Ten Years Later (9 page)

Lindsay finished all her treatments in April 2001. The five-month medical marathon
was over. A week later, she moved back to her apartment in New York City. Her parents
were concerned that she’d feel alone, but Lindsay had gotten through the tunnel and
now needed the light.

“Really, after being in their home through surgery and healing, then my sister’s death
and all my radiation and chemo, and everything in that house and bedroom, I thought,
I don’t want to stay here for another minute
.”

Lindsay had received a severance check from Jupiter Research while she was still at
home. The company had downsized, and her position—which she never filled—was eliminated.

She says with a smile, “Never one day on the job, and I got a huge check.”

As spring moved into summer, Lindsay began to think. Ever since the realization that
other cancer patients were not being informed about options to protect their fertility,
she felt like she had a secret that needed to be shared.

“You get car insurance, but do you drive around hoping you get into an accident because
you have it? No. It’s the same with frozen
eggs. You hope that you never have to use them, but if you do, you’ll be really glad
they’re there.”

She began researching whether it was standard practice to inform patients that infertility
is a potential side effect of cancer treatment.

“I really felt in my head for a long time,
Am I making this up? Is it even an issue? Was I totally high on pain meds? Am I making
a mountain out of a molehill?
I didn’t fully trust myself on it yet.”

The more Lindsay read and the more people she talked to, the more her concern was
validated. She began to write a business plan for a foundation that would spread the
word. When a friend found out what she was doing, he e-mailed her and encouraged her
to meet a cancer survivor he’d seen speak at an event for the American Cancer Society.
He told her the survivor, Doug Ulman, had started a foundation to support and educate
young cancer survivors.

“I called him and said, ‘Hey, I heard you started this nonprofit,’ ” she says. “ ‘I
have this inkling about a problem around fertility and I want to run it past you.’ ”

Coincidentally, she had called Doug during his first week as director of survivorship
at the Lance Armstrong Foundation. He told her no one was addressing the issue, and
that Lance and his wife Kristin would be interested in talking with her.

“It was interesting because at the time, Kristin was my hero,” she says. “Lance has
a good story, but Kristin answered all my hopes and fears. In an article I read, I
learned that she met and chose Lance after his cancer. She talked a lot about how
many of her friends thought she was crazy, like, ‘Why are you falling in love with
this man who almost died?’ And she said, ‘I’d rather have one year of wonderful than
a lifetime of mediocre.’ And I thought,
Oh, my gosh. It’s possible for someone to love me. There may be a boy version of Kristin
out there who will take the risk.
”

Lindsay continued to write her business plan and planned to have Kristin write the
foreword. Her former mentor at Gazoontite helped
Lindsay structure the business plan, and Lindsay marveled at how her own brief work
experience was paying off.

“So, what happens? When I go to write my own business plan, I know how. I’ve seen
a medical advisory board being formed. I’ve gone to medical conferences. I know how
to raise money. Every skill I learned enabled me to start the foundation.”

As she honed her business plan, Lindsay ruminated on different names for the foundation
and implemented Internet searches for already-taken trademarks. She ran her ideas
by friends and narrowed down her choices to two: Fertile Hope or Fertile Options.

“I really liked Fertile Hope, but it bothered me a little bit. I kept thinking,
This is not just hope, these options are real
.
These are tangible scientifically proved options
. So I was really leaning toward Fertile Options because of that.”

In a walk through Central Park, Lindsay listened to her girlfriend’s argument that
Fertile Options seemed boring, not warm enough for fund-raising, and not as effective
from a design standpoint. Lindsay bought in.

“I was pressured away from what I wanted, to what everyone else wanted.” She smiles.
“And I’m so thankful. In the end it was such a better name.”

As Lindsay continued to work and transition back into a treatment-free life, she experienced
what many cancer survivors do: the feeling that you don’t quite fit in.

“When I got back to New York, I felt that way. I didn’t fit in because my friends
were working all day and I didn’t have a job, and then every night we’re going out
to dinner and, guess what? Everyone’s smoking. This was all before the smoking bans
were put in place in the city. All of these young kids are drinking and smoking and
there’s some drugs going on, and I’m thinking,
You all have healthy bodies and you’re deliberately poisoning yourselves
. I was really struggling.”

She jumped at the chance to nanny for a family who’d be spending the summer in Nantucket.
The five children were all under the age of twelve.

“The real reason I wanted to go was that the mom is a venture capitalist, and I thought”—she
says with a grin—“
I am writing a business plan and she can help me.
”

Lindsay enjoyed her summer in the secure bubble of an active family along with a healthy
outdoor lifestyle. She returned to New York and completed her business plan in September.
Her friends in the magazine industry had procured an article in
Allure
about her and Fertile Hope. On September 11, Lindsay was getting her makeup done
for a photo shoot in a friend’s apartment in the West Village when news broke on the
television that a plane had hit one of the World Trade Center towers.

“And so we go up on the fire escape to see what happened to the plane, and a second
plane goes in. We saw it live.”

The 9/11 terrorist attacks unfolded in person for people in the city, and on live
broadcasts around the world. Lindsay’s parents encouraged her to come home, but she
did so only for a visit. She felt the need to heal with her fellow New Yorkers who’d
shared the horrors firsthand. Her plan to launch Fertile Hope in October was met with
some skepticism.

“People were saying to me, ‘You cannot start a nonprofit in New York City and compete
with 9/11,’ ” she says. “ ‘There will be no money coming your way.’ ”

But Lindsay was resolute. She was confident in her plan and her ability to execute
it. Her dad generously offered to donate enough money to pay her a modest salary for
a year until she got things up and running.

“Without seed money from my dad, I wouldn’t have been able to give Fertile Hope my
all,” Lindsay says. “I felt spoiled by his gift and vowed to pay it forward.”

Her financing was in order, but what of Lindsay’s emotional state? As a brand-new
cancer survivor, she considered whether immersing herself in cancer issues would be
too stressful.

“People warned me about that,” she says, “but I felt that at Fertile Hope I wouldn’t
be talking about cancer every day. There would be a very small amount that I’d need
to know about someone’s cancer to help them with fertility.”

She was determined to proceed and was also encouraged about the quality of her life
in New York. News began brewing that Mayor Michael Bloomberg was spearheading a sweeping
ban on indoor smoking that would include nearly all bars and restaurants. With her
business plan completed and a start-up grant from the family she worked for on Nantucket,
Lindsay launched the Fertile Hope website in October. She’d read online about an annual
meeting of the American Society for Reproductive Medicine slated for October in Orlando
and decided to attend. Her goal was to determine whether she was on the right path
and to ask some of the doctors to be on the foundation’s medical advisory board.

“I had to go buy a suit. I had no ‘big girl’ clothes. I flew to the conference and
when I got there I thought,
Whose idea was this?
” She laughs. “It’s just me and my flyer and I have no ‘MD’ after my name. I’m just
a patient and I think this is important. I walked straight to the bathroom and started
crying.”

Admittedly shy about networking, Lindsay was mortified.

“I have to walk up to strangers, start talking to them about this idea that is very
personal, I have never fund-raised before, I’ve never talked to these doctors, and
I am twenty-five. In retrospect, I was very young.”

In tears, Lindsay continued to doubt her decision to attend. But as the conference
progressed, she began to meet doctors who introduced her to other doctors once they
heard her pitch. By the first evening, she had scored an invitation to a dinner with
doctors
from Cornell, which houses one of the top IVF centers in the world. She was led into
a car with Cornell’s Dr. Zev Rosenwaks, the grand poobah of IVF, who trained under
the doctor who pioneered in vitro fertilization.

“I am in a black town car in the middle seat on the hump, and Dr. Rosenwaks is next
to me, and I have no idea who he is, so I’m just talking to him. ‘Hi, my name’s Lindsay,’
and he said, ‘How old are you?’ We talked for a bit more and then again, ‘How old
are you?’ When I told him twenty-five he said, ‘My children are your age.’ I remember
thinking,
Who cares? Is this really an issue?”
she says, laughing.

Lindsay dined with some of the greatest minds in the IVF world, along with the most
highly acclaimed published authors on the subject, and the very people who developed
techniques she might employ one day to have children. Still not realizing the respect
Dr. Rosenwaks commanded, Lindsay plopped down in the seat next to him since it was
empty.

“We talked the whole night. He agreed to join my medical advisory board, he agreed
that this was so important, and he wanted to help; he said Cornell would give me a
grant.”

The doctor also told Lindsay he’d tell the influential pharmaceutical companies to
talk to her.

“The next day I had all these leads with fertility pharmaceutical companies; I’m up
in their suites that I didn’t even know existed.” She shakes her head in amazement.
“So, at each step of the way, there was validation, validation, validation. And it
took off from there.”

Now that Lindsay had identified that there was a real problem in communicating fertility
options to cancer patients, she set out to find out why it was happening. She located
a study published in the
Journal of Clinical Oncology
that asked oncologists whether they brought up fertility-preservation options with
their male cancer patients. A sister study also asked male cancer patients if their
doctors
offered the information. Although 91 percent of the oncology physicians who responded
agreed that sperm banking should be offered as an option to all men at risk of infertility
because of cancer treatment, only 10 percent of them said that they informed their
patients. Lindsay was most interested in the reasons why oncologists failed to broach
the topic. According to the study results, the factors that were most likely to influence
oncologists not to offer the sperm-banking option included:

• The patient is HIV positive

• The patient has a very aggressive disease and needs rapid initiation of cancer treatment

• The patient has a poor prognosis for survival

• The patient is open about being gay

• The patient does not have health insurance

• The patient already has at least one child

The results both appalled and motivated Lindsay.

“When I read that study,” she says, “that was when I decided,
I’m in. I’m so in, because this is atrocious.
”

While Lindsay agreed that curing cancer was the bull’s-eye in terms of the need for
time and money, she had trouble understanding why the concept of offering up fertility
preservation as a concern to cancer patients was so foreign.

“Focus on the cure, but in the meantime, there are some low-hanging fruit,” she reasons.
“We can solve this problem.”

Fueled by all that she was learning, Lindsay dismissed other peoples’ suggestions
to her to introduce Fertile Hope slowly.

“Everyone was saying, ‘You should start small. You should test the market and do a
pilot program.’ And I thought,
No way! If I do this only in New York, someone in Texas is getting sterilized! Someone
in Chicago is getting sterilized!
That was the biggest thing for me,” she
says. “Once I uncovered the depth and breadth of the problem, every day it bothered
me that people were being sterilized and they didn’t know it. Every day, right now,
at every cancer center, they are being sterilized. And right down the hall is a sperm
bank or a reproductive clinic, and they could be doing this, but they don’t know.”

Lindsay began to talk with oncologists. She was confident they were first and foremost
concerned with saving their patients’ lives, but she wanted to know what else might
be keeping the topic of fertility outside of the doctors’ examining rooms. It soon
became clear that, because IVF was an emerging technology, many doctors had gone to
medical school before it even existed. For doctors who weren’t familiar with the specialty,
opening that can of worms—or sperm—was a deterrent to the conversation.

“They don’t want to get inundated with a million questions, it’s going to be a time
suck, and it’s hard on the ego,” she says. “They don’t want to admit ignorance on
something, especially on the first day when they’re trying to build your trust and
confidence, and they don’t want to deliver a double blow. ‘Oh, by the way, you have
cancer and you might end up infertile.’ And many have common misconceptions about
the area, such as, ‘He came in without shoes; he can’t afford sperm banking,’ and
when you ask the average oncologist how much he thinks sperm banking costs, he’ll
say thousands of dollars and it only averages six hundred dollars.”