Ten Years Later (7 page)

Four months after her radiation, still no taste. She began to adjust by “tasting”
the mouth-feel of food.

“You start to crave things by texture. I would say, ‘I really want something warm
and creamy,’ or ‘I want something crunchy.’ ”

Lindsay’s taste buds eventually responded, but not at full strength.

“Even now, when I eat blue cheese or garlic, I want more of it than most people would
prefer,” she explains, “because I don’t taste it as intensely.”

By August 1999, Lindsay had completed radiation and was ready to get back to work.
But not necessarily at Otis. As grateful as she was for the company’s solid health
care benefits and paid medical leave, Lindsay began reevaluating her career and her
life. She referred to her monthly medical checkups as mental health visits because
they provided both relief and hope. Lindsay moved out of her mom and Bob’s house and
into an apartment. She decided to sample the dynamic and hip dot-com industry.

“I started by temping because I wasn’t sure what I wanted to do,” she says, “and I
also heard that was a secret strategy to get a job at a dot-com. If they weren’t hiring
but you got in and you were good, they kept you. I also didn’t know if I could physically
work all day. Could I actually sit at a desk for forty hours?”

Lindsay temped at a dot-com company called Gazoontite that sold allergy and asthma
products online, through a catalog, and in retail stores. She was one of the early
hires at the company. Her temp job was to mail out the FedEx packages from the front
desk and to sit in on fund-raising meetings to make the company look larger. The woman
who headed up business development saw that Lindsay was bright and offered her a job
after a month. But by the next year, many of the grossly overvalued dot-coms became
known as the
dot-bombs; tech stocks crashed, the bubble burst, and the cash-poor companies, including
Gazoontite, filed for bankruptcy in the fall of 2000. In a whirlwind year, Lindsay
gained valuable business experience and a mentor in the woman who hired her.

“She was such a great, dynamic businesswoman, someone I admired and looked up to;
I learned so much from her,” she explains. “We raised a ton of money and then a year
later went bankrupt, like all the dot-coms. But, in that time, we created a medical
advisory board, we had to penetrate the allergy and asthma market, and I got introduced
to a business plan. We went to medical conferences, and I listened in on meetings
where they were trying to raise money.”

Lindsay’s world for a solid year had been work. So fast was the pace in the dot-com
industry, the office became dot-commers’ social outlet, too, as they ate, slept, and
breathed the Internet mania. When Gazoontite closed, Lindsay finally came up for air.
She quickly realized that for her, San Francisco harbored bad memories.

“Everything reminded me of being sick,” she says. “Every hospital, every street. And
more importantly, I’m now twenty-four, and I’d go out with my friends, and guess what
happens? ‘This is my friend Lindsay, the one who had cancer, remember?’ I just couldn’t
get away from it, and as a single girl in a small social group, I knew I would never
meet Prince Charming there, because everyone was scared away.”

A severance package allowed Lindsay to explore her next move. She decided to visit
friends in New York City. Instantly, she fell in love with the anonymity the Big Apple
provided: clean slate, no reminders. She said good-bye to her parents and moved to
New York in October.

“They were really shocked,” she says with a laugh. “I think my mom was solely supportive
on the Prince Charming basis. As in, ‘You’re not going to meet a boy in San Francisco.
If you’re going to fall in love, you need to get out of here.’ And that alone sold
my mom.”

In New York, Lindsay began interviewing for jobs in business development and the tech
world. She was hired in November by a company called Jupiter Research that tracked
the success and failure of dot-coms. Her new job and a mental reboot would begin in
a week. Lindsay was happy and hopeful. Until her fingertips detected trouble.

“I used to have a habit of rubbing my neck when I was nervous, like this,” she says,
using one hand to touch both sides of her neck, “and there was a lump right here that
was bothering me.”

The pea-sized lump was on the right side of her neck. Nancy referred her to a doctor
in the Bronx for a needle biopsy. Several days later, Lindsay was shopping with friends
at J.Crew in Rockefeller Center when her phone rang. The doctor asked her to come
in and talk about the results of her biopsy.

“But I said, ‘Just tell me.’ And he said, ‘I’m not telling you over the phone. Where
are you? Who are you with?’ And I was thinking,
Okay, this is bad news. I’m schooled in this now,
” she says with a smile. “So, I got the news standing right there, in November, in
front of the Christmas tree in Rockefeller Center with my friends. And then I had
to call my job and say, ‘I can’t start Monday.’ ”

I ask Lindsay what it’s like to hear that you have cancer for a second time.

“I remember that moment I felt numb. I felt like I was expected to cry or be upset,
but really I felt shock and I was mad. My anger kicked in. The second time around
in some ways is a lot harder, and in other ways a lot easier. Easier in that I felt
like,
Okay, I’ll go in tomorrow; we’ll knock out our plan
. I knew the routine and the vernacular. But it was scarier in that the stakes were
higher.” She pauses. “The survival rates aren’t as good if it comes back, and I wasn’t
convinced I’d be able to keep my tongue. I never thought I would die the first time
around, but the second time around, I wasn’t so sure. And I wasn’t so sure that if
I survived, the quality of life would be one that I wanted.”

Lindsay’s new apartment, new job, and fresh start would have to take a backseat to
surgery. She moved back in with her mom and Bob in the San Francisco Bay Area.

“This option was an incredible luxury,” Lindsay says. “I was so grateful for their
endless emotional and financial support.”

They agreed to pay several months’ rent on her New York apartment, knowing it was
a light at the end of this all-too-familiar tunnel for Lindsay.

“This is November, so I thought,
I’ll go home, have surgery, and be back after the holidays. See you after Christmas!
Everyone have a great break!
” She laughs, looking back. “That was the plan.”

The search for surgeons began. Lindsay met with Nancy, who told her how she would
approach the surgery. Her plan was to remove as little of Lindsay’s tongue as possible
depending on what she found. Nancy would then either sew Lindsay up or add a skin
graft from her buttocks to give the tongue more meat. Her mission was two-fold: remove
the cancer and preserve Lindsay’s quality of life. They scheduled a surgery date.
But, because the stakes were so high, Lindsay wanted a second opinion. Nancy not only
supported the decision, she got Lindsay an appointment at the renowned MD Anderson
Cancer Center in Texas. Lindsay and her mom flew to the appointment and entered the
big leagues of cancer.

“My mom was always by my side, especially when making tough decisions like these.
She was my pillar of strength and had to put up with a lot,” Lindsay says. “I’m a
lot to handle on a good day, let alone trying to deal with cancer. My mom was my everything.
She was my advocate, my friend, my caregiver, my chauffeur, my shoulder to cry on,
my coach, my chef, my strength.”

Nervous and scared, Lindsay says she was not prepared for the realities of the head-and-neck-cancer
ward at MD Anderson.

“I walked around the corner,” she remembers, “and saw the waiting
room and a patient walking toward me missing half his face. I screamed out loud. Sitting
in that waiting room will haunt me forever.”

Her visit with the highly respected surgeon went about as well. He told Lindsay he
would aggressively tackle the cancer by removing two thirds of her tongue. He would
then add a skin graft using part of her leg or arm. He would also incorporate veins
and muscle so she would have blood flow in what remained of her tongue. She would
need to stay at MD Anderson for weeks.

“They tell me all of this and I am beside myself. I don’t want to do it,” she says.
“I’ll never be able to speak again. I’m going to have this crazy tongue. This option
felt like Frankenstein. When I heard this new option I felt like,
What else don’t I know? What am I not asking? Should I not even consider the small
center where they didn’t even tell me about this?
So I leave and call Nancy. She’s in her car in the parking garage, and I say, ‘Why
didn’t you tell me about this?!’ I am mad, and I don’t want to do this.”

Nancy let Lindsay release all her fear and anger.

“I remember saying, ‘Lindsay, come home. I didn’t cancel your OR time.’ For some reason
I didn’t cancel it, and I didn’t tell anybody. And y’know, OR time is a hot commodity
and people could use the time. But, I don’t know,” she says, “something just told
me to save it.”

Part of the reason Lindsay felt so frustrated was that doctors had confirmed she had
cancer in her neck, but they couldn’t confirm that the spot they saw on her tongue
was cancer or precancer. Her world felt out of control. She thought long and hard
about whether to trust a small private practice or rely on the experience of a major
cancer center. In the end, it had nothing to do with buildings. Lindsay went with
the person who was, once again, focusing not just on saving her life but preserving
the quality of her life if she survived.

“Nancy said, ‘I am going to go in there and decide what to do once I know what’s there.’
The other doctor said, ‘This is what I’m going to do regardless of what’s there.’ ”

The week after Thanksgiving, Lindsay was admitted to the California Pacific Medical
Center. She was very nervous in the operating room, wondering whether she’d be able
to talk again after the surgery. Nancy and Dr. Hartman were in the room and a nurse
put in her IV. The next thing Lindsay knew, Nancy was talking in her ear.

“Do you like how you sound? Talk.”

So, Lindsay talked.

“I’m talking and I’m getting mad,” she says, “I’m thinking,
Of course I like how I sound. Get this over with!
”

Nancy continues. “I need you to sing the ABCs. Start singing.”

Lindsay went through the ABCs and also recited nursery rhymes at Nancy’s request.

“Sally sells seashells . . .”

Nancy and Dr. Hartman kept Lindsay talking.

“We did ‘seashells by the seashore,’ then we did ‘dee dee dee, ba ba ba.’ Every little
tongue twister my partner and I could think of from our childhood we had Lindsay do.”
Nancy adds with a chuckle, “And she did them groggy.”

A groggy and confused Lindsay just wanted Nancy to start the surgery. When she woke
up in the recovery room, she was convinced she couldn’t talk. She was aggravated by
the nurses who were asking questions, knowing she couldn’t speak.

“In comes this woman in a ball gown,” Lindsay says. “It’s Nancy and she’s on her way
to a black-tie event. She starts talking to me, and I’m looking at her like,
I can’t talk!
I’ve even convinced myself that they had to do the skin graft because I can feel
that my butt hurts where they took skin. At this point, my tongue is very swollen,
too.”

An angry Lindsay sees Nancy lean in to her.

“She said in my ear, ‘Right now you’re swollen, and it’s going to
sound funny, and it’s going to hurt, but do you remember doing the nursery rhymes?
Can you hear yourself? That was
after
surgery. That is what you’ll sound like when you’re not swollen anymore. Hold on
to that.’ ”

Lindsay calls that a golden moment.

“I was like the Cheshire cat!” she says with a huge smile. “I just started nodding
and crying.”

The frustrating she-sells-seashells moments that Lindsay recalls were actually Nancy
deciding whether to add the skin graft to Lindsay’s tongue.

“I had this beautiful young woman who entrusted her speech, and her swallowing, and
the movement of her face to me, so I wanted to make sure that I didn’t have her tongue
tethered too much, because if I did, I had a couple of other tricks up my sleeve,”
Nancy says, “so I woke her up.”

Lindsay says, amazed, “She woke me up in the middle of surgery. She stitched my tongue
loosely and woke me up. She had the anesthesiologist bring me back and she had me
sing. That’s when she said, ‘Do you like how you sound? If you like how you sound
I’m just going to stitch you up.’ There’s a risk with the skin graft that if you put
too much skin on you’ll sound thick tongued, so she didn’t want to cross that line.”

Lindsay’s surgery also included the removal of lymph nodes from her neck, where the
cancer had spread. Approximately forty were taken out to be safe and would be tested
for cancer. About a third of Lindsay’s tongue was removed, a wedge from the inside
layer. She’s able to speak well today because the surface area of her tongue is not
compromised; her tongue is simply thinner, which only slightly affects its mobility.

In Lindsay’s ideal world, she’d have returned to her New York City apartment after
the holidays and begun her new job at Jupiter. But a lab report put a perilous snag
in those plans. It indicated
that a toxic node may have released some of its cancer into Lindsay’s system. The
ante was upped; both radiation and chemotherapy were now in play. A newfangled technique
had been developed that might allow Lindsay to tolerate a second round of radiation.
She was devastated, now familiar with the rigors of treatment.

“I remember saying to my mom, ‘Nancy called and said I’m a candidate for radiation,’
and I said to my mom, ‘I will not do it. It’s too hard.’ So we went the next day to
talk to the doctor about radiation,” she says. “And when they told me the statistics,
I was in. What are you going to do? Do you want a ten percent chance of survival or
fifty percent?”