One in eight American women will be diagnosed with breast cancer in her lifetime. About 200,000 are diagnosed in the U.S. each year; 40,000 of them will not survive. As Oratz points out, it's a diagnosis that's complicated by dozens of factors. Yet for all our awareness of pink ribbons and charity walks, until breast cancer is experienced firsthand, the particulars of its progress and the intricacies of its grueling treatment remain largely unknown. Which is why O asked three of Oratz's patients to share their stories: in the hope of demystifying a disease that's as familiar as our own bodies and as mysterious as the reasons they sometimes betray us.
Diagnosis: June 2007
She needed things to be in their place. She needed symmetry, exactitude, order. But as she waited in the radiologist's office for the bad news he'd prepared her for—"I don't really have any doubt," he'd said a few moments earlier—nothing was as it should be, or as it seemed.
She'd thought the faint pain in her shoulder was a pulled muscle; it wasn't. She'd thought she and her husband, Ken, would have a relaxing weekend at their New Jersey beach house, but they didn't—not once she stepped from the shower on Saturday afternoon and saw the pitting on her right breast, the two-inch circle of skin that was dimpled like an orange rind. She'd thought the pitting would go away on its own, like a head cold or indigestion. It hadn't. Her breast had grown swollen in the days after she and Ken returned home to New York. Her nipple had begun to retract as if something were behind it, pulling a string. And so here she was.
The doctor returned, confirmed the diagnosis, and made her a cup of tea.
The tumor extended outward from Valerie's breast, into her armpit and upper back. "It wasn't round, the way you picture a tumor—it was like this," she says, splaying her fingers like tentacles. The radiologist recommended the "brilliant oncologist" whose office was nearby. A week later, Valerie shook Oratz's hand. She learned that the dimpling and pitting was called peau d'orange, "skin of an orange," and that it occurred when lymphatic fluid couldn't drain because it was blocked by a tumor—which, in her case, was also tugging at the ducts behind her areola, drawing her nipple inward. She learned that there were four stages of breast cancer, and that hers—which was large, caught late, and growing fast—was stage IIIC, a hair's breadth from the worst-case scenario.
She had always been vigilant about annual mammograms, but had delayed her scheduled appointment upon taking a new job—she had just become the CEO of an international furniture design company, a position that required frequent travel. She had an enviable life: lunch with friends, rooftop parties in Manhattan, weekends with her extended family at the house down the shore—a house so beautifully appointed, it had been featured in a design magazine. A minister's daughter and a devout Christian, she'd been married to Ken, a vice president at an engineering corporation, for 11 years; they collected antique ice cream scoops, invited their niece and nephews to stay with them in the city, and, with their light hair and wide smiles, looked a little bit alike.
"I don't dwell on things," Valerie says. "I'm not a dweller." And in fact, she remained even-keeled as Oratz explained that because the tumor was too big to excise, she was prescribing 22 weeks of chemotherapy to shrink it to operable size. The chemo drugs were so toxic they would have singed and collapsed the veins in Valerie's arm, so getting them into her bloodstream required a port—a small plastic disk inserted just beneath the skin of her chest and connected to one of the body's largest veins, the superior vena cava, via catheter. After her port was implanted, she was taken directly to the chemo chair—because by then, she says Oratz told her, "a week could make a difference."
Over the first 12 weeks of treatment, the tumor shrank significantly. The chemo cost Valerie her hair, her fingernails—many of which cracked, flaked, and finally fell off—her appetite, her concentration, and her period. She had piercing, days-long headaches, and felt a dull, humming throb in every bone. Even her teeth hurt. Her mouth dried out, its delicate tissues erupting in sores. "I'd wake up feeling like I had a mouthful of ashes," she says.
Outgoing as ever, she made a friend in the chemo room—a fellow breast cancer patient named Sheila, who was athletic and dynamic and loaded with personality, and who happened to be reading the same mystery novel as Valerie. As the women chatted they realized they were about the same age, both from New York, each with a husband named Ken. They exchanged e-mails and looked forward to seeing each other every week. The Kens became friends, too.
Valerie conducted business meetings in the chemo room (which she reorganized, arranging its DVDs and bemoaning its window treatments to anyone who'd listen). She mustered the strength to keep traveling for work, speaking to conference attendees about furniture design. ("Fly business class and don't use public transportation," Oratz warned: Body aches and a chemo-compromised immune system demanded more legroom and fewer germs.)
As Valerie approached her final dose of chemo, she and Oratz shifted their focus to the surgical phase of her treatment. Aware of the increased likelihood that she would develop a new cancer in her healthy left breast, and determined to be rid of the remaining marble-sized mass in her right, Valerie opted for a double mastectomy. Oratz supported this decision. As she met with surgeons and braced for the loss of her breasts, Valerie remained stubbornly upbeat. Her family organized a massive conference call, and through the receiver she listened to a lively chorus of relatives pray and joke and tell stories to make her laugh. "Maybe staying positive doesn't help," she told a friend. "But even if it didn't, would you want to die miserable?"
And then, as she was preparing for the surgery, Valerie returned to the radiologist who, six months earlier, had told her he was certain she had cancer. She watched him puzzle over her X-rays, all squints and frowns. He stood, pacing the room before rechecking the scans. "I can't find it," he finally announced. Because it wasn't there to be found. In the weeks since her final dose of chemo, Valerie's once enormous, aggressive tumor—so grave that even a week's wait might have affected her chances of survival—had vanished.
Even when cancer was over, it wasn't over. After the mastectomy was called off, there were still six weeks of radiation treatments to undergo to help prevent the cancer's return. There was a course of tamoxifen, an oral medication that could reduce recurrence by up to 50 percent, but that came with its own set of side effects. It gave Valerie insomnia and hot flashes, and left her unable to walk two blocks without resting.
Two years after she noticed the peau d'orange, 19 months after the cancer vanished, she was still visiting the radiologist's office every three months. The doctor would do a sonogram and mammogram and zero in on a few tiny areas that concerned him, pressing the biopsy needle into her breast to remove this or that bit of tissue for testing. But the tests always came back negative. Eventually, Valerie didn't bother to worry.
Just after the 4th of July weekend, she came in for her scheduled scans. This time there were five troubling areas, the fifth of which was deep inside her breast. Last one, last one, last one, Valerie thought. The needle hurt terribly.
The fifth area turned out to be a four-millimeter tumor. Valerie called Oratz. She let herself be indignant: Hadn't she taken a course of preventive drugs, been injected with gallons of toxic chemicals and zapped with hours of gamma rays? Hadn't she been that one-in-a-million case—managing to have nearly every side effect of every treatment she'd undergone, but also managing to disappear a cancer so prolific it might have killed her? She needed order. She needed things to make sense. She was lucky? She was unlucky? She was neither. It wasn't that simple. It was a story still unfolding—there was no way to know the end yet. And it was a story that was only hers. She remembers Oratz telling her, "Don't project anything you've heard about anyone else onto yourself. Your situation is different. Your story will be unique."
A double mastectomy was scheduled again. This time there would be no last-minute reprieve. At least, Valerie told herself, the surgery would negate the need for more chemo. She contacted a surgeon who said he would be able to spare her nipples, making reconstruction less complicated. Insurance wouldn't fully cover the surgery. She thought about what else she could do with the money she'd have to pay out of pocket—buy a car, perhaps—and then decided to move forward. "I was terrified of being disfigured," she says. In post-op, she woke in the midst of a violent reaction to her anesthesia. "A nurse was holding my chest as I retched so I wouldn't rip out my stitches."
Once she recovered, Ken came in to see her. He said, "You look so beautiful." She knew she looked terrible. She thought, What, did he read a book that says you're supposed to say that? She didn't understand that he was just so happy to see her, so happy she was alive, until he told her they hadn't been able to save her right nipple after all because the surgeon had found a tumor just beneath the areola and another elsewhere in the breast. All those tests, all those hollow, prodding needles, and still—still—there was no way to be sure they'd found it all.
"We'll do another round of chemo," Oratz said.
"What are the other options?" Ken asked.
"There aren't any," Oratz said. "This is what we're going to do."
"What if Valerie decides not to?"
Oratz looked at Valerie. "She won't."
Valerie scheduled another port implantation and, for weeks after the mastectomy, carried around the grenade-shaped drains that attached to the tubes protruding from her dual incisions, which Ken emptied into the toilet as the sacs filled with lymphatic fluid. When the bandages came off, the nipple that remained was lower than before, and pale from reduced blood flow. The scars on her chest and armpit were thick, ropey knots, puckering her skin. She barely recognized her body.
She needed symmetry. She needed things to be as they should. She needed, after two years of surrendering to the opinions of doctors and the input of the cancer Web sites Ken pored over after every appointment, to have an ounce of control over her body. She saw a plastic surgeon, who implanted tissue expanders beneath her pectoralis major, the fan-shaped muscle connected to the breastbone. The tissue expander attached to a port beneath the skin, into which saline solution was injected every few weeks. Once the fluid-filled expanders had adequately stretched the skin, they would be swapped out for breast implants. No one—not even Ken—was allowed in the room when the doctor produced the syringe of saline. Its three-inch needle was notorious for making people faint.
The expanders made Valerie feel like there was a cinder block on her chest. The chemo made it impossible to think or stay awake. "I would sleep all day," she says. "I'd pick up a Q-tip and stare at it like, What do I do with this?" One day, with 40 minutes to fill before a lunch date, she sat down with a cup of tea. "The next thing I knew, it was 3 o'clock and the tea was ice cold." She'd passed out at her kitchen table. Another day, as she and Ken returned to their apartment after running errands, she saw an e-mail on her phone. It was from the other Ken. Sheila had died.
In April 2010, when Valerie had her final dose of chemo, Oratz's team threw handfuls of confetti in the air, but she couldn't bring herself to celebrate.
In May the tissue expanders were replaced with implants, which made her chest feel perpetually constricted; at night, she'd wake up thinking, I have to take this bra off. She wasn't wearing one—it was just her chest muscle pressing against her implants. There was no end to the discomfort, the inconvenience, the adjustments being made to the body she'd been left with.
Except, one day, there was. Gardening on a Saturday in June 2010, Valerie realized she'd been working for hours. She wasn't fatigued. She could focus. "I just felt like, I'm back!" she says. She started riding her bike. She lost 22 pounds in nine weeks. She slept. Ken wanted to buy her a piece of jewelry to commemorate her remission, but she chose to design her own—a gold ring with a constellation of stones, one of them bright pink. Sometimes she thought about Sheila. When she felt the too-tight-bra feeling, she told herself, You feel this because you're alive.
Diagnosis: February 2010
You Don't have cancer! You have really bad jet lag. No—you're pregnant! That's why you feel so nauseous and worn out. It's not the chemo, it's pregnancy. You should quit smoking. You can't smoke when you're pregnant.
The bus is so crowded today. Oh my God, lady, get off my toe. You're on my toe! Don't get mad, Renee. Don't be wrathful. You can't say, "We are all children of God" and then call someone a bitch. You don't know what she's going through. Maybe she just got a diagnosis.
When you got yours, you thought, This has to be a mistake. I'm so prayerful. I'm more prayerful than everyone. You talk to God all the time. Dear God, I promise if you spare me, I'll do anything. You shouldn't promise that. What if he told you to go to India, or stand out on 43rd Street in a loincloth, converting people? If he took you up on all the offers you've made, you'd be a nun. You went to Massachusetts, to the National Shrine of the Divine Mercy, and the grotto there was almost as beautiful as the pictures of the original in France. Dear Mother Mary, I promise if you cure me, I will go to the real grotto in Lourdes.
Because you will be cured. You have to be. God doesn't put you through more than you can bear. In the past six months, he's taken Dad, Victor's job, your health. God, I feel like Job. You've put me through so much. He must know you can handle it. People tell you there's a reason. "Everything happens for a reason," they keep saying. You don't get cancer for the heck of it. It took you and Victor so long to have children, but God gave you Alexa and Jade, didn't he? You prayed for a good oncologist, and Dr. Oratz is fantastic. The clinic is so pretty. You can order in lunch from the restaurants nearby. It's close to the office, just six blocks from the Ford Foundation's building. None of the patients even talk about cancer. They talk about which beach they're going to this summer.
Not that you have cancer. You don't! When you first sat down in the big beige recliner and they tried to tell you how the treatment could cause dizziness, diarrhea, constipation, an allergic reaction, a trip to the ER—you cut them off and told them, "That's not going to happen." And you were right. Your hair may be gone—the hair on the back of your hands fell into the sink as you washed them, and you woke up one morning without eyebrows—and your fingernails are cracked from bed to tip and are held together with nail polish, and you can barely keep a thought in your head, but none of the other stuff they warned you about happened. So you were right.
And would a cancer patient eat like this? Mom has been so good, making all the Filipino food you love when you come home at night. Everything fatty and oily and fried. Maybe she'll make dinner tonight. Would a cancer patient eat tubs of drugstore beef jerky and bags of pork rinds on the bus? Would a cancer patient ride the bus all the way home to Queens? The lady on your toe is staring at the beef jerky. The smell is filling up the bus. The bus driver says there's no eating allowed. Just pretend not to understand English. He'll give up. Dr. Oratz pulled you aside at the clinic when you ordered in a cheeseburger: "Think of the other patients," she said. "Not everyone can eat that." Some of the others were so nauseous they could barely eat at all. But not you. You're not a cancer patient. You're just you, with less hair. You're just you, with a free Brazilian.
You even go to parties. You had the lumpectomy on a Friday and went to a birthday party on Saturday. Sure, you paid for it—your drains filled up with blood, you were exhausted—but you went to that party. You didn't even look at the incisions. You barely noticed them. When you had your sutures taken out, you asked the surgeon to remove the Sharpie mark she'd made—the black line that went across your ribs like a big smile—and she asked what line you meant and you pointed. Her eyes got big and she said, "That's your incision, Renee. We opened up your body. We removed a lot of tissue." You'd been putting bandages on your little drainage hole, thinking that was where she'd cut. It was only surgery. You're strong. You're not afraid. There's nothing to be afraid of.
So stop being afraid.
You were right not to tell everyone. People say crazy things. "Oh, I heard you have breast cancer. My mother had breast cancer, and she died." Great, thanks for telling me. And your friend who said you were in denial because you don't constantly check WebMD or try to tell your doctor how to treat you. You told her, "If I were in denial, would I be at the doctor's office all the time?" Knowing your tumor's size in centimeters—how does that help? Let other people make graphs and tables and follow every detail if they want to. People should do what works for them.
And this is working! This is doable. This is nothing. Victor doesn't want to talk about it. He drops you off at chemo—he doesn't stay—and you ask him how he is and he says, "I'm okay." He says that a lot. He says it every time you ask: "I'm okay. I'm okay." At first he didn't touch you. The nurses at the clinic said, "You need to do normal things. Have sex!" You told Victor that. You said he had to talk to you or you'd drag him to the marriage counselor. "Okay, okay," he said.
The kids are okay, too. They're completely, totally okay. They pray for you. They go to Coney Island on the weekends; they do their schoolwork. You told them you were sick, that you had to have treatment for a disease. You did not say cancer, and still, they asked if you were going to die.
This is your stop, your street, your house.
Why is the sink full of dishes?
Why is there a sink full of dishes for you to do when you're reading grant proposals at the Ford Foundation and making copies and sending e-mails at the office and going to the doctor all the time and feeling about as bad as you've ever felt in your life?
And just like that, something inside you comes undone. It is not your job to do everything—especially not now.
"I have cancer!" you shout at your family. "I can't do the dishes!"
They stare at you like you've lost your mind.
"I need someone to rub my feet!" you tell them. "I have cancer!"
"Okay, okay," they say.
You tell them you want to curse, and you do. "Fuck! Fuck! Fuck!"
The kids start crossing themselves. Mom calls the priest, who comes right away. "Why are you here?" you snap, and when he asks if you're all right, you tell him what you must have been wanting to tell everyone all along: You're tired, and you're afraid, and this isn't fair. You let yourself question God's infinite plan. You let yourself say, "I don't want this."
The relief is heavenly.
You start letting people know. When you're in the big beige recliner, you get text after text—from people in New York, the Philippines, everywhere. When you head to the office after the final dose of chemo, you find a bouquet of flowers on your desk from the one who said you were in denial. She becomes your friend again. Your hair begins to come back. You keep wearing the wig to work, not sure when you should stop, and one day you leave it on the bus and that takes care of that. Your hair is short, not much longer than a buzz cut, but you don't mind people seeing it. You hear that a colleague's husband has cancer, and you tell the woman, "I had cancer, too." Radiation turns your collarbone gray-black, and during the last session the laser breaks your skin open, and you think, Thank you, because what if it had broken before that and you had to keep going? You take Alexa and Jade to the lake to teach them how to fish, and to the amusement park where they ride a rickety old wooden roller coaster. When the ride starts, you get nervous and take out your rosary, and the guy who flips the switch says, "Lady, you're praying too loud, it's bad for business."
The week his unemployment runs out, Victor gets a job. You feel less like Job. When you see Dr. Oratz for a checkup, you tell her, "I know you're not supposed to talk about religion with your patients. But tell them to pray. Even if they're atheists—they can pray to a plant, to whatever god they want. But tell them to pray."
In the last week of March 2011, you get on a plane with your family. When you land, you can't stop grinning. And when you arrive at the grotto in Lourdes, all you can do is stand there and cry.
Diagnosis: September 1997
People think if you're a physician, you take news like this better. I didn't. I was a hot steaming mess. It didn't matter that my mother had lived through breast cancer—when I got my diagnosis, my first thought was that I was going to die.
In 1997 things were different. The survival rates were lower. The treatment was less precise. And if you were an African-American woman under 40, as I was, everything you read told you your breast cancer diagnosis was a death sentence. I was hearing I wouldn't live past five years—after being married only a month.
I had met Earl when I was the executive medical director at a large company in New York—a colleague told me, "I have someone you must meet," and she gave him my number. He likes to tell people my secretary screened his call. She probably did. I was 32, I'd done my share of dating, and I could tell from a five-minute conversation if I wanted to even go to dinner. When I spoke to Earl, he was very charming. He was respectful. Exceptional manners. We had dinner at a steak house in Chelsea, and I knew that night it could become something serious. We dated for two years, even though his company moved him to Florida, then Virginia—he was an engineer working with General Motors on the first consumer electric car, and he had to go where the project went. I stayed in New York, but the distance didn't matter. Earl was what my father would call a man of character. My dad taught my sisters and me what to look for in a man: devotion, kindness, honor. Earl had all of that. Plus, he's a huge guy, like 64, and he referred to his mom as "Mommy." I always found that endearing.
We were married in August 1997, in my hometown of Oklahoma City. I found the lump in my left breast three weeks after our honeymoon in Saint Martin. It was hard, distinct, and there was a dimple in my breast; those were signs I'd told my own patients to watch for. I went to the doctor and he did his exam and said, "I don't think it's cancer. You're too young." Oh, I was so glad to hear that. I wanted to just wish it away. But I had the sense to ask for a mammogram, and when they did the test later that day, I knew as soon as I saw the scan.
I left the mammography facility sobbing, walking down the street holding my X-rays, not knowing where I was going. I ended up at the office—I don't even remember how I got there, or how I knew to find it—of one of my med school professors from NYU. She'd been one of my toughest professors, very intelligent but very stern. You didn't get on her bad side. You did what she said. I knew if she were my oncologist, she would take charge of my care. So that day, I came in off the street crying, went to the front desk, and asked the receptionist if Dr. Oratz was available.
As a doctor, I'd seen women who died either of the cancer or the treatment. I knew what could happen. So I told Dr. Oratz, "I want the most aggressive treatment possible." I suggested we use a chemo drug less likely to cause hair loss—I remember being so upset that I would lose my hair, that I was going to be a new bride with no hair. I told her, "I've made up my mind. I want this medication." Well. She told me in no uncertain terms that she was in charge, not me.
After I called my parents, they were on a plane from Oklahoma City within 24 hours. Earl arrived from Virginia that night. I don't know what he told his bosses. I just know he was there. When my parents showed up, he made it clear that while I was their daughter, I was his wife, and he wasn't going to pull back and let them handle my care. For him to step in like that—it was like, I'm here, I can handle this. He was masterful at making sure I didn't have to worry about him.
I was supposed to have a lumpectomy, chemo, and radiation. But after my lumpectomy, the margins weren't clear—there were cancer cells in the surrounding tissues. Dr. Oratz recommended a mastectomy, and I was devastated, but I agreed to go forward. On the day of the operation, I was at NYU's hospital, and I remember thinking, I'm a new bride, losing my breasts. It was a moment of terror, and I worked myself into a panic. I called Dr. Oratz and said, "I can't do this." She came immediately to the hospital. And in the same way that she had told me no to that chemo drug, she told me no to this. She was kind and professional, but clear. She told me the best option, and the only option, was a mastectomy.
My parents stayed to see me through the surgery, and Earl stayed through treatment. My husband showed me his unconditional love. Few people see what their spouse is made of up front, but I saw my husband's strength right away. We learned that it might not be possible for me to conceive a child; even if I could, at that time doctors thought it might cause a recurrence. It was a decision we would have wanted to make on our own, obviously, but Earl took it in stride. He told me, "I just want to do whatever it takes to get you back." As unpleasant things happened to my body—I lost my eyelashes, I was nauseous—he never seemed fazed.
I spent entire days just lying in bed, crying. My aunt would come and cook dinner for everyone while they were staying at my place, and I was too withdrawn and sad to participate. I'd been feeling like everything in my life was going so well. I was happy at my job, I had a wonderful new husband, I was finally making a dime. And then suddenly I was writing my wedding thank-you notes as my hair fell out. But Earl showed me that he took his vow seriously—for better or worse—and that made me realize there was someone who needed me. That's what got me through.
I told almost no one outside my family that I was sick, but with breast cancer I couldn't hide. Even if I could cover any body disfigurement I had, I couldn't cover up the fact that I'd lost my hair. Chemotherapy makes what could be a private condition into a public one. You might as well walk around wearing a sign. I bought a wig—I called it the million-dollar wig, it was so expensive. I was willing to pay anything to approximate my normal appearance. I didn't want to be viewed as sick.
Which is funny, since now a big part of my job is to tell people about my breast cancer. I'm the CEO of the greater New York City affiliate of Susan G. Komen for the Cure, an organization that raises money for groups that provide support to breast cancer patients in and around the city and for breast cancer research. I have a whole team of doctors and researchers, my medical advisory committee, who offer input and guidance on medical issues. I feel like this job was created just for me. I've experienced breast cancer as a daughter, a physician, and a patient, and all of that experience, everything I've been through, has led me to exactly this position. I've talked about my breast cancer on television, in countless public speeches, and one-on-one with other patients and survivors. At first it was hard to go from never talking about it to sharing my story with the world. But I remember thinking, You gotta be ready to come out with it. I had a choice: I could be selfish, or I could share my experience to, hopefully, benefit others.
Breast cancer created a sense of urgency for me. Tomorrow is not promised, as they say. I don't take things for granted the way I used to. I was living in this beautiful, rosy world, with a supportive family and friends and husband. I wanted to be a doctor, so I became one; I was having this great life in New York City. It's not like I was arrogant, but breast cancer gave me a dose of reality. It brought my loafers down to the ground.
Whenever I introduce Ruth, whether to friends or a colleague or up onstage during a Komen event, I always say, "This is Dr. Oratz, chair of my medical advisory committee and the physician who saved my life." Because I think of my experience as a brush with death. That's what it felt like for me. When I think of my cancer, I remember the quote, "Mountaintops inspire leaders, but valleys mature them." Cancer made me a better leader, a better friend, a better wife. I wouldn't wish it on anyone, but it made me who I am.
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