Losing their hair is one more way that cancer makes patients feel they've lost control over their bodies. It's not just physical, it's personal. Here are some tips for what to say.
The dreaded moment in this journey with recurrent ovarian cancer has arrived when I must concede that my hair is falling out again. Something must be done about it. The Taxol is working; the hats aren’t. I don’t know exactly what it is about hair that is so fraught with emotion. I don’t like to speak for other cancer patients, but it seems like it’s another way that cancer has wrested control of our bodies from us — even from women who typically wear their hair short.
For me, the hair issue has a long history that goes back to my childhood and growing up in the 60s when everyone had long, straight hair. I had short, curly, frizzy hair. I wanted straight hair as badly as I wanted my own car, a boyfriend and to be independent.
It wasn’t until I went to Costa Rica as a university exchange student and let my hair grown out of necessity, that I realized the longer it was, the straighter it became. Throughout my professional career as a reporter, I wore it long. I had long hair when I married my husband on Valentine’s Day in 1988. I left it long because he liked it that way.
Twenty-nine years later, I received my stage 4 ovarian cancer diagnosis. That January day, one of my first questions was, “Will my hair fall out?” immediately followed by the statement, “It doesn’t matter.” My oncologist said she couldn’t be sure. I started on a carboplatin-Taxol-Avastin line of drugs the next week on my 59th birthday. Taxol makes hair fall out.
Turns out, it did matter. I started wearing hats. Clumps of hair appeared in the shower, on my pillow, in the bathroom sink, on the kitchen sink. To say it was distressing is so far beyond an understatement as to be ridiculous. One day I sat on the stairs and cried.
When I mentioned the hair loss to my oncologist in front of her medical assistant, they both said the same thing: “You’ll love it short. It’s so much cooler in the summer.”
Tip: This goes in the category of what NOT to say to your friend or loved one. Right next to, “I know how you feel (unless you’ve been down this road), but it’ll get better.”
The snarky Kelly who sits on my shoulder responded (silently, thank you, God), “So you’ll be shaving your heads in preparation for the summer heat? It’s February, people, and 50 degrees in the cancer center.
A few days later, my daughter-in-law, a certified cosmetologist, came to my house and shaved my head. My sister was there in solidarity and my husband who documented the whole process in photos. We made it a celebration on the road to recovery. My son arrived with his head already shaved.
I wore hats and scarves. I respect the women who are rocking the bald and running around with their shaved heads uncovered. A woman in the infusion room last week had temporary tattoos all over her lovely bald head. I couldn’t do it. I felt as naked as if I’d forgotten to put on my blouse. If UPS delivered a package to the house, I slapped on my beanie before I went to the door. When the cleaning lady, whom I’ve known for 10 years, came in, I slapped on my beanie.
That was a year and a half ago. It took that long for my hair to grow enough to flip up on my shoulders and make a tiny, itty-bitty ponytail when I exercise. Sometimes I shook my head so I could feel it brush back and forth on my neck. I ran my fingers through my bangs to keep them from falling in my face while I work. I bought bobby pins, a new brush, and hairbands.
My daughter-in-law came to my house this week and cut my hair in a very short Jamie Lee Curtis hairdo. Now Angelica is a certified pet groomer who grooms dogs, mostly. But she hasn’t forgotten how to do people hair. I’m saying my prayers that another appointment for a shave won’t be necessary.
You’d think it’d be easier the second time. I knew how it would feel. I know how long it will take it to grow back. That’s why it’s not any easier.
My treatment has caused neutropenia or a low white blood count so I’m getting injections of Zarxio to help my blood marrow manufacture new neutrophils faster. Under side effects, the manufacturer lists as “minor side effects” bone, joint, muscle pain, hair loss or thinning of the hair.
Minor. There’s a whole list of other side effects that are medically more impactful, but psychologically loss of hair is not minor.
My maintenance regimen when I’m NED (no evidence of disease) again will include letrozole. Another drug that causes hair loss or thinning hair. There’s no escaping it.
Why is it so hard? It’s not simply vanity. Many ovarian cancer patients, especially those in later stages like myself, lose all their female organs in surgery as part of their treatment. There’s a psychological impact in losing your uterus, cervix, ovaries and fallopian tubes, even if you’re past childbearing age. Even more if you aren’t and you’re trying to wrap your head around the impact on your dreams of being a mother.
My image as a woman, wife, and mother took a blow with that surgery. I still have the scars, both inside and out. The loss of hair only reinforces that blow.
What do you say to a friend or loved one who’s going through this?
· Is there anything I can do to help?
· I’m here, if you need to talk.
· Would you like to shop for a new scarf, hat or wig? I’d love to go along as your consultant.
· I’m praying for you.
· Can I tell you a joke?
· You look like Jamie Lee Curtis (Or whoever works) (I got that one a lot after my hair started to grow out. It made me smile!)
· Call me any time if you feel like talking.
· Do you want to take a walk or watch a silly, funny movie?
These are just a few ideas that let your friend or loved one know you care. We know you don’t what to say. We’re happy you're trying.