My Hair Loss During and After Cold Capping (Scalp Cooling)

(Update: The podcast series I promised in the first paragraph of the post below has now been updated to include these three episodes – The Scalp Cooling (Cold Capping) Episode [Part 1], The Scalp Cooling (Cold Capping) Episode [Part 2] and The Rapunzel Project Episode. You can listen here online or on whatever podcast app you usually listen to podcasts. Simply search for This Unmillennial Life.)

Any day now I’ll be pressing PUBLISH on new episodes of the podcast about my experience cold capping (scalp cooling).

[Note that the terms scalp cooling and cold capping can IMO be used interchangeably. For whatever reason “cold capping” seems to be the most common term. Technically I did “scalp cooling” as that’s the term the system I had, Dignicap, uses. So you’ll hear me use both.]

Ordinarily, I would have those episodes out first before sharing this post. But just this last Friday I fielded my first call from a local fellow cancer patient who had been referred to me by our Breast Health Center. She was contemplating cold capping and wanted to hear about my experience.

(I could kick myself for not having those episodes ready to share with her.)

We talked at length, and after we hung up, I sent her a recap in pictures of how my hair had fared throughout chemo and in the months following. I’m sharing many of those pictures here in the hopes that somehow my story will help other women in deciding whether or not cold capping is right for them.

Now, before you quickly scroll through to look at the pictures, let’s get on the same page.

Cold Capping and Scalp Cooling are NOT simply a vanity issue. I can’t stress this to you enough. You’ll hear more about that in the podcast episodes, but I’m here to tell you that every time I hear someone refer to a woman wanting to keep her hair during chemo as a “vanity issue,” my heart sinks… and then I get a little angry.

What’s vain about wanting to look at yourself in the mirror each morning and recognize yourself?

What’s vain about wanting to shield your children and have them see you as they normally do? (Having had a mother who was twice bald from chemo, I understand this fear.)

What’s vain about wanting to control your health privacy?

None of this is to say that choosing NOT to cold cap or not being able to (cold capping is NOT right for everyone, and we’ll cover that in the podcast) is a sub-par option. I have a friend who I think the world of that didn’t cold cap (we were in chemo at the same time), and I see her beauty in all its glory irrespective of a head of hair.

But me choosing to cold cap doesn’t singularly make me more vain in wanting to preserve a part of me I’ve known for nearly 47 years… while so much of me was given over to chemo, surgery and radiation. I just wanted to hold onto a little part of me that felt like me.

That all being said, you’re going to look at these pictures and likely realize very quickly, I lost a lot of me (i.e. I lost A LOT of hair.) And that’s TOTALLY NORMAL with cold capping. The notion that cold capping can somehow miraculously save all of your locks and keep your looks the same is an aspiration I’m sure every woman has going into cold capping. To date, though, I know of none personally who can say “Oh, I didn’t lose any hair!” (I’m sure these women exist. I just don’t know any personally.)

Having lost as much hair as I did, the question becomes “Would you do it again?”

ABSOLUTELY. It was worth every penny I paid, all the additional work/stress in between treatments, the extra time in the chemo chair and the “work arounds” I’ve dealt with since chemo ended (see below for updates about my hair today). I pray I never have to do it again, but I would.

My goal going into cold capping wasn’t overly ambitious. My primary goal was to keep enough hair that I could get through chemo and the months after it with enough hair to not need to shave it all off.

My secondary goal (and I told myself upfront that I would keep cold capping through every treatment no matter what), was to preserve as much of the integrity of my hair follicles as possible for the future. Permanent hair loss is sadly a more common occurrence with one of the chemo drugs I took than many people realize or want to admit. Cold capping reduces the risk of long term hair loss, while also making lost hair grow back faster. (My bald spot started filling in well before chemo was over. You’ll learn more about how it does all of this in an upcoming podcast episode.)

What was NOT my goal was to have a beautiful head of hair throughout chemo. I knew I wouldn’t be able to wash it much, use a hair dryer, flat iron it or use products on it.

Imagine your worst hair day and being told you can’t do much to it. That’s kinda how cold capping was. (But it was MY HAIR, and I was okay with that since that was the goal I’d set for myself.)

[Note: I did push the envelope a little bit by wearing it either pinned back very loosely or in a low loose pony (to cover my bald spot) when I was going places. I don’t recommend doing this much as it puts a strain on the fragile follicles. Lesson learned as I got a little too reliant on the low pony in the couple of months after chemo and ended up with extra thinning in the back as a result.]

And with that, it’s time to do the big reveal. Here are just a few of the MANY pictures I took throughout chemo and the months after.

This was me just a few months before my diagnosis for reference.

This was me at my first chemo treatment wearing the Dignicap Scalp Cooling system. (Also notice the shirt with easy port access that I mentioned in this post about Gifts for Cancer Patients.)

Part of the “daily” maintenance with cold capping is combing (gently and strategically) your hair to prevent tangling while it’s shedding. This is what it looked like before Days 18-21, when the “big shed” (as I like to call it) happened. It’s steady, but manageable. Not super scary. Yet.

I knew going in that Days 18-21 would be the worst days in terms of shedding. This is just a fraction of the Day 20 shed. It was falling out to the point that I had to start combing through my hair and flushing it down the toilet without looking at it. Seeing it piling up in the sink was too scary.

But here’s the key thing to know if you’re reading this in preparation for cold capping or have stumbled on this post and you’re in a big shed: IT DOESN’T LAST like this. It WILL continue to shed. But not to this level. This level of shedding resulted in my bald spot:

It was at this point that I freaked out and texted my friend Margaret (who you’ll hear in an upcoming episode.) I was basically ready to give up. I was scared that it was going to keep shedding at that rate, and that I would be this monster of a steroid-puffy, chemo-poisoned woman that had just a few long strands of weird hair clinging to her head.

Margaret talked me off the ledge and basically gave me a ONE DAY AT A TIME pep talk. It was at that point that I started walking in a space of looking in the mirror each day and asking myself if I felt like what I had left was doable for THAT DAY. And if the answer was YES, I was going to press on. So I pulled my hair back and pressed on.

And that’s what I’ve been doing every day since.

Here’s how my hair has made out through the remainder of chemo and up to the current day. (See below for recent updates about my hair.)

This was my hair on the morning of my last treatment. Note how the bald spot has already started filling in. Also note, though, the receding hair line. Hair loss hasn’t been linear. It’s fallen out in different spots at different times… which actually has made it simultaneously more manageable but also a constantly moving target to figure out “what works” next.

This was the day after my last treatment. I could easily cover the bald spot at this point.

This was one month after my last treatment (and likely when I started getting a little too comfortable wearing the low pony. You’ll see how it thinned over the next two months)

This was two months after my last treatment.

This was three months after my last treatment (and a rare “face view”). Here you can see both the continued thinning in the bottom longest layer, while also noticing that the top hair line is beginning to fill back in.

And this is me a little more than four months post-chemo. At this point the pony has reached its limits. It’s gotta go. I’ve got a full hair of head underneath all that old hair. I’m anxious to get the two much closer together and be able to let go of my “pony crutch”… even though it’ll be a big change going to short hair for a while.

I’d be lying (and acting like I’m not human) if I said I don’t have vanity-filled days now that we’re through the more intense days of being in active treatment where I look at myself in that first picture and long for the hair I had before. But most days it’s just a manageable feeling that comes and goes. Some days are harder than others, but that’s true for everything in the post-cancer diagnosis world.

Rather than getting swallowed up in the grief of what was, I try to lean into the gratitude of having been able to control a small part of my journey mostly on my own terms. Gratitude is a very powerful emotion to pull me away from the mirror and back to a heart of thanksgiving and desire to serve others. And it’s with this heart that I hope somehow this recap serves you or maybe someone you know. ~Regan

(p.s. If you’re reading this as a current or future cold capper and want a little virtual hand holding, please contact me. I’m happy to help.)

UPDATE #1: After this post was originally published, I got my first haircut since starting chemo in early May. We had to cut a lot of the old, long leftover hair (i.e. the “pony crutch”) and trim some of the uneven, new growth. My hair now has what you’d consider patchy growth… meaning there are spots that are still normal length and spots that are short. This is the challenge that using a cold cap offers — retaining old hair and having new hair growing in at the same time. But it’s a challenge I’m VERY thankful to have.

The areas that are shortest and will require the longest time to “catch up” with the rest of the hair are right around my hairline and at the crown where my bald spot was. My plan is to keep my hair fairly short in a bob like this until the new hair can catch up.

(Note: I also opted for some semi-permanent color. Prior to chemo I had been coloring my grays for years. I’m waiting until the six month mark to apply permanent color, but for now, the semi-permanent definitely helped. The semi-permanent color isn’t exactly “my shade” but it’s so much better than the washed out color I walked into the salon with.)

It’s probably worth sharing at this point the story about my post-chemo encounter with a well meaning woman who worked in the cancer-wig space. (I wasn’t there for a wig consult. I mostly wanted to see if she had a pony accessory I could clip in to make it a little fuller.) She suggested to me that I should just cut it all off down to the root and start over with a pixie cut. Her input to me (again, said very kindly) was “You really don’t have another choice.”

I left that conversation choking back tears. I got in my car. Had a good cry. And then thought to myself, “No, actually I do have a choice. I have an option to keep doing what I’m doing,” which at the time was wearing my pony and just waiting on the growth to happen in the areas I’d lost.

Sitting here today with my new short bob, I’m so tremendously grateful I didn’t take her advice. (And if I could offer a word of advice to future cold cappers, be careful about whose counsel you seek when it comes to cold capping. Wig sales people, chemo hair loss specialists, etc., who have extensive experience with cancer patients [likely] don’t have extensive experience with cold capping or the process of uneven hair growth once it’s all over. Cold capping is disruptive to the way they’ve seen things done for years. It’s not realistic to expect them to be an expert (or even all that well versed) in this new technology and how to make it successful for you.

As I told friends and family, getting my first post-chemo, post-cold cap hair cut felt like turning a corner. Or maybe something bigger… reaching a major milestone. It was a lot of work, but it was worth it.

Here are my final thoughts or words of wisdom if you’re reading this as a future or current cold capper:

Be patient with you hair after chemo is over. You’ve got a few months more of needing to baby it while the hair follicles recover. Don’t rush this process. It’s a small amount of time to wait to ensure you retain as much hair as possible.

Don’t panic over the short stuff coming in. You’re likely going to have enough to do like I did and eventually go short enough to even things up a bit, especially if you had long hair before. (Or maybe you’ll lose so little like my friend Margaret that you won’t have to shorten it at all!)

As always, take it ONE DAY AT A TIME. I’ve gone from a pattern of wearing my bangs pulled back to cover my bald spot, to a low pony, to now a short bob that will require a head band for a while until the front hair line grows a bit more. One could argue starting from bald would be easier in terms of maintenance (not necessarily easier emotionally), but I wasn’t looking for easy in all this. I was looking to retain as much of me in the mirror as possible. And I feel like I succeeded.

UPDATE #2: During the visit with my stylist pictured above where I got my first post-chemo, post-cold cap hair cut (at roughly 4 months out), we discussed hair extensions.

>>Very important note here for anyone considering cold capping or in the process now — Hair extensions are NOT recommended while in active treatment using a cold cap, nor are they recommended in the first 2 – 3 months after.

But after my stylist did an assessment on the strength/health of both my remaining (retained) hair AND my new growth, we discussed me coming back at the 5 month mark and putting in “a few” extensions at the bottom/back to fill out that thinning area you notice in the picture above.

>>Very important note here for anyone considering cold capping or in the process now — It’s really obvious to me now that the thinning you see was a result of wearing my hair pulled back too much AFTER chemo was over. Learn from my mistake. Wear your hair back as little as possible while you’re cold capping AND for the 2 – 3 months after.

While I was waiting to go back in between months 4 and 5, I also discovered that post-cold cap hair extensions (and even post-chemo hair extensions) are a real thing and LOTS of ladies get them! I was honestly SHOCKED at some of the transformations I saw online and on Instagram. So when I went in for that 5 month visit, I decided to opt for more not less in terms of extensions and longer, rather than shorter. Here’s what my extensions looked like initially:

I wore these extensions for about a month and then had them re-done. This is a normal part of the maintenance of tape-in extensions. As your hair grows, the extension grows with it until eventually you have to have them removed and moved up to the base of the hair, right at the root. Here’s what it looks like when the extension is growing out:

>>A note about these types of extensions: These are tape-in extensions. There are LOTS of different types of extensions, but tape-in tend to be the least damaging on the hair. I was very pleased with the health and thickness of my hair when we took them out to redo them. I did notice any hair loss where the extensions were. So if you’re considering post-cold cap (or post chemo) hair extensions, I highly encourage you to go the tape-in extensions route.

I learned in that first month of wearing hair extensions that I didn’t need *quite* as many as I had. (I still have decently thick retained hair in the back of my head thanks to the cold cap). So we put fewer in at 6 months and colored the extensions to match my roots/new hair growth. Here’s how they look now:

And here’s a quick video of the process:

To say I’m happy with my extensions is an understatement. As I’ve said repeatedly to anyone who will listen, so much of my cold capping experience has been about control and having at least SOME sort of say in my cancer journey. Waiting on your hair to grow back out to the level YOU want after you’ve either lost it completely from chemo or lost some of it through cold capping is just one more part of the cancer experience you can’t control… or so I thought! Being able to recapture the longer hair I love — even if it doesn’t exactly match my old hair and still has some *challenges* with the new hair growing in — is an absolute gift I do NOT take for granted.

And who knows… I like these longer locks so much, I may become a hair extension girl for quite a while, long after the new hair has grown all the way in. ~Regan

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