Jen Sotham is a freelance journalist and screenwriter/director. She was working as a university professor in Busan, South Korea, where she lived for almost a decade, when she was diagnosed with metastatic melanoma in 2014. Still doing battle with the beast, Jen has since returned to New York, where she has been using her voice to share her story through film, essays and her blog, jenvscancer.wordpress.com
Because cancer is an invisible disease, most patients can keep it under wraps when out in public, but there are some instances when we need to play 'the cancer card.'
As I was in the midst of writing this blog post, which was slated to be titled Playing the Cancer Card, fellow CURE blogger Mike Verano published a post. It's title: Playing the Cancer Card. Oh well, I thought, Scratch that. Time to move on to a new topic. And then I read his post, a wonderfully humorous piece on when it's appropriate to "PCC". It made me realize two things, or to put it more accurately, the dichotomous nature of a cancer diagnosis. On one side of the coin is the universality — the fact that two people with completely different diagnoses and prognoses would come up with blog posts of the same exact title. On the flip side, the uniqueness of each person's experience with cancer, as evidenced by the fact that this identical set of words can have such dissimilar meanings for each of us.
Throughout my stage 3 diagnosis, I kept my battle with melanoma — the lymph node metastasis, the surgeries, the radiation — on the quiet. The only people I really told were my core family and friends back in N.Y., my boss (out of necessity) and a handful of my close friends in Busan. I even went so far in my quest for privacy that I turned off my Facebook Wall, so that one of my less Facebook savvy family members wouldn't accidentally post about my illness on my timeline thinking it was a private message and blow up my spot. During this time, I did play the cancer card a bit, but only to guilt the members of my band into learning a few cover songs I was hankering to play.
When my hand was forced by the stage 4 progression, and I needed to jump ship on my life as a long-time expatriate in Korea, I hung it all out there on the line. I needed to tell everyone, because I couldn't just disappear. I went about as public as a non-celebrity can go. In terms of asking for help, similarly to Mike Verano's experience, I didn't need to play the cancer card. I had drawn it, and that was enough for my close people to step up.
My sister worked tirelessly to find me the right oncology team. My mom and her cohorts worked on figuring out how to get me insured as quickly as possible. My aunt scoured the internet for the newest treatment options.
As for my people in Busan: aside from proper goodbyes, all of my loose ends got tied. My friends George and Courtney took over my apartment lease and transferred the sum of my deposit to my bank account. My friend Mike helped me craft a crowdfunding campaign. The owner of the dog sanctuary I volunteered for ensured that all of Oscar's shots and paperwork were up to snuff. My homegirls helped me pack, leaving with duffel bags full of my nicer clothing, cosmetics, and books, and garbage bags full of everything else to drop off at the local church thrift store. My boss and my boss' boss colluded to make sure my resignation from my job was legit, so that I'd get all of the 'retirement' money due to me, along with airfare home.
I was afforded a going away party in the form of a fundraiser for a local orphanage that my band was slated to play the Saturday before my departure. A lot of people showed up. And they danced. And we cried. And then we danced some more.
It wasn't until my departure that I finally needed to play my cancer card, and I only played it out of desperation. Oscar and I were taken to the airport by three of my closest friends. I had spent as much time in the last two weeks on the phone with Japan Airlines as I had Skyping with my family, to guarantee that my furry adoptee was able to get on that plane with me. He had to — there was no alternative. At the check-in counter, I was faced with the rude awakening that it was going to cost as much to check my guitar as it had cost me to check Oscar. I unsuccessfully tried to negotiate a baggage fee waiver with an airline manager, and then reluctantly whipped out my credit card.
Then, it was time to put Oscar's crate on the belt, say my final goodbyes and head through security. The JAL employee behind the counter looked up with trepidation at the manager I had been dealing with, and said a few words in Japanese. The manager shook her head and gently told me that my dog was 10 kg over the weight limit. This was it. My moment of desperation. I turned to the manager, looked into her eyes and put my hands on her shoulders. I spoke slowly and clearly, knowing that English was not her first language.
"Listen. My dog needs to get on this flight. I am leaving Korea forever. I am very sick. I have cancer, and I have to go home to my family."
She seemed to understand the gravity. But then nodded slowly and asked, "So you want to cancer your flight?"
This was both the worst and the best lost-in-translation moment of my entire almost decade in Asia. Perhaps it was because my simultaneous tears of agony and madhouse-worthy laughter scared the living shit out of her, but the manager gave the counter clerk the nod, and Oscar's crate was tagged and sent onto the plane.
In the 20 months since that flight, I have played the cancer card few enough times to count on one hand. (Unless you count playing it during arguments with my mom, for which I'd need to borrow a few limbs to count). All of those times have involved flights, and all have been legit.
Just yesterday, I flew from New York to Austin. I don't believe in (nor can I afford) purchasing bulkhead or exit row seats in advance. I simply request them when I check in at the gate and am usually accommodated if an extended leg room seat is available. This time, I was really rolling the dice, as my lymphedema has gotten pretty bad lately. This meant that being confined to a regular seat at high altitudes would likely result in swelling so bad that my shoes wouldn't fit. When I explained this to the flight attendant at JFK, she was able to put me into an empty two-seat row. I spent the flight in an L-shape, on my back with my legs extended up the wall of the plane. I hadn't even needed the cancer card — the lymphedema card was enough.
I got to the gate for my connecting flight in Atlanta, which was already set to board when I arrived. The woman at the counter shook her head and told me that, unfortunately, it was a full flight. After hitting a few keys on her computer, she said, "I doooooo have one bulkhead seat, but it's a middle seat. Do you want to give up your window seat?"
"Yes!" I nodded emphatically. "As long as I can extend my leg, a middle seat is fine."
I boarded the plane with my new seat assignment, only to discover that it was not, in fact, a bulkhead seat. It was just a plain old middle seat. And the woman sitting in the aisle seat next to it was heavy enough that she had to order a special seatbelt extension. This put me in a very awkward position. I try to always be compassionate to others. I didn't not want the seat because of this woman, I didn't want the seat because I was promised more leg room. But when I looked at the seat and shook my head, I knew how it must look to both the woman and those seated around her, and I felt like a jerk. I approached a flight attendant and quietly explained my situation. And I sure as hell used the word 'cancer' as I pointed out the compression stocking on my leg to avert any suspicion as to why I was refusing my new seat assignment.
The stewardess, after whispering that she was a cancer survivor herself, told me to wait there until all the passengers were onboard, and then she'd see what she could do. And so there I stood, looking totally douchey to all of the passengers who had observed the scenario without knowing that I was a card-carrying member of the cancer club. When the plane was all loaded up, every single seat was full, including the one I had traded in. I was forced to squeeze myself into the tiny space, and with no room left in the overhead compartment, I sat with my laptop and backpack piled on my lap to give my leg a teeny bit more space. I cried like a baby for the first 30 minutes of the flight, not because of how cramped I was, but because my cancer had made me look like a total jerk.
I can't speak for other patients, but I'm not a fan of playing the cancer card. For me, the idea of playing the card when it's not absolutely necessary would feel too much like a jinx, like I'd have to knock on wood or something. And when it is necessary, it invites the exact brand of attention I despise, the kind that comes with pity eyes. There are times when, like Mike Verano, I've whipped out some cancer-card humor, mostly related to how I've got the card up my sleeve just in case I ever get busted for pot. But for the most part, I'd prefer to keep my cancer card tucked in between the business cards and receipts in my wallet.