Breast cancer was never on my radar — I didn’t have a family history of the disease, and I was only 38. But last October I felt a small lump in my right breast, like a pencil eraser, as I was getting into the shower. Fortunately, I had an appointment with my ob-gyn already coming up, and I asked her to check it out. She felt the lump too and scheduled a mammogram.
One mammogram, ultrasound, and biopsy later, I found out I indeed had breast cancer. I walked around that Halloween, completely stunned. After seeing a genetic counselor, I discovered I also had the BRCA1 gene, which increases the risk of developing both breast and ovarian cancer. I went from thinking I’d get a lumpectomy to deciding to have a preventative double mastectomy with reconstruction and a hysterectomy.
The tumor was removed successfully last December, yet I still had 12 weeks of chemotherapy treatments to get through. While my doctors went over the plans for my chemo with me, one doctor mentioned the possibility of using a cold cap, or cooling cap, to keep my hair. Basically, if a frozen cap sits on your hair, blood flow to the follicles becomes constricted. The chemo drugs can’t easily penetrate the follicles, and hair is much less likely to fall out.
Knowing that I didn’t want to lose my hair, I did some research, and I decided to use Penguin Cold Caps throughout my chemo. But prepping for treatments, and then sitting through them, was not easy. First, you have to pay for cold caps out of pocket. I paid about $1,500 for the initial set of caps and a dry ice cooler, and then $500 to $1,000 for more caps each month. My husband and I also had to get our own dry ice to freeze the caps with every week, which cost about $50.
We’d drive to an ice cream shop in Brooklyn, where we live, and load up with 50 pounds of ice, cut into slabs, and bring that home. In the morning, before chemo, we’d take the caps out of our freezer and place them in between the slabs of dry ice in the cooler. After wheeling it all into the hospital, my husband would wear heavy-duty gloves and help me put on the frozen caps.
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I’d wear them during the 30 minutes before my chemo started, which could last up to two hours, and then for an hour after treatment ended. Every 10 to 20 minutes, my husband would have to change the cap I had on because it would get too warm in room temperature. The whole time you’re wearing one, you can’t really move or speak, and you’re absolutely freezing. It feels like constant brain freeze.
But I knew I had to get through it—mostly for my kids. That’s because when I was growing up, my dad had testicular cancer, and he went through aggressive chemotherapy treatments. I remember how people looked at him when we went out—his skin was green, his hair patchy. To make it easier, we joked that he looked like Beetlejuice. But it was traumatic to see him sick like that. He looked like an entirely different person.
I didn’t want my children, who were 4 and 9 years old at the time, to experience that. I wanted things to feel the same as they always did, and I didn’t want my diagnosis to have more of an impact on their lives than it needed to.
I was lucky: throughout my chemo, I kept my hair. I couldn’t wash it more than once a week, or brush it, or get highlights, so I still didn’t feel like I looked exactly like myself. But because I had hair, strangers had no idea I was sick. It felt better to not have people looking at me with pity. I wanted to feel upbeat and positive, because it’s already hard enough to deal with cancer, let alone the visual aspects of it.
Now that I’m on the other side, I appreciate my hair more than ever. (The tumor is gone, but I won’t be officially declared cancer-free until I hit the five-year mark.) When my eyebrows came back in, I really wanted to show them off. When I could start styling my hair again, I got blowouts. I was proud of the little hairs on my arms that began to sprout all over.
I’m glad I used the cold caps, but I try to be honest with people about how extremely painful it is. For me, it was worth it. My kids treated me like they always do, teasing me, and I felt like I was still myself during the whole treatment. Dealing with so many other challenges, like surgery and losing both breasts, it felt good to still have something that was mine. My hair made me feel like I was the same person that I was before I was diagnosed, and that’s a powerful feeling.