Another Strange Thing About Metastatic Breast Cancer

My hair tells the world that treatment is over and I am a survivor. If only it were that simple.

What to do about hair?

Let it fall out gradually at first and then in a cascade of strands in the shower, the brush, on shirts and furniture? Cut it short before it begins to fall out? Shave it off right away? Shave it later? Cover with a wig? Cover with a hat? Go bald?

For me, the day my hair really started falling out was a terrible one. There’d been a few more strands than usual on my hairbrush, but that morning the hair came off in clumps in the shower. I vividly remember standing under the pouring water and crying until the water started to go cold. These moments of extreme sadness and self pity are blessedly few and far between, but thinking of them can be like reliving the experience all over again. I finally stepped out of the shower, found more hair on my towel as I dried off, and promptly tried out the hats and scarves my friends, family, and hospital had known I’d need.

My hair had given me a lot of grief during my youth—I could never get my wavy hair to succumb to the hair dryer and curling iron. I wanted those Farrah Fawcett wings. I ended up with a weird look that didn’t do much for me, especially when combined with ultra-large and thick glasses and a bookish style. I grew into the waves, of course. I learned how to scrunch and how to straighten, why layers were a nightmare, and why bangs looked silly.

I’m sure these are lessons a lot of us can relate to. Hair matters.

I was reminded this morning of just how much it matters when I stopped by one of my kid’s schools and the secretary commented about my hair and said, “I’m so glad everything is over!” My hair these days does not resemble Farrah Fawcett’s 70s feathers or Jennifer Aniston’s Friends cut or Dorothy Hamill’s bob — all looks I’ve tried — as much as it comes close to Halle Berry’s fabulous 2017 Oscars style — lots of curls and lots of volume. Older women tell me I should cut it shorter and close to my head. They are probably right.

But as a woman with metastatic breast cancer, what was the right thing to say here? The secretary knows lots of people who know me. People who I will see around the neighborhood, some who understand what it means to have metastatic cancer and some of whom don’t or can’t.

If my hair tells the story that “everything is fine” should I let that be the end of it? Do I say, “My hair looks good, but I’m still receiving treatment” and get that instant blank and closed-off look from the nonbeliever? Do I launch into a small lecture about how metastatic breast cancer does not have a cure? Do I let her know that possibly 30 percent of women diagnosed with early stage breast cancer end up with metastases from which there is no cure?

Hair tells a story. There are times when I wish it was just hair.