Hi friends,

Today I wanted to share a little about my cold capping experience. Overall, I would do it again, and I felt like it was worth it.

Does it hurt?

Hell yes it hurts! Francois jokes that I go from my normal friendly self, to a cranky quiet pain-cave troll when the ice helmet goes on. The helmet weighs about 4lbs and is -30 degrees Celsius. So yeah, it hurts! I took Tylenol before the first cap each time, and then each time a new cap went on it hurt again for a few minutes. But overall it was bearable and I was able to move around and get through it each time.

You have to have the right partner

I used the Penguin cold cap system and it really requires a great partner. They have to switch out the cold caps every 25 minutes, make sure they're the right temperature, source the dry ice each time, and make sure the cap is perfectly fitted each time. This is particularly key I think! I ended up with overall thinning of my hair, but no bald spots, mostly due to Francois doing a great job fitting the cap each time and making sure all spots on my head were in contact with the cap.

It makes treatment day very long

I put the first cap on 30 minutes prior to my first infusion that can cause hair loss, and then kept it on until 4.5 hours after the end of the last infusion that can cause hair loss. For me that resulted in about 6.5-7 hours of capping each time. Which means about 17 cap switches! See what I mean about needing a good partner?

It made treatment day really long and arduous, but not unbearable.

If you are using a machine-based system at your treatment center this means you have to stay there long after your infusion is done. I didn't have to do this and luckily we live less than 10 minutes from my center so we'd just drive home and do the remainder of the caps at home.

It's expensive 😅

I rented my cold capping system and here is the final cost breakdown:

• $2,271 to rent the caps for 5.5 months
• $1,200 for dry ice (6x $200) *we actually spent $1,400 because we bought ice that one time we didn't end up doing treatment.

For a grand total of $3,671.

That's a lot of money to save my hair! If it was just temporary, I don't think it would have been worth it. But with Taxotere causing permanent hair loss, I feel like it was worth the cost.

You can't do anything to your hair for months

I basically didn't touch my hair for the whole 5+ months. I washed it once per cycle, so about once a month. Chemo dries out your skin and scalp so oiliness wasn't a huge problem. I combed it with a special super wide toothed comb every few days. I slept on a silk pillowcase. And that's it. Honestly my hair looked (and still looks) pretty terrible the whole time.

For me the whole journey was about the permanent hair loss prevention, so I just tried not to worry about it. It's only now that I'm done that I'm getting the itch to do something to it!

I lost about half of my hair

You can see in the pictures above how I lost my eyebrows and eyelashes. And my hair is much thinner, but still hanging on.

It's hard to quantify but I think I lost about half my hair overall. I have thin fine hair to begin with and it's definitely very thin now, but I can walk around and no one would think twice about it except me.

This is why I feel it was worth it. I will begin to grow my hair back now, and will go through some haircuts I don't love, awkward phases, and general thinness. But I haven't had to wear a wig, go bald, or worry as much about losing my hair permanently.

I have options now that others won't have for months or even a year or more. I can get hair extensions or chop it off to a bob or cute pixie. I have to wait until about 6-8 weeks after my last treatment to do anything but I'm really looking forward to fixing it up a bit!

Choices I made and things I learned at this stage

1) My treatment center did not offer cold capping and I decided it was worth it to me to do it, even though it cost a lot of money and was painful. It's not common when it isn't offered by the center. There are definitely people who do it, but I never saw anyone else in all my treatments who was doing it. Once again this was something I had to find and make happen for myself.

---

With love and gratitude,

Elizabeth