July 2006
Danielle gave birth to a healthy, gorgeous baby boy on July 11. Miles lit up our lives. Dad was thrilled to be a grandpa. Pictures of his grandson hung all over his house and were copied onto mugs. He bought bibs and clothes and stuffed animals. He went to the mall in Florida and ordered a dozen children’s CDs with Miles’s name added to the songs.
Danielle flourished as a mother. Every milestone filled her with joy: the first time Miles pulled himself up in his crib; the first time he ate baby food; the first time he started babbling consonant sounds. Danielle said the greatest feeling she’d ever experienced was when she went into the baby’s room each morning and he lifted up his head, recognized his mommy, and broke into a smile.
I, of course, thought my nephew was brilliant (and still do). At six months, Miles had games he played with me and entirely different ones with Danielle. I’d plunk him down on my bed and say, “Good night, Miles,” and he’d bury his face in the pillow and pretend to be asleep, then pop up. I’d say, “Miles is awake!” and he’d break into giggles. We had a cuckoo clock game in which he tilted his head back and forth to the sound of my saying “tick-tock.” Miles could sit before a mountain of toys and he would always reach for the books. He’d make sure the book was right-side-up and proceed to turn every single page, studying the pictures and letters with intensity until he got to the end, and then he’d reach for the next one.
Mark and his daughter spent time in Southampton with me, my dad, Danielle, Bruce, and Miles. Mark was wonderful with the baby. His intense, domineering personality transformed into an almost maternal quiet while holding Miles.
After I’d finished my final surgery and while Danielle was still pregnant, she told me she had changed her mind, she would take the BRCA test, after all. Going through the surgeries with me had made her realize mastectomy and reconstruction were not nearly as terrifying as they sounded. I had recovered quickly, with little psychological trauma, and my cosmetic results were great. Dani said she would take the test after she had the baby.
But she did not mention the BRCA test after Miles was born. Occasionally, I would bring up the subject, ask if she’d given it any more thought, but she would deflect the question. What I did not know is that she had privately taken the test when Miles was about two months old. She told no one—not me, not her husband, not our father.
She had tested positive.
Like me, she had been stunned. Somehow because we each had a fifty-fifty chance of inheriting the gene and I had tested positive, Danielle thought she would test negative. No such luck. For several months she kept this secret. Though rationally she knew having the mastectomy was the right thing to do, she wasn’t emotionally ready to check herself into the hospital and begin the process. And she didn’t want to be pressured to do so.
Eventually, Danielle told Bruce. Just one year earlier, when I had been preparing for my operation, Bruce thought I was nuts. He changed his mind once I got the pathology report back and was informed that I’d already had precancerous changes in one breast. Bruce had been on the front lines as our mother battled ovarian cancer. He urged Danielle to have the surgery.
Several weeks later, Dani told me her results, and soon after she told Dad. Now that she had a baby, Dani felt an enormous responsibility to remain healthy. She would have the mastectomy, she just didn’t know when. Maybe she would have another baby first.
IN FEBRUARY 2007, Danielle, Miles, and I moved into our mother’s Southampton house. It had been three and a half years since she died. For most of that time, we’d rented the house to a lovely family. We had locked all our mother’s personal effects into several walk-in closets and stored the rest in the enormous finished basement. Our tenants had recently moved out. After much discussion, we decided that the house was too expensive to keep and required too much maintenance to continue to rent. It was a heartbreaking decision, but we put the house up for sale. Now it was time for us to go through our mother’s lifetime of belongings.
Our mom was a grand materialist and also a hoarder who’d amassed a tremendous amount of possessions. Her childhood of deprivation had made her perpetually afraid that she would run out of money and be unable to take care of herself, so she stashed emergency provisions. She never bought one of anything. Be it Saran Wrap or Frederic Fekkai shampoo, my mother had everything in dozens. The same principle applied to clothes, shoes, china, silver, bedding, towels, and everything else. For two weeks, we went through her stuff, day and night, sorting what to keep, what to send to storage, what to give to charity, and what to throw away. Every decision was emotional. “Do we keep Mom’s slippers? What about her lingerie? Her T-shirts?”
One afternoon, while going through endless file cabinets in the basement, Danielle unearthed a huge red book, dated 1995, filled with our mother’s handwriting. It was a day-by-day diary of her battle with breast cancer. Our mom was not a literary type—it was not in character for her to keep a diary, and it was shocking to us that she had. The entries began in January and ended in November. Danielle sat on the floor and read it from start to finish, tears streaming down her face. Then she handed it to me and I did the same. Neither of us remembered all that much about the horrors of our mother’s breast cancer, because it had been eclipsed by the terrible ovarian cancer that had killed her. Here, in our mother’s own hand and words, was a detailed account of her suffering. The shock and horror and fear when she was diagnosed, the devastation when the news kept getting worse—the cancer was stage II, it had spread to lymph nodes, she would require aggressive chemo, she would lose her hair. The nausea, fatigue, and chronic sore throats that resulted from treatment. The aching and tingling of her scalp as her hair began falling out in clumps. The sleepless nights of terror and weeping. The wigs, mouth sores, swelling of her arm from lymphedema. Having gotten through the first few chemo sessions and wondering how in the world she would ever survive months and months more.
Danielle felt that our mother was speaking directly to her from beyond the grave. She was telling her to have the operation and have it now, not to wait for cancer to strike.
Danielle scheduled her mastectomy date for March—four weeks after discovering the diary.
The night before her operation, Danielle and I talked on the phone every hour on the hour—two, three, four, five a.m. Neither of us slept a minute. She was scared. She didn’t want to do it. She did not want to show up at the hospital and let them remove her breasts. Unlike me, she was very attached to her natural breasts. She didn’t want to change them; she certainly didn’t want to lose them. She’d cried hysterically for most of the day and had taken Ativan at night to calm her nerves. I begged her to postpone the surgery. I didn’t think she was emotionally ready. She refused. She’d been having nightmares about getting cancer. “What happens if I wait until the fall and I get breast cancer over the summer? I will never forgive myself.” Danielle was only thirty-three. I felt relatively confident that waiting six months would not harm her. Though she was terrified, she would not budge in her decision. “I’m going to walk through the fire.”
I was filled with far more anguish over Danielle’s mastectomy than my own. Our dad, Bruce, and I sat with Danielle in the admitting room; it was her turn to wear the hospital gown, cap, and booties. This time we were in Lenox Hill. Danielle had chosen her own surgeons at a new hospital. She had too many bad memories of our mother fighting for life at NYU. She wanted new energy.
Danielle’s breast surgeon stopped by while we were in the admitting room. Dr. Lauren Cassel had been written up in many publications as one of the finest surgeons in New York. She was also the most glamorous doctor I had ever seen. She wore a short mink coat, jewels, and Manolos. “What a perfect doctor for Danielle,” I thought. “Our mother would love her.”
She was also compassionate. Tears were streaming down Dani’s face (and mine) as Dr. Cassel soothed her. “You will be just fine. I promise.”
Danielle’s plastic surgeon was equally dazzling. Dr. Baraka was a distinguished, handsome man with a vague European accent, also impeccably dressed. Lenox Hill was truly an Upper East Side hospital.
When Danielle woke up in the recovery room, woozy from anesthesia, she wept. “I hope I did the right thing,” she said.
Dani had a much more difficult recovery than I had, due to a preexisting autoimmune issue that was exacerbated by the surgery. She did not suffer much pain in the breast area, but was in tremendous pain systemically, triggered by the operation.
Her breasts healed beautifully, though, and Dr. Baraka did exquisite work. Dani had a hard physical recovery, but did not suffer emotional anguish over her breasts. She liked them right away. Like me, she adjusted quickly and easily. “The new breasts don’t feel like that big of a deal,” she said.
One other way in which Dani and I differed was on how we approached sharing our travails with other people. Danielle was fiercely private. She didn’t want anyone to know she had tested positive or that she was having the surgery. She didn’t want people to gossip about her or feel sorry for her. She’d decided to have the operation and tell people later, when she was reconstructed and the ordeal was behind her.
THE LYNN COHEN FOUNDATION for the prevention of women’s cancers asked if they could honor me and Danielle with the Courageous Spirit Award at their April benefit. Danielle was extremely hesitant because the benefit would be held between her first and second operations. Her body would be under construction and she didn’t know whether she’d be ready to “come out” by then. On my urging, Danielle agreed. The event would take place (fittingly) at Fred’s, the posh restaurant on the top floor of Barneys. Danielle’s in-laws would be attending, as would her best friend from California, and her friend’s mother and husband.
The day of the benefit, Danielle freaked out. She regretted saying she would do this; she didn’t want to go, didn’t want to give a speech. She wasn’t ready to talk about this experience or make sense of it or articulate her feelings about Mom. She felt out of control and miserable.
I felt terrible, as I’d encouraged her to accept the award. I thought it would be meaningful for her to be admired and honored for her bravery. It was too late for her to cancel, but I told her I would deliver the speech for both of us. She wouldn’t have to say a word.
As always, Danielle arrived at Fred’s looking smashing. Not a soul would have guessed she’d been an emotional wreck a mere hour earlier. The crowd was young—they were our peers. Danielle and I were both dressed in black cocktail dresses and made up. We blended into the crowd. No one could have picked us out as the award recipients, as the women who’d just undergone mastectomies.
After dinner, near the end of the night, we were called to the podium. I had written a speech and read it aloud while Danielle stood by my side. When I was done, Dani took the microphone and to my great surprise delivered the most eloquent extemporaneous speech about her decision, our mother, and our relationship as sisters. When she finished, the whole room was in tears. Danielle looked like a blond supermodel. She had the beauty and élan that all the young Upper East Side women at this benefit aspired to. Danielle had stood up, with confidence and grace, and shared her decision to take the test and to take surgical action. She left everyone in the room in awe.
THOUGH MY BRCA status was an unhappy reminder of her own high risk of breast cancer, my friend (and Jonathan’s wife) Alexandra participated in all the events surrounding my surgeries—the “farewell breasts” girls’ night out, the last supper, the hospital days, the mad-tea-party soirees where I wore drainage tubes attached to my nightie. After I was put back together again, Alexandra told me I’d given her the courage to take the BRCA test—something she’d previously thought she would never do.
It is one thing to decide to take the test in theory—it’s quite another to actually do it.
Alexandra had a baby boy, Sam, shortly after Danielle had Miles. Once she had a child, she, too, felt pressure to protect her health. Alex had been a young girl when she witnessed her mother die of cancer—she did not want her son to endure the same horror.
Yet Alex dreaded taking the test. Her mother was an Ashkenazi Jew and died of aggressive breast cancer in her early forties—all the signs pointed to the likelihood that she had carried the gene, which gave Alex a 50 percent chance of inheriting it. I’d tested positive and Danielle had tested positive, which made the possibility of receiving bad results all the more real.
Alexandra scheduled an appointment with Dr. Smith and took the test—and discovered she was negative for both BRCA mutations. Though there’s always a possibility of mutations that have not yet been identified, the biggest—and most likely—threat was removed. We were all elated. For the first time in her life, she was free of the burden of feeling that she was destined to inherit her mother’s illness.