My self-image came from my hair, not my chest.
I stood in front of the bathroom mirror, ready to start my mission.
Armed with the world’s tiniest straightening iron, a round brush, and an assortment of balms and creams, I charged forward into an epic battle with the wild mass of short, frizzy curls sprouting from my scalp.
My aim was clear: These unruly tresses had to be wrestled into submission.
I didn’t always have curly hair. Most of my life I had long, slightly wavy hair that I loved. All that changed a few months earlier when, at age 37, I found a lump in my breast and was diagnosed with stage 2 invasive ductal carcinoma breast cancer.
On top of that, I tested positive for the BRCA2 gene mutation. This is what caused my breast cancer to take hold at such a young age. It also put me at risk for other cancers, including ovarian, peritoneal, and pancreatic.
Next came a grueling regimen of chemotherapy that made me lose my beloved hair, followed by a bilateral mastectomy with lymph node retrieval and reconstruction.
Shortly after, I learned my cancer had completely responded to treatment, and I received the glorious “no evidence of disease” diagnosis.
While this was the best possible outcome, I found moving forward after my battle with cancer almost as difficult as treatment.
Everyone else seemed to be breathing a sigh of relief, but I still felt anxious and fearful. Every twinge of back pain, headache, or cough sent me spiraling, terrified my cancer had returned or spread to my bones, brain, or lungs.
I was Googling symptoms almost daily, trying to alleviate my fear that what I was feeling was more than just an everyday ache. All I was doing was scaring myself even more with the dire possibilities.
Turns out, this is a common, yet often overlooked, experience for cancer survivors.
“When your treatment is over, your experience certainly isn’t over,” says Dr. Marisa Weiss, breast oncologist, chief medical officer and founder of Breastcancer.org, a nonprofit organization that provides information and support for breast cancer.
“Most people look at breast cancer as a mountain to climb and get over quickly, and everyone assumes and expects you to return to normal, and you don’t. Depression is just as common at the end of treatment as it is at the beginning of treatment,” Weiss says.
I wasn’t only struggling mentally. Coming to terms with my new post-cancer body proved just as challenging.
Though I’d had reconstruction after my mastectomy, my breasts looked and felt nothing like they once had. Now they were lumpy and numb from the surgery.
My torso was covered with scars, from the angry red slash below my collarbone where my chemo port had been inserted to spots on either side of my belly where postsurgery drains once hung.
Then there was the hair.
When my bald scalp started sprouting a thin layer of downy fuzz, I was thrilled. Losing my hair was almost harder for me than losing my breasts in their natural state; I derived far more of my self-image from my hair than my chest.
What I didn’t realize initially was how chemo would change my hair.
As those sprouts began to thicken and get longer, they turned into the tight, coarse curls often referred to as “chemo curls” in the cancer community. This hair I’d waited so long for was nothing like the tresses I had before cancer.
“A lot of people who’ve been through this feel like damaged goods. The loss of hair is profoundly upsetting, and the altered or loss of breasts, as well as the shift for many people into menopause because of treatment or removal of ovaries — and just knowing you’re a person who’s had cancer — changes how you see the world and your own body,” Weiss says.
As I attempted to style my newly growing hair, I learned all the techniques that worked on my old, less-curly mane no longer applied. Blow-drying and brushing just turned it into a poofy mess.
Even my tiny straightening iron, purchased with the hope that it could handle my still-short locks, was no match for these curls. I realized I had to totally rethink my approach and alter my technique to fit the hair I had now, not the hair I had before cancer.
Instead of fighting the curls, I needed to work with them, adjust to their needs, and accept them.
I began asking curly-haired friends for tips and trawled Pinterest for anti-frizz how-to’s. I invested in some fancy products designed specifically for curly hair, and I ditched the blow-dryer and straightener in favor of air-drying and scrunching.
As I made these changes, I realized something. My hair wasn’t the only thing affected by cancer — practically everything about me changed after my experience with the disease.
I felt a new sense of fear and anxiety about death that colored the way I saw the world and hung over me even during happy times.
I was no longer the same person, body or mind, and I needed to adapt to the new me the same way I’d come to accept my curly hair.
Just as I’d sought new tools to tame my frizzy curls, I needed to find different ways to process what I’d been through. I’d been hesitant to ask for help, determined to quietly handle my post-cancer anxiety and body issues on my own.
That’s what I’d always done in the past. I finally realized that just like with the tiny straightener, I was using the wrong tool to solve my problem.
I began seeing a therapist who specialized in helping cancer patients navigate life after the disease. I learned new coping techniques, like meditation for quieting anxious thoughts.
Though I’d initially chafed at the idea of adding another pill to my daily regimen, I began taking anxiety meds to help me handle the feelings that therapy and meditation couldn’t.
I knew I had to do something to alleviate the overwhelming fear of recurrence that had become a major disruption in my life.
Just like my hair, my post-cancer mindset is a work in progress. There are days when I still struggle with anxiety and fear, just as there are times when my uncooperative hair gets swept under a hat.
In both cases, I know that with the right tools and a little help, I could adjust to the new, accept, and thrive. And I realized that suffering in silence with my anxiety made as much sense as applying my previous straight hair techniques on my newly curly locks.
Learning to accept that my life had changed — I had changed — was a big step toward finding not only a new sense of normal after cancer, but also the kind of happy, fulfilled life I thought I’d lost forever to the disease.
Yes, nothing is the same. But I’ve finally realized that’s OK.