Ten Years Later Page 4
For Amy, the quickest and most effective way to help people is to get to the heart of the matter. She feels like she’s earned the right to be frank.
“I ask them, ‘Why are you fat?’ I use the F-word all the time, because I’ve been there. Until you acknowledge why you are overweight, and why you use food as an addiction, and why you use food to cope, you will never, ever, ever be cured,” she says, “and I tell people that. ‘Why are you at three hundred pounds? What’s going on in your life?’ It’s abuse, it’s a bad marriage, it’s a bad job, it’s bad kids—there’s a thousand and one reasons why people are three, four, five hundred pounds. It’s not because they want to be fat and gluttonous, it’s because there’s something super, super messed up in their lives that is causing them to use food as a coping mechanism, just like a crackhead, or a drug addict, or an alcoholic would.”
There is a sense of relief for Amy in knowing that there was a reason for the brutal challenges she faced in her life. From her own darkness, she can now shed light on a solution for someone else.
“I can’t tell you how many people I’ve had say to me, ‘I need you to save my wife’s life.’ Or there’s a mom standing there with her four-hundred-pound son and she says, ‘I need you to save my son’s life.’ That’s a lot to ask of somebody. I’m not God, but those opportunities have been presented to me every day for the last two-plus years, and I view every one of those opportunities as a gift, because that’s why I’m here. I can’t promise you that I’m going to save your life, but I can give you every tool that I’ve ever had to try to help you,” she says, “and that is what I’ll be doing until the day I die.”
Amy wants to spread her message of getting healthy both on the inside and out. She’s clearly worked hard, and painstakingly, for overall strength in her own life. She wants others to see in her journey the power inherent in taking that first step toward change.
“I think I finally found my purpose. My purpose is to be a motivational speaker and a life coach. And my life is fucked up,” she says with a laugh, “but I think I’ve been through enough to be able to understand people’s fucked-up lives. To be able to motivate and inspire people. I had to go through all of that in order to be able to do what I do. People can think, She went through all of that? Then I know that I can do it. I would go through it all over again if that meant that I could save a person’s life from domestic violence or obesity. I am now supposed to coach and counsel and mentor people to finally live the life that they’re supposed to.”
The relief Amy feels about finding her purpose in life resonates in these words from Mark Twain. I came across them after I met Amy. They made me think of her.
“The two most important days in your life are the day you are born, and the day you find out why.”
Amy Barnes was born on November 10, 1973. It took her years of beatings, losing her children, and 490 pounds to find out why.
LINDSAY BECK
So many of us know people who’ve battled a medical crisis, or we ourselves have endured one. When WebMD ran its magazine’s annual “Health Heroes” section in 2006, a small blurb about a young woman named Lindsay Beck packed a big wow factor. Lindsay had accomplished so much. Never did we think we’d find someone who, at age thirty-five, already had a fascinating ten-years-later tale to share. But Lindsay does. And oddly enough, her story has an intimate connection with an NBC colleague whom I know and love.
When you meet Lindsay Beck for the first time, you feel like you’ve met her before. She’s got that kind of face. An effortless white smile, fresh skin, a chestnut ponytail, and blue-green eyes that make you close yours. Hmm. Did I buy peaches from her at the farmers’ market? Was she in that Ivory soap commercial? Lindsay is a thirty-five-year-old who looks twentysomething, burdened by nothing. Well, ha. What a joke. If the inside of Lindsay’s body could read that description, it would laugh. It would throw back its formerly ravaged, toxic head and snicker at the words. A C-shaped scar on Lindsay’s neck is the trapdoor to her medical past. When you lift it, you see two rival stories: a double helix of dark and light.
The San Francisco Bay suburbs where Lindsay grew up are now some of the most expensive zip codes in the country. But back in 1976, when she was born, the dot-coms and their megamillions were nonexistent. Merrilee and Michael Nohr, Lindsay’s parents, fell in love in high school, got married, and soon realized they were not meant to be together. They divorced when Lindsay was four and her brother was just one. Her mother soon became involved with the father of Lindsay’s best friend from preschool. The dream that little girls have of becoming sisters with their closest friend came true. Her new stepdad, Bob, also had a second daughter, so a blended family of six was formed. Lindsay describes her childhood as “vanilla.”
“Not in a bad way,” she explains. “It was safe, full of sports, school, family, and a sense of community.”
The divorce did create some challenges every other weekend. That’s when Lindsay and her brother would stay with their father, who had not yet embarked on his two future marriages.
“My mom would say, ‘Here’s the toothbrushes, here’s the clothes, you’re in charge,’ ” recalls Lindsay. “But my dad was a bachelor, so I can remember calling my mom and saying, ‘Dad has no food; we’re eating ice. But don’t worry, I’m making sure everything’s okay.’ ”
The bulk of Lindsay’s family life was consistent and loving, filled with swim meets, soccer games, and trips to the beach. Her mom and dad did not go to college, but Bob did. He felt strongly that Lindsay should, too. When it was time to choose a school, Bob guided Lindsay away from the California university where her high school friends and boyfriend were headed, and toward the University of Colorado in Boulder.
“Bob sat me down and said, ‘The choice is yours, but this is a mistake you’ll regret the rest of your life. At Boulder, they have study-abroad programs, you’ll meet all new people, and the opportunities there are enormous. If you follow your friends, where is that going to get you?’ ”
Lindsay listened and Bob was right. Her roommates were from Minnesota, Mississippi, Louisiana, and Ohio, and as Lindsay puts it, “that began to break the vanilla.” In May 1998, she graduated from the University of Colorado in Boulder with a major in international affairs and a minor in economics. Lindsay knew she was built for a leadership role in business; she began looking for a job that would prepare her for it. Companies that would put her through business school were at the top of her list. She chose the well-established Otis Elevator Company, founded in 1853.
“I was embarrassed to even say I worked at Otis,” she says, smiling, “but I picked the job because they were recruiting really hard for young people as a dinosaur company with a lot of older people working there, and they paid so well, and they would send me away for training for three months and pay for business school. It was all about young professional development.”
A month out of college, the twenty-one-year-old landed happily on the bottom step of the corporate escalator, selling for Otis in San Francisco. Lindsay was excited about the job and enjoyed the months of training. She lived with friends and was preparing for a marathon in the spring. But a marathon of another sort was about to begin.
A few weeks before Lindsay was scheduled to run the Big Sur marathon near Carmel, she felt a persistent irritation on the inside of her mouth, on the right side. She was mildly bothered by it but thought it would go away.
“I get cold sores on my lips, and so I thought it must just be some sort of canker sore near my back molar,” she describes, “and when I spoke it was rubbing against my back molar, so it was annoying.”
Lindsay made an appointment to see her primary care doctor, who looked at the inside of her mouth and told her it didn’t look like anything troublesome. She advised her to see an ear, nose, and throat specialist if it didn’t go away. A week later, the stubborn canker sore remained. Lindsay set up an appointment with an ENT, Dr. Daniel Hartman at the California Pacific Medical Center in San Francis
co. He examined Lindsay, tweezed a sample from her mouth, and told her he would run a few tests. When he offered to give her medicine for the irritation, she declined, not wanting any meds in her body for the marathon. She was running the race on Sunday.
“He said, ‘Okay, we’ll run a few tests and we’ll touch base on Monday.’ ”
Monday morning, Lindsay took a call at work from the doctor’s office.
“The assistant called me and said, ‘Hey, when you come to your appointment today, bring someone with you.’ ” Lindsay laughs. “Which is really a bad sign. But I’m twenty-two. I don’t know this! And I said, ‘Oh, why? Are you going to be giving me medication so I can’t drive?’ And she just said, ‘No, no. We just thought you might not want to come alone.’ ” She laughs again. “I’m not going to call my mom—it’s a canker sore!”
Lindsay showed up at the office alone.
“The doctor said, ‘The test is positive.’ And I went, ‘Awesome!’ ” She chuckles at her naïveté. “And then he said, ‘No, not awesome. You tested positive for squamous-cell carcinoma.’ And I still didn’t understand. I said, ‘Okay, what do we do?’ and he said, ‘It’s, um, cancer.’ ”
She was in shock. Dr. Hartman asked Lindsay if he could invite his partner, Dr. Nancy Snyderman, to join them. Confused and seated in a large, specialized chair—much like the one you sit in for an eye exam—Lindsay watched Nancy roll up to her on a stool.
“I remember her saying, ‘It’s okay. This is a kick in the pants. We’ll get you through it, not a big deal. I’m here for you.’ ” Lindsay shrugs her shoulders. “She said it was going to be okay, so I believed her.”
But Nancy knew it was not okay; the pairing of tongue cancer and a very young patient was sinister.
“It’s very rare,” Nancy explains, “and unfortunately it makes the prognosis really awful. I knew the odds, and the odds were against her.”
The typical profile of a tongue cancer patient is an older man who’s smoked and drunk for most of his life. Lindsay had no significant family history of cancer and was a healthy twenty-two-year-old. Nancy told Lindsay she’d just treated another young adult for tongue cancer. She was an attorney who did not want to lose the ability to speak, one of the risks of surgery for tongue cancer.
“She said, ‘I’ve done this radical new approach. This is what we did. You don’t have to worry. You’re going to start radiation right away. We’ll get the tumor, but you don’t have to worry about any of this.’ And I said to her ‘Okay.’ She was so confident and had a plan. Just what I needed.”
Nancy had taken an approach that aligned perfectly with Lindsay’s analytical, action-oriented mind.
Nancy sent Lindsay from the big chair to radiation to determine whether she was a candidate for the radical new approach she described. The staff told Lindsay that the person she brought with her to the appointment could come along.
Lindsay remembers, with a laugh, “I said, ‘I didn’t bring anyone for the canker sore.’ ”
Before she went to the radiation consultation, a stunned Lindsay dialed her mom.
“I called my mom at least nine times. Cell phones were kind of new then; she wasn’t hip to the new technology. No answer. So I went through the entire radiation appointment alone,” she says. “Someone else came in and said they needed to take a picture for my file. I’d been crying, I was so tense, and they said, ‘Cheese.’ It was the worst. I didn’t remember a thing anyone there was saying to me.”
After the appointment, she finally reached her mom.
“She answers and launches into, ‘I’m at the Gap and can you believe I have been trying things on forever,’ and on and on,” Lindsay says, “ ‘and I can’t find my size . . . and oh, are you crying?’ I said, ‘Uh, I have cancer.’ ” She laughs. “At that point I was so annoyed that I really just said it like that.”
She hung up with her stunned mother and called her dad.
“I hadn’t spoken to him in a month,” she says. “He didn’t even know I had a canker sore, let alone cancer. He said, ‘Excuse me? Who is this and what are you talking about?!’ ”
Lindsay left the doctor’s office and entered Bizarro World. When she got home, Bob and her mom told her to get back in the car and drive the hour to their house. They did not want her to be alone in the city in her apartment.
“I remember driving home mad,” she describes. “You know, music loud, angry. I remember walking into the house and seeing my mom and Bob and being like, ‘Hi.’ It felt so weird. I felt like, I saw you yesterday at the marathon and we were celebrating my healthiest, happiest accomplishment, and then today everything’s different, but I look the same, I feel the same. But somehow everything had changed. We all sat there wondering, What do we do now?”
Drowning in the unknown, Lindsay knew an action plan would serve as her life preserver. She booked her MRI, checked into her Otis health benefits, and heeded a warning from Nancy: stay off the Internet.
“She said, ‘Every test that’s ever been done on this cancer is on eighty-year-old men who have smoked their whole lives. There is no study on a twenty-two-year-old girl who ran a marathon yesterday. So do not do it. You’re going to look and it’s going to scare you, and it doesn’t apply to you.’ ”
Nancy felt protective of Lindsay, a very young, very sick girl who was now her patient.
“Adorable, charming, scared to death. She was like a doe caught in the headlights—not even a deer. She was petrified to the point that even at the very beginning, I said to her mom, ‘I want you to bring in a tape recorder or a pen and paper and write things down because Lindsay isn’t gonna be able to hear anything.’ When you’re shocked with a cancer diagnosis, you think you hear and that you’re listening, but the reality is, you can’t absorb it.”
Nancy offered Lindsay her cell phone number and told her to call her every night and ask her anything.
“I knew that the questions with her would come incrementally,” says Nancy, “and I wouldn’t be able to give her everything in one session, and I wanted her to have access to me at any time.”
Lindsay rarely talks about Nancy without a smile on her face. She loves and admires her doctor, who is now a dear friend. (Nancy also serves as NBC’s chief medical editor.) Lindsay shared with me several of what she calls “Nancy-isms” throughout our conversations, and they are personal approaches and philosophies she holds dear. (I’ll share them with you, too, in a while.) From a doctor-patient standpoint, the pair worked well together from the start.
“If you ask her now,” says Lindsay, “she’ll say, ‘I don’t know where Lindsay got all the hope. Her diagnosis was so aggressive.’ But she, for me, played such a maternal role and gave me action steps, which of course I like. I just listened and did them. That made sense to me.”
Lindsay says the days after the diagnosis are a blur. She told her roommates, who helped execute a phone tree to share the news with friends. Interestingly, the placement of Lindsay’s cancer was not just horrifying, it made her feel vulnerable.
“I asked Nancy, ‘Will I be able to kiss?’ I was embarrassed, because I was afraid that if I was thinking about intimate things, people who heard I had tongue cancer would be thinking the same thing.”
Traditional treatment for tongue cancer called for surgery first, then follow-up radiation and chemotherapy if needed. But Nancy’s approach was to tackle it in reverse: shrink the tumor with radiation first so the need to surgically remove a large piece of the patient’s tongue would be lessened. This struck a chord with Lindsay, because in all her other doctor interviews, the focus was solely on curing her, with no future vision about the quality of her life if she did survive. She wasn’t an eighty-year-old man who might be willing to live with losing his ability to speak and writing on a dry-erase board for the remainder of his life. Nancy honored who Lindsay was. Their plan was to not only keep her alive, but to make sure she could talk and eat and kiss.
“She was an extraordinary partner from the very begin
ning,” Nancy says. “It was Lindsay and me in partnership, and it made my job easier and harder.”
Following an MRI, Lindsay was to immediately start eight weeks of radiation on the right side of her tongue. She describes the daily treatments as a nightmare.
“Every day I got locked to the table by my head,” she says, clutching her head. “You get this crazy mask and it locks you in so you can’t move.”
I hear my first story of one of her “Lindsay Moments,” as she refers to them. She will be the first to tell you, she is not someone who likes to be told no.
“Imagine this,” she says. “They fitted my mask and they’re testing it, so I’m locked to the table. It’s very Silence of the Lambs, and I have one little straw to breathe out of. They say, ‘The tattoo people are coming in now and they’re going to tattoo you with the lasers on you so they get you all lined up.’ ”
Standard procedure is to permanently mark patients so that each time they come in, the radiation therapist can quickly and precisely pinpoint the area that needs treatment.
Laughing, she says, “I begin flailing!” She swings both arms in the air back and forth. “ ‘Noooo! You’re not!’ One, I’m afraid of needles, and two, I’ve always said I’ll never get a tattoo. It’s just not my thing. I am flipping out and hell-bent on stopping this.”
The therapists told Lindsay this was what was done; there were no options. (There’s that word.)
“So I say, ‘Can you use permanent markers?’ They come back with, ‘You’d have to touch it up every day and it has to be very accurate.’ I tell them I’ll touch it up. I’m thinking, I am getting married one day. I am going to wear a wedding dress and I’m not having tattoos right here.” She runs her hand across her upper chest area. “No way.”
They say they have to call Nancy.
“So, guess what? Permanent markers.”
And so began the alliance between Lindsay and Nancy, both dead set on life and quality of life.