Ten Years Later

by Hoda Kotb

  In November 2002, Lindsay’s friends helped her organize a large fund-raising event for Fertile Hope in New York City. Kristin Armstrong, who was on the foundation’s board of directors, asked Lance to speak at the event. The people and the fund-raising dollars rolled in. Several cancer survivors who attended became Fertile Hope volunteers, eager to donate their time to fund-raising, graphic design, and marketing. Just a few months later, in January 2003, one of the volunteers became Fertile Hope’s first employee. Lindsay was also able to rent shared office space and hook up a phone and a hotline. Reproductive centers were now offering to sponsor Fertile Hope events and pharmaceutical money was coming in. Doctors in the reproductive field were amazed.

  “They wondered, ‘Who is this girl? Last year she was at the medical conference with a flyer, and the next year Lance Armstrong is speaking to us about how important this is, and in the meantime she has been in the New York Times and the New York Post and the Wall Street Journal.’ It was all happening fast.”

  Fertile Hope launched with five areas to advance: awareness, education, financial assistance, research, and support. Lindsay knew they could not achieve them all at once and that each one would lead to the next with fund-raising as fuel for the forward movement. She was speaking all over the country, but mostly to fertility doctors. The reproductive world took quickly to the idea of Fertile Hope: new patients, new money, and a way to advance the technology of egg freezing. But the cancer world was not as receptive, an issue she hadn’t anticipated.

  “Fertile Hope became the darling of the reproductive industry very quickly,” she explains, “but the cancer industry was so hard to penetrate, it was shocking. And that was hard for me, and frustrating. We had to really think harder. Every pharmaceutical company in the world was trying to do the same thing: How do you change physician practice? How do you integrate what you want into their day-to-day checklist? And here little Fertile Hope was trying to do that. We ended up doing it in six years, which is faster than most people can, but I expected from my dot-com glory days that that would happen in six months or a year.”

  A breakthrough came in fall 2002 after Fertile Hope sent out fifty thousand brochures, one to every cancer doctor and nurse in the country. A follow-up focus group helped the foundation to gather feedback and measure the impact of the mailing. What was the most effective way to get oncologists to refer their patients to Fertile Hope? Lindsay listened in as the focus group leader spoke with an anonymous doctor over the phone. His response proved to be a game changer for the foundation.

  “He said, ‘I am busy and I am not going to go to a meeting about fertility. I go to meetings about how to best treat my patients and do my job, and even if I’m at a conference where fertility is being discussed, it would probably coincide with another class that’s more important to my patient’s survival, so I won’t go to it. But I am interested and I want to do right by my patient and do think this is important, but bring the information to me. Don’t make me find you.’ The leader followed up with, ‘How do we get to you?’ ”

  The doctor explained that every major hospital in the country does something called grand rounds, most often on a weekly basis. Presenters are brought in, and the goal is to help doctors and other health care professionals stay current on evolving areas that may be outside of their core practice; the newest research and treatments. The doctor said, “If you can penetrate that, you’re in.”

  Lindsay immediately developed a business model for physician education via grand rounds.

  “Our goal for the first year was to do ten major cancer centers and ten community hospitals,” she says. “We blew those numbers out of the water.”

  Then came another creative idea: a way to get the local fertility doctors into grand rounds.

  “Let’s say we had a talk in Connecticut. So, we’re going to go to Yale and do grand rounds at the cancer center with all the oncologists. We would call the local reproductive doctor there at Yale and say, ‘Hey, we’re doing grand rounds. Do you want to come and do the presentation with us?’ Uh, yeah. Of course you do. So they would come and we wouldn’t even give them an honorarium. ‘We’re not paying for anything. You come. It’s a huge opportunity for you that you wouldn’t have without us.’ We would give a one-hour presentation and then all the oncologists would have the information they needed, all because that one doctor in that one focus group said, ‘Come to me.’ ”

  Blending the two worlds of oncology and reproduction was finally happening. Lindsay says a particular grand rounds session exposed the disconnect that was right before the medical community’s eyes.

  “I’ll never forget this. We were at the Cleveland Clinic doing grand rounds, and it was me and the female reproductive doctor and the male reproductive doctor. The male doctor gets up and says, ‘Before we get started I just want to see a show of hands as to who knows where the Cleveland Clinic sperm bank is?’ And no one raised a hand. And then he says, ‘See out the window? There’s a courtyard. It’s right there. You can see it out the window. Just so you all know, it’s right there.’ ”

  Nancy puts herself in the category of cancer doctors who needed to look beyond their specialty.

  “Do you think that I ever once thought about a woman’s uterus or ovaries? I can tell you, until I met Lindsay, never. My ecosystem was the head and neck. I wanted her to speak, swallow, and breathe as normally as possible, and those are three things we do every day and take for granted, but if I don’t fix you right, you’re not going to do them. So my goal was—this beautiful voice, she loved to eat food, she loved red wine—to be able to return her to those things. Did I ever once think about her ovaries? No,” she admits. “Now, I know this is going to sound callous, but did I care about her ovaries? No. My job was to cure her; to give her a life the best I could, and to save the things that were in my control. What she did was say to me, ‘Hey, guess what, doc? Not good enough. I expect you to get me to swallow and speak and breathe again because that’s your job. But in the meantime, you need to have a conversation with this doctor and this doctor and this doctor, because I don’t understand the side effects of all the sort of stuff you’ve ordered for me.’ And I was like, ‘Really?’ And guess what? I did. She taught me.”

  In October 2003, Jordan proposed to Lindsay. They were married eight months later. Nancy and Dr. Hartman went to the wedding. A photo Nancy treasures hangs on her office wall.

  “There is a picture of the beautiful bride smiling, and he and I are on either side of her kissing her cheeks, and people come into my office and say, ‘Oh! Is this you and your husband and your daughter?’ ” She laughs. “And I say, ‘No, but it’s my favorite picture of any wedding I’ve ever been to.’ If they would have told me that I would see her walk down the aisle with this stunningly handsome man I would have never believed it.”

  Dr. Daniel Hartman, Lindsay, Dr. Nancy Snyderman, 2004.

  (Credit: Michelle Walker Photography)

  In the fall of 2004, Fertile Hope launched Sharing Hope, a financial assistance program for fertility preservation. The goal was to increase access to egg freezing, embryo freezing, and sperm banking for newly diagnosed cancer patients whose medical treatments put them at risk for infertility. Fertile Hope worked with companies and clinics to arrange for discounted services and donated medications for eligible female and male cancer patients. The newly married Lindsay was also launching a personal mission: get pregnant. She had stopped taking birth control pills prior to the wedding and was a bit concerned because her cycle became very erratic. She developed severe cramps, pesky yeast infections, and long, heavy periods. Lindsay had the gut feeling that she was possibly having miscarriages. She made an appointment in October with Dr. Rosenwaks for herself and Jordan to see if they were both fertile. Tests indicated each was, and the doctor encouraged the pair to try to get pregnant on their own. By the next month, Lindsay was pregnant, but within a week, she miscarried. The stress was mounting for Lindsay. She was having problems staying pregnant, a
nd due to her prior cancer treatments, the biological calendar of her ovaries was ten to fifteen years shorter.

  “I really felt, in that moment, that infertility was harder than cancer ever was, because you’re always in the land of the unknown. I don’t know why I’m miscarrying, I don’t know why it’s not working, I don’t know, I don’t know, I don’t know. With cancer you’re always in action mode. There’s a plan every day. Today I killed my cancer. I had radiation. That’s very active. But with infertility, you can’t do anything for weeks. You just have to sit around and wait. I found it very hard.”

  Plus, she was haunted by a conversation she’d had with a doctor prior to a speaking engagement at Yale. She had miscarried in her hotel room before giving a speech to oncologists. Sad and desperate for answers, Lindsay secretly presented her own case to the local reproductive doctor she appeared with at the presentation.

  “I lied and said, ‘This woman called me this morning and here’s her case.’ I laid out my case, and he said to me, ‘There’s no hope. She needs donor eggs. You need to call her and tell her it’s not going to work.’ So I asked him, ‘What if it’s on the male side?’ And he said, ‘That never happens. That’s like a point-five percent possibility.’ ”

  Lindsay had survived cancer, found her Prince Charming, preserved her eggs, and now she couldn’t get pregnant. She was thankful she could help other people manage their fertility, but she felt aggravated that she had no control over her own.

  “The challenge of running my own organization and having it overlap with my life,” she admits, “happened with the fertility piece, not the cancer piece. I found it very hard to go to work every day. I couldn’t get away. My life at home was all about fertility and my life at work was all about fertility, and that was very hard.”

  Lindsay wanted to explore every avenue of what could be causing the problem, so in early 2005, Dr. Rosenwaks ordered a karyo-type test for both Lindsay and Jordan. It’s basically a blood test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells. The test could determine whether a chromosome defect was preventing Lindsay from becoming pregnant or causing miscarriages. Lindsay was standing in Penn Station en route to a work conference when her phone rang. It was Dr. Rosenwaks.

  “He said, ‘Lindsay, I’m so sorry. We got the test results and we uncovered that Jordan has a rare genetic abnormality that’s causing the miscarriages.’ And he had his bad-news voice on, the voice he uses when he says, ‘I’m sorry, you’ve miscarried.’ But I said, ‘Awesome!’ ” She laughs. “ ‘You found the problem and now we can fix it!’ ”

  Lindsay was excited, but Jordan took the news hard.

  “I felt terrible,” he says. “She survived. She did everything she could to preserve her fertility so she was one hundred percent able to have children, and then I come along, we’re in love with each other, and then I’m the cause for her to go through another challenge to accomplish her dream.”

  Both were astounded by the odds of two people meeting and getting married who had such unique fertility challenges. They were also immensely grateful there was a potential solution, one that had just launched in the medical market. Science now allowed for the ability to create embryos, suck one cell out of each, and check them under a microscope to determine which embryos were genetically normal. So that’s what the pair did. In June 2005, they began IVF utilizing pre-implantation genetic diagnosis, or PGD. Alas, no good embryos. But in September, three healthy embryos were identified and two were implanted in Lindsay. The doctor told them that if this didn’t work, the next step could be a sperm donor. Lindsay’s frozen eggs were available, but success was unlikely in the reproductive process due to Jordan’s chromosomal abnormality. Miraculously, this time, Lindsay got pregnant. With cautious optimism, they counted the days, praying she wouldn’t miscarry. At five weeks, Dr. Rosenwaks told them they could come in to see the fetal heartbeat.

  Lindsay, undergoing IVF treatment in 2005. (Courtesy of Lindsay Beck)

  “So we’re there, and Dr. Rosenwaks cautioned us, ‘If there’s no heartbeat, it’s still early, don’t panic.’ He was trying to manage our expectations,” she says. “And there is a little jelly bean with a heartbeat. The moment was surreal, and I remember saying, ‘This is why I wanted to survive.’ I can still picture it: I’m in the stirrups, Jordan is by my head, Dr. Rosenwaks is literally between my legs, and we’re all looking at this little TV screen, and despite that completely exposed moment, it was so calm and peaceful and happy. And I was thinking, This is what I want for all the people I’m trying to help. It was really, really powerful.”

  The pregnancy went smoothly, although Lindsay was nervous about the health of the baby. Her ob-gyn calmed her nerves by categorizing Lindsay as a perfectly healthy mom-to-be.

  “And I laughed, ‘What? Have you seen my chart?’ And she said, ‘I know it’s been a long haul to get here, but from a pregnancy standpoint, you’re a normal, healthy patient.’ I would still be nervous for all the tests and ultrasounds, and I remember she said, ‘Welcome to motherhood. It’s a lifetime of worry.’ It made me feel like I was acting normal, and this is how you’re supposed to feel.”

  Their healthy daughter Paisley was born on June 1, 2006. Lindsay and Jordan were delighted to keep the gender of their new baby a surprise.

  She says, smiling, “We joked that it was the one thing we could do the old-fashioned way.”

  Their joy was paired with a sense of wonder. Both had beaten the odds to have a biological child.

  “For both of us, it was magical.”

  When Paisley was just hours old, Dr. Rosenwaks came for a visit at the hospital.

  “And I asked him, ‘How long after you stop nursing do you have to wait before doing IVF again?’ He said, ‘Okay, that’s a record. No one has ever asked me minutes after delivery when they can have another.’ But I couldn’t help but think, I want to do this again and again and again.”

  Lindsay shared the news with Nancy, who made it clear she did not want to be called Grandma.

  “I told Nancy and her partner Dr. Hartman,” she says, “ ‘Not only did you save my life, you enabled this. My legacy. This baby was born because of you.’ ”

  Busy new mom Lindsay continued her work with Fertile Hope. She coauthored a guideline issued by the American Society of Clinical Oncology. Published in the Journal of Clinical Oncology, the ASCO guideline reads in part: “As part of education and informed consent prior to cancer therapy, oncologists should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists.”

  This was a huge step forward in Lindsay’s mission to ensure that cancer patients were made aware that their fertility was potentially at risk and that options were available to preserve it. Now, instead of Fertile Hope making calls, the foundation’s phones were ringing nonstop. Doctors and cancer centers around the country began inviting Fertile Hope representatives to grand rounds; patients now had to be informed, so physicians were reaching out for information and guidance.

  Lindsay also coauthored a book called 100 Questions & Answers About Cancer and Fertility. It featured practical and credible answers to the most common questions asked by cancer patients and survivors about fertility.

  “I cowrote it with a physician because I felt like I needed the MD expertise and endorsement,” she says.

  The first person Lindsay hired at Fertile Hope, a fellow cancer survivor and passionate advocate, also worked as a coauthor of the book.

  Work and family were keeping Lindsay busy as she and Jordan cared for seven-month-old Paisley. And it was about to get busier; ideally, they wanted their family to grow by one. Lindsay stopped breastfeeding in December and began IVF treatments in February 2007. The results were discouraging times two. The first cycle didn’t work and the second resulted in an early miscarriage. Dr. Rosenw
aks told her to take the summer off from IVF treatments. Lindsay grudgingly agreed but made sure to chart her ovulation schedule and not miss an opportunity.

  “It was my only coping mechanism,” she says. “We’ll take the summer off from IVF, but I’ll secretly have us try on our own.”

  She tried and succeeded. Lindsay got pregnant and gave birth to a healthy son, Walker, on March 20, 2008. She took a three-month maternity leave from Fertile Hope and returned to work in July. The foundation was gearing up for a productive fall fund-raising season. But as it approached, the very month that would typically generate big dollars instead revealed big trouble. On September 15, 2008, Lehman Brothers filed for Chapter 11 bankruptcy protection. The collapse was very bad news for the global financial markets and for Fertile Hope. The people who supported the foundation were greatly impacted by the financial-market meltdown. Although Jordan had left his job at Lehman a year earlier for another job on Wall Street, many of his friends still worked at the now-bankrupt financial-services firm.

  “New York City supported Fertile Hope,” she says. “All of Jordan’s friends and clients were the ones who came and bid on everything at the auctions. Wall Street supported Fertile Hope big-time, and so that was devastating. I thought, What do we do?”

  TEN YEARS LATER

  In early 2009, Lindsay began to reflect on the quality of her life, something she’d so passionately fought for back in 1999. She was still alive ten years after her first cancer diagnosis, she’d formed a meaningful and important foundation, she’d met the man of her dreams, and she had given birth to two children. Now she was working four ten-hour days just so she could be a full-time mom on Fridays. Even with a full-time nanny, she was feeling out of sorts and out of touch with the core business she had birthed.