Every single day since we began this journey in May I send thanks for the scalp-cooling technology that saved my hair, Penguin Cold Caps. I began using the caps on June 15 and had my final treatment of TCHP chemo on September 28. Here are my before and after pics.
I got my first haircut in 5 months a few days ago. As you can see, the only real difference is that my hair GREW during chemo resulting in rather gorgeous ombre color.
No one…and I mean NO ONE believed the caps would work this well. My doctors are simply wonderous of the results. My chemo nurses have never seen it work so well for anyone, ever. Every single person at Austin Cancer Center, from the receptionist to my stern breast surgeon, comments on it every time they see me. There is no better way to put it: We are thrilled!
I can only attribute this amazing defiance of chemo side effects to my equally amazing chemo team. With meticulous care, these ladies strapped frozen hats on my head for upwards of 8-10 hours each treatment, swapping every 30 mins (or even more depending on the temperature which they monitored like hawks). They became experts at getting these on and off with extreme efficiency, making sure my scalp never got the chance to warm, trying to keep me comfortable.
I already posted a few tips that likely contributed to our success but I wanted to add a few more lessons learned now that we’re finished.
- The most unexpected part of using the cold caps is the pain. It was very, very painful. My boyfriend laughed when he heard they called it “cooling” the scalp. Monumental understatement. These things are FREEZING!! The caps must be a prickly -30 degrees Celsius (-22 degrees F). That is significantly colder than the average temp of the Arctic ocean. As soon as you get used to the pain, it is time to replace the cap with a fresh cold one. When they put the first cap on, I could not speak. It literally was all I could do to breathe through the pain. I tried various types of pain relief. Only the most serious opiates seemed to work (and even that only took the edge off). I challenge the toughest person on Earth to a pain tolerance competition and I will win. Cold caps are not for the faint of heart.
- Many people with cancer bring a new friend to each chemo treatment to disperse the assistance among the many loved ones that want to help. You can’t do this with cold caps. My team went to every treatment and became experts at tracking and using them. You don’t pick this up in a few minutes. We practiced the whole night before my first treatment after watching an hour of instructional videos and still had the damn things upside down for half of the first treatment. It is a skill you should task with only a dedicated, reliable few.
- Unquestionably, this is exhausting work for those that help you. My mom got up before the sun each treatment to prepare the caps for transport, breaking up dry ice with a hammer and construction gloves. We lugged 2 100-qt Coleman coolers filled with caps and 80 lbs. of dry ice from my apartment to treatments each time. My mom and friend were on alert for 10 hours on chemo day, checking my temperature and preparing the next cap. They were moving, lifting, and otherwise working their tails off the whole day, 6 times. As if that wasn’t enough work, there is an emotional toll with this job as well. They watched me grit my teeth through the pain I made them inflict on me, a sobering task for any loved one. And they did it graciously and kindly. And, they fucking nailed it. Again, cold caps are not for the faint of heart and that includes those who assist you.
- It was also exhausting for me. Instead of resting peacefully or catching up on Rolling Stones magazine like everyone else in the chemo room, I was frostbitten, poked, yanked, and stressed.
- My hair still thinned considerably. What seemed like huge amounts came out in my hand and comb all the time. I lost my pubic hair and most of my eyebrows. There were tears and considerable anxiety that each round would prove too much for my poor hair follicles and it would all be gone. I had lots of hugs and reassurance from my boyfriend which did ease my fears. I also did a lot of soul-searching. Even though the cold caps worked, I know now deep in my heart that beauty really does lie within. It cannot be taken by cancer. It cannot be damaged by fear. It is not a thing that can be had at all. It is a feeling. It is a choice.
- It is very expensive. The cold caps are rented for nearly $600/month. I needed mine for just under 5 months. I also spent about $120 each treatment on dry ice. All in all, we spent nearly $4K to keep this hair on my head, far more than most wigs cost. Luckily, my Dad funded this experiment and for that, I am forever grateful. (I am going to submit to insurance and I’ll post again with how that goes.)
- It is worth every single minute of effort and every single cent. I was truly terrified to lose my hair and irreconcilably impatient with the thought of regrowing it. I would do it again without a moment’s hesitation. I’m so, so grateful for the help I received and for the peace of mind and privacy it has allowed me during this difficult treatment. I want to tell everyone who gets a cancer diagnosis that this is an option for them.
On that note, I hope you will consider supporting Hair To Stay, a non-profit that offers financial assistance to those who wish to try cold caps. A gift to them is a gift to me.
If you’re considering cold caps, please send me a message. I’m happy to answer any questions about my experience. If you’re in Austin or Omaha, me or a member of my cold cap team of ninjas would love to connect or help out in any way.
Also, please, please share this with everyone you know. Cold capping must be started on the very first chemo treatment which means the decision to do them needs to be made quickly after diagnosis. I barely got it all organized in time and had to have the caps overnighted to me for additional cost. Spare the next girl that drama and expense. Make sure people everywhere know this is an option for them should they ever need it, before they need it.
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