My left hand is shaking as I write this.
But I’m not scared. I don’t have a nervous tick or a reaction to writing again on a disease I have and will likely die of. I have a brain tumor sitting on my right frontal lobe, which diminishes the agility and responsiveness of my left arm and hand to what the nerves in my brain can tell them to do. I have stage iv breast cancer and have for two years now. It’s not pleasant, my symptoms and the side effects of my cornucopia of drugs are no fun, and the first six months after my diagnosis were a hellscape of panic attacks and bad luck. But at this point? Well, you get tough and stand up to it the best you can – even when you know the worst is probably still around the corner – or you don’t.
And that’s the problem I have with a lot of cancer stories. They take the personal and turn it into the pathetic. I’m not advocating for a perspective that demands cancer patients be inhuman fighters or warriors or never weak or scared – I have my share of weepy “this sucks, I’m horrified” days, believe me – but I am an advocate of being honest. And honestly, most cancer stories suck, even those about stage iv. They’re often self indulgent, whiny, and unproductive. They push us into the role of victim when our coping mechanisms (I am extremely organized) work pretty well at keeping the beast at bay most of the time. As a cancer patient, you have a choice: suck up your fate and don’t let cancer steal anymore of your energy or time than it needs to or don’t. The latter is what frightens me.
But that’s what I like about the story I’m writing on now. PBS’ episodic version of Siddhartha Mukherjee’s elegant 2010 book Cancer: The Emperor of all Maladies, directed by Barak Goodman and produced by Ken Burns, is both scientific and personal, yet does not turn the personal into a sympathy circus. But it’s not your feel good, cancer gives you perspective and power narrative either. It’s something different that hones in on the fear and strength of those who live with cancer and how both are affected by the science behind the disease and its treatment. Mukherjee, Goodman, and Burns have crafted an impeccably researched, thoroughly engaging, and cinematically masterful account of cancer’s story – from its earliest recordings in Ancient Egyptian hieroglyphics to its most recent and exciting developments in the field of immunology. Interspersed with these historical narratives and scientific data are incredibly personal stories of those with cancer, which gives that science and those histories a face that that we must reconcile – or, as the case often is, cannot reconcile but must accept – with the crushing fear of the word “cancer.”
So don’t get me wrong, cancer is scary. But part of this series’ mission is to, as Goodman told me in a recent interview, “wrestle to the ground this scary thing … by demystifying it” with a heavy dose of science. That heavy dose of science that he and his co-creators are after recalls what I learned in my first few weeks post-diagnosis: cancer, really, is not one disease. It is constituted by a number of diseases, all marked by abnormal cell growth, originating from and threatening multiple parts of the body. The analysis and treatment of these growths vary wildly yet are lumped under a convenient moniker: cancer. This amalgamating makes the disease itself hard to handle. If cancer is everything, how can we beat it?
Mukherjee, Burns, and Goodman’s responses to that question come in those three hour and a half episodes. The depth of the featurettes – from what Goodman calls the “fascinating adventure” of cancer research to the sculpted animations of that research that “bring science to life” to the poignant silences that pause patients while recalling their stories in medias rex – take the sensation that confronting cancer is like “going into the fog” and turn it into something embodied, textured, and real. Goodman’s view that the highly specialized medicinal side of cancer research can be “as much art as anything else” avoids over sentimentalizing the courage and perseverance of patients who feel at times a little too much pressure to be positive in the face of a disease that does not respond to reassuring hugs or sympathetic smiles. Yet it also leaves room for that courage and positivity: sometimes you just gotta don pink angel wings and feather boas and march your way down Boylston with the rest of the Avon supporters. One of my best friends did this every year with a gigantic smile on her face all day; she died from breast cancer in November 2013. That’s the kind of story Mukherjee’s is – and I’ll never stop missing her, but that’s the kind of story I like.
And this kind of story is refreshing for patients like me because it not only reminds the world of the darker, less glamorous side of our disease, but also because it pairs the unavoidable heaviness of that with research and courage. Cancer isn’t an ennobling yet enigmatic condition that spawns Shailene Woodley-like heroines who exude keen intellect, biting wit, and tremendously styled hair like most of us exude degrading and painful symptoms (see: left side unresponsiveness and other, fun side effects like nausea and atrophy). But it’s also not an excuse for whining or self-indulgence or defeat. Sure, you have your “screw it, I’m staying in bed and watching Parks and Rec” days (I juts had 5), but enjoy that TV show. It’s still YOUR time and your TIME, not cancer’s. Cancer is what Mukherjee, Burns, and Goodman say it is: a highly personal and scientifically fascinating mistake our bodies sometimes make that deserves our attention. But, especially for us in the trenches, not all of it.