Authors: Nancy G. Brinker
For me, the situation was cut and dried. No one else was going to hire me. I was five months’ pregnant.
Suzy was overjoyed. All her dreams of our side-by-side happy motherhood and doting grandmotherhood seemed to be coming together. She wanted my marriage to be as comfortable and enduring as hers and hoped the baby would smooth over or at least distract Bob and me from how ridiculously mismatched we were. I was thrilled about becoming a mother. I wanted to have a child … but not with Bob.
There’s no point going into the particulars of a bad marriage thirty-odd years after it came apart. We were just catastrophically wrong for each other. I was deeply respectful of his talents, and I’d like to think he was of mine, but we were ill suited on every level, and because we were two hard-drivers unwilling to concede defeat, we trenched in and stuck
it out a lot longer than we should have. I tried to tell myself it would all be different if we had a baby, and I tried. I did try. But the writing was on the wall.
“I don’t know what to do, Suz.” Our daily phone conversations began to center on this familiar refrain. “I don’t think I can stay in this marriage.”
“You know Stan and I are here for you. You can come home anytime you need to.”
I did know that, but the thought of crawling back to Peoria, alone, unemployed, and pregnant—I couldn’t face the idea of my father seeing me that way. One way or another, I was determined to tough it out in Dallas. My main concern now was making a life for this baby.
Eric was born in October 1975.
“Sunshine breaks through.” Suzy pressed her lips to the top of his head, and he studied her with wide, interested eyes. “He’s perfect, Nan.”
She was gaga over him. Mom and Dad rushed over from their vacation home in Florida. Couldn’t wait to lay their hands on him. My husband tried to dissuade Mom from her plan to stay a few weeks.
“It’s really not necessary,” Bob said. “I’m bringing in a private nurse.”
That didn’t go far with Mommy.
“A nurse,” she said flatly. “Why? Are you ill?”
It was a tense couple of months. In fact, it was a tense couple of years. The radio station switched to a music format, so I couldn’t go back after Eric was born. I wanted to work part-time so I could be with him, so I took a series of project-oriented jobs with various PR and advertising firms. Bob expected me to uphold my busy schedule of charity and social events. He expected the house to be sanitized, the baby food steamed and pureed by hand, and educational activities done by the book. He expected dinner every night on a formally set table with Baccarat crystal, fresh flowers, crisply ironed napkins, and polished silver. He expected the baby to be freshly powdered and dressed like the crown prince of Freedonia.
Divorce was less common back then than it is now; I knew I’d be stigmatizing my son and setting him up for struggle. But I’d grown up in such a happy home, I was equally devastated by the thought of burdening his childhood with the cold war his father and I lived with.
I took Eric to visit Mom and Dad in Florida as often as I could get
away, and sometimes we went to Suzy’s and spent long weekends in Peoria, sitting in the kiddy area at the municipal pool, raking autumn leaves, and throwing those over-the-top birthday parties. Between visits, Suzy and I talked on the phone for hours every day. She was genuinely anguished by the way things had turned out for me, and looking back, I cringe at the amount of time we spent beating that dead horse. If we’d known how loudly the clock was ticking, we surely would have spent that time talking about something else.
Suzy’s and my “dense breast” issues continued throughout our twenties, and now in her early thirties, Suzy had undergone a number of needle aspirations for cysts. On a Tuesday afternoon in the fall of 1977, she called me as she did every day, but something in her voice was off-key, forcibly unafraid.
“This lump is different,” she said. “It’s hard. He did the needle biopsy. It wasn’t a cyst. I guess they have to take it out so they can say for sure.”
“Oh, my God. Suzy, let me go with you.”
“No, no, no. That’s not necessary, Nan. Don’t be silly. I’ll call you when I get the results. You know it’s going to be nothing.”
“Right,” I said. “So I’ll be there to celebrate with you when it comes back negative.”
I made arrangements for Eric, called the airline for a ticket, told Bob I was going, called work and left a message, all the while feeling like my heart had shifted into an uncomfortable thrumming overdrive. Flying out of Dallas, I was acutely aware of the vast emptiness between me and the earth.
Daddy was waiting for me out on the tarmac in Peoria, his expression fixed and ashen. He didn’t say a word when I came to him.
He didn’t have to.
Suzy has cancer
.
This was now the fulcrum on which everything balanced. When we sat down to dinner, we didn’t know how to pray or pick up our spoons. How could we eat if
Suzy has cancer?
How could anyone lie down to sleep? Do you put sugar in your morning coffee when
Suzy has cancer?
Should I tie Steffie’s little shoe and send Scott outside to play or tell them to sit quietly in a chair and wait for the sky to fall? We sat around her kitchen table like soldiers in a foxhole.
I could tell Suzy was terrified, because historically, in the everyday crises of life—a flat tire, a blown fuse, or a fender bender—she always required a lot of hand-holding. Now all she wanted to do was comfort me and Mom and stuff Stan and Daddy full of home cooking. She had the desperate bravado of someone rising to the occasion. Grace under pressure was something she’d always admired, and she was digging deep for it now.
“It’ll be all right. You’ll see,” she said. “It’s not like I’m sick or anything. I feel fine. The most important thing is to get through it quickly and quietly so it doesn’t upset the kids.”
“Yes. Of course. Right,” I agreed too much. “We’re not going to panic. Once we have all the information, we’ll move to the problem-solving stage.”
“I have all the information I need, Nan. All I want to know is what time to show up for the surgery so I can get it over with and never think about it again. The surgeon says there’s no need for me to have a mastectomy like … like some people used to have.”
“Suzy, a mastectomy wouldn’t be like Aunt Rose’s.”
“I can’t even think about that,” she said. “Jesus. If anything like that happened to me, I’d just—I don’t know. I’d want you to find a way to kill me. I’d rather be dead.”
“
Don’t say that.
” I bit my lip, tried to soften my tone. “Suz, it’s not like that anymore.”
“Not at all. It’s just a small incision, then he puts in an implant, and you’re cured.”
“Cured?” I echoed. “He used the word
cured?
He didn’t say
remission?
” My mind circled back through all the luncheon speakers I’d endured. Had any of them ever said
cured
in the same sentence with
cancer?
“Is he suggesting chemotherapy or radiation?”
“No, no, no.” Suzy waved that off. “Dr. Moffet said something about radiation, but the surgeon says it can leave scars, and I don’t want anything like that.”
“Suzy, M. D. Anderson is one of the best cancer centers in the world. I’ve worked on fundraisers for them, had physicians and researchers on my show. I’m sure one of them could help us get in. Just to get a second opinion before the surgery.”
Suzy shook her head, adamant. “Nobody knows me like Dr. Moffet
does. He’s been taking care of me since I was born. Why would I want some stranger?”
“Because the stranger is an
oncologist
. A cancer specialist. Suzy, you have to get a second opinion. Mommy? Tell her.”
Mom started to say something, but Suzy held up her hand.
“Please. I’m not you, Nan. I need to get through this my own way. I love this surgeon. And I trust him. He and Dr. Moffet say I’ll be fine, and I will be.”
The day of Suzy’s surgery, I met the surgeon and thought,
What’s not to love?
He was striking and suave, extremely good-looking. Most attractive was the way he told us all exactly what we dearly needed to hear. Confident as a big brass bell, he strode into her hospital room and said, “I got it all. She’s cured.”
He didn’t ask if we had questions, and when I tried to volunteer one, he made it clear that he was not there to discuss things with us—only to inform us. He’d bestowed the blessing of his great skills and was handing our girl back to us, sewn up with a bow. Our gratitude was the appropriate response; our questions would be an insult to his expertise, and the answers would be beyond the scope of our intelligence anyway. He’d done a subcutaneous mastectomy, removing tissue through a deep incision and leaving the outside of the breast intact for the most part. Ten days later, he did an implant. It wasn’t beautiful work, but it made her feel whole again. Within a few weeks, Suzy seemed fine, a relatively small scar the only evidence of her narrow escape.
She was ecstatic and ready to blaze back into her life, but even after I went home to Dallas, I kept nudging her to get a second opinion. I tried to enlist Mom’s help, but I think she was as grateful and as happy as Suzy was to embrace the prognosis the surgeon had declared so confidently as fact. And besides that, Mom was always better than me at an aspect of patient advocacy that eludes a lot of people: respect for the patient’s autonomy. Ultimately, these were Suzy’s decisions to make. This was her body, her life. As far as she was concerned, she’d been cured of her cancer and didn’t want to spend any more of our daily phone conversations hashing it over.
“You have no idea how terrified I was,” she said. “I just want to put it behind me.”
“I know, Suz, but the thing is … I called a friend at M. D. Anderson and at the library this morning, I spent hours reading all about medullary carcinoma. What that means is …”
“Nancy. Please.”
“Sometimes a surgeon or a physician who’s not a cancer specialist—he sees the border of the tumor and thinks it’s okay, but this book said a lot of oncologists say it should still be treated as if it’s invasive.”
She winced at the sound of the word.
“Just stop, all right? I don’t want to hear about
carcinoma
and
tumors
right before I sit down to dinner. And I think the surgeon probably picked up a little more in medical school than you gathered in one morning at the library.”
“Look …” I tried for a conciliatory tone. “Just come down for a visit. We’ll run down to Houston for the afternoon, get the second opinion, then hit the Galleria. Shop till we drop.”
“Nan, let it go,” said Suzy. “You’re just fixating on this so you don’t have to deal with your own problems.”
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.
S
INCE 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 asking 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.”