This weekend I got a Facebook reminder of my Cold Cap days. I immediately felt gratitude- for the caps that I had a love/ hate relationship with – and for the friends and family members who supported me with this crazy capping venture.
My work as a School Improvement Specialist has me traveling in and out of many different schools and districts across the state of Florida. I did not want to be seen as “the cancer girl.” I wanted the focus of my visits to be about my work, not my disease. When I finally met my oncologist for the first time and she asked me what I was most afraid of, I didn’t hesitate to tell her that besides being sick from the chemo, the idea that I would lose all my hair was really bothering me. She quietly mentioned “ice caps” that a few patients had been using. She said insurance didn’t cover them and they were labor-intensive, but if hair loss concerned me, I could look into them.
I opted to use a cold cap, made of neoprene (like a wet suit) and lined with the stuff that you put in your lunch box to keep it cold. I used them throughout the duration of my chemo infusions, starting fifty minutes prior to my first alopecia-causing drug (which for me was Taxotere). The cooling constricts the blood vessels that lead to the scalp, making it difficult for the chemo to reach the hair follicles. The Chemo Cold Cap (CCC) Company sent me a cooler with a metal rack in it. Three caps rested on the bottom and three on top of the rack. We would change the caps every twenty minutes for a period of six hours. I had about one week from the time I received the caps and cooler to figure it all out before I started chemo.
The night before my first infusion, my husband went to three different Publix stores to collect a total of seventy pounds of dry ice, enough to fill the cooler and bags that we inserted inside each cap in order to make sure they reached the optimal temperature of negative 34 degrees. When we arrived at the infusion center (Florida Center Specialists), we looked like we were ready for some sort of crazy tailgate party. I packed a huge duffel bag with a fleece jacket, a heating pad, socks, gloves, a blanket, a bag with panty liners to cover my ears, foam that we cut to cover my forehead to prevent frost bite, double sided tape so it would stick, and an infrared thermometer. And course, the Cold Cap!
The nurses told me approximately when the Taxotere drip would start so I could count back fifty minutes to know when to start the first cap. That first day it took forever to get started. We weren’t prepared. Several hours later it was finally time to put the first cap on. That first cap about took my breath away! I could not speak to my husband or anyone else at first. After about five minutes it started to feel better. The first twenty minutes passed quickly and Eric quickly removed and replaced the cap. I basically closed the infusion center down that day and still had about three hours of capping left. We had to rush home to finish and even stopped along the way to change it.
I started recruiting several friends to come and spend one of my five remaining infusions with me to help change my caps. I called them my Capping Goddesses because that’s how they felt to me. These women, friends from near and far, my hair stylist, my acupuncturist, came bearing soup and baked goods to share with other patients and the nurses, who then became part of our crazy tailgate parties. The fact that I needed a few helping hands gave me a reason to make infusions fun. My Capping Goddesses reminded me that I had a reason to fight. It wasn’t about hair – it was about taking control of my care in the middle of something I really had no control over. My hope was also that more women would learn about cold-capping.