Ten Years Later

by Hoda Kotb

  “I let her be in the driver’s seat as much as possible,” Nancy says, “because when patients are sick, they never feel like they’re in the driver’s seat.”

  The eight weeks of radiation Lindsay underwent included a two-pronged attack. It would prove to be so draining that Lindsay had to move home so her mom could drive her to appointments and help her recover. Every day for six weeks she was given standard radiation. The final two weeks required a special hit that was especially horrific.

  “They’d put me to sleep every day for two weeks. They’d pull my tongue out of my head, all the way out, so it was like . . .” She grabs her tongue and yanks it out. “My tongue was pierced with a thing on it so they could pull it out and hook it to a board, and then they would radiate just where the tumor was.”

  Lindsay worked at Otis during the first four weeks of radiation treatments, but exhaustion and pain drove her to take partially paid medical leave. She was supposed to be having the time of her life—starting a career, building her future—but instead, Lindsay was battling to survive. Looking back, she forgives herself for some of her young flights of fancy that served as pressure valves.

  “I came in one day for treatment and said, ‘I’m going to Vegas.’ ” She chuckles. “ ‘My college friends are having a reunion. We graduated a year ago and we’re all meeting in Vegas, and we’re staying at the Venetian for the weekend.’ ”

  Another Lindsay Moment, another call to Nancy.

  “She sat me down and she said, ‘No sun, no smoking, no drinking because of the pain meds. But if you want to go, you can.’ ”

  I ask Nancy why she let her go.

  “She had a life to live, and I was always weighing the fact that, frankly, I knew that what we were trying to accomplish was nearly impossible. I thought her life could be short, and what the hell; life is full of experiences, and I knew that she would remember that as a wonderful time, and the downside was minimal,” she explains. “I knew that because I had earned her trust, that if I gave her ground rules, she would honor them.”

  Lindsay did go, sat in the shade, shopped, and enjoyed several spa treatments. Again, she was grateful to Nancy for artfully managing both her disease and her personality.

  “She from the start looked at me like, ‘You’re not tongue cancer, you’re Lindsay.’ ”

  Even after Lindsay completed her eight weeks of radiation treatments, the side effects stuck around. The radiation continues to damage tumor cells for several weeks following the end of scheduled treatments. Lindsay’s neck and tongue were raw, it hurt to speak and eat, and she slowly lost her sense of taste. There was a risk she would never regain it. Her sour, bitter, and salty components disappeared first.

  “The last to go for me was sweet,” she says. “I remember running through the house looking for licorice and then tasting it, realizing, I could taste it yesterday and now it’s gone. I also remember walking into the house and it smelling so good, but then sitting down to eat and, nothing. It was really, really hard.”

  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 expec
ted 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 it
s 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?”

  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.