This is my story.
I started Cooler Heads because I know what it is like to have the 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 coming presidential election, I got ready to face cancer treatment.
I had no idea what I was in for. And I had no idea what I would need to do to get through it. I didn’t know where to go to get answers.
I have been lucky – if that’s what you call the 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 is indeed gone. I found out from nurses that if I took Claritin it would help with the bone pain from Neulasta. I realized that if I set a timer on your phone 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 alleviate bruising. I learned that Effexor can help alleviate the hot flashes that started with a vengeance after about 6 weeks of treatment.
I also had the incredible good luck to find out I could keep my hair before I started chemo.
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. Sara is not only super smart, but as a former US Attorney, she knows how to ask really detailed questions, Sara muy nurse navigator if cold caps really worked. She had read about them the night before but wasn’t sure it was legitimate. Since my diagnosis I had been almost numb and was afraid of going down the rabbit hole that Googling cancer side effects could be.
The nurse navigator said brightly, “Oh yes, we have had several patients use them with great results. They are expensive though and most people have to spend about $6,000.”
At the time, the only thing I heard was that 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 was ahead of me. It would be too much stress for me to wake up in the mirror every morning and see myself changed.
I had two weeks to get ready to start chemo. Through the network that appears when I was diagnosed with cancer of other women who had faced down the same disease, I talked to others who had done cold caps. I learned that they have to be worn before, during, and for a few hours following each treatment. The advice I got about how to care for my hair, taking Vicodin to help with the first shock of cold, and taking biotin was instrumental for me to prepare myself for the ordeal of doing cold caps. Everyone I spoke to as I was deciding to take this step was glad they had done. The feelings were a mix of relief, confidence, and gratitude that they had the option.
I jumped in with both feet and dealt with the hurdles of chasing down the local rep and getting connected with a cold cap coach. I didn’t have someone that I could ask to take 8 days off work to do the physically demanding work of being the 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 that 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 was a frequent user of hot rollers in an attempt to make it behave. During chemo I just wore it as I came to affectionately think of it as “renaissance fair hair” in all its curly glory since I didn’t want to do anything that would stress it or make it fall out.
I had been prepared for the physical aspects of cold cap treatment. What I had not been prepared for was the complications that can arise when you need a cold cap coach and all of a sudden, one isn’t available. The wonderful woman who was with me for most of my chemo treatments had a planned vacation during the month of December. The day before I was supposed to have chemo I got a phone call from the company rep who booked my coaches. He was sorry to inform me that the substitute coach, who I had confirmed my appointment with, had decided to quit. In less than 24 hours I was facing my third chemo infusion, and being well past 21 days into chemo, I knew I missed the next one, all my hair would fall out. I live in San Diego and this one substitute coach was my only option. There wasn’t anyone else.
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. Since I had gone through a cold cap coach, I didn’t even have the requisite caps and coolers if I could press gang a friend into doing the caps for me. In this instance, I was left out in the figurative cold – pun intended.
I was lucky 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 the cost and put a coach up in a hotel and 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 think it is a little sickening that the options for this treatment come with recommendations for 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 a significant financial burden of keeping 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 at themselves in the mirror and see a person they recognize.
Through this blog, I am aiming to share with you my story about treatment and the things I learned along the way. That is what drives me everyday.
I think back to all those people who answered my phone calls when I was first diagnosed. The generosity of those people is something that still touches me. I share my story with you in that spirit.