First-Hand Account of Cold Capping During Cancer Treatment
Kate Williams was 37 years old and her kids were ages eight, five, and nine weeks old when she was diagnosed with Triple Negative Breast Cancer in 2019 while on a family vacation in Disney World during her postpartum season following the birth of her third child, Penny Lane. Her active treatment and surgery continued into the beginning of a global pandemic, which greatly altered her cold-capping experience. Kate shares this and a follow up post to share her real-time, raw, honest experiences with those who are currently in the trenches of active cancer treatment.
This was written in 2020 while Kate was actively in the trenches of breast cancer treatment. Read part two here.
Meet Kate
I am what you would easily describe as a “type A” personality. My type A-ness is deeply entrenched, occasionally spins off a stream of anxiety, but I have developed coping mechanisms for being a planner in a world of chaos. As long as I can plan, I can usually cope.
The problem is, I did not plan for cancer. Obviously. No one does.
This was especially because I spent a lifetime avoiding increased cancer risks after experiencing the tragic illness, and loss, of my sweet cousin, Marty, to a glioblastoma (brain cancer). I have been so paranoid about skin cancer and my sins from my short lived tanning bed days of trying to look like Britney Spears in the early 2000’s, that I have received full-body skin checks scans since my late twenties. I’ve eaten raw vegetables, sworn off BPA, stopped microwaving plastic, slathered on the SPF 50, and got cancer anyway. Isn’t that a pain in the ass.
After the gut punch, and unsettling shock of discovering cancer managed to invade my carefully-guarded body despite my efforts, I found my footing again in the planning for treatment: planning for chemotherapy.
Ugh. I’m two chemo sessions in and I still can’t believe I have to do this shit.
Chemotherapy’s side effects are absolutely fucking terrifying. Everyone knows the classic unpleasant bodily responses like vomiting, fatigue, mouth sores, and hair loss. But, there are many more I did not know of, and quite frankly am still trying to forget. The potential side effects of chemotherapy are so bad that the oncologist has to read the consent form out loud to you so that the hospital (and their liability insurance carrier) can absolutely say that you were aware of the horrid side effects of chemotherapy when you chose to be treated anyway.
As if any of this was a choice.
Focusing on the bad side effects is way too scary to wrap my feeble lawyer brain around, so I’m focusing on the cosmetic. This, after all, is my forte: applying on makeup, slugging back a pot of coffee, and disguising my lawyer-mom fatigue is something I have finessed for the past decade. I can say, with confidence, I am more prepared to face chemo due to my many years of experience in pregnancy and working mother related fatigue.
Still, the idea of waking up each day and groggily heading downstairs for my morning coffee with a bald head and no eyebrows is repugnant to me. I can’t get my mind around the idea of no hair. If I had to pick one physical attribute that I actually like about myself, it would always be my hair!
The phrase “it’s just hair, it will grow back” is tossed around a little too lightly for my taste. Actually, it’s downright offensive. It is absolutely not just hair. It’s looking in the mirror and seeing myself, and not a sick person, day in and day out. It’s my ability to run my business without divulging my painful personal medical information with my clients. It’s my self esteem, which took decades after my teenage years to rebuild. Just when I am feeling confident in myself as an adult I have to go bald? Nope. Not doing it.
I applaud the women (and men)who can rock a bald head confidently. I wish I had the kind of confidence to walk into a room and give absolutely zero fucks that everyone was staring at my baldness. Alas, I am not wired that way. I care. I don't want to be bald and I don’t want people to stare at me because I look sick.
According to the National Center of Biotechnology Information, “forty-seven percent of female patients consider hair loss to be the most traumatic aspect of chemotherapy and 8 percent would decline chemotherapy due to fears of hair loss.”
Declining cancer treatment due to hair loss? That is some SERIOUS trauma!
Also, I don’t want my kids to be frightened. If they can’t see the physical manifestation of cancer (treatment) on me, maybe they can push it aside and forget about it. Maybe I can forget about it? Maybe when we look back at Penny’s baby photos we can just enjoy reminiscing instead of seeing my ugly, bald head.
I am not lucky enough to live in a time when chemotherapy is not the first line of cancer treatment. This day will come, sometime hopefully soon, and I will be overjoyed for all of the future patients who will face this disease without this brutal scorched earth treatment. But for now, I am lucky to live in a time when there are products to ameliorate the effects of chemo induced hair loss.
I first heard of cold capping on a tv show called “A Million Little Things” where a character undergoes breast cancer treatment and her boyfriend suggests it to lift her spirits. I can’t say how that show turned out because continuing to watch was too emotionally painful, but at least it planted the seed.
After I was diagnosed with triple negative breast cancer I learned about cold capping from The Rapunzel Project, which is a non-profit organization dedicated to helping chemotherapy patients keep their hair during treatment.
How Cold Capping Works
Cold capping works by constricting the blood flow to hair follicles and putting hair follicles “to sleep” by temporarily limiting their metabolic activity. In order to achieve this, the caps must be worn for a period of time before, during, and after chemotherapy is administered.
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 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. Unfortunately, the professional systems are much harder to find in the States, and due to the type of chemo drugs I am getting (AC chemo - aka “the red devil,” which is the hardest on hair follicles) the success rate is not nearly as high.
After a little bit of research I went with Penguin cold caps, which is a manual system of cold capping that uses dry ice to keep the caps cold enough. It’s a pricey endeavor, which health insurance is likely to deny (even though they cover wigs), but a cost I am willing to bear to keep my hair.
During Treatment
I can’t cold cap alone. In fact, I am hardly even an active participant in the cold capping process, but for providing the chemotherapy laden body and scalp. The loves of my life are the people who are out here saving the hairs on my head and making sure I have warm blankets and socks while my head freezes.
A chemo day with cold capping is very long and very intense. It starts early in the morning when my dad leaves to pick up 55 lbs. of dry ice. He brings it back to a large cooler (that we will totally use for tailgating someday) that my husband, Terry, has waiting in our garage. Fortunately (?) we live in Cleveland, Ohio and I am going through all of this in the dead of winter so the garage is plenty cold. I head off to oncology to get weighed and make sure I am healthy enough to receive chemo again. Terry packs the caps in the cooler between the layers of dry ice and heads over to the infusion center. During the drive the car windows cannot be closed all the way due to the gasses from the dry ice. Once there, he meets up with several friends and family members who are well caffeinated and ready to freeze my head.
My first cap goes on at least one hour before the chemo drip starts. Usually we are there early enough to freeze my head earlier than that - just in case. Terry pulls it out and uses a laser thermometer to make sure that caps are -29 to -32 degrees Celsius. If they’re too cold he sits on them and warms them like a chicken egg. Then it’s time to put it on.
The cold is like the most intense brain freeze you could imagine. The first few times it’s so cold that I get dizzy and nauseated. My head feels enormously heavy and obviously cold AF. Usually my anxiety is bubbling like a boiling pot forgotten on the stove, and I’m so tense that my veins are clamped up and I don’t physically notice the cold in the rest of my body. The nurse comes in to start my “pre meds” and access my port. When the Ativan hits, my body suddenly becomes aware of how insanely cold it has become. My teeth begin to chatter and I begin to shiver.
Usually some time in between the nurse walking in and the first of the pre meds it’s time to change the cap. The first two go on for 20 minutes each (to ice up those hair follicles) and the next ten hours worth of caps go on for 25 minutes each. The caps have to be rotated by “my people” to ensure they all stay perfectly cold within the cooler and there are multiple parts and straps to each one.
While I shiver in icicle town, my husband, Terry, is working up a sweat like it’s a humid mid-July day meticulously following the capping instructions.
Premeds are an hour. Chemo is two hours (for now, but when I switch to the weekly drug it will be one hour but every week instead of every other - boo, hiss.) We time it so we put a fresh cap on right before we get in the car to go home where we continue to cap for FIVE more hours. It is an exhausting day. I nap on and off, my body exhausted from the harsh drugs and my head bobbing, but Terry wakes me to change the cap.
For the love of hair.
Now I’m at day 21 past my first chemo so I am at just at the end of the first BIG round of hair loss. I would be mostly bald by now, or at least losing my hair so rapidly that I would throw in the towel and shave my head. And I don’t want you to get the wrong idea. I am definitely losing hair. It’s traumatic AF to pull clumps of hair from your head. TRAUMATIC AF. I haven’t cried about it yet but I’m sure it’s about to pop up at an inconvenient time soon. (I have, incidentally, disclosed my diagnosis with malice and aforethought on an unsuspecting muggle who subsequently melted from my cancer-shaming.)
But, I still have hair. You can see my balding sides in the photo below. It’s not pretty but I consider it a victory for now.
Chemo takes ALL the hair. Notice that there is no section on how to keep up your Brazilian wax during chemotherapy. I didn’t want to have a naked face so I committed early on to microblading my eyebrows. I asked Ali to find me some eyebrow options, knowing that she would be as perfectly anal retentive about it as I would be, and she delivered big time. It was a pain to get scheduled during the holidays (pro tip: don’t get cancer over the holidays) but a few days into the new year I got my eyebrows microbladed. Alas, I always felt like my first tattoo would be celebrated with tequila and marijuana, and not with coffee and oncology.
Let’s take a moment, however, to drink in the irony that I now need to have eyebrow hairs tattooed on my face. In high school I was teased for my giant, bushy, unibrow. I have spent my entire adult life obsessing about removing my eyebrow hairs. In my non-cancer life I got that unibrow waxed every three weeks and tweezed in between.
Sip it in. The delicious irony.
Finally, I am working on finding a way to hang on to some eyelashes. I found this stuff through social media made specifically for cancer patients. I also asked my oncologist to write me a prescription for Latisse. So if you see me and I’m still wearing mascara, I’m winning.
Just in case, I bought some magnetic eyelashes. So if you see me and I’m clearly wearing my falsies, just pretend they look real.
I can’t control the cancer, I can’t control the chemo, but I can control keeping a shred of dignity through all of this.
Working with Insurance
Evidently in European countries it is quite common and the cost is a part of treatment. Unfortunately, nothing is ever as simple in the United States as it is in Europe when it comes to healthcare.
Good News
H.R.7322 - Access to Scalp Cooling Therapy Act of 2022 shows that on the congressional level conversations are happening to ensure cooling therapy is broadly available to cancer patients. Unfortunately, this did not leave the committee.
Dignitana Announces Decision by Medicare to Reassign Payment for Scalp Cooling
