Let’s Talk Hair: My Experience With Cold Capping So Far

“Every. Hair. On. Your. Body.”

Yup, you hear those words when meet with oncologists and ask questions about your treatment plan such as, “Will I lose my hair?”

That’s a tough pill to swallow when you’re already grieving your diagnosis and trying to process tons of raw emotions. That’s a tough pill to swallow when you’re already taking enough pills. This may seem shallow to be asking at a time when you are confronted with a life-altering disease, but it’s a major question many people ask because of course your hair is part of your identity, the part that everyone sees.

I’ve been told that breast cancer is one of the toughest cancers because makes you question your femininity. It takes away so many things (some permanently and some not) that make you feel like a woman. This includes your hair, eyelashes, eyebrows, periods, egg reserves, and yes - even your breasts.

One week after diagnosis I had a pre-planned trip with my mother and sister-in-law to Door County, Wisconsin. Let’s just say that I was still in shock this whole trip but it was a good distraction to be somewhere new. We spent time in nature, checking out local farmer’s markets, and also doing a lot of shopping. At one of the stores I found new cute rubber hair binders and I needed a restock, I picked them up, and then it dawned on me. I said to my sister-in-law as tears filled in my eyes “I just don’t know if I’m going to have hair in the next few years.” I immediately threw the hair binders down and walked away.

Who knew something so simple such as a hair binder could be so triggering?

Well it was, because it represented some major changes as to what lies ahead in the unknown journey I found myself in. When I found myself in this situation filled with so many things I could not control, I looked into something called cold capping. It’s a process in which you place a freezing cold cap on your head before, during, and after treatment in hopes of preserving most or some of the hair on your head. After much deciphering I settled on giving it a go!

Now, everyone that experiences cancer has different thoughts on saving their hair. Some couldn’t be bothered and like having less to worry about during treatment. Others, like myself, are heartbroken thinking of potentially looking at the mirror and seeing someone I don’t recognize. Having to experience massive clumps of hair falling out right before my eyes. Having to experience the looks from others in the small community I live in because they can tell at a glance I am sick.

I remember in high school one of my friends mentioning to me that she thought that she had cancer because she was losing lots of hair in the shower (which it’s totally normal to shed around 100 hairs a day). I told her that she was funny because cancer isn’t what causes people to lose hair, it’s the drugs that fight the cancer. The drugs literally aren’t smart enough to decipher hair from tumors. That’s it, just the drugs attacking rapidly growing cells. But it does cause some pretty devastating trauma for those that have a strong connection with their hair.

Many of you know me, the real Bre, know that my hair is not just my hair, it’s part of my personality. I have always been so grateful for thick, wavy hair. I’ve used my hair to show emotion during dance performances and have always enjoyed touching and playing with my hair. So much so that my first Instant Messenger name was hAirTwIrLeR4eVa. Yes, seriously.

So how does cold capping work?

Well straight from the Penguin Cold Cap website - Cold cap therapy involves fitting a specially designed cap, filled with our trademarked Crylon gel to your head to cool the hair follicles. This cools the hair capillaries (blood vessels), reducing the metabolic rate of the follicles, so they go into a hibernated state and stop the hair bulbs from absorbing the drugs.

The caveat about cold capping is that it of course is not covered by insurance (which it should be) and of course, results are varied because “everyone is different.” People generally save anywhere between 50-95% of their hair depending on their drug regimen, age, hair type, etc. There are so many variables.

Mayo Clinic Hospital system uses a machine called the Paxman and after learning about the machine they use in-house I decided to go with an outside provider called Penguin Cold Caps. Instead of a machine these caps are placed in dry ice and rotated on your head every 30 minutes. These caps are colder, are placed on your head longer, and therefore have some pretty amazing results.

Since I knew that I wouldn’t have the consistent same person with me for each healing session I went ahead and also hired a cold capper, her name is Judy. She does this for a living, which is so cool! She has capped men and women from ages 12-80 who were going to experience hair loss due to healing treatments for all different types of cancers. Judy has been a godsend and has been such a delight to have with me on the tough days.

Judy drives down to me from the Twin Cities area on my healing session days and manages the full capping process from beginning to end. She purchases dry ice the night before and packs a cooler full of 4 caps and bands that are used to hold it to my head. The process starts in the hospital 50 minutes before I get my first drug and ends at my house 4 hours after my last drug stops running. So, it’s a long one! I usually cap for around 6.5 hours if there are no delays.

So is it cold?

The answer is yes. The cap goes on when it’s about -40 degrees. The first two caps of the day are the coldest and after that, my head is completely numb so it really is quite bearable in my opinion. My thick hair saves the day once again because it truly does help insulate my scalp a little more and doesn’t make me feel like I’m sitting in an ice box. However I do feel like I am sitting in an ice box when I do cryotherapy during my Paclitaxol treatment to prevent neuropathy and mouth sores. For the hour of this drug I am truly in ice from head to toe. I had a friend of a friend (whom I have never met) send me the ice packs and mitts for my hands and feet. She is a 30-year-old who lives in California, has two kids, and went through this same exact journey last year. I call it the sisterhood of the traveling mitts.

Credit: Converse Candid Photography

To date I have had minimal shedding and still have a full head of hair, which has been so amazing for my mental health. Being sick and looking sick are two different things in my opinion and I feel so grateful to be in the financial situation to be able to do try something like this. I had a family photo shoot with Tim and Mochi on October 18th and looking at me you would have no idea what I’ve gone through the last few months. If it weren’t for cold capping I would have cancelled this photoshoot because I wouldn’t have had any hair left. Now, I’m so glad I have these beautiful memories during a time of a lot of pain and sorrow.

To wake up everyday and still recognize the person in the mirror and not feel sad over the loss of one major part of my identity has been HUGE in this healing journey.

Even though some days I don’t feel normal, I look normal and that has positively impacted my mental health. I am starting to see some patching with my eyebrows but I luckily was sent a wonderful gift by another complete stranger (my uncle’s girlfriend’s daughter-in-law’s friend) She sent me a set of tracers for my eyebrows and I have been playing around with the shapes and application so I can be ready when my eyebrows take a hiatus.

A huge thank you to whoever invented these cold caps 20 years ago to ease the mental load during treatment. And to everyone out there who has services and products that make women feel beautiful even when they are going through cancer treatment.

During the second phase of my healing sessions, I will switch drugs and my hair loss may be more significant, or it may not. Because as we know “everyone is different”.

Now you know how important my hair is to me because there is a full blog post dedicated to it.

Until next time,

Breanna