Ten years ago, doctors told me that I had locally advanced breast cancer. They also told me that if I went through surgery and chemotherapy and took quite a few years (at least five, maybe more) of recurrence-prevention drugs, I’d have a reasonable shot at survival.
A good chance of not dying! In the movies, doesn’t the heroine rejoice at this news? Doesn’t she embrace her life anew, flooded with gratitude at how lucky she is?
Well, I didn’t feel lucky. I felt astonished, exhausted, and, in various ways, gypped. I ate well, did yoga, and barely took aspirin. But somehow, I’d still be getting chemo drugs in my veins and gearing up for years of prescription pills, along with possible side effects of all these things. I was 40 years old at the time and didn’t have kids yet. Suddenly, family planning, too, was laden with complications I’d never imagined.
“Go through all this and you probably won’t die soon!” did not fill me with celebration. I had never thought I might die soon until this point, until the extensive treatment plan, before all the changes I faced. So the prognosis that I would (probably) be spared imminent death felt less than inspiring.
The years since my diagnosis, treatment, and return to a cancer-free life have turned out to be both heartbreaking and meaningful for me in ways I didn’t anticipate. During these years, other young women with breast cancer, dear friends I’ve made within the young-survivor community, were not spared. I’ve lost people whose initial prognoses were at least as promising as mine. But I’ve also made it a priority to be present as a support for people in cancer treatment and for those whose treatments have stopped working. In so many ways in life, we have the power to offer comfort, help, or simple connection. I relearn this lesson every day.
But none of this has been easy. In addition to the unfathomable losses of friends, I’ve had ongoing recurrence scares and significant treatment-related side effects.
I’ve also struggled with seemingly mundane issues. A big one for me is that it’s been hard to see exercise as anything other than a chore, rather than—as it was before cancer—something that helped me relieve stress and decompress.
I get a reasonably painful shot once per month. I have multiple scans and blood draws every year. I am (still) on recurrence-prevention treatment that reduces my estrogen levels and has caused me to gain weight in ways that are uncomfortable to me; it also takes a toll on my hair, skin, and bones. (It’s instant aging through chemistry, basically.) I have many surgical scars, some of which are painful and, at times, limit my range of motion.
All of this makes exercise physically more difficult as well as less fun than it used to be. When I was first diagnosed, I almost never had random aches and pains. Now, my left hip hurts on most days, and my neck is often stiff. My right shoulder aches, still, from the surgery I had during treatment to remove lymph nodes‚ some of which contained cancerous cells, under my arm on that side.
But I think the weight gain is my biggest exercise challenge—and a new one for me. Before my treatments, weight was something of a non-issue in my life. I didn’t (and still don’t) own a scale, but if my clothes felt a little tight, it never felt like a huge deal. Those days are gone. I gain weight far more easily than I ever did and lose it far more slowly, if at all. Inside and out, my body seems so different than it used to be. Classes with mirrors drive those changes home—but so does the basic feeling of my body in exercise clothes. I wish I didn’t care about these aesthetic factors, but I’d be lying if I said I did not.
On top of all of this, doctors and scientific research have taught me again and again that regular exercise can also help prevent cancer recurrence. This is great to know—that is, until working out becomes just another item on the “keep cancer away” to-do list. There I am, trying to ride a stationary bike or swim or do yoga—but I feel achy, self-conscious, and also, sometimes, worried. Am I doing “enough”? The optimal amount of exercise generally recommended for the average adult is more than I usually can get, what with long work hours and a generally busy life. Is my chance of recurrence increasing because I stopped showing up for Zumba? These types of self-badgering questions come to my mind consistently.
But a few months ago, my feelings toward exercise started to shift for the first time in a very long while—when I discovered a dance-party event that helped me find my groove again.
It’s called No Lights No Lycra (NLNL). It originated in Australia in 2009 and has spread across three continents. It’s not a class; there’s no teacher, no set music, and no steps to learn. And it’s definitely not a club, as there’s no alcohol and you’ll never find someone else dancing up on you or in your “zone.” The event gives you an hour and change worth of songs, played by a DJ, to dance to in complete freedom, with only enough light in the space to ensure that dancers don’t crash into each other.
In the darkness, no one can see you, judge you, or critique what you’re doing and how you’re moving. In fact, no "just watching" is allowed. If you're there, you have to participate. It's the kind of dancing so many of us did in our bedrooms when we were kids, with our favorite songs playing; you just feel the pleasure of music and movement.
Now, I show up almost every Tuesday night to the church basement in which my local NLNL is held. I let the music wash over me, throw my arms up and my head back, and dance. I think, or I don’t think, depending on the song that’s playing and what kind of day I’ve had. I shake my shoulders and twirl. Once in a while, I’ll notice later on that my face is actually sore from smiling. A few times since discovering NLNL, I’ve found myself dancing in place in random shops when a song I like comes on in the background.
The other night, when the NLNL session ended and the lights came on, I asked some of my fellow attendees why they come.
One young woman (the type, I noticed in the light, who looks chic even after a workout) told me that the unexpected aspects of NLNL are always so interesting to her—like the surprise of getting lost in or liberated by a song you weren’t expecting to move you so much. The woman recalled that a while ago, for example, after a breakup, she lost it during Pulp’s “Common People.”
One shy-looking guy shared that he had a lifelong fear of dancing in public and that this was the perfect safe space to address it. He described dancing as “such a natural form of self-expression,” but noted that we often don’t do it if we feel people are watching.
Then I asked our DJ for the night, Jerry, why he’s involved. “‘Dance like no one’s watching’ is actually an important thing to do,” he said. “I felt so liberated by the dark and the privacy when I first started coming, and it became something I really wanted to do.” He used to make song requests on our local NLNL Facebook page, which eventually led to a DJ role.
Life is about tending to our priorities, and goals, and health, sure. And I, of course, want to keep my body as strong and healthy as I can. But there has to be room for lightness and play.
I realized what NLNL helped me with was making space for movement that’s less results-motivated and more about freedom and celebration. It put me back in touch with my body and helped me redeem it as a joyful place. It’s even helping me to rediscover the pleasure in the other forms of exercise I’d always enjoyed.
I didn’t know how much I needed this until I found it. As long as the music keeps playing, I’ll be there, jumping up and down—feeling very much alive.