Things No One Tells You
5 Things No One Tells You About Losing Your Hair During Cancer Treatment
By Alula
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When I learned I had cancer and would have to to undergo chemotherapy, I couldn’t have imagined how quickly things would happen. I had to begin treatment in two weeks, which meant that I had practically no time to prepare for what was coming — including my most dreaded side effect, the hair loss.
One of my first clues that losing my hair was going to be a dehumanizing process was the way I was told (or rather, wasn’t told) what to expect. My doctor simply handed me a piece of paper with the names and phone numbers of three wig stores in Manhattan. It was (almost) laughable! There was no other guidance — no mention of what my options were, such as cold cap therapy; no explanation of synthetic hair versus real hair wigs; no discussion about the percentage of cancer patients who ultimately decide to get a wig — nothing.
I assumed that I needed the wig, but it was hard to make that decision so early on — partly because I couldn’t visualize what I would look like sick. Would I really need it? Was it worth the money? Would it help me feel better about myself, or would I feel ugly wearing it? Would bald feel beautiful? It’s a bizarre confluence of emotions to feel like your primary goal is to stay alive, and yet to also want to feel beautiful while fighting for your life.
My husband Ben came with me to the wig store, and as I tried one on and looked in the mirror, that’s when it really sank in for the first time: I had cancer. Somehow, it hadn’t fully hit me until I saw myself altered. My mind immediately went to all those Locks of Love donations for cancer patients my friends did. Suddenly, I was one of those recipients of locks.
I cried my eyes out in the middle of the shop, knowing that I was going to be forever changed by this experience. I asked Ben if he would still love me when my hair fell out. He grabbed my hand and told me I’m beautiful — and that I would be beautiful no matter what happened to my hair. I wish I could say I believed him; he so heartfully said those words to me. But deep down, I feared that even if I survived cancer, he would leave me because I wouldn’t look like the girl he fell in love with.
I didn’t buy a wig that day, but I had to make a decision soon, because my hair began to fall out fast once I began treatment — faster than even my doctor had predicted (or was afraid to tell me). Here are a few things I learned along the way that may help others navigating hair loss during cancer:
Cutting your hair (in stages) can make things less traumatic.
My oncologist suggested that I get a buzz cut because watching your hair fall out in large clumps can be extremely traumatizing. Still, the thought of going straight from my long hair to a buzz cut felt equally traumatic. Someone at the wig store had suggested that I ease myself through it: first getting a bob haircut, then going for a pixie cut, and then getting it all buzzed off. This seemed like a good idea, so every few days, I was running over to a hair salon and getting my “chemo cut” updated.
While your hair is falling out, your scalp needs extra TLC.
One thing no one warned me about was that as the hair fell out, my scalp would be covered in bumps and extremely itchy. This happens because your roots are traumatized by the sudden fallout, too. They react with bumps and irritation. A cooling gel helped ease some of the discomfort, but the cold sensation also made me shiver. It turns out, having hair on your head isn’t just an aesthetic thing; it also helps regulate your body temperature. I realized I’d have to invest in several head scarfs and UPF 50 hats both warmth and sun protection.
Wigs can get expensive, but even the “natural” ones take some getting used to.
In the meantime, my friends had started a “wig fund” for me (my insurance was only going to cover up to $750 for the medical term, “hair prosthesis”). When the funds came in, I went back and forth on whether $5,000 was too much to spend on a wig, especially when there were so many other aspects of my care that I could put the money toward. But as I thought about showing up for life (and work) completely bald, I felt I was really going to need this wig.
I bought one made of natural hair that matched my color pretty closely. The surprising part? As soon as I bought it, I hated it. No one had told me that part of what can make a wig look fake is the fact that we all have a natural hairline. When I put on a wig that had a perfect curve to it, all I could see in the mirror was Legolas from the Lord of the Rings! I missed the little wispies that would normally frame my face. I missed being able to pull my hair back into a ponytail, or being able to move without worrying about my wig sliding around — which it sometimes did when it got caught on something.
Suddenly, the dread of hair loss was replaced by the dread of a wig malfunction! It brought me intense anxiety to sit in a work meeting and be completely preoccupied with whether my wig would stay in place, or whether I’d start overheating. No one tells you just how hot it can get under a wig. Of course, it didn’t help that I was in the beginning stages of medically-induced menopause (at 29 years old!) because of chemo, and was having insane hot flashes.
Baldness isn’t just allowed — it’s beautiful.
One day, when I didn’t feel like melting under the wig for another day, I decided I wouldn’t wear it to work. I remember putting on a pair of big earrings and extra mascara that day. (Side note: this was when I still had eyelashes, which did, I should mention, eventually fall out.) I was so scared to come off the elevator and walk into my office, but as soon as I made eye contact with my colleagues, I relaxed. They smiled, put their hands up, and gave me high-fives. I thought to myself, “OK, I can do this!” It was such a turning point of confidence for me.
The craziest part? I ended up loving my bald look, too. As cliche as it might sound, I felt really bad-ass. Although I wasn’t ready to part with the wig yet — it was like a security blanket — from that point on, I stopped wearing it.
In fact, I held onto the wig until a friend of mine got diagnosed with Hodgkin's lymphoma. I made her a huge care package — basically filled with a lot of what we're selling on Alula today — and added my wig and all of its accessories to the box. I said, “dye it any color you want — it's yours.”
My mom, a bit concerned, asked, “What if you got cancer again? What if you need the wig again?” But I knew for sure: I was never going to need this wig. No matter what happened in the future, I was breaking up with the wig. (My hair did fall out a second time, when my cancer returned after a brief period of remission, and I didn’t miss the wig.)
It’s normal to be anxious — and excited — about hair regrowth after cancer.
Now, over two years in remission, my hair is back — and just like it used to be pre-cancer. I had heard that it could grow back a different color or a different texture, and that terrified me. And while I did have the infamous “chemo curl” initially (thanks to altered hair follicles during treatment), it eventually returned to its smooth, silky state. Hair care was its own investment: I swear by a special shampoo that is clinically proven to help regrow your hair naturally, and a conditioner that helps keep hair follicles open.
I’ll often catch myself throughout the day twirling and touching my hair, petting my head because it feels so good, like a shot of serotonin. I didn’t know it was possible to receive so much pleasure from the ability to pull my hair back into a ponytail again or see those wispies, but I do!
Although I do have to admit, getting haircuts is still a traumatic experience. I’m always afraid that I’ll ask for a trim and someone will decide to take inches instead of centimeters off — and when you’ve been completely powerless over your hair being taken away from you before, you become attached to every millimeter, every strand.
A lot of people have said to me, “I miss you bald, or with a pixie cut.” And while I’m grateful I came to love the way I looked with no hair, one of the worst parts of cancer is that your preferences become irrelevant. So maybe I’ll chop it all off again one day, or maybe I won’t. But whatever I decide, it’ll be a choice.
This article is for informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please keep in mind every individual’s situation is different, and you should not take any actions concerning your body and well-being before consulting with a healthcare professional.
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