I am 27 years old and I've had cancer three separate times.
My first was bone cancer -- I killed it with fire. The second was thyroid carcinoma, which I cut from my life (and my neck) permanently. And just when I thought I was out of the woods, bone cancer came back like a bad ex-boyfriend and paid a visit to my lungs. By the third time, you start to let go of the prevailing popular opinion that cancer is a battle with only two outcomes -- cure or death. There is a third, secret option, relatively unknown to the general healthy public: you learn to live with it.
Some cancers just can't take a hint. You can poison with chemo cocktails, butcher with surgery, burn with radiation, and they still won't leave you alone. You can't get a restraining order against a tumor, I've been told. My cancer can't get enough of me. My cancer keeps coming back. And so I've decided to accept my illness in order to move on with my life -- instead of cure or die, I've chosen truce. I'll keep my life -- and cancer can have supervised visitation rights.
The problem is, once you make the decision to become 'frenemies' with your illness, you accept being defined by it, and cancer has a nasty reputation. If one were to Google my name, cancer comes up before fashion design, the other thing that used to define and consume my life. I am no longer Kaylin the fashion designer, I am Kaylin with cancer. I'm proud to identify as a survivor and advocate, so why do I still feel ashamed to have cancer?
There is a slick 12-inch scar snaking across my rib cage that looks as though a samurai sword slashed through me -- a battle wound, to be sure, but not from Ichi the Killer -- this scar is from cancer. Slow, boring, ugly cancer. The most uncool serial killer ever. I am always tempted to embellish my cancer stories to match the level of emotional turmoil they elicited. "These scars? I was shanked in prison!" ultimately fits better than, "Oh these? I had chest tubes put in to drain excess fluid from my lungs before thoracic surgery." Both hurt equally. Getting shanked just sounds sexier.
My thyroidectomy in 2010 left me with another gruesome scar I like to call the "Colombian necktie" that looked bizarrely as though my neck was smiling. One day at the grocery store, an intimidatingly large Samoan gangster with neck tattoos and a platinum grill asked me quite pensively how I got my neck gash. I was tempted to quip, "The Joker wanted to put a smile on my face but he missed!" Instead, I replied with an understated "cancer." His face changed instantly from a look of mild curiosity to abject fear, as if he'd seen a ghost (I'm not that pale).
"Are you beating it?" he asked solemnly.
"Probably," I replied.
He nodded and walked away uncomfortably. I spooked him.
Should've gone with the Batman joke.
--In Susan Sontag's essay "Illness as Metaphor," she observes:
"Contact with someone afflicted with a disease regarded as a mysterious malevolency inevitably feels like trespass; worse, like the violation of a taboo. As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have. The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize."
Sontag asserts that the healthiest way of being ill, and regarding illness, is the one most purified of any metaphoric thinking. As an avid writer I can say this disease would be way too boring without a good metaphor every now and then, but perhaps we can begin to challenge some of the prevailing negative myths about cancer -- for instance, that cancer is a death sentence. My personal experience is that I've had to learn to live with it -- three times and counting -- and it's changed the trajectory of my entire life. It's about life, not death.
In 2011, MTV's World of Jenks approached me about filming a documentary series on my life as young adult cancer survivor. The crew followed me for more than a year, as I moved from San Francisco to NYC to pursue my career and a fresh start (the season premieres tonight, March 4). They wanted to emphasize that cancer was not my identity -- I was a fashion designer, writer, friend, daughter and sister before cancer ever pushed its way into my life. There are moments when I question my choice to share so much of my private life with viewers, but I remind myself that I participated in this project to promote cancer awareness and help change the way people perceive this disease.
One of the easiest ways of slaying the cancer stigma is by opening up and sharing our personal experiences. With understanding comes acceptance. I'd love to get to the point where our young adult cancer (YAC) community can bare our scars and feel proud to tell people: "I have cancer."
Kaylin is profiled in the MTV show World of Jenks. The second season premieres tonight, March 4.
Watch the World of Jenks (Season 2) trailer here:
Check out Kaylin and Andrew Jenks on HuffPost Live:
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