I started Cooler Heads because I remember that cold ripple of fear down my back when I was told I had cancer. I was 42 and there was no history of breast cancer in my family. It was October 2016, and as the rest of the world obsessed over the presidential election, I got ready to face cancer treatment.
I had no idea what I was in for. I had no idea what I would need to do to get through it. And I didn’t know where to turn for answers.
I have been lucky–if you can say that about a diagnosis of stage 2b breast cancer. I underwent 8 cycles of chemo (4 of A/C and 4 of Taxol), had a lumpectomy and lymph node dissection, had 6 weeks of radiation, and wrapped up treatment with 8 cycles of Xeloda to make sure the cancer was indeed gone. I found out from nurses that Claritin would help with the bone pain from Neulasta. I realized that if I set a timer for every 8 hours on the dot to remind me to take my Zofran, I could more or less cope with the nausea, even if it meant waking up at 3 in the morning to take a pill. I discovered that arnica really does amazing things to heal surgical incisions and bruising. I learned that Effexor could help alleviate the hot flashes that started with a vengeance about 6 weeks into treatment.
I also had the incredible good luck to find out, before I started chemo, that I could keep my hair.
Sitting down with the nurse navigator after my first round of oncology appointments, I was numb. My friend Sara had taken two days off work to go with me to the medical oncology, radiation oncology, and surgical appointments that were my introduction to cancer treatment. Not only is Sara super smart, but as a former Assistant US Attorney, she knows how to ask the right questions. Since my diagnosis, I had been afraid of going down the rabbit hole of Googling cancer side effects. But Sara had read up about cold caps the night before, and now she asked the nurse navigator if they really worked.
The nurse navigator said brightly, “Oh yes, we’ve had several patients use them with great results. They are expensive, though–most people have to spend about $6,000.”
At the time, all I heard was that there was a way I could go through this terrifying and overwhelming experience and still look like me. I didn’t want the world to know I was sick. I was scared enough of what lay ahead. It would be too much stress to look in the mirror every morning and see myself changed.
I had two weeks to prepare for chemo. When I was diagnosed, a network had materialized of other women who had faced down the same disease, and I talked to some who had used cold caps. I learned that they have to be worn before, during, and for a few hours after each treatment. I got crucial advice about caring for my hair during the ordeal, taking Vicodin to help with the first shock of cold, and taking biotin. Everyone I spoke to as I was deciding to take this step was glad they had done it. They felt a mix of relief, confidence, and gratitude that they had the option.
I jumped in with both feet, taking on the hurdles of chasing down the local rep and getting connected with a professional cold cap coach. (I couldn’t ask anyone in my life to set aside 8 days to do the physically demanding work of being my cold cap coach.) On my first day of chemo, I met the coach, who was patiently waiting with the caps and 70 pounds of dry ice ready to go.
I got used to the rhythm of cold caps quickly. Yes, they are uncomfortable, but it’s not like chemo is much fun either. I only ever used them with Vicodin, so I didn’t find the experience of having my scalp cooled that bad. At home, washing my hair in lukewarm water wasn’t that bad either. My hair was long and curly, and before I got sick, I’d often used hot rollers in an attempt to make it behave. During chemo I just wore it in all its curly glory–what I came to affectionately think of as “Renaissance fair hair”–since I didn’t want to do anything to stress it or make it fall out.
I had learned to manage the side effects of chemo and had continued to work. Having things be normal was incredibly important to me. I hadn’t bought a wig and was not prepared to go through the trauma of shaving my head or watching my hair fall out in clumps.
And then my cold cap coach went on vacation and her substitute quit the day before I had my third chemo infusion.
Since I had been using a cold cap coach, I didn’t have the requisite caps and coolers even if I could press-gang a friend into stepping up. I was out in the cold–pun intended.
Luckily I was in a position to swear a blue streak at the rep and explain to him in no uncertain terms that I would pay double and put a coach up in a hotel and that it was his job to find me one.
I learned later that this same company rep told another person who was going to be coachless not to worry because “it’s just your hair,” even though, like me, she was several chemo sessions in. So after the time, discomfort, and money spent, she lost her hair anyway.
This brings me back to why I am sharing my story and why I founded Cooler Heads. Cancer is a terrifying diagnosis, and the treatment is only slightly less scary than the disease itself. I spent over $8,000 to keep my hair. I don’t regret it, but I find it a little sickening that the options for this treatment must be presented along with suggestions of resources to help cancer patients pay for it. I have talked to so many people about cold caps, and it’s heartbreaking when someone tells me they just can’t afford it.
It’s time to reinvent cold caps. They should be easy for a patient to use on their own, and they should be affordable. It’s already an overwhelming financial burden to be sick. Why should a patient have to face another huge financial burden just to preserve their physical appearance during treatment?
I am on a mission to revolutionize and evangelize cold cap therapy. I want all solid-tumor patients to have the choice to look in the mirror and see a person they recognize.
Cancer treatment is hard enough. Those that face the daunting gauntlet of treatment have to give up so much of themselves to face treatment. They shouldn’t have to give up their identity too.