Ten Years Later (6 page)

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 Francisco. 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 beginning,” 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.

“I let her be in the driver’s seat as much as possible,” Nancy says, “because when
patients are sick, they never feel like they’re in the driver’s seat.”

The eight weeks of radiation Lindsay underwent included a two-pronged attack. It would
prove to be so draining that Lindsay had to move home so her mom could drive her to
appointments and help her recover. Every day for six weeks she was given standard
radiation. The final two weeks required a special hit that was especially horrific.

“They’d put me to sleep every day for two weeks. They’d pull my tongue out of my head,
all the way out, so it was like . . .” She grabs her tongue and yanks it out. “My
tongue was pierced with a thing on it so they could pull it out and hook it to a board,
and then they would radiate just where the tumor was.”

Lindsay worked at Otis during the first four weeks of radiation treatments, but exhaustion
and pain drove her to take partially paid medical leave. She was supposed to be having
the time of her life—starting a career, building her future—but instead, Lindsay was
battling
to survive. Looking back, she forgives herself for some of her young flights of fancy
that served as pressure valves.

“I came in one day for treatment and said, ‘I’m going to Vegas.’ ” She chuckles. “ ‘My
college friends are having a reunion. We graduated a year ago and we’re all meeting
in Vegas, and we’re staying at the Venetian for the weekend.’ ”

Another Lindsay Moment, another call to Nancy.

“She sat me down and she said, ‘No sun, no smoking, no drinking because of the pain
meds. But if you want to go, you can.’ ”

I ask Nancy why she let her go.

“She had a life to live, and I was always weighing the fact that, frankly, I knew
that what we were trying to accomplish was nearly impossible. I thought her life could
be short, and what the hell; life is full of experiences, and I knew that she would
remember that as a wonderful time, and the downside was minimal,” she explains. “I
knew that because I had earned her trust, that if I gave her ground rules, she would
honor them.”

Lindsay did go, sat in the shade, shopped, and enjoyed several spa treatments. Again,
she was grateful to Nancy for artfully managing both her disease and her personality.

“She from the start looked at me like, ‘You’re not tongue cancer, you’re Lindsay.’ ”

Even after Lindsay completed her eight weeks of radiation treatments, the side effects
stuck around. The radiation continues to damage tumor cells for several weeks following
the end of scheduled treatments. Lindsay’s neck and tongue were raw, it hurt to speak
and eat, and she slowly lost her sense of taste. There was a risk she would never
regain it. Her sour, bitter, and salty components disappeared first.

“The last to go for me was sweet,” she says. “I remember running through the house
looking for licorice and then tasting it, realizing,
I could taste it yesterday and now it’s gone
. I also remember walking into
the house and it smelling so good, but then sitting down to eat and, nothing. It was
really, really hard.”