Why Surveillance Sucks: Exhibit 17

This morning, while I’m still in bed, and George is telling me about his silly dream, a nurse calls to tell me the results of my latest transvaginal ultrasound, a scan I take every six months to screen for ovarian cancer.

“We did see some cysts on your ovaries,” she says.

In an instant, my heart drops. Maybe I have ovarian cancer? At the least, this sounds like it will require surgical follow up. Am I going to die of ovarian cancer? Less than half of women diagnosed with the disease survive.

“They are the type of cysts we expect to see on someone who is ovulating,” she adds. She pauses. It lasts only a second but feels like an eternity.

I have no idea what that means.

“So your scan was normal and there is no cause for concern,” she says.

Talk about burying the lede.

And then I am supposed to go to work, like it is a normal day.

My Jolie Media Blitz

I had an exciting May 14. I woke up in the morning and read five messages from friends on my phone telling me that Angelina Jolie had announced her prophylactic mastectomy in a New York Times op-ed. I’d thought it would be just a normal day of reporting my forthcoming book Pandora’s DNA: How the breast cancer gene changed everything, but by evening I’d done several video appearances, ending up on All In with Chris Hayes (above). I also wrote about the public and media reaction to Jolie’s mastectomy for Today and Slutist, and appeared on CBS2 New York and a Japanese morning show.

You can also catch me on Huffington Post Live:

Stop Using Jolie’s Surgery to Condescend to Women

Screen Shot 2013-06-25 at 11.11.09 AMI’m tired of journalists treating women like idiots.

When Angelina Jolie announced that she carries a harmful BRCA mutation that will dramatically up her chances of developing cancer, I felt horrible for her, since I also carry and understand the burden of a BRCA mutation, but I also felt elated that she’d raised the profile of hereditary breast cancer and prophylactic mastectomy.

Then the “against-the-grain” news stories started rolling in. Many pieces missed a chance to inform the public about the BRCA 1 and 2 mutations, which can be passed on by both men and women, and account for some 5-10 percent of all breast cancer cases and all ovarian cancer cases although less than 1 percent of the population carries them. Instead, they chose to sensationalize Jolie’s choice to have a prophylactic mastectomy – a procedure that has been performed for women at high risk for breast cancer since at least the 1970s and is well-accepted as a valid treatment by doctors who specialize in BRCA patients.

How stupid do they think we are? It’s a major medical procedure, not a manicure. I can’t help but feel that the old insidious stereotype that women are irrational, easily panicked, susceptible to celebrity influence, and prone to emotional decisions underscores these worries about “unnecessary” mastectomies and a “panicked” horde of women refusing to come to terms with their cancer risk.

Read the rest of the piece over at Slutist!

Jolie’s Mastectomy Decision Leaves No Place for Judgement

Screen Shot 2013-06-25 at 11.04.30 AMAngelina Jolie’s admission that she underwent a preventive double mastectomy has a lot of people talking – and while raising awareness is invaluable, it inevitably becomes fodder for critics.

I should know: Three years ago, at the age of 28, I had a prophylactic double mastectomy and reconstructive surgery after learning I had a mutation of the BRCA1 gene.

I wrote about my experience for a number of websites, including TODAY, and tasted the vitriol and hate that can rain down from the Internet. Commenters made irrelevant remarks about my appearance, blasted me for wanting to have biological children despite my genetic mutation, and reassured me that I didn’t really need a double mastectomy because cancer is a fungus that can be cured with baking soda.

Read the rest of my piece over at Today Health! 

The Curse: A Freeform Game About BRCA

family

At long last, I’ve finished The Curse, a freeform game about hereditary breast cancer, the BRCA mutations, and making decisions around these issues.

It premiered at the Danish gaming convention Fastaval in 2013, where it nabbed an Otto nomination for best larp script.

I wrote The Curse in the Fastaval style. This means that it features a strong game master who cuts together the scenes like an improvised play. The game attempts to tackle a serious topic — BRCA mutations and the decisions they spark — with nuance. It’s not meant to be fun in the funny ha-ha sense, but it’s meant to be interesting and provide insight into a situation that many women face.

It’s free to download and distribute so long as you don’t try to make money off it. If you run or play it, I’d love to hear about your experience at LizzieStark@gmail.com.

FREE DOWNLOAD (PDF) OF THE CURSE  HERE.

 

THE CURSE AT A GLANCE

Would you cut out healthy body parts if you thought it might save your life?

Rita and Elle bear a heavy legacy: a mother who developed breast cancer at 30 and died of ovarian cancer 20 years later. When it comes to their family tree, that’s just the tip of the tumor. There’s a BRCA mutation lurking in the family DNA, an inherited genetic error that dramatically ups a woman’s chances of developing aggressive breast and ovarian cancer at unusually young ages. After Rita and Elle test positive for the family mutation, they can choose to live with their fear or cut it out with a scalpel.

Will they mutilate themselves to avoid their mother’s fate, or stay strong and face down dread? How should the men in their lives deal with the news? Will this condition mutilate their romantic relationships as well?

This freeform game is about making life-altering decisions in uncertain circumstances and passing on the horror of that choice to the next generation. A scenario about fear of death, vanity, and relationships under pressure.

Factfile

Time: 4-5 hours.

Number of players: 4 +1 game master. Preferably two women and two men.

Genre: Cancer narratives, relationship drama, realism

Player type: You want to explore some challenging emotional territory, including cancer, unclear consequences, and amputating body parts you’re fond of. And you don’t mind talking about breasts. 18+ only, please.

Game master type: You’ll be the players’ guide and teach the techniques of the game. You’re equally happy pushing the players when they need it, or standing back and watching them twitch like fish on hooks.

The Next Big Thing

The Next Big Thing is a literary game of tag in which writers answer questions about a work-in-progress. I was tagged by fiction writer, essayist, and awesome person Matthew Salesses.

What is the working title of your book?

Pandora’s DNA: How the breast cancer gene changed everything

What is the one sentence synopsis of your book?

I tell the story of the so-called “breast cancer genes” —  the morass of legal quandaries, scientific developments, medical breakthroughs, and ethical concerns that center around the BRCA mutations — through the lens of my family.

Where did the idea for the book come from?

In some form, this book has been following me my whole life — the huge amount of breast and ovarian cancer in my family tree has had a big impact on me. The first “real” short story I wrote imagined the life of my great aunt Trudy, a nurse who died of breast cancer at age 31. I wanted to know why she didn’t seek treatment even though she knew she had cancer. After I cut off my healthy breasts at age 28, I had a much better idea.

I’m still asking questions about the cancer in my family tree, only now I’m interested in how the legal history and medical history that surrounds the BRCA mutations has shaped my treatment, as well as in the emotional truth of what it means to be a person dealing with all this.

What genre does your book fall under?

Narrative nonfiction.

Which actors would you choose to play your characters in a movie rendition?

I’d like Xena Lucy Lawless to play me, and for Idris Elba to play my husband. Because, come on, theres no film that can’t be improved with a judicious application of Xena Lucy Lawless and Idris Elba, right?

How long did it take you to write the first draft of your manuscript?

To answer this would imply that it’s drafted. But since I intend to make my delivery date — deadlines are next to godliness for journalists, after all — it will have taken about ten months.

What other books would you compare this story to within your genre?

If I’m allowed to shoot high: Siddhartha Mukerjee’s The Emperor of All MaladiesRebecca Skloot’s The Immortal Life of Henrietta Lacks or Susan Gubar’s devastating Memoir of a Debulked Woman.

Who or what inspired you to write this book?

My family.

What else about your book might pique the reader’s interest?

Silicone injections adulterated with snake venom! Hitler’s mom’s early chemotherapy at the hands of Jewish doctors! Lumpectomy pioneered by economist John Maynard Keynes’ younger brother! Nose jobs from 1000 BC!

 

Check out my latest narrative nonfiction book Leaving Mundania, a romp through the surreal world of grownup make believe.

Two Years After Mastectomy


Two years ago, I had my healthy breasts cut off to reduce my sky-high risk of breast cancer. Last year, I wrote a post chronicling my feelings one year out, but two years out, my feelings have changed enough to warrant another (and perhaps final) post.

The Background

To recap, for those of you who are just joining us: I have a genetic mutation that brings with it a 40-85 percent lifetime risk of developing breast cancer (compared to a 12 percent risk in the general female population) and a 40-60 percent lifetime risk of developing ovarian cancer (compared to a 1.5 percent risk in the general population).

In addition, breast cancer in families with BRCA mutations tends to develop early and aggressively, which is true for my family. The average breast cancer patient receives her diagnosis at age 61, while in my family, the average age is 33. I chose prophylatic mastectomy, and later, I will probably choose prophylactic oophorectomy, because the other option is frenzied screening, which creates body anxiety and doesn’t prevent cancer, but simply catches it.

The Physical Recovery

In the last year, my feelings about my breasts have changed. When I wrote last year, I felt like I had two bowling balls strapped to my chest. I felt weak and tired and that my body wasn’t capable of doing things I wanted to do, like carrying heavy grocery bags or using my arms to get up from a sitting position. Another year of recovery and some hard-won advances in the gym have changed some of that.

Last year, I spoke about my strange new body – wearing new breasts is a bit like getting a new car; it’s hard to get the hang of new dimensions and so there are fender-benders in crowded rooms, illicit boob-brushes against strangers. Time has helped deal with that quandary – my new boobs are not so new anymore; I’ve gotten used to them. Presently, I execute three-point turns with aplomb.

Ambivalence

In the first year after my mastectomy, performed with reconstruction, I felt both resentful and vain about my new body parts. I hated them; but I wanted to show them off. Either way, I felt guilty. I had plastic surgery because I wanted my body to change as little as possible; I thought it would insulate me from feeling the mastectomy as a loss, though of course it was. As poet and activist Audre Lorde wrote in The Cancer Diaries:

“Prosthesis offers the empty comfort of ‘Nobody will know the difference.’ But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other.”

In other words, it’s a shame that women have reconstruction – it’s perhaps anti-feminist to have reconstruction, because it blinds everyone else to the ravages of mastectomy. Plus, numb reconstructed breasts reaffirm the status of breasts-as-aesthetic objects that exist for the male gaze rather than for the woman who wields them. I don’t fully agree with Lorde, but I also can’t deny the power of her words; reconstruction does hide the existence of mastectomy.

I wanted my friends to see my new breasts, not so much because I was proud (ok, so I was a little proud – my plastic surgeon did an awesome job), but because I wanted the people around me to bear witness to what I’d gone through, to make visible the psychic pain and physical changes I’d endured. I also wanted reassurance that no one would ever know from looking at me. And I wanted compliments of the type people want when they show you their new iPhone; look at this new gadget I have purchased, isn’t it great? I wanted confirmation of my decision. I had contradictory desires. I wanted everyone to look and acknowledge. I wanted no one to know.

Over time, I’ve accepted my state as a wonder of modern medicine, a boobless wonder that has been re-boobed. The new breasts feel more like part of my body and less like the latest gizmo.

And yet, two years out, I feel increasingly ambivalent about my operation. When the wounds were fresh, I had to believe that I’d done the right thing for the sake of my own sanity and my own healing, cheered on by the rah-rah you-go-girl element of breast cancer culture, simultaneously heartening and repellant.

It’s hard to remember exactly what caused me to have a mastectomy, the all-consuming the fear of breast cancer that subsumed me after I received my genetic results. The six months between diagnosis and mastectomy were the most miserable months of my life, fraught with uncertainty, terror, dread and hopelessness, emotions that only total elimination of my risk — no matter the cost — could cure.

Before surgery it was hard to understand what expressions like “you will lose nerve sensation in your breasts” really meant. Now I have a lived experience that undercuts the throw-away simplicity of that clinical phrase, numbness considered as an incidental side effect. At the time it seemed like a small sacrifice, one thrust on me by circumstance. Still, I have to live with the knowledge that I gave away something incredibly precious of my own volition. The responsibility for my disappointment — my numbness — lies entirely on me, no matter how much I’d like to transfer it to a strand of DNA, or the failures of medicine to live up to my desires.

Still, if I had it to do over, I’m sure I would make the same decision. I couldn’t live in limbo between sick and healthy.

Looking Forward to Oophorectomy

Rather than “curing” me of my fear and anxiety over getting breast cancer, the surgery also transferred some of that fear to ovarian cancer, which is a really effing scary disease for a couple reasons:

  1. There are no good detection tests for it. This may explain why…
  2. 70 percent of ovarian cancer cases are caught in Stage III or IV (on a scale from I-IV, with stage IV meaning “the cancer has spread all over your body”).
  3. The five-year survival rate for women with ovarian cancer is 43.8 percent.
  4. Dying of ovarian cancer (or really, of disease in general) isn’t pretty. One of my female relatives spent years in and out of comas, wheelchair-bound after the cancer spread to her spine before it finally killed her.

In addition to the fact that there aren’t effective early detection tests for ovarian cancer, its symptoms will appeal to any latent hypochondriac tendencies you may have. They’re so general as to encompass nearly any illness: Does your stomach hurt? Need to pee a lot? Lost appetite? Are you fatigued? Have heartburn or back pain? Skip a period? For this reason, in our house we joke that everything that goes wrong is “probably ovarian cancer.”

Gender Anxiety

Finally, I’ve also been renegotiating my conception of my own femininity. I have never thought of myself as a particularly girly girl. My mother jokes that she hasn’t been able to get me to wear pink since I entered my black period in third grade. I always thought of myself as person first, woman second. But the mastectomy threatened my femininity, and I tried to reclaim it by doing things I wouldn’t have been caught dead doing during my head-shaving college years, like plucking my eyebrows.

I still think of myself as person first, vagina-haver second. Yet, if that’s true, why did I opt for reconstruction instead of just living with a flat chest? Why has my interest in time-consuming ladylike niceties persisted? Maybe I am finally free to be feminine now that I’ve extirpated the negative, cancer-causing part of ladyhood. Or maybe I’m still gender-anxious because I removed bodyparts visibly and loudly associated with femininity in our culture. Or maybe modern marketing — which tells women that they are never X enough — has finally eaten me, the door cracked wider by the new and special body anxiety the surgery permitted.

I’m glad that these issues are on my mind, for me, at least, it’s a sign that after two and a half years of disruption, I finally feel back to my normal old self. Or maybe it’s ovarian cancer.

 

______

Read more about BRCA and my mastectomy on my blog:

Preserved: Fresh Salmon, Parts of My Body
My Today Show Article: I’m 27 and about to have a double mastectomy
My Daily Beast Article: Goodbye to my breasts
Today Show Appearance
A Year Later

Image is The Agnew Clinic by Thomas Eakins.

A Year Later

A year ago today, I cut off my healthy breasts to reduce my astronomical chances of developing breast cancer. The months leading up to the operation were brutal, to say the least. It was the hardest thing I’ve ever done, but I’m really glad I did it.

I have the BRCA 1 genetic mutation, which carries with it a 40-85% lifetime chance of developing breast cancer. While breast cancer in the general population generally strikes after menopause, for BRCA 1 women, the age of diagnosis can be much younger. Many women in my family developed breast cancer in their 30s, but my mother holds the record for youngest diagnosis — she learned she had cancer just a few weeks before her 31st birthday.

I didn’t want to cut off my breasts, but it’s what I had to do to feel safe. While it’s amazing that science could pinpoint my risk of cancer, it didn’t leave me many options. My choices were to expose myself to an emotionally draining barrage of tests a couple times a year, tests that began coming back with assurances like, “that thing we found on your scan is probably not cancer,” tests that don’t prevent cancer, simply catch it early. After watching my mother struggle with cancer, I decided I couldn’t play chicken with my life like that. I could have taken estrogen blockers that would have reduced my risk as long as I took them. Of course, taking estrogen blockers means undergoing temporary menopause, and as a BRCA 1 carrier my lifetime risk of ovarian cancer is 40-60%, with most doctors recommending an oopherectomy after child-bearing is done. So I already was and still am facing early, surgical menopause. My final option was to take the breasts off entirely, permanently reducing my risk to less than 5 %. I chose certainty.

My new breasts are cosmetically appealing, or so I have been told by doctors and bra saleswomen, but I still miss my old ones. Because taking out the breast tissue cuts through nerves, I’ve lost a lot of skin sensation. This winter I noticed that my breasts can’t get cold, for example, because there is no feeling. Sometimes it’s awkward to slither past a stranger in a crowded room, only to realize later that my senseless boobs must have bumped against him or her. From time to time I get an itch I can’t scratch because there are no sensation receptors left in my skin. This permanent numbness, reminiscent of a dentist’s shot of Novocaine into an inappropriate body part is the worst thing about the surgery.

Without my breasts, my real breasts, I mean, I felt strangely incomplete, deformed, ugly. As if I were faking an identity I no longer had claim to. In response, I became excessively girly. Jeans left my wardrobe, to be replaced with a strict diet of leggings and dresses, preferably in funereal black. I never let anyone see me without makeup or in sweatpants. I felt dishonest about my new body, as if my personal appearance, my faked cleavage, was presenting a lie to the world that belied who I really was. I was pretending to be a normal, natural female, when in fact, I consisted of medical-grade silicone held into place by a donated collagen matrix (read: skin harvested from the backs of corpses and stripped of DNA).

While I was glad the surgery was over, the months that followed were dark, bleak ones for me as I wrestled with these emotions, emotions that I even felt a little guilty for having — I mean after all, it’s not like I had cancer or anything.

Still, the best thing about the surgery is that the threat of breast cancer no longer hangs over my head. It’s hard to overstate that, since I have no conscious memory of being without that worry. After all, my mom first developed cancer when I was 18 months old. In some ways, I share the fate of my mother and grandmother (and aunts, great-aunts, first cousins once removed) — I’m going to my grave without my real boobs — but I do feel I’ve dodged the bullet. I don’t have to have chemo. I won’t lose my hair. I won’t have to spend years living with the shattering uncertainty that the cancer might recur. And I’m so glad I don’t have to.

Want to read more about my zombie boobs?
Preserved: Fresh Salmon, Parts of My Body
Today Show Article: I’m 27 and about to have a double mastectomy
Daily Beast Article: Goodbye to my breasts
Today Show Appearance
Two Years After Mastectomy

 

Watch Me on the Today Show

I appeared on the Today Show on October 7, 2010 to talk about what it’s meant to have the “breast cancer gene” and my prophylactic mastectomy:

Here are the earlier columns on my surgery:

I’m 27 and about to have a double mastectomy (TodayShow.com, October 2009)

Preserved: Fresh salmon, parts of my body (February 2010)

Goodbye to my breasts(The Daily Beast, April, 2010)

Goodbye To My Boobs

A post-surgery LizzieFour days before I amputated my breasts, I had a theme party for them. My husband and I served martinis—boobtinis, actually, with two olives, of course. We wrapped melons with prosciutto, and since we couldn’t find a breast of veal to braise, we settled for butterflied chickens.

The party had two purposes. First, I wanted to celebrate 28 years of living with my born body. And second, I wanted to distract myself from the reality that in four short days I would be missing body parts I deeply valued….

The rest of the essay is over at The Daily Beast. Questions or comments? Feel free to post them below