Authors: Hoda Kotb
It was the end of November 2000, and 2001 was looking bleak. Once the calendar page
turned, Lindsay would undergo radiation treatments on her neck every morning and every
night for a month. She would have overlapping chemotherapy treatments once every three
weeks for three months. But until she healed from surgery, no one could touch her.
She had eight weeks now to recuperate and to develop an action plan.
“That’s when I started having doctors’ appointments to learn what was next. What are
my options, what are the side effects? What do the next few months look like?”
At twenty-four, Lindsay was now in the second fight for her life. Her hopes and dreams
were eclipsed by a daily existence of healing and gearing up for the next battle.
“My day was spent high on pain meds, lying in bed, watching
ER
and movies. I felt like an old person, where a big day was going to see a doctor,”
she says, laughing. “And that takes all of your energy. You have to get dressed, go,
come home, and you’re wiped.”
Lindsay met with an oncologist to discuss the chemo treatments that would begin in
February. She was armed with a notebook full of questions and listened as he outlined
the litany of side effects. She had written down
Fertility?
but never brought it up since the doctor
didn’t include it in the list of potential side effects. She left the appointment
but was bothered by her assumption that infertility was not a concern. Lindsay made
a follow-up call to the doctor.
“And that’s when he said something to the effect of, ‘Yes, there’s up to a ninety
percent chance you’ll be infertile.’ I remember hanging up, crying, and not knowing
what to do. I thought,
I’m not doing it. I’m not doing chemo
.”
Unless a patient’s testicles or ovaries are irradiated—which Lindsay’s ovaries were
not—radiation does not affect fertility. But chemotherapy is systemic, affecting the
entire body, including reproductive organs. This was unacceptable to Lindsay. She’d
always dreamed of having a family.
“We have pictures of me when I was little with a balloon or a pillow in my belly under
my shirt,” she says, “and when different aunts or uncles or cousins were pregnant
I was the nurturing one.”
There was that other component, too, that fueled Lindsay’s indignation: Don’t tell
her no.
“When fertility was like that for me, a no, I was like,
No, no, no
. I did not like the idea that they were saying no to me on something so important.
I also felt, and still do, so annoyed by this focus on temporary side effects.
Why are we talking about hair loss, nausea, vomiting, and smoking medical pot? I don’t
care about any of that. It’s all temporary and I’ll get through it. But infertility
is permanent.
The goal was to cure me and to have a normal life, and fertility was part of that
for me.”
Lindsay told Nancy she would not expose her body to chemotherapy.
Nancy was blunt. “She told me she wanted to get pregnant, and one of the first things
I said to her was, ‘Lindsay, I don’t care if you ever get pregnant. My job is to save
your life. My job is to take care of you.’ Lindsay looked at me and said, ‘It’s not
my
goal.’ And there was this moment where I realized I was the doctor and she was the
patient and we had very, very, very different goals in mind,” says Nancy.
“I said to her, ‘Your pregnancy is the least of my concerns. I want you around so
you can even think about being pregnant.’ ”
This was one “no” to which Lindsay had to say yes.
“Nancy gave me the ‘This isn’t a choice’ discussion, which was really the first time
I felt like I wasn’t in control,” she says, laughing. “I thought,
I’m making the calls here!
and really I wasn’t. They were making the calls and leading me to believe I was in
control. But that’s when she said, quite poignantly, ‘I want you alive in five years
so you can consider having a family. None of this matters if you’re dead. You need
to do this.’ ”
Lindsay agreed but began to explore a solution. During these recovery days on the
couch, a particular movie she watched included a line that stuck with her. In
You’ve Got Mail,
the Tom Hanks character has a father who marries multiple times. One of his wives
is a woman in her twenties.
“And Tom Hanks says to her, ‘Where are you off to today?’ and she says, ‘Oh, I’m harvesting
my eggs,’ ” Lindsay recalls, “and this was planted in my head. So, I asked my oncologist,
‘Can I do this? Can I freeze my eggs?’ He was not opposed to it, but his knowledge
of fertility treatments was limited. He said, ‘It takes six months to do those things,
and you have six weeks before we have to start treatment.’ ”
Lindsay took it upon herself to quickly hunt down her options. She didn’t have access
to medical libraries and wasn’t familiar with the Internet sites that allowed visitors
to research links to medical journals, articles, and databases. The phone was her
research tool of choice. It still hurt to speak, but she repeatedly called major reproductive
centers around the country.
“I learned a lot in the process, because when you call you’re getting a receptionist,
and different receptionists answer at different times and they all tell you something
different. One receptionist told me, ‘They’re only doing egg freezing on sheep in
Virginia and it’s not
available for humans.’ ” She laughs. “But I’m thinking,
I saw it in the movie!
”
Lindsay was not getting anywhere, until one day when serendipity got her everywhere.
“On my fourth or fifth call to Stanford Fertility and Reproductive [Medicine] Center,
someone picked up the phone by mistake. It was five o’clock and she picked up the
wrong line and got me,” she says, smiling. “And when I told her my story she said,
‘Oh. We have a brand-new egg-freezing protocol for cancer patients that just launched.’
And literally, I went the next day.”
Hope finally eclipsed despair. She met with Dr. Lynn Westphal, who approved her as
a candidate for the new protocol. Lindsay was game for anything she had to do to preserve
her fertility before starting chemo.
“At that point I felt like I had already turned over my body and my life to medicine.
My days were filled with doctors’ appointments. I was already being poked and prodded
every day. So the idea that I got to go to a doctor’s appointment that I wanted to
go to was hopeful. I was actively planning for my future; all of that was so wonderful.”
But January 2001 would reveal both wonderful and awful news. Lindsay’s best friend
from preschool who became her sister, Kristi, was in a fight for her own life. Born
with cystic fibrosis, Kristi developed an infection in December and was hospitalized.
By January, her body was so resistant to antibiotics that the infection took over.
Kristi and Lindsay were at the same hospital, Kristi in ICU, Lindsay going twice a
day to the radiation lab. Tragically, Kristi died on January 7. One of the darkest
days of Lindsay’s life included radiation in the morning and Kristi’s funeral in the
afternoon, followed by a treatment to freeze her eggs. Her mom and Bob were beyond
devastated.
“I was going to get cancer treatments and they were going to look at caskets,” she
says. “It was a very hard time.”
Because her mom and Bob were dealing with Kristi’s death, Lindsay was on her own during
her fertility battle. On her first day in the Stanford IVF clinic, Lindsay realized
she was not the typical patient.
“This man said to me, ‘Are you an egg donor?’ and I responded indignantly, ‘I have
cancer, mister.’ His wife told him, ‘You. Don’t talk again.’ She was mortified.” Lindsay
laughs. “But you can just imagine, here I am, twenty-four, sitting in that reproductive
clinic. Single.”
Lindsay’s insurance didn’t cover the procedure, so the clinic got her donated drugs
and offered the treatment at cost, which she asked her parents to fund. For the clinic,
Lindsay was only the second newly diagnosed cancer patient to freeze her eggs. Knowing
her deadline, the staff fast-tracked Lindsay on learning the protocol for IVF treatments.
“You normally go in and hear PowerPoint presentations. You learn how to use needles.
Back then you had to mix the medications at home, and so they took me that morning,
and what a normal IVF patient has weeks to learn, they taught me quickly.”
Here’s what Lindsay was trying to do in eleven days: Use medication to stimulate her
body to produce eggs. Those eggs would be surgically removed and then frozen. Here’s
where she’s unique. The typical IVF patient would not freeze the eggs, but instead
fertilize them with sperm in the lab. The resulting embryos would then be implanted
back into the patient’s womb and ideally make a baby. But Lindsay was not yet there
in her life. She was not ready to have a baby. While using a sperm donor and freezing
her embryos instead of eggs would make for a sturdier unit (an egg has a higher water
content than an embryo, and therefore is more vulnerable to breakage or DNA damage
when frozen), Lindsay could not get on board with the idea of donor sperm. Her future
husband’s sperm would be ideal.
“Twenty-four, single, in the midst of hell; that was one thing too much. I couldn’t
add that on. I thought,
I’m going to freeze my eggs and
I believe in technology. So you guys keep working on the science so that when I need
them in a few years, you’ll be more advanced
. And I thought,
Either I’ll do this and one day be able to use my partner’s sperm or down the road
we’ll adopt
. I just didn’t feel comfortable interjecting a third party at that point.”
In order for Lindsay’s body to be stimulated by the meds, she needed a daily shot
in the backside. Depending on whether she was at home or staying at a friend’s empty
apartment in the city, Lindsay needed help.
“I was often home alone at night or with my girlfriends. So I was thinking,
Who can I see tonight that can give me a shot?
” She laughs thinking back.
“Bob gave me the shots some nights, and there were even nights when girlfriends did.
One of my friends was in physical therapy school so she practiced her first shot on
me.” She chuckles. “I remember I was with another friend and she couldn’t stomach
it, so her boyfriend gave me the shot. Ha!”
In early February, it was time for radiation. Lindsay’s insides were in for a wild
ride.
“I would go to radiation in the morning, then I’d go to IVF clinic for blood work
and ultrasound, then in the afternoon I’d go back to radiation, and then at night,
I’d have the shots.”
Lindsay’s friends were supportive but felt afraid and skittish about the topic of
cancer, which was riddled with emotional land mines. Her fertility adventure was a
much safer way to connect.
“It was hopeful,” she explains, “because it was about me surviving, and because it
was about boys, and weddings, and babies, and motherhood, and all of the things that
all of us single girls in the city were dreaming about.”
Because Lindsay wasn’t trying to get pregnant through IVF, doctors could hyperstimulate
her ovaries in an effort to harvest as many eggs as possible. While the typical IVF
patient (usually in her
mid-to-late thirties) grows ten eggs, young Lindsay grew twenty-nine. However, there
was one snag. The hyperstimulation resulted in a bloated belly for Lindsay, just as
her chemo was scheduled to start.
“So, I got in trouble. I had to call my chemo doctor and say, ‘I froze my eggs, everything
went well, but I have a little problem.’ ” She laughs sheepishly. “I think it was
delayed by maybe three days, but it turned out fine. I just spent a few days on the
couch waiting for the hyperstimulation to go away.”
As her chemotherapy date approached, Lindsay decided to put up one more fortress in
her war against infertility. Dr. Westphal told her she could undergo a newly explored
procedure to put her into a temporary menopause-like state. That way her ovaries would
be protected during chemo. If it worked, she’d never need her frozen eggs. If it didn’t,
her eggs would be there for her.
“I felt like at that point,
Sure, who cares! I’ve already been put through the wringer, so a shot a month in my
butt? I’ll have hot flashes for three months? Who cares?
”
Lindsay was spinning multiple medical plates: twice-daily radiation, chemotherapy
once every three weeks, and a menopause-inducing Lupron shot once a month. Her journey
was challenging, but it had a silver lining coated in ice: twenty-nine frozen eggs
safely stored away.
“I was actively planning for my future,” she says, “and on some level that made me
believe I would live. I wanted to live now.”
Lindsay’s social interaction was largely with people in cancer support groups and
who were undergoing chemo treatments in the Bay Area. During her appointments, she’d
sit in a room full of patients, all receiving chemo and related drugs prepared in
bags that hung on IV poles. They passed the six to eight hours by listening to music
or talking.
“I remember I was euphoric from the egg-freezing experience,” she says, “so I was
talking to the nurses and the patients sitting next
to me, and I quickly learned that this was not a good place to talk about this. I
realized,
No one knows. I am essentially telling them they are being sterilized right then.
They did not know it. I remember this guy in the room, and he was asking me questions
like, ‘What do you mean? This is sterilizing me right now? I could have banked my
sperm?’ I remember him turning to the nurse and saying, ‘Are you telling me that this
thing in my arm right now is sterilizing me?’ ”
A breast cancer patient who was receiving chemo every week for fifty-two weeks was
also stunned by what Lindsay was sharing.
“She was already a mom and wasn’t interested in more kids, but said, ‘I can’t believe
they didn’t tell me. Did they assume that I was done having children?’ ”