What No One Tells You About Losing Your Hair Twice From Chemo

Even though there were arguably worse parts of each of my cancer experiences, every time I lost my hair was another tragedy in and of itself. I’ll never get over the pain of seeing the first few strands of hair land on my sweatshirt only a week after starting chemo — and it wasn’t any different when I was 15 versus when I was 24. Every strand on the floor, every clump that I threw away, felt like a loss of my old life. Don’t even get me started on looking at yourself for the first time in the mirror after just shaving your head. It’s like looking at someone you don’t even recognize as yourself anymore. 

Like most people, my hair has always been a part of how I identify myself, especially when it grew back after chemo the first time when I was a teenager. Not only was I happy to have a full head of hair again, it was more of a reminder of how far I had come in my recovery. Almost 10 years cancer free. Sometimes it’s hard for me to move past that because I wish I had gotten to celebrate that instead of celebrating the end of another cancer treatment. That’s why losing my hair for a second time felt like another big loss. I liked the person I had become. I liked my life, even the imperfect parts. I had come so far only to suddenly to end up back at square one; back in the stupid infusion room chair with red medicine pumping through my veins, slowly destroying me (quite literally). There I was again: the girl with cancer. I had tried so hard to run from it, to not acknowledge that part of my life anymore. But one thing about cancer is you can’t run from it, no matter how hard you try. 

The hair started falling out everywhere. Strand by strand, clump by clump. I tried to not brush my hair, to not touch it in hopes that it would last longer. But, as you know, that doesn’t work. Eventually, I just couldn’t do it anymore. I couldn’t even wash my face without hair getting in my eyes and falling all over the sink — and it was painful to watch. Sometimes it gets to a point where shaving it all off is easier than the extra pain you’re already dealing with. So one morning I woke up sobbing at how much hair was on my pillow and I ended up shaving it off. To my surprise, I didn’t cry or fall to the floor. I just sat there in the hurt; that I had to start all over again. 

I immediately started wearing wigs again. I tried to find something that matched the old color of my hair because, like most girls in their 20s, I wanted to fit in. I wanted people to recognize me as Caitlyn and not the girl with cancer. People joked that I should try colorful wigs or a style I had always wanted to try, but for me, I couldn’t do it. I couldn’t pretend like this was all just a convenient way for me to try a new hair color. This was my real life and I just wanted to feel like myself. So that’s what I did throughout most of my treatment. When I was home, I would let my head breathe, but when I went out or had friends come over, I would put my wig on. It was like this extra layer of protection. This extra way where I could prove to people that I was more than just a sick girl. 

I lost everything from my hair to my eyelashes. I tried so hard for a year to cover it up. It worked out for the most part until I got out of the hospital after being on ECMO and my hair started growing back and the wig grew itchier. I felt like I wanted to rip it off every time I was out and it started to bother me, but obviously, I didn’t want anyone to stare at me. It was just hard because I didn’t want to have short hair. It wasn’t my choice, but one day I was like, “Screw this, I’m just going to go all natural.” And I did. It felt freeing to be like, “This is who I am now and I may not love it yet, but I need to get used to it.”

I’m still adjusting to being a girl with short hair, but it’s better than being ashamed of who I am. The wig did help me feel normal during treatment, but afterward, it held me back from embracing my new self — even though I never chose to be her. For me and other cancer patients, it’s so much more than just hair; it’s about reclaiming our sense of self. I’m learning who this new version of me is — and this time, I don’t have my wig on for it.