I suppose that may have been true. Suzy did appear to be fine. She was rosy and busy again, right as rain with the exception of a light, rasping cough that seemed to linger. It was a common postoperative complaint, she was told; a person’s throat is always a little irritated by the intubation. Meanwhile, my life was on the edge of unbearable. I was back on the Baccarat-crystal-and-cut-flowers routine, trying to make up for lost time with Eric, working one of those “part-time” PR jobs that actually require ten hours a day, and hunting for work in which I could invest my heart and soul. Of course, no matter how hard I worked, it was never up to that standard of perfection, and I was getting tired of hearing what a lazy pig I was.
“You have a beautiful baby boy. That’s all that matters,” Suzy kept saying during a hundred marathon phone calls we spent agonizing over it.
Inevitably, one evening Bob came home to find nothing on the table but a white linen cloth. I was in the kitchen, hastily hacking a romaine salad into a Steuben bowl, the baby howling on my hip. My husband shook his head dolefully and said, “What have you been doing all day?”
This was not the right thing to say. All that whiteness, that smug church-bell rightness—it was too much. I picked up the salad and dumped it on his feet.
“That’s what I’ve been doing. Now get the hell out.”
He looked down at his expensive shoes, looked up at me, laughed uncertainly.
“I’m not kidding,” I said. “Get some shirts and go. I’m changing the locks tonight—as soon as I can get someone over here.”
He didn’t believe I was serious until the locksmith arrived.
It was a powerful moment, but not a particularly liberating one. Now I was alone with this toddler to raise. But he didn’t require Baccarat crystal and cut flowers—just a free exchange of unconditional love. Eric and I immediately settled into a hardworking but happy life together. All the time and energy I’d been investing in ironing napkins and tap-dancing on eggshells I now devoted to things that actually mattered: my family, interesting work, and worthy causes. I kept my ear to the ground for any new information about breast cancer, but no one said much about it. After a while, I relaxed into the assurances that Suzy was fine.
Elisabeth Kübler-Ross: “When you learn your lessons, the pain goes away.”
It had been a hard year, but I wasn’t hurting anymore.
Mystery and Method
SINCE SHE lost her best friend to cancer at age fifteen, Dr. Mary-Claire King has been asking the same questions asked by survivors, cosurvivors, caregivers, and scientists—any and all of us who’ve stared at the ceiling, needing to know one thing:
Why?
A brilliant mathematician, Mary-Claire graduated from Carleton College at nineteen and went on to earn her Ph.D. in genetics and epidemiology from the University of California at Berkeley. Her college years were a tumultuous mix of science and activism; she immersed herself in the origins of people and politics, wanting to know everything about who human beings are from the cultural level to the molecular. She shook things up when she demonstrated that the genetic profiles of humans and chimpanzees are 99 percent identical. She helped fight human rights abuses in South America, working with Las Abuelas—“the grandmothers”—using mitochondrial DNA to identify and return children who’d been abducted from mothers “disappeared” by the military during Argentina’s Dirty War. But she spent most of her career curiously digging for genetic connections to the predisposition for breast cancer.
In the 1960s, scientific understanding of cancer was all about what. Researchers knew what cancer cells looked like, what they were capable of, what effect the disease would have on its host.
“But it was very frustrating,” says Mary-Claire, “because we didn’t have any understanding or sense of why these processes were occurring. Exactly what was happening, why it was it happening, when was it happening, how was it happening, all the questions you ask of mystery.”
In President Nixon’s State of the Union address in 1971, he famously declared war on cancer. Cynics viewed it as PR sleight of hand, particularly in light of subsequent events, but Nixon asked for an appropriation of $100 million to back it up and signed the National Cancer Act of 1971 into law, saying he hoped it would be viewed as “the most significant action taken during my administration.” Fort Detrick, a biological warfare facility in Maryland, was converted to a cancer research center. The National Cancer Institute was given budgetary authority within the National Institutes of Health.
Another harmonic convergence of message, money, and moment.
Significant funding materialized just as the entirely new scientific field of molecular biology was finding its feet. Molecular genetics and genomics opened doors and windows, and light poured in, illuminating the most infinitesimal dark corners of the body human. The science translated to patient care in the form of clinical trials. Foundations were laid for future breakthroughs. Now scientists were able to remove tissue from the body and manipulate individual cells, evaluate individual genes, scrutinize every protein and base pair.
What became what if.
For hundreds of years, physicians and researchers had speculated that some cancers were inherited, but if Mary-Claire King had advanced the idea that all cancer is genetic back in the 1970s, she would have been laughed at. The influx of cancer research funding in the early 1970s swung the gate wide for molecular genetics to evolve into a working field; now molecular genetics of the 1980s would ignite an exciting new era in cancer research with the realization that, while not all cancer is inherited, all cancer is genetic.
If that seems counterintuitive, think about it this way: Your grandmother’s opal ring is inherited, but it’s not genetic. The mutation that turned Bruce Banner into the Incredible Hulk was genetic, but not inherited.
Only about 10 percent of cancers are passed from parent to child, but all cancers arise from some change in the DNA. The gene is mutated, and the cell malfunctions. Normally, cells grow, do their thing, and die off at a nice, steady pace. Imprinted on that tiny universe-unto-itself is a functional wisdom; each cell knows exactly what it is and what it’s supposed to be doing. Cancer happens when that wisdom is short-circuited by genetic aberration. Cell growth takes off like a runaway train, forming tumors, invading tissues, hijacking resources the body needs to survive. That elegant wisdom every healthy cell is born with becomes a kamikaze intention to maximize the damage on its way to self-destruction.
Dr. Mary-Claire King was already a bit of a rock star in the exclusive, sterile universe of molecular biology, and she’d been pondering the inherited predisposition for breast cancer for a long time. Early in her career, she’d begun assiduously collecting tissue samples from hundreds of women in about two dozen families for whom breast cancer had been a scourge from one generation to the next, afflicting more than a third of the mothers, daughters, and granddaughters. Almost twenty years later, she had methodically narrowed her search to 50 million base pairs on chromosome 17.
And there it was: a clear path to one of the most important discoveries in the history of breast cancer research. Dr. King had proven the existence of a breast cancer gene, and she knew where to find it. She announced the breathtaking discovery in the fall of 1990. The entire scientific community was thrilled. This was beyond a needle in a haystack; this was a needle in a wheat field.
The dog race was on. Every research team in the field began tearing through chromosome 17 in an effort to isolate the gene. It would be a PR coup that would translate to additional funding and major bragging rights. Dr. King’s team in Berkeley ramped up their pace, putting in endless hours, keeping their work a closely guarded secret. Their hearts sank when a team from the University of Utah called a press conference in 1994 to announce they’d successfully identified and cloned the mutated gene—called BRCA1, for “breast cancer susceptibility gene 1”—and a team from Surrey, England, followed suit within weeks.
People expected Mary-Claire to be bitter, but she told a reporter, “I keep as
king myself, am I suddenly going to feel terrible about this? But I don’t.”
She was elated. It was the answer she’d always craved, not the accolades.
BRCA1 and a second mutated breast cancer susceptibility gene—BRCA2—are carried by one out of every two hundred women, and 80 to 90 percent of them will develop breast cancer. Between 40 and 50 percent of the women who carry the BRCA2 mutation will develop ovarian cancer as well. The goal now is to use this knowledge to develop methods of cell-specific detection. Mutations happen, to coin a phrase. It’s not likely that gene mutations can be entirely avoided, but it is likely that we can make invasive cancer a thing of the past by circumventing its progress before it has a chance to even think about becoming a tumor. And it’s entirely possible that this lifesaving treatment will be no more invasive than a needle biopsy. The genetic testing kit requires only a swish and spit from the subject.
I tested positive for the mutation, so I’m guessing Suzy would have too, if she’d lived to be tested. She died just as Dr. King was beginning to understand this spiraling ribbon that binds my sister and me at the wrist. It was part of our shared destiny, in us before we knew who we were, and we knew who we were from the day we were born. Suzy and I came from good people. The mutated BRCA1 and BRCA2 are handed down by both men and women, and they are particularly prominent among Ashkenazi Jews—Jews of German and northeastern European descent.
They call it a founder effect.
“It’s been very interesting to understand at the molecular level what the nature of carcinogenesis is. For example in lung cancer, we now have a really clear understanding of why smoking causes lung cancer,” says Mary-Claire. “Many cancers, though—breast, ovary, much of colon—develop despite their victims’ having done everything right. Breast cancer, for example, is very much the consequence of the normal life cycle of healthy modern women. Risk factors for breast cancer are related to hormones. They are also minimally related to the use of hormone replacement therapy. But most of the risk of breast cancer has to do simply with our being the most successful mammals there have ever been.
“We are very good at reproducing at young ages and continuing to reproduce at what used to be old age, the forties. This means that the ductile cells of the breast—the cells that line the ducts that are responsible for lactation—have the richest possible environment in which to live. They also have that environment if they’ve gone mutant. So breast cancer in particular is a consequence of a very healthy way of life.”
SGK began funding Mary-Claire King’s research in the early 1990s. Including a recent grant that enables her team to continue the search for unidentified genes in high-risk families, we’ve provided almost $1 million for her important, ongoing work. In 1999, SGK presented her with the Komen Brinker Award for Scientific Distinction to recognize her stunning achievements and to honor a lifetime devoted to the science of saving lives.
I thanked her. She thanked me. We hugged. Oh, did we hug.
“I’m so proud of you,” I told her. “It’s been thrilling to watch. Some of the most important research we’ve ever funded—or ever will.”
For me, the most difficult aspect of getting my head around cancer research (second only to the challenge of spelling things correctly) is the snail’s pace it seems to take. Mary-Claire is able to take that in stride.
“It’s easily twenty years between a first, very relevant discovery and an end product that reaches a patient at a bedside,” she says. “It’s remarkable to me—and enormously heartening—that this society understands that. That this society has been willing to put enormous amounts of resources into the work of a very large number of people with the expectation that collectively we will come up with answers.”
∼ 7 ∼
Wake Up, Little Suzy
I didn’t let much grass grow under my feet. Within a month of changing the locks, I went to work as an account executive at a terrific advertising agency in Dallas and started dating a great big swashbuckling rancher. Other than the cowboy boots and mud-spattered Mercedes and private jet, he was a throwback to that born-to-be-wild boyfriend I’d loved in college.
Suzy didn’t like it one bit.
“Nan,” she sighed. “It’s hard enough to be a good mother without all these distractions.”
“I hardly call life a distraction. Someday when you’re old, you’ll be sorry you never had any fun.”
“I have fun. You were at Steffie’s birthday party. What’s more fun than sixteen four-year-olds?”
“You really want me to answer that?”
“No, I want you to meet a nice Jewish man who wears regular shoes and hasn’t been divorced twelve times.”
It was a joy to kibitz over sisterly things instead of the dark cloud. To ask each other, “What are you making for dinner?” or “Did you see All in the Family last night?” We laughed about the clothes people were wearing to Studio 54 and chattered over plans to visit Mom and Dad in Florida that summer. Those months were like an oasis. A luxury. I see that now. Once again, the heartbreak was that it didn’t last.
Six months after her original diagnosis, Suzy called me, beyond distraught.
“Nan, there’s a hard lump under my arm.”
“Oh, God. Oh, Suzy.…”
I covered my mouth with my hand. Denial. Anger. Bargaining. Depression. I felt them all hit me at once. Everything except acceptance.
“You can fight this, Suz. We will fight this together.”
“Nanny, I’m scared.”
“I know. Me too.”
I brought up the idea of M. D. Anderson again, but Suzy wanted to go somewhere familiar. When Mommy’s uncle was dying, she’d taken him to the Mayo Clinic in Rochester, Minnesota, and Suzy had gone there to visit him and to support Mom. So Suzy went to Mayo.
She and Stan had chosen not to tell their children about any of this, and she was adamant about keeping it from them as long as possible. For me, not telling Eric was a simple choice; he was a preschooler, far too young to understand, and didn’t see Suzy on a daily basis. It was a more difficult call for Suzy and Stan: Scott was a smart, sensitive boy already in elementary school, and Steffie was this tender, tiny girl still at that age where Mommy is everything—love, warmth, water, light, the house you live in, the center of the universe. Suzy loved them both with the ferocity and vigilance of a mama tiger, and what was best for them was the touchstone by which she made every decision over the next two years.
The first step would be to open her eyes, and she was ready to do that now. She was ready to know everything she didn’t want to know. At the Mayo Clinic, she saw an oncologist and began a battery of tests. Scans showed the cancer metastasizing to lymph nodes under her arm. There was also a tumor in her right lung. Other “suspicious shadows” haunted the images elsewhere. The oncologist who assessed her recommended thirty days of radiation.
“Then what?” I asked when Suzy called to update me.
“Then we watch it for a while,” she said.
I had to physically bite my tongue. We all felt like we’d just stepped out of a storm cellar into a tornado; watching wasn’t a course of action that really resonated for me. Suzy considered it, talked it over with Stan, and decided to do the radiation, but at the end of the thirty days, scans showed the cancer advancing unabated, raging through her lymphatic system, lungs, and other organs. Watching wasn’t even an option.
“The next step is an oophorectomy,” she was told. “Sometimes there’s remission or at least some shrinkage in the tumors after removal of the ovaries.”
Of course, we now have a better understanding of the connection between estrogen receptors and certain types of breast cancer, particularly the type of breast cancer that strikes younger women—thanks in part to research funded in Suzy’s name. Scientists had been speculating since the early 1900s, but in 1978, finding the estrogen-breast cancer connection was still a bit of a fishing expedition.
“What happens if that doesn’t work?” Suzy asked.
&
nbsp; The oncologist shook his head. Suzy went ahead with the surgery, hoping for the best, but we didn’t see any immediate improvement.
Less than thrilled with the reconstruction she’d had after the subcutaneous mastectomy, Suzy had previously consulted a plastic surgeon in Peoria. She liked and trusted him, and when she asked his opinion, he recommended M. D. Anderson in Houston.
“I guess she needed to hear it from someone other than her little sister,” Mom told me. “She’s decided to go there.”
However she got there, I didn’t care. Weak-kneed with relief, I got on the phone to my Houston contacts.
Waiting to hear her name called in one of the many waiting rooms where we’d spend much of our remaining time together, Suzy elbowed me and said, “Fancy meeting you here.”
In the moment, it felt good to laugh a little, and in retrospect, I cherish the way Suzy and I stayed ourselves, together, through all that was to come. We laughed, talked about our kids, made healthy observations about handsome young doctors, and never stinted on saying “I love you.” All the good moments stand out with intense sweetness, because running through every waking hour was the deep undercurrent of fear and sadness. She felt betrayed, I think, by the handsome surgeon, by God, by her own body, and by her woman’s intuition. The injustice of it was flatly infuriating to me.
“What kind of sense does it make?” I seethed. “Why should this happen to someone who does nothing but good for other people?”
“You’re right,” said Suzy. “I should be rich. Living on the French Riviera.”
“Purely from a personnel management point of view, wouldn’t it make more sense if this sort of thing would happen to an ax murderer?”
“God really should manage these things better.”
“I’d be happy to provide Him with a list.”
Suzy laughed and leaned her head on my shoulder. As an hour or more dragged by, we both nodded and drifted. For a moment we were on a train bound for Munich.
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