Review: Decoding Annie Parker

I finally saw Decoding Annie Parker and I have to say that my reaction was similar to Bryna’s over at Blogging BRCA. Go read her review here.

I was disappointed in this movie. It focuses mostly on Annie’s life with little attention paid to Mary-Claire King and the science behind the discovery of BRCA1. The film shows Annie learning about genetics, and it would have been easy for viewers to learn about it along with her: all the filmmakers would have to do is show someone explaining it to Annie or have Annie explain it to someone else. We get some of that, but mostly we see Annie bent over big books and constructing genetic models to help herself understand heredity. As viewers we don’t learn much.

There’s also little sense of why the discovery was so scientifically significant. I remember watching the nightly news back in the early 1990s and seeing the excitement around the discovery on television, even though at the time I had absolutely no idea that I was a carrier. It would have been easy to cut in some footage from the time in a montage of sorts, or have Annie watch Tom Brokaw reveal the discovery and explain its importance on the national news.

At the same time that they shortchange viewers on the science behind of BRCA mutations, the filmmakers missed a real opportunity to explore the life of a woman in genetics who triumphs over the misogynist tendencies of the scientific community, something King herself is interested in. King is a truly exceptional woman and groundbreaking scientist not only for her role in the discovery of BRCA1 but also her other work in genetics, yet she’s barely shown despite the fact that the film promos suggest the movie is equally about Parker and King.

Moreover, Annie Parker is a strange figure to focus on in some ways. As played by Samantha Morton, she seems smart, witty, tenacious, and very likable–all good qualities, to be sure. However, in the film, Helen Hunt (playing Mary-Claire King) calls Parker “a remarkable woman.” After watching the movie, it’s not clear to me what makes Parker so special beyond her great personality and unlikely survival after three (!!!) separate cancer diagnoses. Her story is similar to so many BRCA+ women and other cancer families. We see Annie doggedly researching cancer genetics at a time when the medical establishment didn’t recognize it as a viable field of inquiry, but what did her research actually accomplish? Not much.

I’m not saying that the film shouldn’t focus on Annie Parker or that she’s not worthy of our attention. Her story on its own may very well be worth a film. However, this film does a pretty flimsy job of connecting her to the promise of its title–to decode her genes in the discovery of BRCA mutations. In fact, King never decoded Parker’s genome, Parker’s genes were not part of the discovery of BRCA1 at all, and the two never even met; there’s no real tie between them beyond the fact that King located BRCA1 and Parker is a carrier of BRCA1. If you’re not going to focus exclusively on King and want to include a narrative about a woman with a BRCA mutation, then why not use a woman from one of the cancer families that King actually studied?

The filmmakers did invent a scene in which Parker and King meet. In it, Parker rushes in late after King gives a scientific lecture and introduces herself. King brushes her off impatiently and walks away, leaving Parker looking disappointed and awkward. King then returns a moment later and tells Parker that she’s remarkable before walking away quickly again. That’s it.

Quite frankly, King comes off as a bitch in the scene. Here viewers have just watch the funny and tenacious Annie Parker suffer through the deaths of her mother and sister from breast cancer, receive her own diagnoses of breast and then ovarian cancer, endure the truly horrific side effects of chemotherapy, and cast off an immature cheating husband, who then himself develops cancer and dies. And then this fictional King can’t be bothered to even have a polite conversation with her.

This is completely at odds with the reputation of the real Mary-Claire King, who is known for being a friend of the underdog and running a particularly diverse, inclusive lab–a rarity in the sciences, especially in the 1980s and 1990s.  This woman has revolutionized the study of breast and ovarian cancer, and had a palpable effect on the lives of millions of BRCA+ women the world over who now have the chance to avoid the genetic fates suffered by their foremothers. Mary-Claire King is the kind of hero you rarely see–one that actually exists. Yet here she’s depicted as at best aloof, at worst just plain cold. The filmmakers never contacted King when making the movie. I find that very strange considering that they were making a movie about her and she’s always been accessible to the BRCA+ community. Most of all, I find their depiction of her as an icy lady scientist in this fictional scene appalling and terribly cliche.

I see why BRCA+ women have been promoting to this movie. We want a voice in the mainstream. We want some cultural artifact that explains our situation–something that we can point to when explaining things to people and be like “see that? that’s what I have, that’s what my family has been through, this is why I do what do even if it seem extreme to you.” This is one reason why most BRCA+ women were mostly supportive of Angelina Jolie’s NYT op ed. Decoding Annie Parker isn’t a terrible movie, but the filmmakers really missed their chances to make it a great one or at least a good one.

 

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Susan Gubar’s Memoir of a Debulked Woman

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Although mutations in the BRCA1 and BRCA2 genes cause breast, ovarian, and many other cancers, I have tended to discuss mostly breast cancer here at the risky body. There are many reasons for this, including the fact that breast cancer poses the highest risk for BRCA+ women and that I am currently working towards lowering my own personal risk of breast cancer, so it is constantly on my mind.

Still, when I saw that feminist literary critic Susan Gubar’s latest book, Memoir of a Debulked Woman (2012), is on ovarian cancer, I wanted to read it so that I could better understand the disease, its culture, and the experiences of ovarian cancer patients. The fact that Gubar is a feminist academic pioneer writing on a topic relevant to me as a BRCA+ woman made the book even more appealing. Yet I have put off discussing it here, because I feel inadequate to the task of reviewing it. It’s a difficult topic to discuss, to say the least, and because there’s less of a discourse on ovarian cancer I feel like I don’t have the right lexicon for discussing it.

Memoir of a Debulked Woman is a detailed account of how a very intelligent, inquisitive mind grapples with being tethered to a diseased body with a terminal diagnosis. Gubar is a remarkable woman and this is a remarkable book.

Consider the way she describes her relationship with her husband, Don:

“Should Don or I die–how stupidly put!–when Don or I die, the physical departure would be, will be devastating. Yet surely that devastating physical separation cannot leave us or others bereft of our persistent relatedness to each other or of a profound and ongoing awareness of our persistent relatedness to each other. The location of that awareness remains nebulous in my mind, but not therefore less manifest. After the diagnosis and quite spontaneously, I found myself earnestly promising one and then the other of my distressed daughters, ‘I will love you beyond my death. I will love you from another place that you will palpably feel, and feel to be me loving you.’ Albeit confused, that declaration seemed to speak of the intense emotions sustained by the urgent desire to continue loving the beloved until and after death. I want to live as long as the people I love live. We will live so long as the people we love remember we love them” (27).

The memoir is filled with beautiful passages like this that evade the stereotypical rhetorics of hope and warfare that characterize so much cancer writing.

As a BRCA+ woman, I can relate to many things and situations that Gubar describes: stigma and shame, endless doctors, constant waiting, the barrage of tests, feeling the need to be your own advocate but feeling too stunned to do so, feminist suspicion of the medical industry, the sense of moving from the land of the healthy to the land of the sick. But there are many things that I cannot relate to: preparing for death, horrific surgeries that make prophylactic mastectomy look easy, terrible complications, etc.

Gubar details the barbaric procedures she undergoes and the painful side effects and complications that she endures in an effort to “[tell] the truth about the experiences of the female body” (31). She does not spare the humiliating details. Such candor is difficult to for writers to sustain and difficult for audiences to read, but it is incredibly important to tell the truth about women’s experiences with cancer. Although it’s a cliche to call cancer patients brave for living with their diseases, reading this memoir I can’t help but think that Gubar is incredibly brave to give such an honest, graphic account of what it’s really like to have ovarian cancer.

The book left me feeling angry, fearful, and despairing. Angry that women with ovarian cancer don’t have better treatments available that will enable them to maintain a high quality of life or potentially save their lives. Angry that  women don’t have better options for detection and prevention of ovarian cancer. Fearful that, as a BRCA+ woman, Gubar’s realities lay in wait in my own future. Despairing because it seems so unlikely that these problems will be solved in the near future or that Gubar will ever be cured of ovarian cancer.

Gubar was first diagnosed in November 2008. She completed this book in December 2010. I read in an interview that she was in remission, again, in summer 2012. I wish I knew how she was doing now. I have always thought highly of Susan Gubar’s work, and this memoir seems to me to an appropriate and important capstone to her career.

You can learn more about Gubar, her memoir, and ovarian cancer in a great segment from NPR here. Gubar is also writing a series of wonderful articles about living with cancer for the NYT here.

Anti-feminism in Kevin Davies’s and Michael White’s Breakthrough

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One word: Meh. Then a few more: what the hell?

First, the “meh.” Kevin Davies’ and Michael White’s Breakthrough: The Race to Find the Breast Cancer Gene (1996) is a boring book, even for someone as thoroughly obsessed with BRCA1/2 as myself. Breakthrough was published in 1996, so it must have been rushed into publication pretty fast after the discovery of BRCA1 in 1994. In fact, it barely covers the discovery of BRCA2–by the book’s end, BRCA2 has been “localized” on chromosome 13, but not yet located (as it would eventually be in 1996). The book may have been stronger if the authors had taken some more time to write it.

Davies and White trace the competition among scientists to find the breast cancer gene in the early 1990s, but while the discovery itself is historically important, many of the players involved are not that interesting. What’s more, the authors largely adopt an “objective” journalistic tone and they frequently miss the chance to engage in some down and dirty cultural analysis or critique. For example, they discuss Mark Skolnick’s founding of Myriad Genetics, but largely let him off the hook for allowing the profit motive–AKA his greed–get in the way of affordable mass testing and research. Gene patenting was the hot button BRCA+ issue for over 15 years before the Supreme Court invalidated Myriad’s patents on our data in 2013. Davies and White barely touch the surface of this issue.

Much of the information that the authors present on breast cancer and BRCA1/2 is out of date by now. It’s been 17 years since it’s publication, so that’s to be expected. Still, the book is often painfully and self-consciously 90s with its frequent comparisons of BRCA1 to HIV, Hillary Clinton’s attempts to establish universal healthcare in the United States, and an overwhelming sense of optimism. All that’s missing is references to the “global village” and a rhapsody about the World Wide Web. The authors believe that the discovery of BRCA1 is going to revolutionize breast cancer prevention, detection, and treatment. In the end, I’m struck by how much hasn’t changed about breast cancer treatment in nearly two decades.

Now for the “what the hell?!” parts. The book ends with a rumination on the state of breast cancer culture in 1996. The authors opine that breast cancer has taken center stage and is receiving more funding than ever. And then, bizarrely, they start attacking feminism.

For instance, in one baffling passage they note: “Curiously, the preventive mastectomy option is significantly more common in the United States than in any other country in the world, but the reasons for this are unclear. It has been said that the preventive mastectomy response smacks of hysteria or is an expression of some convoluted radical feminism” (245). The passage begs the questions: who actually said these things that have “been said”? The passive voice of this quote (“it has been said”) makes it so that Davies and White can make this ridiculous argument without seeming to make any argument at all. I can only imagine that the convoluted logic here is that feminists supposedly reject femininity and therefore want to destroy the secondary sex characteristics that seem to define femininity. That, of course, is absolutely absurd, since feminists have long fought for women to have the freedom to make uncoerced decisions regarding their bodies and health.

And then things get more weird. The authors critique Gloria Steinem for not speaking out more about her own experiences with breast cancer, as though she’s obligated to discuss the details of her health with the entire country. And this bit of what-the-fuckery:

“According to conservative author Midge Decter, NOW is simply not interested in breast cancer, ‘Theirs is a leftist, radical agenda–not a woman’s agenda,’ she claims. ‘And what’s wrong with cancer as a cause from the point of view of the feminist movement is that they can’t identify anybody who did it to them. They’re therefore just not interested.’

Feminists have been used to taking control of their own destiny, of fighting and issue head-on. When it came to breast cancer, they were trapped by their own philosophy. Feminist lore during the 1970s made it clear that the way forward was for women to look after themselves and to control their own future, so any movement endeavoring to funds from the establishment to help cure women of a disease over which they have naturally had no control was anathema to the feminist ideal” (256-7).

WRONG, WRONG, WRONG. Davies and White need a lesson in breast cancer history: as I’ve said before, second wave feminism started the breast cancer movement via the women’s health movement of the 1970s, which was an explicitly feminist enterprise. This is well documented. Furthermore, feminism is not about individual women taking control of their individual destinies. It’s about achieving equality and opportunity for women as a class–that is, for all women, not just individuals. For this reason, feminists have a huge stake in breast cancer culture and research.

It’s also pretty funny to hear the National Organization for Women being called a “radical” organization, when it is frequently attacked for being too mainstream. It is, in fact, a “liberal feminist” organization and by definition not radical. But hey, what else can you expect when the authors consider an anti-feminist wingnut like Midge Decter to be citable expert. Decter, by the way, wrote a book called The New Chastity and Other Arguments Against Women’s Liberation (1972) and founded the reactionary Independent Women’s Forum. She about as much of an authority on feminist attitudes towards breast cancer as Anne Coulter or Fox News.

Adding to the annoyances of the book, Davies and White seem to have an anti-abortion agenda as well, and the issue of abortion pops up repeatedly throughout the book in odd places.  It turns out Frances Collins, another BRCA1/2 researcher and current director of the National Institutes of Health, is also anti-abortion. They all seem concerned that BRCA+ women will start aborting BRCA+ fetuses, because clearly women can’t be trusted to make sound ethical decisions about their bodies and their fetuses. This fear has not panned out over the last 17 years at all.

There are more problems with this book, but I’ll spare you the details. To summarize: Breakthrough sucks and is annoyingly anti-feminist. Learn from my mistakes and don’t read it. It’s a waste of time.

BRCA+ Epistemology and Masha Gessen’s Blood Matters

I picked up Masha Gessen’s Blood Matters after reading a glowing review of it in the NYT. It’s a nonfictional exploration of the cultural politics of genetics that begins with her mother’s death from breast cancer and her own deleterious BRCA1 test results. Along the way, she discusses subjects as varied as what makes a person decide to undergo genetic testing and the treatments available for people with extremely rare inherited mutations. She interviews scientists, doctors, family members, advocates, patients, and many others from Russia, the United States, Canada, and Israel. Wide-ranging, elegantly written, analytically astute: this is the BRCA+ book I’ve been hungry for. I devoured it in just a day. Go read it. Go read it now.

Much of the book involves Gessen’s search for answers to the thorny ethical, practical, and cultural questions that genetic mutations give rise to, so that she can make informed decisions about what to do with her new-found knowledge of her BRCA+ status. Like Joanna Rudnick, Gessen starts off not wanting the preventative surgeries that her doctors and seemingly everyone else recommends, but she ultimately ends up having prophylactic bilateral mastectomies with DIEP FLAP reconstruction. She has also documented her decision-making process in a series of articles for slate.com, pieces of which are included in this book.

Although most of the book in written in a journalistic mode with Gessen observing and recounting scenes in laboratories or clinics, some of the moments that I liked most were when she zooms in on her own personal experience. She talks about the loneliness of being BRCA+ and her envy for those with support communities to help them get through it, like a group of cousins who are all “in it together.” She discusses her hesitancy to dive into the online BRCA+ community, which she seems to find surreal. She mentions that she got tested for her mother’s mutation because she was confident that she’d test negative. She describes the inadequacy of gene therapy and overly chipper counselors who cock their heads in perpetual sympathy as they carefully phrase medical protocol. She becomes too anxious to do self-exams, because she fears her body’s capacity to develop cancers. She traces the mutation as far back through her family tree as she can by piecing together family lore. I had to resist the urge to write “me too!” repeatedly in the margins.

Most important, she briefly discusses the shift in identity and world view that a BRCA+ diagnosis brings:

“I belong to a generation that grew up believing we were shaped by love, care, or lack of it–or perhaps even the number of books on our parents’ bookshelves. But we will go to our graves believing that it is a combination of letters in our genetic code that determines how we get there, and when. Our concept of the stuff we are made of will have undergone fundamental changes” (14).

YES. THIS A THOUSAND TIMES. Testing BRCA+ changed my life utterly and irrevocably. One day, I was a normal healthy person. The next, I transformed into a pathologized being who grapples with obscure family histories, an army of doctors of varying skill and humanity, a capricious insurance industry, fear of cancer and surgery, social stigma, and the weight of irreversible medical decisions. But the changes wrought by knowledge of being BRCA+ go far deeper than that. The way I think of myself, my body, my family, my life, and existence in general has shifted dramatically.

After discovering my BRCA+ status, I went through not only an existential crisis, but also profound epistemological and ontological shifts. I had a narrative in my head about my life and my place in the world that must be rewritten to accommodate the fact that the threat of cancer has been lurking within me since the moment of conception. It seems as though I never stood a chance, like something out of a futuristic naturalist novel.

Since I got my test results and entered what Gessen calls “the cancer caste,” I’ve said the words “biology is destiny” and “I am not the universal subject” many times half-jokingly. I now see the world through BRCA+ lenses and I inhabit it within a deviantly BRCA+ body. I reject the genetic testing cliche that “knowledge is power,” because although I have always been BRCA+, my discovery that I am BRCA+ has been epistemologically ravaging and subjectively devastating. It has changed me in ways that I did not want to change.

However much cold comfort it may be, Gessen’s book suggests that BRCA+ women are the vanguard patients of the medical industry. We struggle with knowledge and choices that future generations may take for granted as so-called “personalized medicine” will likely require routine testing for genetic anomalies as part of basic care. Every human being has genetic mutations. If knowledge of mutations for hereditary diseases (or, as Gessen discusses, hereditary behaviors like alcoholism and aggression) becomes widespread, then everyone will become a mutant and being a carrier–of BCRA1/2, but also illnesses like Alzheimer’s, Parkinson’s, Lynch syndrome, etc.–will lose its stigma and hopefully its shattering effects.

Joanna Rudnick’s In the Family

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I finally watched Joanna Rudnick’s documentary about being BRCA+, In the Family (2008). It is, obviously, required viewing for anyone with a BRCA mutation, but it’s hard to watch. I started to cry while the title credits began tracing out the cancers in Rudnick’s family and I didn’t stop until I had watched every bonus feature on the DVD.

The film begins with Rudnick’s horror at the idea of prophylactic surgery. She’s young and single; she wants to keep her breasts and ovaries until she can marry and have kids. As she begins to interview women with breast cancer, families with BRCA mutations, doctors, scientists, and various BRCA advocates, she seems to slowly realize that she ought to have a prophylactic mastectomy and oopherectomy. Still, as the film ends, she drags her feet.

I wanted to know what happened to Rudnick in the five years after the film’s premiere in 2008. After some quick googling, I found that she found a supportive partner, married, and had two daughters. Watching her film, it became clear to me what an important voice she is for the BRCA+ community. In it, Mary-Claire King tells two young women that they each have a BRCA mutation and she repeats several times that everything is going to be okay, that these women will not get breast cancer. Rudnick’s happiness–her supportive partner and chubby cheeked girls–gives me hope that King is indeed correct: that BRCA+ women are not doomed to repeat their foremothers’ experiences. Rudnick, it seems, has beaten the odds and so can we.

So I was disheartened to find that Rudnick was recently diagnosed with breast cancer at the age of 39. On a post over at the PBS blog, she writes: “The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it.” After treatment, she had a double mastectomy. As she was recovering, Angelina Jolie’s NYT article was published.

In the Family captures the horrors of preventative surgery, but also provides strong arguments for the necessity of it. Rudnick interviews women with breast cancer who swear that if they could go back in time to have the prophylactic mastectomies and oopherectomies that they would in a heartbeat. But Rudnick herself is evidence that hindsight is 20/20: surgery provides the best protection for BRCA+ women, but many women don’t want to do it or can’t bring themselves to pull the trigger. And who can blame them?

I hope Rudnick is doing well. In making her film and speaking out about her experiences, she has done an incredible service for other BRCA+ women. She has sacrificed her own privacy to provide us with a glimpse into the everyday life of a BRCA mutation carrier. I am grateful to her.