Recovering With Control

When we think of "having control" during cancer, we often think of the woman shaving her head before her hair falls out. There is very little we can have control over, but our hair is one of those things. I never felt empowered the two times I shaved my head from hair loss from chemo. I actually felt more defeated than anything, like I was admitting that something was the matter, and I had no choice now but to show the world.

I go into great detail in Welcome to the Bright about my hair growing back after chemo, and how that can be just as strange an experience as it is to lose the hair in the first place. With my second round of chemo in December 2023, I lost my hair again. I admit that I cried about it, and I cried quite a bit. The morning of my first round, as I was getting ready to leave, I spent a few extra moments running my fingers through my hair and admiring how much it had grown since my previous chemo ended a year and a half earlier. I was saying goodbye to my reflection, one which I had finally come to appreciate and recognize again. I would be going back to a face I hardly recognized, and I wasn't sure I was ready for that part of chemo again.

Wigs had not been on my radar back in 2022; I was busy fighting for my life. But this time around, I felt more comfortable with what was about to happen to me. I knew the routine of the chemo itself, I was ready for the ebb and flow of side effects over the days following treatments. And I knew that I didn't like being bald the first time--I planned to take more control over this aspect of the experience. Which was why I dabbled in wigs.

Here I am again, in that period of recovery when my hair is growing back. If you've ever lost your full head of hair, or shaved it on purpose, you'll be familiar with the ebb and flow of hair growth from scratch. I've had two periods of hair regrowth this year--the first was this spring, when I finished my my second round of chemo, and the second is right now, after finishing my third round of chemo. During the second round this winter, I lost all my hair again (thanks to a high dose of the drugs). It began growing back about 6 weeks after I went off chemo. The way it worked was I went from 90% bald to suddenly having a light growth all over my head. It wasn't necessarily getting longer, just thicker. At the 10 week mark, there was no mistaking I had a thick growth of hair, about a quarter of an inch tall. Through my liver surgery, and into the month of recovery, that hair continued to grow to about a half of an inch long before I began the next round of chemo in June. I worried that my hair would fall out again, but this time the majority of my hair was spared. I ended up with three bald patches (one in the front by my forehead, one on the side of my head, and the other on the crown of my head) which were all around 2-inches in diameter. I couldn't cover them with my stubble, so I just coped with it.

Chemo ended in early August, and almost immediately my hair began to grow like gangbusters! In 2022, my hair grew back black and curly, but this year it grew back steel grey and straight. It's been difficult to look at myself and think that just 10 months ago, my hair was brown, and now it's this weird "I guess I'm not getting any younger" color. Will it go back to brown? Was I meant to turn grey around the time I was 50 anyway? Who knows. As it's getting longer, it's getting darker and I'm starting to see some brown/gold highlights around. Perhaps I'll get something resembling my old color back. Or maybe I'll just color the whole thing red and ignore the issue altogether.

I can't speak for any other woman who has lost her hair because all our experiences are so unique. I know many who proudly keep their hair buzz short for a while, and others who keep their covered with scarves or wigs until their hair grows long enough. I've decided to keep my head uncovered and just deal with the mess that is my hair. What's a hairstyle? I have no idea. I just try to make sure what I end up with every day doesn't make me look like a Russian prison escapee.

There's a lot to feel uncomfortable about. Thanks to the drugs drying out my eyes, I haven't been able to wear my contact lenses in 3 years. I look in the mirror at a woman with crazy short, style-less, grey-ish hair, glasses, and who looks a lot older and skinnier than I remember. I still have a habit of tossing my head to get (imaginary) stray hairs off my forehead and of trying to tuck long strands behind my ears. I would be lying if I said I didn't miss my hair. But I do. I really truly miss it. I'm thankful to be alive and able to complain about it.

It's a complicated thing for women. If you happened to watch Jenna Fischer's interview last month on The Today Show, she points out that the things she was the most worried about going into chemo was will I be sick, and will I lose my hair? Sound familiar? It's a big deal for many of us, and all we want is for people to understand that just because we're fighting for our lives doesn't mean we've abandoned our ego.

How can you help your women friends navigate the tricky topic of hair loss with chemo?

When the Reality of Hair Loss Sets in

What I disliked the most were statements like "You still look beautiful!" You still anything doesn't work anymore, so try really hard not to say this even though it is meant as a compliment. I wasn't worried about being beautiful during chemo; I rarely even cared if wore pants. I just knew I felt like crap, I looked like crap, and I didn't need anyone making excuses for it. I did like when people said things like, "Oh I never noticed before what a pretty color your eyes are!" or "You have an brilliant smile!" It's worth pointing out that these were most often heard from my nurses.

Looking for something else nice to say to a friend who is mourning the recent loss of her hair? "We know it'll grow back when treatment is done, but it must be so hard right now to deal with this."

While Your Friend is Bald

It's not insulting to ask if they like wigs, hats or scarves, and if they do, get them one as a gift. Express concern over whether they are cold (even in the summer) and if you can do anything for them. Ask if there are any special creams, soaps, or products they are using on their head, and bring them some. I loved charcoal soap on my head, but I think it frightened people once they saw how hard core it is, so I bought my own.

Little known chemo fact: some drugs cause allergic rashes, and one place these rashes pop up are on the newly bald head. I had a horrible rash on my head, and an offhanded comment by someone in my support group sent me straight to Amazon to purchase the solution: Benadryl gel.

Remember: there are a lot of factors that go into a balding cancer patient not liking what they see in the mirror--be that patchy baldness, red angry rashes, peeling scalp, and moonface from the hormones. We could all agree that deep in the weeds of chemo, I was not "still beautiful," I was something much rougher and edgier. All I needed was sympathy, not solutions or compliments.

As Her Hair is Growing Back

As the entire blog entry has tried to illustrate, this is a very difficult time for us. So, it's also a time for more sensitive remarks. We're all excited to see the hair growing back, but not in the same way.

Don't say: "You look so cute with short hair. You should keep it this way!"

Do say: "You look healthy and wow your new hair is growing in thick!"

Don't say: "It won't be long now before you can start going back to the hair salon."

It's likely they have been going for a while to try to keep their growing hair under control

Do say: "You must be getting excited to see so much hair again!"

Remember what your friend looked like before her diagnosis? That's what she wants to look like after. When she reaches that point, you can go back to all your usual hair comments. With one exception: start saying "It's so good to see you feeling like yourself again. But more importantly, I'm so glad you're alive."