Heather Caro was a 32 year-old wife and mother of two kids, excited about starting her new job as a nurse in the ICU, when she found a pea-sized lump on her breast. Her battle with cancer meant she had to miss work, and she hadn’t worked at her current job long enough to qualify for the job protections associated with the Family and Medical Leave Act, so she lost her job and her health insurance.
In the five years since her diagnosis, Caro has become an outspoken advocate for providing safeguards and protections for cancer patients, and her formidable leadership has gotten others’ attention. She opened up for an interview with People Magazine, gave an acclaimed Ted Talk, and is now the honored guest and speaker for Lolly’s Locks’ 6th Annual DC Gala, The Hair Affair DC, on May 3, 2018.
She took some time to answer questions with Lolly’s Locks. A lightly edited Q and A follows.
Thank you so much for agreeing to keynote the Lolly’s Locks Hair Affair! We’re honored to have you and hear your story. How are you doing and feeling now?
Heather Caro: I am doing great. It’s been a little over 5 years since my diagnosis. There is a myth with cancer that it’s cured or not cured; you either win or lose. It’s really more akin to being diagnosed with diabetes. Once you are diagnosed, it’s always something that is present in your life. I’m 5 years out and there is no evidence of disease, but I have the rest of my life to deal with the repercussions of treatment and to make sure I am dealing with my health as best as I can.
You’ve gone public with your story of resilience and overcoming adversity: amidst your cancer diagnosis you lost your job and your health insurance. How has your own experience shaped your involvement with the advocacy movement?
HC: I started out my career [as a nurse] in oncology. I had done all the 5ks and 10ks and had all the t-shirts, and thought I understood what it was to go through cancer treatments. I had no idea that I could be fired for having cancer. You think that you are doing everything you are supposed to do to make sure your family is set up with insurance, and you have a good job — I had no idea how fast all of that could slip away. It was an important story for me to tell: that if it could happen to me, it could happen to anybody, and we need more safeguards in place.
So much is lost to cancer, and you’ve talked about how you’ll never got the body back that you lost from the disease. Lolly’s Locks understands that well, which is part of our focus to get women battling cancer high-quality wigs at no cost. How did you cope with the changes, and what is your advice for other women who face the harrowing experiences of losing their hair and their breasts?
HC: I remember specifically looking into the mirror after losing my hair, eyebrows and eyelashes and feeling like I was anonymous. It was a very eerie feeling to look into the mirror and not recognize yourself. I lost the belief that my body was healthy and strong and infallible. Disease became part of my identity too and it never was before.
I think giving yourself grace and realizing that it’s a very difficult thing to go through no matter what. You eventually develop new parts of yourself and the process is really difficult, whether or not you are ever free of that diagnosis again. The most beautiful thing that you can find is confidence. There are so many great products and options out there. I had my eyebrows microbladed. It’s almost a gift in this way: when everything is stripped away from you, you then have the opportunity to build it the way that you want. And that is not all bad.
So many families seek a new normal in the midst of a life-altering cancer diagnosis. What, if anything, kept you and your family strong during your diagnosis and treatment?
HC: The best thing that we did was to be really honest about it. Probably that was easier for me because I worked in the medical profession. Life and death issues were something that I dealt with all the time. We got [our kids, Maddie and Teague] into counseling very early, so they had an outlet.
We helped them to understand that we were going to get through no matter what happened. We made it a safe space to be afraid and to cry — that was all a normal response to this really difficult situation.
Maddie is now turning 16, Teague is 11. They are such great kids. I feel so lucky. That’s the thing about cancer: every year is a bonus. I dont think I’ll ever lose that feeling of being grateful, to have Mondays. To make breakfast. To clean the house. It can just be a gift to have everyday life.
Everyone has their own personal cancer. Cancer is a euphemism for the worst thing you can imagine. Whether your personal story is a terrible divorce, or a loss of a loved one, everyone can identify with those circumstances. But not everyone has it on public display. That is one of the difficult things with cancer too: you are very visible going through something horrible.
I hated going to the grocery store. I didn’t want to see one more subtle head tilt in these strangers’ eyes. Even on days I was strong enough to do something, I wouldn’t. It could be very secluding. That is one of the real gifts that Lolly’s Locks can give to someone. It doesn’t take away what someone is going through to put a wig on and makeup, but it does give people the ability to be front and center with it.