Life in Chemo: A Totally Incomplete Guide

Hair

Yeah, this one is a doozy.

Hair loss

First off, whatever drugs you are receiving, your hair does not all fall out on day one. And not all chemotherapy causes hair loss or complete hair loss. My doctor told me that one of her patients who should have lost all her hair only lost her body hair and just a little thinning on her head: ideal hair situation for a lot of American women.  I lost pretty much everything, but did manage to keep enough of my eyebrows that I didn’t lose that part of communication, which I was grateful for,

If you are taking a drug that causes complete hair loss, it takes a few weeks to happen for most people. According to the Mayo Clinic, and myself, this is the timeline-ish:

• 2 weeks after chemo starts your scalp will start to ache. I found it was only painful when I actually touched it. So, you know, try not to touch it
• Once your scalp gets really ache-y you’ll start shedding hair a little faster than usual.
• Another week, and you’ll start pulling out handfuls and realize that “omg, I have so much hair on my head”. You will continue this for a few more weeks, because OMG you have so much hair on your head
• Then, about 6 weeks after your first treatment, depending on how dense your hair was, you’ll finally lose it all

How do you make this experience less terrible?

First off, don’t run off and shave your head the day of diagnosis. Everyone I’ve spoken to who shaved their head proactively might have found it empowering in the moment, but then regretted it soon after.

From a practical viewpoint, you won’t start treatment for a few weeks to a month after diagnosis as your tumor board decides on a treatment plan – the hair will start to grow back and you might be dealing with in-grown hairs at a time when you really don’t need to be dealing with anything that could cause a wound or really any kind of additional inconvenience. 

The main regret I heard was regarding privacy. Shaving your head out of the blue is like a billboard blinking “I have cancer. Ask me probing and intrusive questions!” You’ll be treated like an advocate for preventative monitoring and providing emotional support for others when you should be the one getting the support. Random people will interrupt you at the market telling you how brave you are and provide scads of unsolicited advice. As a super private person myself (ironic, since I’m doing this site right?) I would not have been able to cope with that. 

I read a bunch of conflicting information regarding how to deal with the process of hair loss and settled on this:

A week before chemo I got a pixie cut. I got a little boost emotionally from compliments on my new hair and I was able to donate the foot of hair that got lopped off. It also meant that when my scalp started to hurt, there was a lot less weight pulling on it. I would not have handled getting a haircut after my scalp got sore no matter how gentle my stylist was – that much touching and pressure would have been too painful. 

When the hair started falling out, I wore a hat around the house. Having to clean up all the hair I was losing felt like adding insult to injury. And, I was super tired so I didn’t want to be vacuuming daily anyway. In the evening, after we put the kids to bed, I would go on the porch, shake out my hat and gently comb my hair to take out all the hair that was ready to go.

When most of the hair was gone, my scalp stopped hurting. Then I used the electric clippers we’d bought for terrible pandemic hair cuts with a medium guard and cried in the yard as I shaved off the tufts that were left. Not a great day, but overall, the progression was pretty gentle. It was autumn, so wearing hats all the time didn’t draw any attention.

I was happy with the solution and don’t really have any complaints. You definitely want to check with your doctor about whether your drug causes hair loss at all and if it does, how complete the loss will be. 

Shampoo

I learned the hard way… use shampoo on your head even when you don’t have hair. I checked with a few naturally hair-free friends when my head was so itchy I thought I might go bananas. They confirmed that yes, I really should have just kept using my shampoo. And I really, really shouldn’t have tried to use body soap. There are special soaps and oils that you can use, but, I found that just using my original shampoo was fine.

Like in skin care and makeup, irritants that don’t bother you now (essential oils, stripping cleansers, alternative preservatives) might bother your skin during chemo. My shampoo already didn’t have any of these and was very mild (I don’t have oily hair to begin with), so I just kept using that one. If it had bothered me, my next plan was to use the kids’ shampoo.

Cold Caps

You might be able to reduce your hair loss through cold caps. The same theory applies from your ice mittens to avoid peripheral neuropathy: the cold constricts the blood vessels so less of the drugs get into your fingertips and to your scalp. Depending on your cancer and its location, you might be able to use these. Cold Caps can be very pricey (I’m talking 3 grand) and it generally isn’t covered by insurance.

There are 2 types, one is a machine that the hospital has, they roll it up to your chair, hook you up, and you’re good to go. A slightly less expensive option is something like the Penguin Cold Cap, where you rent the cap, freeze the ice packs and bring the whole set up into the infusion center yourself and replace the ice packs as needed.

The companies mostly claim the treatment as a “success” as long as you lose less than half of your hair. When I first saw that, I was like, “what? 3 grand and I only get to keep half my hair?” After half my hair had fallen out, I realized that half your hair is still a lot of hair and with a little careful styling, it would have been fine. I think the faff around the machine or the cold packs would have been a bit much for me to handle even if it had been an affordable option. And it was more important to me to use the ice mittens to prevent neuropathy and I wouldn’t have been able to manage both sets of ice packs, even with help. If I was still working in an office during treatment, I think I would have made the effort to keep my hair.

Wigs

Wigs can keep your treatment private and let you avoid dealing with one of the more triggering side effects of chemotherapy. I will admit that I did not look at my bald head at all during treatment. I figured, there was enough new and awful things going into my noggin, why add one more? One of my kids was super curious what I looked like bald, so I let them have a peek a few times, but, other than that, only the doctor saw my noggin. 

The medical term for a wig is “cranial prosthesis”. The best part of this hilarious medical term is that it is a medical term. And things with medical terms have medical codes. And things with ICD-10 medical codes can be billed to insurance. And since you will be maxing out your deductible, there’s a good chance that you can get insurance to pay for a nice wig. Depending on your coverage you might get $100 for it or $2 grand. So you gotta get a letter from your insurance company before you go shopping. 

There are thousands of wig buying guides out there. I did not have the energy or brainpower to read or use their wonderful advice. Instead, I went to a shop that specialized in hair loss, which meant they knew all about submitting to insurance as well. It was definitely more expensive than going to the wig shop down the street, but the shop did all the maintenance for me and was just so gentle when I was so fragile.

I went the wooly cap and wig route. And let me tell you, there are a lot of great $20 wigs on Amazon. These lilac beachy waves were my absolute favorite. 

Hair Regrowth

For nearly everyone, your hair does grow back. Hooray! I went from a complete hair-loss chemo to a partial hair-loss chemo so my re-growth has been slow but steady. I got two wonderful bits of advice that I followed and was so thankful for.

Advice the First: headbands can hide bad hair. It was true! I got some sparkly bands and some plain ones and they kept the chemo curls from getting too out of hand. The thicker bands were more flattering on my thin poofy curls.

Advice the Second: get shaping haircuts along the way. You might not have a lot of hair, but it is growing in curly and wild. The salon I go to just called it a growing out cut. They shape it a little every couple months then send me on my way.