, I lost less than 10 percent of my hair — a barely noticeable amount, even to me. My hair began to grow a month later, and has come back thicker than before.

By keeping my hair, I was able to control my narrative. It was up to me if I wanted to share my story or elaborate on my diagnosis. I was able to do simple things like go to the grocery store and out to dinner without enduring constant stares as the young woman with cancer. I was able to look in the mirror and still see a resemblance of myself. I was even a bridesmaid in my friend’s wedding a few weeks after my first infusion. To be able to stand with my friends and still feel confident and beautiful was a gift I will never forget. Not being affected by something that is the standard physical sign of cancer treatment was extremely empowering.

Although my experience has been extremely positive, there was an unexpected downside of using this therapy, particularly as treatment ended. Scalp cooling allowed me to keep a sense of privacy and normalcy, but it also made it more difficult for people to understand the gravity of my experience. There is a perception that my experience must not have been difficult since I kept my hair. I did not fit the mold of what a sick person looked like, and this resulted in confusion and occasionally insensitive comments. People also forget, especially now, that I am still recovering. The truth is cancer stripped me of myself. I had a year of treatment and surgery including a double mastectomy, chemotherapy, reconstruction, and radiation. Moving forward after these experiences is a different, and often more complex and heartbreaking process. But having hair while I am doing so has been a source of comfort and normalcy in a sea of unknown. Being able to feel some physical resemblance of myself has been instrumental in the process of healing and moving forward.

I am enormously grateful that I was a candidate for scalp cooling therapy. I am currently 8 months out from ringing my final bell signifying the end of active treatment, and there truly is not a day I do not look in the mirror and smile when I see my hair. I’ve learned that hair is not “just hair.” For me, it signifies a girl who advocated for herself, who chose the options right for her regardless of outside opinions, and who refused to relinquish all control during a time of forced surrender. My hair is my crown of victory. I fought back. I won.

Shea Mencel was diagnosed with stage II, hormone receptor-positive breast cancer in June 2018. Now 31 years old, Shea lives in Philadelphia with her husband and dog. She is passionate about raising awareness about options during cancer treatment as well as the impact a cancer diagnosis has on young women.