I lay back on the gurney, and a short curtain was placed under my chin so I wouldn’t be able to see the procedure. Awake and aware, I felt the sting of a needle, then nothing as the local anesthesia took effect. Focused on the faces of Dr. Ames and the assisting nurse, I looked for any sign of emotion. Horror at a breast filled with cancer. Or bemusement at this silly, hysterical woman. There was only concentration, a strange sort of artistry.
“All done,” said Dr. Ames. He smiled behind his surgical mask, and I saw the corresponding crinkle at the corner of his eyes. “I’ll see you in a little while with the good news.”
They wheeled me to the recovery room, where I stared at the ceiling, making occasional small talk with Sandy for what seemed like hours but was probably about seventy minutes. As luck would have it, Dr. Blumenschein was gone on a ski vacation. I’d have given anything to hear his voice on the other side of the curtain surrounding my bed.
Where is he? I kept thinking. What’s taking so long?
Then the curtain slid aside with a metallic hiss, and there was Dr. Ames.
“Well, hello there,” I said unsteadily. “Another false alarm, right?”
“No,” he said. “It’s not a false alarm. I’m sorry, Nancy. It’s cancer. I sent it back twice. They confirmed that the tumor was malignant.”
He was good. Didn’t drop eye contact for a moment. I wish I could say I took it well. It’s not like Dr. Ames was telling me anything I didn’t already know in my heart of hearts, but the words broke over me like a swarm of red wasps, and I flailed to my feet, batting at them.
“No! Tell me that’s not right. Tell me it’s—it has to be a mistake.” I choked and started sobbing. “Please, say you’re not telling me this. You can’t tell me this. It’s not true.”
Rage and fear pushed everything else aside and consumed me. I think I’d actually convinced myself that it was going to go the other way, that somehow—by learning enough, doing enough, working hard enough, being good enough—I’d inoculated myself in some way. Or that Mommy had. The screaming unfairness of it forked through me, not for my sake, but for hers. Why should she have to face every mother’s worst nightmare twice in one lifetime? The thought of telling her, ripping her world apart again—I pushed my fist against my side, crying so hard my ribs hurt. Sandy stood there horrified, gripping my hand, knowing there was nothing to say. After a moment, Dr. Ames put his arms around me.
“All right, let’s be calm,” he said. “Nancy, you know the drill here. It was small. We got it early. You’ve got plenty of options.”
“Get them off me.” I gritted my teeth, forcing myself to breathe. “I want them both off. Today. Get them off me right now.”
“Nancy, calm down.” Ames folded his arms in front of him. “We’re not making any decisions like this.”
“It’s my decision, and I want them gone.”
“We’re going to sit down and talk about it. Rationally. After you get dressed and take a minute to call Norman and … you should call your mom.”
I suspect he knew I wouldn’t be moved. This day had been hanging over my head like the Sword of Damocles since the day my sister died. I was terrified of every step on the path she’d chosen, and I wasn’t going to go the same way. I wasn’t going to cling to my breasts or to false hope or misplaced trust.
“I’m sitting,” I told Ames a few minutes later, facing him across the desk in his office. “I’m dressed. I’m rational. I want them off.”
“Nancy, I don’t think that’s necessary.”
“It’s not your call.”
“No, but I’m responsible for helping you make an informed decision.”
“Fred.” I almost laughed. “Do you know anyone who’s as over-informed about breast cancer as I am? You know I think the lumpectomy is a great option for a lot of women. I’ve fought for that procedure to be accepted. I’ve given seminars on the advantages and disadvantages. I’ve memorized the statistical differences. Mastectomy versus lumpectomy, with radiation or without radiation, chemo or no chemo. I also know it’s guesswork. Can you honestly look me in the face and tell me for a fact that this cancer hasn’t already hit my lymphatic system?”
“You know I can’t promise anything. But I can assure you …” He rethought the words he was about to say, knowing I’d heard it before. “Let’s run some tests to make sure it hasn’t spread. We’ll do a full body x-ray, bone survey, blood work. Take that time to really think this through.”
“Oh, I’ve thought it through. A thousand times. I thought it through every day while I watched my sister dying. I thought it through every time I felt anything bigger than a mosquito bite on my breast.” I took a breath, trying to ease the angry edge in my voice. “The tumor is close to the nipple. The cosmetic advantage of a lumpectomy doesn’t even apply here. Why should I risk my life—to any statistical degree—in order to hang on to a breast that’s going to be disfigured and misshapen anyway? For whose benefit would I be doing that?”
“I can agree with that, but what about the right breast? Removing it would be purely prophylactic.”
“That’s correct,” I said without flinching.
“You know as well as I do, the jury’s still out on the efficacy of that.”
“Well, it’s not the jury’s call either.”
I looked at my hands in my lap, cold but steady. I felt as poised as anyone prepared to jump off a cliff, hoping for deep water instead of rocks.
“Can you take the left breast off tomorrow?” I asked. “We can discuss the rest after we get the test results.”
Dr. Ames nodded. “Sounds like a plan.”
He and Doris Bechtold walked me through the battery of tests. Everything but my lymph nodes appeared clear. We wouldn’t know about those until the mastectomy was done. I was admitted to the hospital, and Mom and Norman arrived that evening. I tried hard to be strong because I could see the weariness and fear in their faces, but the sedative I’d been offered (and gratefully swallowed) left me feeling weepy and philosophical. Every time I closed my eyes I could see Suzy, skinny, scarred, and shivering in the hotel bathtub, her translucent skin no longer able to contain the cancer that ravaged her.
“Mommy?” I didn’t realize I was dozing until I jolted awake. “Where’s Eric?”
“He’s at home. Norman went home to be with him.”
“Oh, God, he must be so scared. And Norman. And you must be so scared, Mommy. Are you okay?”
“I’m just fine. Does it hurt?”
“Not really. I just keep touching it because … I’ll never feel it again.”
“I know,” she said, stroking my forehead. “But that’s tomorrow.”
“Tomorrow.” I nodded. “Tomorrow, Mom, we declare war.”
“Yes.” She didn’t look at me like I was dying. “Tomorrow, it’s war.”
“Tonight I just want to feel it.” I cupped my hand over my breast, moving my thumb over the nipple the way Norman did sometimes in his sleep. “It isn’t a bad-looking breast.”
“It’s beautiful,” Mommy smiled. “You wear it well.”
“What should I do about the other one?”
“You’ll know when the time comes.”
I rolled onto my side, and Mommy lay down on the bed with me, spoon-style. I closed my eyes again, allowing myself to be lulled. She talked quietly about being out on the water with Daddy, about the newly remodeled kitchen at Camp Tapawingo, and the matching butterfly blouses Suzy and I had when we were little. There was no pity or fear in her voice. Her hand on my back was relaxed and warm. She had a cot brought to the room so she could stay with me, and her confident, steady tone got me through the night. Every time I jolted awake, she was there beside me in the dark.
“Mom?”
“Right here, sweetheart.”
“It’s going to be just like Suzy.”
“No. Don’t even start down that road.”
But I was already down the road and around the bend. No one could convince me otherwise. For the
first time I think I truly understood how desolate Suzy must have felt.
“Mom, when I’m gone … you have to hold on to Eric.”
“We’ll both hold on to him. You’re not going anywhere.”
“I’ll never have a baby with Norman. We were just getting started. Getting each other figured out. I love him so much, Mommy. What if he looks at me tomorrow and … what if he doesn’t think I’m beautiful anymore?”
“He knows what’s beautiful about you, and it’ll still be there.”
“He’s already been through this once, and it tore his heart out. I can’t stand the thought of doing it to him all over again. I can’t stand hurting you and Daddy … leaving Eric … letting Suzy down. I promised her it would be different, and now here I am. Nothing’s changed.”
“Everything has changed,” said Mommy. “You’ve changed. That’s how I know you’ll be all right.”
I vaguely remember being wheeled into the operating theater early the next morning. Before they put me under, I touched my breast. I didn’t feel warlike. I certainly didn’t see my breast as the enemy. I felt mournful, and my breast felt soft as a rose hip. I tried to touch it one last time as I felt myself drifting away, but when I lifted my arm, it was as heavy and numb as the stone wing of a cemetery angel. The dulled tips of my fingers found the edge of a bandage and some plastic tubing.
It was over.
I’d taken that first terrible step toward survivorship.
Living One Step Ahead
BRIDGET MOONEY SPENCE walks with purpose. Still in her twenties, she’s come a long way, and she has every intention of going a lot further.
Growing up with three brothers, Bridget was as rough and tumble as she needed to be, but firmly grounded in girly-girlness in the tight-knit community of the all-girls school she attended in Baltimore. It was a loving sisterhood, and Bridget’s upbringing—like Suzy’s and mine—instilled in her a sense of stewardship. When she was in high school, she and her classmates participated in a Race for the Cure. Bridget remembers it as a lot of fun, everyone in pink, feeling good about the day, but she and her friends didn’t take much notice of the survivors at that event. Those were mothers and teachers, older ladies—the ones who get breast cancer—and Bridget and her friends were busy being young and invincible. Which is exactly as it should be.
Bridget went on to Boston University to study international relations. Her dream was to travel the world in the Foreign Service, and the opportunity to study abroad during her junior year brought maturity and clarity to that vision. She experienced Europe with the same thrilled appreciation Suzy and I did and returned to Boston for her senior year in 2003.
She wasn’t hypervigilant about doing a monthly breast self-exam. Why would she be? She was only twenty-one, not in any particular high-risk pool, no family history of breast cancer. But with all the reminders—all that pink flapping around every October—Bridget gave it a casual go once in a while, and one morning in the shower, she did feel something peculiar.
“The Mooneys don’t get sick,” she says. “We never go to the doctor. I didn’t even have a doctor in Boston. Mom made my regular appointments at home during vacation.”
But when the small, firm lump didn’t go away, she did confide in a friend, who encouraged her to go to the public health clinic for an OB/GYN exam. Bridget was reassured that this was a fibroma, nothing to worry about at her age—certainly not breast cancer. A mammogram was deemed unnecessary.
Bridget’s biggest worry that semester was where to go for spring break. With all her credits nailed down, she was antsy for graduation, and she was six months into one of those euphoric First Great Romance sort of relationships with a tall, red-haired New Englander named Alex Spence. They’d said the L word. Life was good. But by the end of the school year, Bridget’s stomach was unpredictable and her energy low. The lump in her breast, barely detectable at first, was clearly palpable now, almost protruding. She’d begun to notice a vaguely yellow cast to her complexion, a subtle warning of the cancer that had metastasized to her liver.
“I didn’t know what jaundice is,” she shrugs. “I kept thinking I was partying too hard or maybe had mono—the kind of stuff they tell you to worry about at this age. STDs. Stuff like that.”
When Bridget’s family arrived for graduation, her mother was startled and deeply concerned. She consulted the head of Johns Hopkins and had her daughter on the next flight to Baltimore. Arriving at the hospital with orders for an ultrasound and mammogram, Bridget was asked, “Why are you here?”
“They kept giving me a hard time,” she says. “Everyone kept saying, This isn’t right. You’re too young.”
Bridget was diagnosed with Stage IV breast cancer. (And it isn’t right. She is too young.)
“I’m well spoken, and I have a good handle on my emotions,” she says. “I got through all those conversations just fine, but when I went to tell Alex, I was a blubbering mess. He’s a button-down guy, a New Englander—not a gusher—but he scooped me up and let me cry, and then he said, ‘Put on a party dress. We’ll go out to dinner and talk about how to deal with this.’ He’s a high-school English teacher, God love him, so he has summers off. He moved into my parents’ house and became best friends with my brothers.”
“The first step is chemo,” her oncologist told her. “We’ll operate later. If at all.”
The possibility of a cure didn’t even enter the conversation; the objective was to keep her alive as long as possible, and the clear assumption was that she would be on some kind of chemo regimen for whatever time she had left.
“The worst part for me was having to move home,” Bridget sighs. “I love my family, but I felt like such a dork, hanging out with my parents.”
She started Adriamycin in combination with Taxol; results were immediate and better than expected. The tumor in her liver shrank to the extent that all visible traces of cancer completely evaporated from scans. After a lumpectomy and an intense course of radiation, Bridget went on Herceptin—a brand name for trastuzumab—a powerful new weapon in the breast cancer arsenal.
Herceptin is a monoclonal antibody therapy that uses ingeniously engineered molecules to create a smart little drug that attaches to specific defects in a cancer cell and mimics the natural immune response. Because cancer is essentially part of the host’s body, the immune system—which is designed to spot and attack invaders—doesn’t recognize it as dangerous. Monoclonal antibody therapies recognize cancer, attach to and re-program growth receptors on the cell surface, and deliver radioactive particles that kill the cancer cell without damaging healthy cells nearby, which means the side effects are nothing like the havoc wreaked by treatments that are, of necessity, highly toxic.
The cancer cell is like a serial killer hanging out in a bar; he just blends in with everybody else. Herceptin walks in and—hello—knows him immediately for what he is. She lets him buy her a martini, takes him out for a tango, slips a toxic Mickey in his drink when he’s not looking, and—bam—one less serial killer on the dance floor.
While Bridget was growing up, controversy swirled around clinical trials for this promising drug. Women who’d come to the end of their treatment options were frantic to get in; families tried to go over and under the table, angling for the right slot in the double-blind studies. Researchers (funded in part by SGK) fought to keep it all by the book, laboring through the rightly rigorous process of getting the drugs approved, available, and insured.
“I thank God every day for the people who took Herceptin before me—everyone who made it possible,” says Bridget. “I felt like I’d bought myself some time. They were still negative. ‘Oh, you won’t live ten years.’ But I felt positive.”
She set out to get her life back: got an internship at a magazine, went to visit friends in New York, and landed a corporate job as an IT recruiter in Boston. Before she left home again, Bridget and her family threw a giant party, inviting everyone who’d sent her a card since she started chemo. It wasn’t a g
oing-away party; it was a celebration of moving forward.
A month later, the cancer in her liver revealed itself again.
Bridget attended her first Race for the Cure as a survivor in 2005 and connected with other young survivors, including Deb Kirkland, who started Breast Friends in Baltimore and later traveled with me to Budapest for the Global Advocate Summit. Our Baltimore affiliate was started by my stepdaughter, Brenda Brinker Bottum, whose mother—the famous tennis champion Maureen “Little Mo” Connolly—died of ovarian cancer at a heart-wrenchingly early age.
It’s a small world for young survivors.
In this company, Bridget felt comfortable in her own skin for the first time since she was diagnosed. She hadn’t even considered going without a wig before this. Deb immediately saw the potential in this bright, beautiful girl who was so able to articulate the challenges specific to young women with breast cancer—including the obstacles that delay diagnosis with catastrophic consequences.
“I want to take you to the sororities,” she said. “They’ll listen to you, and they need to hear that breast cancer isn’t just something that happens to your grandmother.”
Bridget got involved, stuffing envelopes, speaking to college students. She liked the IT job well enough, but started looking for an opportunity to become something more. In 2008, she decided to take on the Susan G. Komen for the Cure 3-Day event in Washington, D.C., and loved it so much, she turned around and did the San Diego 3-Day, walking a total of 120 miles to raise $6,000. Two weeks after she crossed the finish line, she and Alex Spence were engaged. A few weeks later, the cancer recurred in her lymph nodes.
“The fairy tale is supposed to be different.” She talks about her lost innocence with some sadness and a thin edge of anger, but no bitterness. “I had to wake up to the fact that this happy ending I kept banking on was not going to happen. This isn’t going to go away, but that doesn’t mean we can’t have a full and happy life together.”
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