Friends, family and generous contributors,
I was diagnosed with breast cancer in November of 2017. I was told that with the type of cancer that I have, I would require chemotherapy. My first thought was "I'm going to lose my hair". I don't entirely say that out of vanity as my mother was diagnosed, and eventually died, from lung cancer in 1986. My brother and I were almost the same ages as my children are now so I remember what that experience was like from a child's eyes. I didn't fully understand my mother's diagnosis nor the details of her treatment and prognosis but what I did understand was the absolute trauma of seeing her without hair. I can't explain it. It was devastating.
When I got my own cancer diagnosis, I knew I wasn't ready to share it with the world. I was a professional in the workplace and my husband is a syndicated radio personality, which can make it tough to maintain privacy- especially with a bald head! I needed time. Time to let it sink in. Time to pull my family together and figure out a plan- not just a medical plan but a new dynamic in our home. We had so many questions and fears about the enormous amount of change that would come and how to navigate it. I am a wife (to an amazing man), a professional, a mom and stepmother (to 4 amazing kids), a daughter, a friend, a counselor, a sister, an aunt... how would my role change in all of these relationships?
Ultimately, I am a feminist and exclusively strive to empower women in my private practice as a behavioral health doctor. I felt guilty for not possessing that same courage and empowerment of losing my hair and owning it. I hated that I couldn't be "bald and proud" and reach out to other women to help them navigate their own journeys in those early days. It wasn't who I thought I would be when I imagined myself with a breast cancer diagnosis. I knew I could be strong and fight this for myself and my family but I didn't see why I couldn't do that and still maintain my privacy. Pity has never been my cup of tea.
My oncologist told me about cold capping and how it could help me keep my hair throughout my chemo regimen. Cold capping is used in Europe and is even covered by insurance there! It's been around for over 20 years yet hardly anyone knows about it- AND, it's been FDA cleared! Best of all, it gives women the gift of TIME
. Sweet time. Time to tell the world that she has breast cancer on her terms. Time to enjoy with family and friends in public and not feel insecure. Time to continue her life in such a manner that SHE chooses. Cancer is ugly and cruel and a bully and this small, yellow cap was one giant step in taking back a small sliver of power. The diagnosis of breast cancer comes swift and out of nowhere and within days, your medical team is asking you to make decisions about your cancer plan that will begin immediately. Time is a priceless commodity for which you cannot afford.
I did some more research and found out that cold capping changes the cancer game, but it's also not cheap. The price for cold capping ranges from about $500 to $4,000 depending on how many treatments you need and the duration of time it takes. Manual cold capping is very labor intensive and requires that the woman lug 100 pounds of dry ice, 8-10 frozen caps, a heat thermometer, a cooler and many other needed accessories to each infusion appointment. She must then switch out the cold cap every 30 minutes in order to keep her scalp at the perfect 32 degrees needed to properly send hair follicles into a hibernated state. It requires a helper and an entire day dedicated to cold capping. It must stay on an hour or so before the infusion begins and stay on for hours after the infusion ends. Average cold capping time is about six hours per infusion. I was lucky enough to live in a big city that has one of only TWO cold capping machines in the state. The Dignitana company provides a machine that continually recirculates ice cold liquid throughout the cold cap for the duration of the session. I had 12 treatments which lasted about 5 hours (an infusion without cold capping is 1 hour). It's not the best thing I've ever experienced but definitely not the worst. I was able to keep about 70% of my hair which allowed me to continue my life as "normal" to the outside world. I was lucky enough to have options, choices and the gift of time. Ultimately, my prognosis is good and I am predicted to make a full recovery after a scheduled surgery this summer. Please understand that I have no business connection to any cold capping company whatsoever beyond my personal experience.
Currently, insurance companies do not cover cold capping as they do not see it as a necessary step in fighting cancer (don't get me started); however, as women, we know it can mean everything. A recent FDA study showed that for 70% of women diagnosed with breast cancer and going through chemotherapy, losing their hair was their biggest concern. It's insult to injury really- I have to lose my breasts AND my hair? I became very upset and frustrated for those women who don't have the resources to afford cold capping. Its just more proof that the world is a gentler place for those with money. I am currently fighting the insurance industry in an attempt to get cold capping covered but until then, it is out of reach for most women. I will use the money donated on this page to set up a fund that will subsidize or completely cover, as many cold capping sessions as possible. Once they apply, qualified applicants will receive money directly from the fund for their treatments. Each applicant will be reviewed by a board of directors that include; an oncology doctor, an oncology nurse, a financial advisor and myself, serving as the chairman.
I want to leave this chapter better than it was when I got here. I am willing to keep one foot in this part of my difficult journey as long as it can provide others with the gift of time and dignity. Mahatma Gandhi once said "Be the change you wish to see in the world". I'm asking for your support to help me do that. Thank you from the bottom of my heart.
Peace and light,