Lights, Camera, Cancer

As published on Cure Today… but WITH the f-bombs…

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 6 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, about 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 fkn 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 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 Berkely 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 oncamera 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 slash 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 fucking 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 shitshow 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 emotional pain – often calls for privacy. Not only because I don’t 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 fucking 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.

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6 Responses to Lights, Camera, Cancer

  1. mmwm says:

    The last part about fearing your ego/self will disappear with your body … You probably know this poem but I think of it always when I think about death and that loss:

    Perfection Wasted by John Updike

    And another regrettable thing about death
    is the ceasing of your own brand of magic,
    which took a whole life to develop and market —
    the quips, the witticisms, the slant
    adjusted to a few, those loved ones nearest
    the lip of the stage, their soft faces blanched
    in the footlight glow, their laughter close to tears,
    their tears confused with their diamond earrings,
    their warm pooled breath in and out with your heartbeat,
    their response and your performance twinned.
    The jokes over the phone. The memories packed
    in the rapid-access file. The whole act.
    Who will do it again? That’s it: no one;
    imitators and descendants aren’t the same

    Liked by 1 person

  2. Bonnie says:

    Disappear? I don’t believe any of us disappear because we all leave and will leave something behind. We all just live for the moment and make memories..Love you Jen…to the moon and back

    Liked by 1 person

  3. Cha Cha says:

    I want to leave a reply. I want to say Oh Jen, you started leaving your mark the day you were born. But I emphasize with you on feeling you would become forgotten. I feel that way too.But here is what I’m going to say…Your life is not over. Memories are still yet to be made. Don’t confuse your legacy with your life. Every day we walk this planet in search of its meaning and what our meaning is in it, we have the opportunity to change something or someone. That is how we are never forgotten. That is how are lives have meaning. By the people we touch. Good and bad. I know you’ve had dreams that might never come true, but that doesn’t mean we stop dreaming. You are changing things by writing this blog. Live your dreams, love your life. That is what’s going to make it all worth it.

    Liked by 2 people

  4. Ed Goble says:

    I’m sorry Jen that either one of us has to go through shitty part of life. I ‘ve had 8 primary Melanoma’s other the past 7yrs, 1 stage four and the others stage 3 and 2. All I can say is CCKMA…. Cancer Can Kiss My Ass! The only thing that is real is living in the moment. And to cope like I tell my two boys is having PMA, Positive Mental Attitude. Thank you for your posts. Be Well and FishOn.

    Liked by 1 person

  5. Another amazing essay on your superbly heartfelt experiences. Keep walking… your journey is long and important, in great part because you can tell it so well.

    Liked by 1 person

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