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A Film About Cancer That is Also About You

The world’s most celebrated documentarian takes on the “emperor of all maladies.”

Documentary filmmaker Ken Burns

During the first of three episodes of Ken Burns’ latest documentary, former Director of the National Cancer Institute Dr. Vincent DeVita, shares a memory of his aunt who had developed cancer when he was a child. “She was hidden in the attic,” he recounts with equal amounts of sadness and horror. It’s hard to believe that memories like these are as recent as they are. Just a few generations ago, most cancers were incurable and those with the disease were frequently thought of as contaminated. The very word “cancer” was uttered in hushed tones as if to isolate it from the rest of our day-to-day conversations.

Ken Burns Presents Cancer: The Emperor of All Maladies A Film by Barak Goodman, is a six-hour documentary series directed by award-winning filmmaker Goodman and executive produced by Burns, and based on the book by Siddhartha Mukherjee, airing on PBS from March 30 through April 1. Interweaving a sweeping historical narrative with intimate stories about contemporary patients, the series manages to highlight the latest scientific breakthroughs that may have finally brought us within sight of lasting cures. But even more valuably, it shows us how far we’ve come as a culture in regards to how we talk about cancer. Just think about the morally complex characters of The Big C (2010-2013), 50/50 (2011), The Fault in Our Stars (2014) or even Breaking Bad (2008-2013) and juxtapose them with the weepy, monochromatic protagonists of Love Story (1970), Brian’s Song (1971), Bang the Drum Slowly (1973), Beaches (1988) or Dying Young (1991) of the last few generations and you’ll begin to see how differently those with cancer as part of their identity are viewed. For those who now have the disease, cancer no longer defines who they are.

That is not to say that the present moment is cause for celebration. As professor of oncology and pathology at Johns Hopkins University, Bert Vogelstein says near the end of the three-part film, a revolution may have happened when it comes to our understanding of cancer, but we’re still very much in the midst of a revolution of treatment. I spoke to Ken Burns about how the story of the fastest growing disease on the planet remains an optimistic one.

What drove you to tell this story?

My mother got cancer when I was a boy. There never was a moment growing up when she wasn’t desperately ill. She died when I was just a few months short of my 12th birthday. So, I don’t think I’d be doing what I do—making history come alive—if that had not happened… Once I read Siddhartha Mukharjee’s book, The Emperor of All Maladies, I just said, ‘I have to do this’…We are all touched by this disease, and yet we don’t know about it.

What were the creative conversations like in pre-production?

We had this great roadmap, which is this Pulitzer Prize winning nonfiction book by Siddhartha Mukharjee. And we realized that the task we were about to undertake was hugely daunting, insofar as we had to cover all of this history and all of this science, and we do it a way that would keep a general audience interested.

There seems to be a new kind of cultural conversation around all things cancer. We no longer reserve hushed tones when talking about it. How do you feel about being part of that conversation?

Well, I’ve had this sort of charmed professional life, in which the subjects I pick—usually randomly with my head down and my nose to the grindstone in rural New Hampshire—suddenly seem to be what people want to talk about: whether it’s the Civil War, baseball, jazz, World War II, the national parks, Prohibition, the Dust Bowl, the Roosevelts… I felt this about cancer, but I think cancer is filled with a lot of false dawns, you know? At the end of the 19th century, in the 1950s, 1960s, then we declare war on it to find a cure in the 1970s, and it didn’t happen. And yet, right now without losing the scientific skepticism everyone is required to have, you do feel that we’re on the threshold of great changes. I think the culture has, in some ways, sensed this, however unconsciously or not, and that’s why it’s manifesting in the conversation. That’s good. That’s what I’m interested in doing with this documentary series—having a conversation with my fellow citizens about the past, which informs the present and the future.

[quote position="full" is_quote="true"]Right now without losing the scientific skepticism everyone is required to have, you do feel that we’re on the threshold of great changes.[/quote]

There must be a balancing act: on the one hand, wanting to avoid telling a depressing story, and on the other, not wanting to embrace a sugary optimism. How do you plot a middle ground?

It was really important for us to plot a middle ground. If you’re a good scientist, 95 percent of your experiments fail, right? And you’re waiting around for the one, two, or three percent that actually suggest a direction you should go in. That’s actually not dissimilar to the documentary filmmaker who has a 40 or 50 to 1 shooting ratio. It’s like the block of stone delivered to the sculptress’s studio and you hack away and you don’t think about the rubble on the floor, but that’s the negative space of creation. So we had to do a lot of work, we had to try to remind people that this is a tough subject. Now human beings could stay wrapped up in the fetal position and that would be very understandable once you perceive that in this life you don’t get out of it alive. But we don’t. We build buildings, and we write symphonies, and we cure cancers. So, I think with us, we just adopted our own sort of artistic skepticism combined with the scientific to say, ‘You know what? These failures, these false dawns have actually, in many cases, led to stunning successes.’ And the presumption that we had a success here was going to lead to further successes there is usually met with abysmal, disappointing failure. But we had to represent all of that in the film. I think we’ve done a good job and didn’t dumb it down. It is a detective story and you’ve got to follow the clues. And it’s exciting in that way.

When I was watching the film I was thinking about my first job out of college at the Museum of Jewish Heritage, a Holocaust museum that goes out of its way to give a three dimensional portrait of those who went through the experience by not merely treating them as victims, but as active, complex, multi-dimensional subjects.

It’s so interesting that you’re bringing this up on the 70th anniversary of liberation of Auschwitz.

I guess this is my longwinded way of asking; how important it was to you and Barak Goodman to really humanize your subjects that were going through cancer?

I think you hit the nail on the head. That’s exactly what we talked about… We embedded Deborah Dixon, a renowned cinéma vérité director and cinematographer in two places for the most part: at Johns Hopkins and a regional medical center in Charleston, West Virginia. One is an elite research hospital—cutting edge, 30 doctors focused on one disease—and another that has one cancer doctor handling 50 different cancers. She [Dixon] just earned the trust and was a fly on the wall. We follow some that are just excruciatingly sad and others that are amazingly hopeful. That’s what life is.

[quote position="full" is_quote="true"]If this is the emperor of all maladies, then we are all its subjects. Now, do you want to be a happy slave or an ignorant slave, or do you want to rebel?[/quote]

What did you learn while overseeing this project?

Learning about Sydney Farber, the counterintuitive idea that you have a hospital for kids with leukemia. They are all going to die: 100 percent mortality rate. So what does he want to do? He wants to poison them and indeed, hasten their death. And yet, trial and error, all of a sudden some kids go into remission for a while and then they relapse and die. Six kids go into remission for a while and meanwhile, in other places, they’re trying combination therapies with this, that, and the other thing. All of a sudden, we have something called chemotherapy that works and bumped childhood leukemia into a 90 percent cure rate with amazing, amazing results when it used to be 100 percent mortality. Then he realizes he needs to get advertising so he bands together with Mary Lasker, a society woman, and they raise money, and they invent the Jimmy Fund. All the stuff that’s in our lives, and we don’t ask the question, ‘Where did that come from?’… Harry Truman once said, ‘The only thing that’s really new is the history you don’t know.’ I love that, because we live in a media culture in which we are buried in an avalanche of information, most of it’s superficial; most of it is conventional wisdom. When you are able to penetrate and get a little bit deeper, you have the opportunity to just blow people’s mind, to rearrange their molecules, and they just go, ‘Wow, I had no idea.’

Beyond the fact that people will learn a lot watching this film, what do you really hope its impact will be?

Let me back up a little bit and say, my second daughter, who’s now 28, Lily, was, as a little baby, terrified of the vacuum cleaner. She had to be asleep. She had to be out of the room. She had to be out of the house when the vacuum cleaner was running. One day, when that beast was roaring in the middle of the room, she came to the door and walked through the room and sat down on the vacuum cleaner. In our family, when we talk about having to face uncomfortable things, we talk about ‘sitting on the vacuum cleaner.’

I hope that people will shed this superficial need to sort of pretend that if they don’t think about it, they won’t get it, and realize that if Siddhartha Mukharjee is right, if this is the emperor of all maladies, then we are all its subjects. Now, do you want to be a happy slave or an ignorant slave, or do you want to rebel? And what I would hope is that this film helps light a small mind on fire of someone who then becomes a cancer researcher. Or you don’t have to go and get a degree. You can just participate. Maybe the 5K run you said you were going to do for the cancer that took your aunt, or maybe it’s just putting in five bucks to the Cancer Society or Stand Up to Cancer or to a particular breast cancer or brain cancer. Maybe it’s just knowing and feeling like, ‘If I’m informed, I’m going to ask a lot of questions and not just sort of shrivel into a ball if it happens to me.’ Let’s just review the odds. One in five men will get cancer, one in three women will get cancer. We do not have the luxury of ignoring the story.

We all need to sit on the vacuum.

We all have to sit on the vacuum. That’s exactly what this is. I use Lily’s metaphor all the time, because I can think of no better thing. I watch as most people don’t want to deal, and yet they’ve had to deal. The people that we meet in this film, they’re the ones who went and sat on the vacuum cleaner. I’m very excited to share that.

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