June 2005
I packed up my Hollywood apartment and braced myself to face the trials ahead without a significant other.
And yet. Two days before leaving for New York, I agreed to go on a blind date. A tiny optimistic voice within me whispered that I wouldn’t really have to go through this without a man who loved me. I planned to schedule the surgery for early September, which left a whole luxurious summer in which to fall in love. Surely, God or fate or karma would even out all my misfortune by sending me the right partner before my body underwent irrevocable transformation?
Over lunch with my attorney, I had discussed my pending operation and lamented the state of my love life, which spurred her to set me up with a successful independent film director. Luis Porta and I talked for a few minutes on the phone to establish the time and place of our date. He asked what I was working on, and I said I was about to take some time off from television writing to live in New York and maybe write a book. “What’s the book about?” My answer was vague, though I alluded to an article I’d written that would serve as the launching point.
At the restaurant, over my first sip of wine, Luis said, “So I read your article.” I swallowed slowly, careful not to choke. This was the precise scenario I’d imagined with horror. “After we hung up the other night, I Googled you. That’s a pretty rough situation.”
I was startled by this—it felt like trespassing, but why did it? After all, I’d Googled him, too. I tried to make light of it.
“Well, at least living in the Internet age spares us the awkwardness of first-date questions, right? You do your homework and then cut right to the chase at dinner ….”
Luis was a hipster with a low-key, quiet persona. He asked me questions and listened while nodding in empathy. It was hard to tell whether he was truly sensitive or faux sensitive, but I continued refilling my glass with wine and chose to believe the former. Luis told me about his recent heartbreak—the ugly end of his relationship with another emerging indie-film director. (I had already read about this online. I’d even looked up her photo.) As the night progressed, I discovered I liked his taste in films. I liked his tranquil manner. I liked him.
“I was sort of dreading this blind date …. I thought about canceling it,” I said, meeting his gaze. “I’m so glad I didn’t.”
Luis responded in kind. I was too blurry with wine to remember the exact words, but the sentiment appeared to be mutual. We did not kiss good night, but it was a warm parting. I felt sure we would go out again.
The next day Luis left a message on my machine to give him a call. “He called right away!” I told Kay. “I’m so happy!” Within minutes I left a message for him suggesting another date before I took off for New York. That afternoon while I was out, he called back:
“Hey, Jessica, it’s Luis. I’m a very straightforward person, so I’m going to be honest with you. It sounds like you’re going through some heavy stuff right now, and I’m not really up for that. So, it was nice meeting you. And, uh, good luck.”
Of course. Why would a man with options choose to get involved with me now? Luis’s reaction had confirmed my fears. I closed up my Hollywood home with a heavy heart and flew to New York.
DR. JULIA SMITH is a tall, handsome woman with silver gray hair and warmth that fills a room. Her office is at the NYU hospital, where my mother had been treated and where I planned to have my surgeries. Dr. Smith is the director of breast cancer screening and prevention at the NYU Cancer Institute and the director of the Lynn Cohen Breast Cancer Prevention Care Program. It took about ten seconds to recognize that she was extraordinary. She was doctor, scientist, mentor, philosopher, and earth mother wrapped up in one.
Dr. Smith helps high-risk women take action before they get cancer. She counsels women about the benefits and drawbacks of learning their BRCA status before they’ve been tested, and then advises them about their options after they’ve been tested. By the time I met Dr. Smith, I knew my BRCA status and had already made the decision to undergo surgery. What I needed was reassurance and support. During our first appointment, Dr. Smith examined me, and then we spent two hours talking in her office. Her attention was rapt and complete as I told her my history.
“Once cancer strikes, the world changes,” she said. “The axis of the planet shifts and you will never experience it the same way again. Listening to my cancer patients describe how they feel is strikingly similar to how people describe feeling after 9/11. The threat of a terrorist attack had always been there, had always been the same. However, people’s understanding and awareness of it changed after 9/11. Cancer is like a terrorist attack from within. You’re going along, doing your thing, you know the threat of cancer exists theoretically, but you’re not thinking about it, it’s not coloring your life. After it strikes, even if it is ‘cured,’ you will always be on red alert, waiting for it to return.”
While Dr. Smith acknowledged that prophylactic surgery was not right for everyone, there was no question that she endorsed my decision. During our first meeting and throughout the summer, whenever I grew frightened or doubtful, she continued to affirm that I was doing the right thing.
“I’ve made up my mind,” I said that first day. “But I do lie awake some nights worrying that I’m being overzealous. Friends keep reminding me that I don’t have to have the operation right now … that I could wait a few years ….”
“Remember that this surgery is noninvasive, Jessica. It’s external. If you wait until you get breast cancer, you will do the mastectomy anyway and then you’ll likely have to put toxins into your body—chemotherapy, tamoxifen. Plus, we will never know for sure that the cancer is gone. From that point on, we will have to be worried about your life.”
My dad had persuaded me to take the BRCA test a second time, to be absolutely certain that the results were correct. The test cost three thousand dollars and insurance would not pay for it twice, so my father had written me a check on the spot. If I was going to go forward with mastectomy, he insisted that we know—without a shadow of a doubt—that I carried the mutant gene. I’d told him what Dr. Anderson had said: That kind of mistake would be such an anomaly it would spur a national medical conference.
“So let them have their conference,” he said. “I’ve been trying malpractice cases for over forty years. Labs make mistakes.”
Dr. Smith brought me back into the exam room and drew my blood for the second BRCA test. I had a moment of giddiness, imagining the results coming back negative. How crazy and wonderful would it be if this nightmare was all just a lab mix-up?
I made an appointment to see Dr. Smith again in two weeks to get the results.
In the subway on my way to see Dr. Smith for the second time, I indulged my fantasy of receiving negative results. I imagined her incredulous expression as she told me about this unprecedented occurrence. She’d say it was a one-in-a-million incident, like a hospital sending a new mother home with the wrong baby. The new results would show with certainty that I was negative. I was free to go, resume my normal life, run out of the hospital into the sunshine and never look back.
“Your test came back positive, Jessica,” Dr. Smith said as I walked into her office. I sat down, deflated. “The results are identical to the first. You have the 187delAG genetic variant. It’s one of three founder mutations, and it’s the variant most common among Ashkenazi Jewish women.”
Though I knew it was irrational, I felt surprised all over again. Like my mother, I was an optimist until the bitter end.
Now that all doubt of my genetic status had been removed, we returned to the matter at hand—planning my operations. I had decided that I wanted to use my mother’s breast surgeon, Dr. Daniel Roses, for the mastectomy, and had already scheduled an appointment to see him. Dr. Smith recommended that I meet with the plastic surgeon Dr. Miyhe Choi for the reconstruction.
“Oh, there’s a young woman I want you to meet,” Dr. Smith added, as I headed toward the elevators. “Her name is Donna. She’s just about made the decision to schedule her preventative mastectomy. You two have a lot in common.”
Later that week I scheduled an appointment with Dr. Choi. Danielle had also moved back to New York—to move in with Bruce—and accompanied me. Dr. Choi was petite and beautiful. Her many years of practice indicated she was older than I was, though she could have been mistaken for a medical student. The three of us sat in her office while Danielle and I recounted our mother’s history and my subsequent BRCA testing. Dr. Choi quietly added that she’d also lost her mother to cancer and surprised us (and herself) by welling up with tears. The moment passed quickly, and, though subtle, it was evident that Dr. Choi felt embarrassed over letting her guard down in front of patients, but I loved her for it.
Dr. Choi agreed that we should re-create breasts with implants. She said I did not have enough fat or skin on my stomach to create two breasts of any size. Though she could create flaps through microsurgery from my buttocks, she felt the scars would be too deforming. For some patients, she preferred autologous reconstruction (using body tissue from donor sites) because there are advantages to using your own body tissue rather than inserting foreign objects. Implants require monitoring, and on occasion, scar tissue will form around them, which causes hardening of the new breasts, whereas body tissue creates a soft, natural feel. On the other hand, autologous reconstruction requires extensive surgery and a far more difficult recovery. Dr. Choi didn’t feel that my body type was optimal for flaps; in addition she didn’t think I should undergo more extensive procedures than necessary.
Dr. Choi talked us through the mastectomy and reconstruction process. After Dr. Roses removed the breast tissue during the mastectomy, Dr. Choi would be called into the OR to put “tissue expanders” under my pectoralis major chest muscle that would form a pocket. The skin and muscle had to be stretched gradually over the course of a couple months by the expanders to make room for implants. She would fill the expanders with saline during the initial procedure so that I would never be fully flat-chested. When I woke up from the operation, I would have slight breast mounds, equivalent to an A-cup. I’d spend about four days in the hospital and would have surgical drains attached to me for at least a week. Assuming the incisions were healing well, two or three weeks post-op I’d begin getting weekly “fills” at Dr. Choi’s office—saline injections that would inflate the expanders. I could decide what size I wanted to be as we went along. Once I was happy with the size, we would do one final fill (it’s necessary to overexpand to fit the desired implant size) and schedule my “exchange surgery.” The first operation—the mastectomy—would take around three to four hours and would be the most difficult procedure. The exchange surgery would also be done under general anesthesia, but I wouldn’t need to stay in the hospital overnight. The final surgery would be for nipple reconstruction. From beginning to end, the procedures would span five to six months.
I launched into my speech about how I wanted smaller breasts, how all these years of being a D-cup had driven me crazy. I wanted to wear slip dresses and tank tops with ease. I wanted to burn my vast collection of underwire minimizer harnesses. I no longer wanted to be a Russ Meyer supervixen! Dr. Choi laughed and said I could be any size I desired. I loved having a female plastic surgeon, because to me, the business of breast size was delicate and complicated. The last thing I needed was a male doctor bullying me with his ideals of feminine beauty.
Danielle and I asked questions about saline versus silicone. Dr. Choi said she felt confident in the safety of the newly manufactured silicone implants, though saline was the safest, most conservative route. The newer silicone implants were encased in thicker shells and ruptured far less often than the older models. Also, the consistency of the silicone was more cohesive and less likely to leak. She gave us samples of each to feel, and told me I had plenty of time to think about it.
“What about the new ‘gummy bear’ implants?” I asked. “I’ve read about them online.”
Dr. Choi said they were being used mainly in Europe and had not yet been approved for use at NYU. They were nicknamed “gummy bears” because they had the consistency of the candy and never leaked. But they were harder in feel than the silicone models she preferred.
“Do you have any photographs of your work …?” I asked near the end of our meeting.
“Oh, yes!” Dr. Choi exclaimed. “Let me find them ….”
She foraged around on her computer for images. As we looked at them, Danielle nodded her approval. Dr. Choi’s work was beautiful, and her manner was antithetical to the slick Hollywood doctor’s schtick.
The next day, Danielle and I went to see Dr. Roses. He is an eminent, old-school, hard-boiled surgeon and a man of few words. As Liza Wherry had described in her letter, Dr. Roses showed uncharacteristic emotion when speaking of our mother. His eyes flickered with what could be called wistfulness as he referred to her as an extraordinary woman. He commended me on my intelligent decision to undergo prophylactic mastectomy and assured me of how rigorous he would be in removing my breast tissue. Like Dr. Anderson, he advocated a skin-sparing double mastectomy. His secretary (and wife of many years) called Dr. Choi’s office to coordinate a date. The mastectomy was scheduled for September 12. Two months away.
I WAS LIVING in Harriette’s Fifty-seventh Street apartment and trying to work on that screenplay I’d been toting around in my head and—like every other Hollywood writer—had never gotten around to writing. I found myself falling into lethargy tinged with depression, sleeping far more than typing. I spent many weekends with my old friend and ex-boyfriend Jonathan and his wife, Alexandra, at their house in the Springs of East Hampton, which lifted my spirits. Alexandra is a dark-haired beauty who had been a lesbian at Vassar and beyond. It wasn’t until her midtwenties that she shifted her romantic orientation to men and shortly thereafter met Jonathan. Alexandra’s ex-girlfriend Amy remained in her life as her best friend. Amy and I were each other’s counterparts in this postmodern urban family: I was Jonathan’s ex and best friend, and she was Alex’s. Jonathan and Amy had striking similarities—both were sharp-witted, cerebral, funny Jews with enormous hearts. When they were together, it required great effort to keep up with their lightning-speed banter. Alexandra and I could be mistaken for sisters and had similar sensibilities—we were both emotional, effusive, girl’s girls. (Jonathan and Amy would joke they had the same taste in women—feminine, dark-haired, large-breasted Jewesses. Though soon enough—I enjoyed reminding them—I would have small breasts and no longer be their type.) Amy and Jonathan formed their own singular friendship, as did Alexandra and I. Since Amy and I were both single, we all joked that if only I were into women, everything would fall into place. (A few years later Alexandra would give birth to a baby boy and they would ask Amy to be the godmother, after which Jonathan would special-order a bib that read “My Mother Dated My Godmother, Beat That.”) The other common denominator among the four of us was that all of our mothers had died. Jonathan’s mother had committed suicide when he was six; Alexandra’s mother had died of breast cancer when she was ten. Amy’s mother had died of breast cancer one year before my mother died of ovarian cancer. This created a unique connection, a heightened empathy among us. When my mother was gravely ill, Jonathan and Alexandra called every day from their honeymoon. They began to refer to me as their “Mormon wife,” though it would have been more accurate to call them my surrogate parents. There was something extremely comforting to me about being around Jonathan and Alexandra. I felt fully myself and most at ease. The only strain—and it was subtle—had to do with my pending mastectomy. Alexandra’s mother (an Ashkenazi Jew) had been diagnosed with breast cancer in her early forties, which placed Alex in the high-risk category for a BRCA mutation. Alex was trying to get pregnant that summer and was not ready to face this threat. I had no wish to proselytize and didn’t, but my upcoming surgery was an ever-present reminder that she too was at risk.
AT MY NEXT APPOINTMENT with Dr. Smith, I found a pretty young woman sitting in her office.
“Jessica, this is Donna—the woman I was telling you about. I scheduled overlapping appointments so you two could meet.”
Dr. Smith left us alone in her office. As had happened with Suzy Hurley, Donna and I instantly fell into intimate conversation, losing all sense of time. An hour passed before Dr. Smith had to reclaim her office, at which point Donna and I scheduled a dinner date to continue our conversation later that week.
Donna Estreicher was born in 1971 on Staten Island. She was the youngest of three girls in a Jewish family and two years younger than I.
Donna’s maternal grandmother died of ovarian cancer in her fifties, and her paternal grandmother died of ovarian cancer at age eighty-six. Donna’s mom got breast cancer at fifty-eight. She’d been on hormone replacement therapy after menopause, which was thought to be the cause. The tumor was small and contained, so chemotherapy wasn’t necessary—she had a lumpectomy and radiation. She never got very sick, and Donna’s life was not much affected by her mother’s cancer. She didn’t experience it as terribly scary or life-threatening.
Five years later, in 2004, Donna’s oldest sister, Beth, finished breast-feeding the last of her three kids and was unhappy with the state of her boobs—she felt they were flat and empty. Beth began interviewing plastic surgeons for a boob job. The third plastic surgeon she met discovered a lump. Just two months earlier she’d gone for a mammogram and had been given clean results. She was thirty-seven.
Beth immediately went to a breast surgeon, who discovered a second lump in the same breast. It was revealed to be an aggressive cancer. Because she had a family history and was so young, Beth was given the BRCA test. She tested positive for BRCA-1. Beth scheduled a double mastectomy and eight months later an oophorectomy. Her cancer was estrogen receptor (ER) negative. ER-negative tumors are less responsive to hormonal or biologic manipulation as they lack the targets for agents such as tamoxifen—meaning ER-negative cancer is more difficult to treat because there are fewer nonsurgical options and it is more biologically aggressive. Because of the nature of her cancer, Beth was told she had a 20 percent chance of recurrence even with mastectomy and chemo.
Carolyn, the middle sister, was thirty-five with two kids and took the BRCA test right away. She tested negative. Their parents were tested, and surprisingly, the mutation was passed down from their father.
Donna was thirty-two and single when Beth was diagnosed with breast cancer. At the time, she resolved that she would never take the BRCA test because she would never have a mastectomy.
Beth was very private about her experience with breast cancer, so when she invited both sisters and their mom to join her for a Young Survival Coalition weekend in Philadelphia, Donna was overjoyed that Beth had reached out and included them. Donna did not give any thought to how the weekend might affect her emotionally.
One thousand women, at all different stages of breast cancer, attended the conference. Some were currently undergoing treatment; others had been in remission for five years or more. Each wore a Hawaiian lei around her neck to indicate how long she’d been a survivor; every color represented a different length of time. There were seminars on different topics throughout the day, and the Estreichers attended whatever sessions interested Beth. They went to many that focused on how destructive chemotherapy is to the body. People spoke of how chemo had affected their mental capacities—what they called “chemo brain.” Others described symptoms like diminished libido and premature menopause. Donna was traumatized by these lectures and left the weekend more frightened of chemotherapy than of cancer.
After that weekend, Donna was an emotional wreck. She kept thinking, “I’m a time bomb.” She would dissolve into tears with no apparent provocation. Of the three sisters, Donna and Beth were the most similar—they looked alike, had the same mannerisms and temperaments. Donna felt sure she carried the mutation, but she still resisted taking the test.
One day on the bus, Donna had an epiphany—she described it as a “flash.” “Wait a minute, why can’t I get a mastectomy? Why not? Why have I written it off as a possibility?” She made an appointment to talk with Beth’s breast surgeon and consider this further. Donna didn’t want to take the BRCA test unless she was ready to take action.
Startlingly, upon examination, the surgeon felt a lump in Donna’s breast. The doctor performed a needle biopsy immediately and the results were negative. Yet because of her family history, the surgeon recommended lumpectomy. This scare spurred Donna on to schedule the BRCA test. She resigned herself to having a mastectomy if she carried the mutation.
In April 2005, at age thirty-three, Donna received her positive results.
She had the lumpectomy anyway, because she needed more time to process this information before removing her breasts.
Now, in July 2005, Donna and I were sharing a bottle of wine in an Italian restaurant on the Upper East Side. We both confessed to being edgy and depressed in a large sense, though at the moment, we were reveling in each other’s company. Like me, Donna was tormented over the fact that she was single. “It’s hard enough to meet someone,” she said. “Now I’m going to have a disfigured body?” She said that she had no interest in talking to anyone who had a prophylactic mastectomy and was married. As far as Donna was concerned, if someone already loved them, they were not in the same boat.
Donna took a sip of wine. “I guess I feel angry,” she said. “It’s almost like I’ve been told that I’m already sick, that I’ve already been diagnosed with cancer.” When she went to parties and people casually asked, “How are you?” she felt unable to engage in mindless chitchat or act normally. She felt different from those carefree people, isolated. She was shrouded by her BRCA status.
I told her that I found I was short-tempered lately, too, and had no tolerance for most people. When my friend rattled on about her five-year-old son resisting sleep at bedtime and her insecurity over whether she’d chosen the right kindergarten, I felt disproportionately angry. The slightest thing could push me over the edge. But more often I just felt down. To me, September 12 was doomsday. Life as I knew it would be over. I’d never again be young and whole and free. As the summer wore on, I felt increasingly anxious about time running out.
Donna had scheduled her surgery for November—two months after mine—and she was also using Dr. Choi as her plastic surgeon. We discussed silicone versus saline implants. Donna had done more comprehensive research than I had on the topic—she’d read studies and learned about the different manufacturers. She felt reassured about the safety of silicone and said that if she had to go through all of this, she at least deserved to come out of it with the best possible aesthetic result. I agreed and admitted I’d opted for implants rather than flap reconstruction mainly because I didn’t want my new breasts to sag. We segued into a mutual confession of the guilty pleasures of mastectomy: I said I was incredibly excited to have smaller boobs. She laughed because she was doing the opposite—Donna had the body of a ballerina and was delighted that she’d have large, sexy breasts. We agreed it was sort of cool that we would get to try on a different breast size each week during the expansion process as if it were a new dress. How many women would get to have that experience? We discussed whether or not to have our sentinel nodes removed. The sentinel node is the first lymph node reached by metastasizing cancer cells. In a prophylactic mastectomy, it’s presumed that the breast tissue does not yet have any cancer cells, but the removed breast tissue is sent to pathology to make sure of this. If the path report is clean and no cancer is present, there’s no need to check lymph nodes. However, if cancer is found, the surgeon must determine whether or not it has spread to the nodes. Removing the sentinel node in advance is a safety guard—if it’s not removed and cancer is found in the tissue, another surgery will be required. However, removing the sentinel node can cause lymphedema—a condition that can result in swelling of the arm. There is no medical consensus about whether to remove the sentinel node during prophylactic mastectomy—it’s another instance of patients having to make a decision for themselves. Donna and I concluded that we would gamble that we were cancer-free and not have the node removed. We drank more wine and laughed again at the fact that we were trading boobs—I wanted hers and she wanted mine—and at how we’d been given the unique opportunity to re-create our bodies in a way that matched our inner vision of ourselves. What an extraordinary occurrence.
If the couple at the next table, or the waiter, or the single guy at the bar had been asked what the two young women at the table by the window were talking about so passionately, the answer might have been men or sex or the latest episode of The Sopranos. Not a soul could have imagined we were talking about how we would soon be having our breasts surgically removed.