by Hoda Kotb
“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?’ ”
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 wa
s 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.
