18
Pushing the Envelope
I am obsessed with the idea that my cancer is coming back. I feel it growing in the middle of the night. Every time my blood is drawn, my body is scanned, my breast is mammogrammed, my liver is looked at, I am sure they will tell me that I have had a recurrence. Every sore throat, every sore back convinces me that it is cancer. I am living under a cancer cloud.
And to make me even more paranoid, I am working on a story at 20/20 about families who have the breast cancer gene. The more research I do, the more convinced I become that I need to have this gene test for Skye and her future as much as for mine. I’ve already had breast cancer—so why does a gene matter? A gene will tell me if it can happen again. Not just to me. The stakes are now higher because of Skye.
I can’t believe the courage of the women I am speaking with who have the breast cancer gene. The woman we decide to profile, Lori, watched her mother, grandmother, and aunt die from breast cancer, so when she heard there was a gene test, she needed to know. When Lori finds out that she has the gene, she decides to have surgery to remove her healthy breasts and ovaries to try to prevent any chance of getting cancer. Her decision is controversial and some doctors say they would never agree to remove a woman’s healthy breasts and ovaries just to make her feel safe. Lori even allows us to follow her into the operating room and to be there after her surgery to ask her if she still feels that she made the right choice.
My mom and her mom did not have breast cancer. My dad’s mom didn’t. I always thought I didn’t have a family history. Breast cancer was one thing our family thought we did not have to worry about, but because I was so young, my doctors think I, too, could have the breast cancer gene. Since I am Jewish, I am at high risk. I have been told that many Jewish women have one of the three common mutations, because not intermarrying has kept breast cancer around.
I am scared to know what my future holds. I am not sure that I want to look in a crystal ball now, because I have had cancer. I am scared that Skye might have the gene, too. I have begun to worry about baby Skye’s breasts. Her little pink nipples are so sweet and adorable and I wonder if they might kill her one day.
So I make the ambivalent decision to be tested for the breast cancer gene as a way to make peace with my future. If I have the gene, I will cut off my other breast and cut out my ovaries in a bid to save my life. I will do anything to make sure that I do not have to go through my cancer treatments again. I will cut off anything. That way, maybe I can escape my genetic fate of getting cancer again. Even giving that much away doesn’t guarantee I will stay disease-proof. But I will be able to convince myself that I’ve done everything possible to chase cancer from my life. I am peering into the crystal ball but in the same time hopefully changing it.
It is such an awful decision to have to make, to have another mastectomy and to remove my ovaries, to have to tell Skye that she might have a breast cancer gene so she will worry her whole life. But it is less awful than being diagnosed with cancer again and more chemo.
When I call my parents to ask their advice, they are so sad and guilty and feel somehow responsible for my possible bad gene. I am trying to convince them that their genes gave me their laugh and black hair, but they feel like the gene is their fault. My dad tries to make me laugh when I review the cut-off-everything-so-the-cancer-won’t-come-back plan: “Why not cut off your ass while you’re at it?”
Truth is, I will cut off anything at this point to make my cancer go away and never come back. When I tell my parents my decision to get the gene test, they surprise me, and tell me that they have already sent their blood to be tested. They knew that I was so terrified and they wanted to take care of it for me. If neither of them have the gene, then I could not have it.
My parents, it turns out, do not have one of the Jewish gene mutations. We are all so relieved! Bur strangely disappointed, too. A gene would have explained why. (Maybe Hallmark should sell a card line: “Congratulations, you don’t have the gene.” Or “Sorry, I heard you just found out that you have the gene.”) But I am not free from genetics yet. My doctors want me to have a more sophisticated test, a breast cancer gene sequence. And I agree. Knowledge is power.
And it’s the power of genetics that is seducing me when the nurse ties a rubber band around my arm to get a vein to bulge. I begin sweating and feeling that blood-drawing nausea that I know too well from my six months of chemotherapy hell. As I watch the blood filling the vials, I feel some sort of relief. Could this shiny red liquid finally unravel the mystery of why I got breast cancer when I was only twenty-seven years old?
Along with the blood, I must complete a family “pedigree.” As in dogs. The last time I discussed pedigree was when I brought home my Chesapeake Bay retriever, Jasmine, from a farm. Her mom was a champion and we had the papers to prove it. I had never considered my family’s pedigree. I have to list all family members who had cancer, and their relationship to me. I start to make the list: There was a great-aunt, Mary (my paternal grandpa Phil’s sister, who had breast cancer in her sixties and who died at eighty-one). There were my dad’s second cousins, Ethel and Vicka, who both now have ovarian cancer—but Ethel is in her seventies, Vicka in her sixties.
I feel crass for writing their names down, as if they might be guilty. And I know one day I will become a suspect in my family’s next generation of pedigree. I want to be known as a champion dog, not just a mutation.
I remember that Aunt Mary was a fiery, rebellious intellectual who watched her children die of tuberculosis in Russia and then saw her husband killed because of his political beliefs. She ran an underground radio broadcast, and despite her years of torture by the Russian government, she still loved life and was passionate about cooking and classical music. I thought of Vicka and Ethel—also loud and smart. Ethel is a renowned feminist in Amsterdam, who studied at the Sorbonne. Vicka was a famous musician and writer in Russia, who escaped to America for her freedom.
That is my family’s pedigree. That is my bloodline. Feisty, loud-mouthed, smart. Can that be measured in my blood? I want the lab to know that when they look at my blood—can they see that through the microscope?
I remember the microscope lady who looked at my blood each time I visited my oncologist. The microscope lady was always wearing her white coat, she never left her white laboratory closet. I passed by her every time I walked by the hallway to see my oncologist. I knew that she was the one responsible for measuring my white counts and looking to see if my tumor markers were up. I didn’t know her name. She was always peering into the microscope.
I remember when I saw her at my last visit to my doctor’s office, when I brought Skye. Microscope Lady must have been on her lunch break because she was out of her closet and in the hallway. She heard my name called by the nurse and she froze. The baby. She had seen my blood under the microscope for my chemotherapy treatments. She had seen my tumor markers. She had never seen my baby. I saw the tears in her eyes as she rushed past my baby, my biology, and me. And I thought she saw something she had never dreamed possible from inside the microscope: I had survived my cancer. And I had a baby. There will be another microscope lady to look at my six vials of blood that are being FedExed to Salt Lake City. That lady will see one future. I remind myself that I can create another.
But I am obsessed with genes and destiny and I need help. I have seen enough cancer specialists and psychologists and I know I am in trouble when doctors start telling me “You need to see a psychiatrist!” again, about all the gene stuff. Maybe an old-fashioned fortuneteller could calm me down.
I am terrified to hand my over my palm to the psychic. Will she look at my lifeline and see more cancer, more chemotherapy? An early death? I have not had my palm read since my cancer and I really do not want to know what my future holds. Will my cancer come back? If anyone can really see my life ahead of me, what the master plan really is, I’m pretty sure now that I don’t want to know it. I don’t trust futures anymore.
I reluctantly slide my palm across the table into hers, and then jerk it back. I don’t care how good a psychic she is, I don’t want any fuck-ups about my lifeline and I don’t want her to guess, so I blurt it out. “I had cancer. I found a lump when I was twenty-seven. I’m scared you’ll see something strange in my lifeline. Please just don’t tell me if it’s really bad news. I had a plan, but it went wrong.”
The psychic gazes down with her large dark eyes and seduces my hand, with the palm side down. “Honey, you found your lump. Your life is fated.”
The psychic then launches into usual-suspect stuff about love and career. But I am not listening at all. She has totally distracted me with the idea that somehow we might be able to have a hand in our fate . . . that our destiny is not in the crystal ball as a pre-set path ahead of us. Is she betraying some psychics’ code of honor by telling me this? Or does she really believe that destiny can changed?
The envelope arrives innocently enough with a Land’s End catalogue, a mailing from Columbia University asking for money, and an Elmo birthday invitation from one of Skye’s friends. The Elmo invitation makes me cry because Elmo is just obliviously happy and I am worried that I have a defective gene.
I am thinking about what the psychic said about my fate when I notice how regular the envelope from the genetic testing lab is. It is bizarre that such life-changing information can just arrive in the mail with an ordinary stamp to deliver it. The envelope is holding my future and I am scared to look. The return address is Myriad Genetic Labs, 320 Wakara Way, Salt Lake City, Utah, and I’ve not felt such anticipation since opening college admissions packets. But this is a different type of news, not just news about where I might spend the next four years of my life. This news could affect even my great-grandchildren.
I rip open the envelope, and when a pamphlet drops out I know this means trouble. Testing for Hereditary Cancer Risk: WHAT DOES A “VARIANT OF UNCERTAIN SIGNIFICANCE” MEAN? I am immediately scared because it is in all caps. This must not be good. Myriad Lab tells me that I have a “genetic variant of uncertain clinical significance.” My variant is very serious-sounding: A P1238L. Who comes up with these names, anyway? I read on: “The BRCA1 variant P1238L results in the substitution of leucine for proline at amino acid position 1238 of the BRCAI protein.” There is more and more explanation, which, I figure out, explains that they don’t know what the hell this means.
I start to cry and then make myself laugh when I say out loud:
“This figures! I’m a mutant mutation.” I defy categories. I am caught in a shade of gray for what I thought was an either black or white answer.
Myriad Labs says they have seen this in eleven to twenty-five unrelated families. I suddenly feel a kinship with other P1238Ls, those families out there. Does this mean we are somehow related? Do we all like dim sum and sunsets and talk a lot, all because we share a P1238L?
I start to research my gene. I go onto Medline and e-mail the only researcher in Canada who has published on P1238L. Knowledge is power. He says that he thinks it is insignificant, but he cannot tell me what it means, what my future is.
It takes me awhile to realize that one little P1238L does not a Geralyn make, anyway. If that gene is part of my destiny there are other ones . . . that have not been officially discovered yet. They have to be right around the corner: Scientists in Israel just discovered the “risk-taking” gene called D4DR. I know a scientist somewhere is on the verge of finding the sexy gene. The late gene. The compassionate gene. The funny gene.
And now I know I don’t need to wait to open an envelope for my results.
Because as the psychic showed me, I will definitely have a hand in it.
19
Barbie’s Boob
I am trying to raise Skye in a boob-proofed universe. But it is impossible: There is a Hooters breastaurant above my therapist’s office, and their van always seems to be parked out front. Whenever I watch late-night TV, there are ads for Girls GoneWild videos where college girls lift up their tops and show their boobs for strangers with cameras. And Tyler recently took me to New Orleans and all the women were flashing their breasts at the Mardi Gras parade to get plastic necklace beads. The Sports Illustrated swimsuit issue is all over the place, and every bus seems to have a poster with boobs advertising the Victoria’s Secret fashion show. Big boobs are definitely in fashion. I am even working on a story at 20/20 about men who conduct business meetings in strip bars, and another story about how breast size influences a woman’s personality.
And now Barbie’s boobs have entered my home. Skye’s Barbie dolls have been pissing me off lately. Their boobs are too big. I never thought I would be the type of mom who would have moral objections to Skye playing with Barbie dolls. I have heard the Barbie-bashing arguments and they are convincing: Real women could never have 39-18-33 figures (that’s what Barbie would be if she were human); they would actually fall over. I always wondered how Barbie would walk if she were real—she would have to tiptoe everywhere without her plastic high heels, because her Barbie foot is permanently arched in a 45-degree angle.
I was not mad at Barbie even after I did a story at 20/20 about a woman who decided she wanted to become Barbie and had twenty-seven plastic surgeries to make it happen. But Barbie’s boobs were really pissing me off . . . or more precisely, Barbie’s boob. She has two and I only have one. Hers are so large and are her best feature and mine, I just pray it won’t kill me.
I am excited when my sister-in-law Wendy finds a Barbie alternative for Skye on her birthday. Her discovery comes just in time because I was in serious Barbie burn-out mode: For her birthday, Skye received a Barbie car, a Barbie van, a Scooby-Doo Barbie, a Doctor Barbie, a giant Barbie head that talked, and even a Miss Puerto Rico Barbie. Wendy discovered a “Get Real” girl who, unlike Barbie, could actually bend her knees. But the realness did not stop there—the “Get Real” girl could move all of her joints and even came with a surfboard and surf gear. I had grown up playing with girly glitter gowns and matching plastic purses and now I’m asking my daughter to get excited over plastic snow boots and a bendable knee? It seems almost too real to be any fun.
The first thing that Skye does with her “Get Real” girl is rip off her clothing, just like she does with her Barbie dolls. The most striking difference between “Get Real” and Barbie is that “Get Real” girl’s breasts are much more real (smaller) than Barbie’s. And “Get Real” is wearing a sports-type bra made of plastic that is permanently glued on, compared to Barbie who has two perfect globe-size mounds of plastic.
Skye plays with her “Get Real” girl about three whole minutes and then goes back into Barbie bliss. I don’t think she ever touches “Get Real” again, unless I count the time she offered it to her friend Nola because she didn’t want to share her Barbie dolls.
Skye prefers her Barbies naked. I think all the interest in her Barbies’ boobs has made her interested in mine.
“Mommy, when are you going to get another nipple? Why do you only have one?”
I always wondered how I would explain my breast cancer to Skye. Now she is three, demanding to know why I look different. I don’t want her to be scared of her breasts. She is becoming very interested in body parts and even knows what her elbow is. The word nipple especially cracks her up, and she giggles and points to herself—“Skye’s nipples.”
“Mommy had a boo-boo and its name was cancer,” I tell her.
Skye loves boo-boos and wants to put a Band-Aid on my boob. She takes her blanket and puts it over my breast and says “Abracadabra” and it’s magic because Mommy’s boo-boo is all better now. But I am not sure how to explain the one nipple missing, and the tattoo that is there instead. Skye didn’t even exist when I first got it. One day, she solves the problem for me: “Mommy’s nipple.” She points to my left breast and pauses at my right. “And Mommy’s cartoon.” Cartoons are Skye’s obsession, her absolute favorite thing in her little world. Every mommy has two nipples—Skye seems so impressed that hers has
a cartoon.
But Skye will soon outgrow cartoons, and she tells me she has a great idea. “Mommy you can tape a nipple on.” I will need to explain to her that her breasts might be cancerous one day. How will she feel about being so ambivalent towards her breasts? Boobs are everywhere: wet T-shirt contests, Playboy, Penthouse, strip clubs, the Booby Mafia, and now even Barbie dolls are not safe. How will Skye feel when she goes through puberty and suddenly boys notice her breasts? Will she always live in fear?
For now, Skye, is besotted by boobs. Especially Barbie’s. Since she is probably curious about her own little three-year-old body, Barbie must be something to explore. So naked Barbie goes just about everywhere with us—to the pediatrician’s office, to nursery school, and very often out to dinner at swanky New York City restaurants. She causes quite a stir. We often get stares. I think it’s because Skye is so cute, until my mother is in town staying with us and looks extremely uncomfortable when I pull Skye’s naked Barbies out of my pocketbook and put them on the table at a restaurant one night.
“That’s obscene!”
I look down and realize there are three naked Barbie dolls with long blond hair and gigantic boobs on our table. She is right—the naked Barbies do not look like a three-year-old’s toys at all. They look like miniature versions of the topless dancers I saw in the strip club. And at that moment I understand why I have felt irritated by Barbie recently. Barbie’s boobs are bothering me. The fact that they look so perky and perfect. The fact that they are just so big! There is something about Barbie’s boobs that I have to figure out.
I do some research to get to the bottom of Barbie’s boobs. They are deliberate. Ruth Handler, her creator, had the radical idea in 1959 that little girls would like to play with a doll that had breasts. Ruth thought it would give them a sense of self-esteem and show them they could be anything when they grew up. Until 1959, little girls played with baby dolls, and most male executives laughed at the idea of a doll with breasts and said that the public would never accept that. But Ruth knew she was onto something, and she did get the last laugh—by inventing Barbie.
Why I Wore Lipstick to My Mastectomy Page 15