How and why I've chosen to live my cancer in the public eye.
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
One of the running jokes that has been born in the midst of this long, mostly unfunny battle that melanoma has waged on my body started at my weekly poker game. This particular poker night wasn't so different from our regular game - a decadent meal, proper yenta banter, and 20-minute long hands with so many wild cards that everyone winds up with a royal flush so that we have to split the pot six ways - except there was a full camera crew and Oscar nominated director capturing our schtick on film. We went about our thing until Lucy cleared her throat... "Ok, everyone. It's time to talk about Jen's cancer."
The conversation that ensued seesawed back and forth between hilarious and gut-wrenching. It was here that, for the first time, I got to hear the story of my diagnosis from the perspective of those who love me. Until that night, my family and friends had kept me largely sheltered from the thoughts and feelings they experienced when they learned that I was sick. So here I was, choking back tears as my aunts and their poker crew recounted exactly where they were, who they were with and what ran through their heads when they got THE phone call. How my godmother was instructed to go to my mother's house so that I could Skype and deliver the news to them while they were together... how my mom crumpled as soon as I hung up... how the phone chain went down.
As for the aforementioned running joke, my friend and poker cohort, Cindy, began to talk about my blog, and how helpful it was for her in truly understanding both the logistics and the emotional duress I was under. Then she said, "Man, Jen. You're a great writer. I wish you'd been blogging for years."
I threw my hands up and shrugged. "Um... I have. It's just that nobody read my blog until I got cancer."
We all laughed. But inside, I was also cringing a little. It was true. I had spent the previous decade traveling and living abroad, posting meticulously crafted travel blogs. And while some of my close people followed my journeys through my words and photos, it wasn't until I started my cancer blog that ALL of my people (as well as thousands of strangers) really sat up and started to pay attention.
The same kind of went with film. I had been writing and pitching screenplays for almost fifteen years with very few bites. And then I got cancer and decided that I wanted to make a documentary about my experience. A few phone calls and coffee meetings later, I had a development fund from a top-tier cable network, with talk about finishing the film with Sundance and Academy deadlines in mind.
When I requested permission to start filming within the hospital I am being treated at, their media department enthusiastically cooperated. Knowing that I was OK with discussing my cancer openly, they felt comfortable reaching out to me for other media opportunities. I was the subject of two major news stories, several magazine articles and a patient outreach video for a health insurance company. I often joked that I was being pimped out as the poster child for melanoma treatment.
Through my own film project, I got to attend the Society for Melanoma Research's annual symposium and interview the top melanoma researchers in the world. This was unprecedented; the SMR had never allowed filming at one of their meetings before. I arranged to meet with Dr. Arlene Sharpe, the woman who discovered the PD-1 pathway, which led to the drug Opdivo (nivolumab), one of the drugs that saved my life. When we met, I cried. She teared up, as well; I was living, breathing affirmation of her life's work.
I then got to meet Dr. Jim Allison, the man who, several decades ago, was sitting in his lab in Berkeley and thought, “Hmmmm.... instead of trying to create drugs that kill cancer, maybe we should go back to basic biology and try to create drugs that allow the immune system to kill cancer.” Because our film team had already wrapped when he arrived, we would be unable to conduct an on-camera interview with him. Lo and behold, he would be traveling to New York the following week, and I suggested that instead of a “talking head” interview, perhaps he could join me during my infusion. And so it came to pass that the “godfather of immunotherapy” sat knee-to-knee with me in my tiny infusion cubicle, watching as the drugs that were the product of his genius coursed through my veins - something that, as a lab scientist (as opposed to practicing oncologist), he had never witnessed.
It's been over a year since we started filming. When I first proposed the film, I was doing so in the wake of my amazing response to immunotherapy, which after just three months, rendered me essentially “cancer free.” We were making a film about this renaissance in cancer treatment that was happening in real time. I was able to document infusions and oncology appointments where I learned that I continued to be N.E.D. (no evidence of disease).
The problem was that all of my
story was backstory. I was already “well.” And as exciting as it was for my health to be in tact, the fact that there was no footage of me “sick” meant that there was no story arc, no suspense. So we started talking about getting some newly diagnosed patients on camera, people who were to undergo the same “miracle drug” combo I was on, so we could capture the side effects, the emotional roller coaster and, most importantly, moments where people who were facing the grim prognosis of metastatic melanoma finding out that, like me, the immunotherapy had annihilated their disease.
We used the last of our development money to hire an editor, so that we could stitch together enough footage to help us secure further funding. And then we got our camera crew on board for a deferred pay shoot of my final infusion/one-year scan results appointment. And so it was that, with cameras rolling, I found out that my cancer was back in full action. As completely devastating as this news was, the filmmaker in me was like, “OK. Here is the drama. Here is the story arc.
The production team we are working with in LA sent me a camera and tripod and, for the past nine months, I've been self-filming my treatment, my side effects, my doctor appointments, interviews with friends and family and these weird, often very sad, late-night confessionals. We've had proper teams on board to film interviews with me and things like scan results, where my own emotional investment compromises my ability to “direct” the scene. Our film is no longer primarily about this new advent in cancer treatment... Now, it is an intimate portrait of a young(ish) woman who is battling melanoma during the FIRST TIME IN HISTORY when melanoma might not be a death sentence.
The past few months have been a total s***show for me, as far as the cancer is concerned. After failing several targeted therapy treatments, I am now back on that “miracle combo,” and hoping like hell that I respond in a similar way that I did the first time. I continue to live my diagnosis very publicly (obviously, as you are reading this post), and we are still in the process of securing funding for our film. That said, there are days, weeks, when I hide away from the world, refrain from pressing record. Because pain – especially the emotional pain – often calls for privacy. Not only because I don't want people to see it, but more because sometimes I need NOT to intellectualize it, creativize it... the act of documenting it allows me to distance myself from the pain, and sometimes, I just need to feel it.
Sometimes, when I watch back the footage of this past year, I cringe at the prospect of audiences watching a 50-foot close up of my tear-contorted face, snot dripping from my nose. More often, I view it with pride, as it enables me to see what a fighter I have been through this nightmare. But the feeling I most frequently experience when I watch these scenes from my life with melanoma is a sense of purpose. I understand the profound value in telling my story. My hope is that telling my story will dispel the myth that melanoma is “just skin cancer,” that it will propel parents to be more diligent about putting sunscreen on their children, that it might shed some light or offer some hope to the so many others out there doing battle with the beast
. Any of these things are worth the sacrifice of my own vanity.
As for my ego, that's another story. One of my greatest fears is that, if I lose this fight, I will disappear. Being faced with death has augmented my desire to make my mark. And so all of these words I write and all of the scenes that I film serve this other, bigger purpose... to preserve my persona, my humanity and my voice for posterity.