It’s crazy that this week is six weeks since chemo finished! And while I’m still in radiation, I can finally see the end of treatment. I have no idea where life will take me after this but I’m excited to start a new chapter, clear of cancer and completed with treatment.
I’m very grateful that I was able to keep most of my hair through all of this. Not typical during most chemo protocols. I should have been bald about a week after my first chemo infusion. Thanks to cold cap therapy, I still have about 70 percent of my hair after four chemo infusions. If you didn’t know me before, with my super thick, fairly straight auburn hair, you might not know that I’ve lost so much. That’s pretty awesome. When I tell people I recently finished chemo, a common comment is “but you have hair.” Because I should not with my chemo drugs.
Many people have asked about cold cap therapy and what it involves. It’s awesome to have hair during and now after chemo. I was able to feel fairly normal in public, even went on some dates (!), without anyone knowing I was going through chemo. But it’s work to fight the effects of chemo and keep your hair. There are strict guidelines to follow that typically continue for a few months post-chemo. It takes several weeks or months after chemo for your hair to stop shedding, mine is finally slowing down but it’s still shedding. I’m kind of over the worry and strict guidelines.
Despite the challenges and hard work, I’m grateful that cold cap therapy is available to cancer patients. At this point in my life, my hair matters. I can be social, meet with work vendors, go on dates, run errands and look in a mirror feeling (mostly) like myself. It’s not about being vain, it’s giving myself choices when cancer tries to take those away. It’s feeling in control of my life.
It’s unfortunately still not a commonly known resource so hopefully we can change that as more ‘cold cappers’ share their experiences. It’s why I’ve chosen to share so much here and on my social media profiles. It’s an amazing benefit to help patients feel normal and in control of telling their story when and if they choose.
Here are a few items that were beneficial during cold cap therapy:
Moleskin – great to line along hairline and tips of ears to prevent frostbite. However, the adhesive caused a rash on my sensitive skin, so we switched to panty liners. Yes, you read right. Cutting these to fit worked great and didn’t bug my skin.
Blanket, slippers, gloves, sweater. Some people get really cold during capping. I thankfully did not, although I covered with a blanket more for comfort and relaxing than anything. Drinking warm beverages also helps.
Satin pillowcases – helps keep hair from getting pulled during sleep and keeps head cool. I purchased extra pillowcases to put on the back of the couch, lay on my yoga mat, etc. I even took extra pillowcases on my recent trip to DC.
Satin pajamas – my hair doesn’t stick or pull on this fabric and kept me cool (and feels awesome on my skin!).
Natural shampoo/conditioner – no parabans or sulfates, low PH level
Natural deodorant – no aluminum
Wide tooth comb for easy combing and preventing tangles
Lint roller – I take one with me everywhere to roll the loose hair from my clothes
Absorbent towel – gently soaks up the extra water after a hair wash. Wrapping hair in a towel (turban style on top of the head) puts pressure on the roots
Apple cider vinegar (or regular vinegar) – mix one part vinegar to three parts water for a rinse to remove buildup on the scalp (this happens naturally since you can’t scrub the scalp). I did this rinse every 4-5 washes and usually the first wash post-chemo treatment. Let the rinse sit on your scalp for a few minutes, then rinse WELL (otherwise it left my hair feeling dry).
Things to remember:
Everyone reacts differently to the same chemo protocol and everything else, including cold capping! Some women experience small shedding (less than 15%), while some had extreme hair loss (more than 70%).
What works for some, may not work for you. Example: many women I met swear by Neutrogena’s T-Sal shampoo to remove buildup on the scalp; I had my worst shed after using – it may be the timing of my chemo treatment or something else, but it was scary enough that I won’t try again.
Don’t comb your hair from the scalp. I take the smallest sections of hair, start at the bottom and gently comb going up – hold the hair away from the scalp so you’re not pulling. With my hair length/amount, it takes time in the morning and night but worth it.
Drink lots of water – before chemo, during chemo and after. It helps flush the chemo through your body. I found the more water I drank, the less side effects I felt from chemo.
Touch your hair as little as possible. For someone who LOVES her hair played with and considers scalp massages simple pleasures, this has been difficult for me! But my hair sheds less when it’s touched. One challenge is that the new ‘chemo curls’ tend to tangle a bit more, so I have to gently finger comb after a walk, exercise or windy day.
Tracking your shed amounts may help determine when you’ll experience a ‘heavy’ shed and help determine a slowing post-chemo. It seems weird to keep your hair (I labeled each week in a sandwich bag) but it helped me learn that my worst shed was every third week of my treatment protocol (coinciding with chemo treatment) and now I can tell that my shed is (FINALLY) slowing down.
The process of wearing the cold caps occurs during infusions. I thankfully tolerated the extremely cold caps very well after the first cap cooled my head. It was a distraction during chemo. For me, it was the in between and post-chemo rules that wore me out. Cool hair washes, air dry, no products, try not sweating during exercise, no pony tail, no hats, etc. But in the end, it has been worth it – I already have hair growing back, filling in thin patches.
Be smart and thoughtful about caring for your hair but still ENJOY life. Your scalp is supposed to stay cool during chemo/cold capping, so I set my bike trainer up near a window to open for cool air, put some fans on me and if necessary, placed a pack of frozen peas on my head or back of neck. Sometimes you just have to be creative!
While I used manual caps (Penguin), meaning these had to be manually changed every 20-30 minutes, my clinic offers a freezer storage so the caps stayed there. I didn’t need dry ice, coolers, etc. Most of the companies provide tips for these and more.
Some people asked if the efforts and anxiety are worth it, if it would be easier to be bald. It’s usually people who have never been through chemo or faced something like this because of an illness. And while some may ask innocently, please consider your questions to make sure it’s not insensitive. Because honestly these questions, unnecessary opinions and comments can add anxiety to already stressful situation. I let myself get exhausted justifying my decisions until I realized how stupid that was when it’s my hair, my health, my life. I get that some people are fine being bald or it’s just hair to you or you’d never spend that type of money on saving your hair (interestingly a woman who said this is known to spend almost $200 per month to color/cut her hair). But that’s your choice and perspective. It doesn’t mean it’s mine or someone else’s.
I lost my hair in massive clumps after one chemo treatment during bone cancer, when I was 21, and I stayed bald for almost 15 months. I didn’t enjoy being bald. Of course, I handled it because I had no choice. I thankfully had a choice during breast cancer treatment. A risk of one of my chemo drugs for breast cancer was possible permanent hair loss so had I let my hair completely fall out, I may be permanently bald. Ugh, not a risk I was willing to take. In some ways I felt like I was in a no-win situation with this cancer treatment. But then I realized I had a choice of doing cold cap therapy. Let’s help others have choices by supporting people in their decisions, especially during a serious illness, even if your opinion varies.
Yes, there are restrictions and it’s heart breaking to watch your hair still shed. But waiting two years for my hair to grow back to any length is equally frustrating. Cancer is frustrating.
Would I do it again? Most likely. If I had to be bald again, I would of course find a way to embrace it. Because that’s how we cancer survivors roll. But to have the option of keeping my hair, the choice to make rather than cancer make it for me? That’s why cold capping is so important to me, why I believe it should be available to everyone. I hope more clinics and doctors share the option and support patients. I hope more insurance companies step up to pay for it (some do, bless those companies). I think protecting your hair is as important as taking anti-nausea medicine. It’s quality of life and peace of mind.
If you or someone you know wants more information on cold cap therapy, please feel free to reach out to me. Please consider sharing this post, and my others, to help raise awareness of this resource available to cancer survivors. You can also visit the Rapunzel Project for a list of companies providing cold cap therapy or ask your cancer center about available options.
** These are my tips that worked for me. Cold capping is not guaranteed to work for everyone. Follow your company’s guidelines and do at your own risk.