Thoughts on Cold Cap Therapy From Someone Who did it
I kept a blog throughout my time in cancer treatment and in preparing to write this piece as a helpful tool for others, I revisited those writings. I am a few years past that time now, and I do not really think of it very much these days. However, when I read my thoughts from that time, my emotions came rushing back and overtook me in a way I did not expect.
I write this to acknowledge how difficult and jarring a cancer diagnosis is. The fact that a handful of years have passed and my hair has grown back has allowed me to slip back into the world of “healthy” people. If you do not know me personally, you might never realize how deeply depressed and anxious I was when I was going through cancer treatment.
I hide it pretty well. Even from myself.
It was excruciatingly difficult for me. So if this is how you feel, please know that it is completely normal. You are carrying a very large burden. It’s okay to feel that weight.
To cap or not to cap:
When I was diagnosed with breast cancer I was 37 years old. My kids were eight years, five years, and nine weeks old. I was primarily worried about leaving my kids with no mother, of course, but cancer treatment was supposed to take care of that. The problem with the cancer treatment I was prescribed was that it included chemotherapy that would most certainly leave me completely bald.
It is intensely traumatic to be diagnosed with cancer. At a time when a person is still grappling with the fallout of their own feelings with joining the “cancer club” suddenly you are thrust into being out-ed in the public domain as a cancer patient simply by their complete and fresh baldness. he idea of transforming into a person that looks outwardly as the sickest of the sick is beyond comprehension for some.
For me, I did not want to be bald because I did not want my kids to ever see or, god forbid, have their final memory of me as looking sick and bald. I also ran my own business all throughout cancer treatment. I am an estate planning attorney, and I did not want my clients to be scared that I was going to die and leave them attorney-less. Looking like a cancer patient would have been disastrous for business. All of this led me to Cold capping.
Cold capping has been available in Europe for a while now and has slowly gained traction in the United States. Cold capping is time consuming, often expensive, and can be rather uncomfortable; many oncologists and medical staff tend to strongly discourage the use of cold caps. Why? Mainly out of indifference. The medical community is consumed with keeping a cancer patient alive. Unfortunately, physicians and medical staff are largely unphased by the long term side effects of the scorched earth treatments they prescribe and administer. After the initial phase of “curative treatment” is complete the medical profession has little contact with the broken individuals who are left to pick up the pieces of their shattered lives.
My oncologist had been a skeptic of cold capping at one time. She warned me that the type of chemotherapy I would have was so harsh that I probably would not have success. However, she had seen women keep quite a bit of hair so she was supportive. She also told me that it was “just hair” and that it would “grow back,” which had become a loathsome phrase I found dismissive and rude.
I cold capped through red devil chemo and kept a fair amount of hair. So if your physician and medical staff are naysayers feel free to get a second opinion.
How Cold Capping works:
Cold capping or “scalp cooling” (it should be called scalp freezing) works by constricting the blood flow to the hair follicles while the chemotherapy is coursing through the blood in the body. Even though most chemotherapy does not cross the blood-brain barrier, the chemotherapy reaches the scalp through the blood that runs to the skin and hair follicles.
In order to put the follicles to sleep, the ice cold caps must be worn for a period of time before, during, and after chemotherapy is administered. The amount of time depends on the harshness of the chemotherapy.
Manual v. Professional
There are two types of cold capping systems, professional cooling systems that are installed in chemotherapy infusion centers, and manual caps. The benefit of using a professional cooling system is that there is very little leg work. You just show up and put on a scalp-cooling cap when you receive chemotherapy. The manual system is much more labor intensive. Due to the global pandemic interrupting my chemotherapy regimen, I experienced both.
With manual caps, a company ships them to you then the rest of the job is yours. You are responsible for getting them cold, which requires dry ice and a cooler. You are responsible for getting them to be the right temperature, which requires a digital thermometer. You are responsible for getting them to the infusion center. You are responsible for figuring out when they need to go on and for how long. Then, since your body warms each one over time, you are responsible for the ongoing cooling during the hours that you wear them, which means you have to change the caps every 25 minutes.
My chemotherapy infusion center, as with many in America, did not have a professional cooling system so I had to use manual caps. In retrospect, I would avoid this option. It was cumbersome and stressful at a time when I was stressed out with every other aspect of my life including my cancer prognosis, my newborn baby, and running my business.
After many frightful hours of online research I selected Penguin caps. At the time that I was facing this impossible choice, Penguin was the most reputable manual system. I personally found the customer service to be unhelpful and pushy. I also lost a fair amount of hair in the area that matters the most (the top of my head) due to some user error. (Now that my hair has grown back, I can say I forgive my husband, but it was a source of frustration for quite a while.)
Manual cold caps almost certainly require help from other friends and family. The staff of the infusion centers have other tasks to do and while a nurse may be able to help get a person in a professional system that they can step away from for several hours, manual caps require constant attention.
When I learned that I could no longer have friends and family accompany me to infusions due to the pandemic, I was stressed. Without someone to assist me, I worried about whether I would keep my hair and maintain the integrity of all of the hours we had already spent freezing my scalp and attempting to save my hair. Fortunately, I was able to find a professional cold capping system at a hospital within the same system as mine.
A representative from Penguin tried to coerce me into continuing to use the Penguin caps by myself, but I could not see how that would have been feasible. I switched to the Paxman system, and I was pleasantly surprised at how much easier and how much less time consuming it was.
Writing it off!
These things are expensive. Many people are put off by the cost of cold capping alone. It is worth perusing the websites of the companies that supply the cold caps to see if they can assist in getting your insurance company to cover the cost of this aspect of cancer.
Paxman, for example, has a downloadable letter on their website you can use as a template for requesting insurance to cover the cost.
If your insurance still refuses to cover the cost, consider writing it off on your taxes. Certainly talk to an accountant about this, but the IRS has published some guidance. In my opinion, if false teeth are covered, why would hair saving methods be any different?
A health savings account, or “HSA” may be another route to funding the cost of capping. Mine was maxed out from childbirth and garden-variety cancer related expenses, but many folks have quite a bit of savings built up in these.
The trend, thankfully, is moving toward more coverage and acceptance for capping generally. It has not even been four years since my cancer diagnosis, and there is already so much more information, access, and acceptance for cancer patients who want to keep their hair.
The Gift of Perspective and Time
I completed chemotherapy on May 15, 2020. I am sure, if you are reading this, you can understand how significant that date is to me, as yours will become to you. I had surgery in June, then in early July 2020 I was able to get hair extensions to the hair that I hung onto through cold capping. I was able to slip back into the world of healthy looking people (once my eyelashes grew in) and although I complained about my hair until it grew entirely back, looking normal made me feel better about what I had been through.
Folks ask me often if I would cap again: absolutely, yes, I would. I would unquestionably try to find a Paxman machine and just schedule chemotherapy wherever I could find one of those machines if I were faced with the same choices again. With the Paxman machine I was able to relax and take a nap during my infusions. With the manual caps my friends and family had to keep waking me up and putting a fresh cap on my head. It was painful every time. I also think the Paxman machine leaves less room for error since you don’t have to change the caps so often.
I also experience what I can only assume is damage from frostbite on my head. The very first time that I capped with the manual caps my scalp peeled, like a sunburn but from the cold. In those areas of my head I have experienced excessive itchiness ever since. Sometimes at night, my dog and I scratch our heads like a couple of flea-ridden critters while we watch TV. My hair has grown back on those parts of my head but it has itched for the last three years, and I guess it will itch forever.
As long as the hair is back, I can sit and itch with my dog until I’m ninety five years old and that is okay with me. I know very well what an insane privilege it is to live and experience life into old age.
It’s About More Than Hair
A lot of folks say fretting about your hair at a time when you are facing a potential death sentence is vain. A little bit, yes. But that sentiment is overly dismissive. It’s more about control.
With cancer, you lose control of so many aspects of your life. You lose your freedom, your time, your hopes and dreams are all hanging in the balance and suddenly you are not even sure if you can see your kids go to kindergarten or graduate high school.
It’s about control. It’s about privacy. It’s about options. It’s about dignity.
For more information on cold capping:
Breastcancer.org has a nice dedicated section to cold capping
The Rapunzel Project is an excellent resource and is where I learned the most information about cold capping.
