Cold Capping

I did a brief little overview of cold-capping within a post a few months ago before I started chemo, but seeing as I'm approaching my last round and I'm now a pro, I thought I'd go back give you guys the run-down on how & why I freeze my head during chemo. In short, I do it so I don't go bald. I might be wrong, but I don't think I'm one of those chicks who'd look all doe-eyed and graceful and gorgeous without hair. I have a big dome. It's better with something decorative on it.

So far (at the risk of jinxing it), it's totally working. I'm 75% done with chemo and I still have about 85-90% of my pre-chemo hair. Personally, I can tell it's a bit thinner, but if you just see me on the street, all you'll really notice is that I really should get my roots done.

So how does it work? There are many, many articles about cold-capping during chemo that will explain it more thoroughly. I'll link them eventually, but here's my quick & dirty:

The Gist

At its most basic, cancer means that you have wonky cells that are rapidly dividing, unchecked. Chemotherapy drugs target rapidly dividing cells. What are our most rapidly dividing cells? Hair, nails, skin, your GI tract and your bone marrow. That explains a lot of the typical chemo side affects that make it a pretty shitty thing to go through.

[Insert scary cancer gif here whilst acknowledging how weird it is that we even have cancer gifs.]

Considering that your hair follicles are the kind of rapidly-dividing cells that chemo drugs love to feast on, the theory behind cold-capping is that by bringing the scalp temperature down and causing restricted blood flow, you're not allowing the chemo drugs to attack the follicles full-bore, meaning fewer of them will be affected and shed the hair.

So on the days when you have your chemotherapy infusion, you wear some kind of super-cooled head covering that brings the temperature of your scalp down below freezing. You pre-cool so that bloodflow to the scalp is already reduced when the drugs start to flow, and then you keep it cool throughout and up to a few hours after the infusion finishes.

Some therapies and hair types work better with cold-capping. Some don't work at all. I'm fortunate in that my chemo drugs and duration, along with the texture of my hair, made me a perfect candidate for it. And it's working.

I ventured into public the other day for the first time in weeks, and the couple of people that recognized me all had the same surprised "you still have hair!" reaction. I explained the cold-capping. It's nice to have that reaction instead of sad-cancer-face, and that's pretty much why I put myself through this.

How does it feel? It sucks. Your head is heavy and freezing and you're attached to all kinds of tubes, and your jaw is strapped and you get an ice cream headache. You're really supposed to eat something during chemo, but the strap around your face makes it hard as hell to chew anything. Ativan is a God-send when it comes to cold-capping. I forgot mine last round for the first half and it was freaking brutal. If it were like that the whole time, I don't know if I'd have been able to stick it out. But once the Ativan kicked in, it was tolerable. Not awesome, but tolerable. My face in this picture sums it up:

There are a bunch of different cold-capping systems for scalp cooling. The manual cold caps by Penguin seem to get a lot colder than the machines, but they involve a lot of logistics that I couldn't handle, not living close to the infusion center. They're great for the super intense therapies like AC or the "Red Devil" that have a lot lower rate of success with the cooling machines. They're a series of cold caps that you pre-cool with dry ice, and that you switch out every 30 minutes during your chemo to make sure they stay at the optimal temp. There is no dry ice distributor where I'm staying during this process, and my trip to chemo involves several hours drive, a hotel stay and a boat both ways, so if this were my only option, it would have been a no-go. But Penguin is one of the first companies to offer the service at all in the US, and they're a really good option if you can handle it.

I'm fortunate enough to be only the second person at Mass General to use their brand new Paxman machine, which is a cooling cap system where the refrigerant is circulated through a specially designed cap and kept at a low temp to do its work. For mine, I think its -30ºF. I definitely come off with chunks of ice on my hair, so I know it's cold.

My cold-capping routine (with the Paxman machine:)

I get to chemo, meet with the doctors, get my port accessed, go to infusion and settle into the chair. I bring a twin-sized electric blanket that I put horizontally in the chair so when it gets really, really cold, I can wrap it around me. I bring cashmere socks (thanks, Whit!) that I change into when we get there. I bring coconut water and my HydroFlask water bottle with lemon water in it.

The pre-chemo hydration starts first, and then we get the cap on as we start with the Herceptin infusion. As Herceptin is a HER2+ targeted immunotherapy, and doesn't attack rapidly dividing cells, I don't have to cold cap for this one, so I use it as the 45-min pre-cooling time.

When you're putting the Paxman cap on, there are two main parts: the blue, brain-like inner cooling cap that attaches to the Paxman machine and circulates the coolant throughout, and the outer neoprene cap that helps to make it fit tightly and ensure allover contact.

As you can imagine, heads vary greatly in size, so you have to finagle it a bit. I have a big head. I come by it honestly. You can pick out family members in group pics of past generations because they look like the ones with bobble heads. I've accepted this. With the cold cap, I have found that it's snug around the perimeter, but that it slides up so the top of my head isn't getting great contact. On one facebook group, someone suggested putting a maxipad between the caps, as well as a silky scarf that you can use to help pull down on the inner cap if it doesn't feel like it has great contact. So I started doing that as well.

I use a Tangle-Teaser brush to brush the hair back so it looks like a mullet, and spray the hair until it's damp so it conducts the cold and doesn't like an insulator. Then I slather about a tablespoon of some conditioner on the damp part that's going to be in the cooling cap, so it doesn't freeze to the cap itself. I put a cloth headband on my forehead and over my ears, along with some moleskin to protect my forehead & ears from frostbite, and then slide the inner cap on, making sure it's covering the hairline as best as it can.

I place the maxipad on my crown, and drape the silky scarf over it all so the ends hang down by my face like the ears of a huge lop bunny. Then I put the neoprene outer cap on inside-out and kind of roll it down over the rest so I'm not moving the inner cap out of place. I cinch the chin strap and various bungee cords, tie the ends of the scarf under my chin, plug in the machine so the coolant starts to circulate, and tighten all the straps to make sure everything has good contact and is cooling properly.

I pre-cool for 45 min, take a bathroom break when the drugs switch, and then cool throughout the Taxotere and Cyclophosphamide infusions, which are the ones that do a really doozy on your follicles.

About the bathroom: you're allowed to disconnect for up to 8 minutes, so if I have to pee, I just disconnect from the machine and leave the caps in place. It's easier than the chemo, which you have to wheel in there with you if you have to make a bathroom run. (JK, there is no running.) In all reality, the thing that takes the longest is waiting for the bathroom to be empty. They give us all saline before we start, so you have a lot of rather hydrated people in there attached to rolling IV pumps.

Even though I know the drill, I still get all excited when the alarm goes off saying that last of my infusions is done, only to realize I just have to pack up and go out front to finish the 90-minute post-chemo cooling. It makes the day way longer and less comfortable than it would have been. But when the first of my hair started falling out on my sideburns on Day 14 after my first chemo, and then when I started to see loads of hair in my brush, I stopped questioning it. If I can avoid losing it all, and if I can come back from this without any obvious additional physical scars from the process, then it's worth it.

For me, it's worth hanging on to one thing I can control. It's worth choosing when and with whom I have the cancer conversation. It's worth retaining one thing in my life that's normal--one piece of me that's not been taken away by this horrible experience. It's worth sucking it up for a few lousy days that would have been lousy anyway...(as long as I have the Ativan.)