You have cancer.
They're perhaps the three most terrifying words in the English language. Lee Tomlinson was dumbfounded when he heard them at the age of 63. A runner, mountain climber, tennis player, and golfer, he never drank or smoked, and meticulously watched what he ate.
"I was in absolute disbelief," he says. "My next thought was, I'm dead."
LaKeesha Murray partially blacked out when her doctor told her, over the phone, that she had triple negative breast cancer. Just 36 years old, she was eight months pregnant with her third child. Labor was induced; three weeks after the birth of her daughter Aaliyah, she started chemotherapy.
A cancer diagnosis unleashes a deluge of emotions: panic, sadness, anger. After the shock and fear wear off—actually, the fear never fully retreats—patients are left with a plethora of questions. What do I do now? What impact will this have on my family? My career? My finances? My future?
Eventually, cancer patients must accept their new reality and soldier on. At some point during their journeys, when Tomlinson and Murray realized they needed more than medical help to cope, each of them contacted the Cancer Support Community (CSC). The Washington-based organization is the world's largest, professionally led nonprofit network of cancer support. Last year, more than 100,000 people reached out to the organization, which offers education, counseling, group sessions, and patient navigation to the roughly 15 million Americans living with cancer. And to their families, friends, and caregivers. All at no cost.
"We want to improve and transform the patient experience," says CEO Kim Thiboldeaux, SOC/BA '90. "One side of the coin is the medical care, but there's another. How do you make sure you're a good partner with your doctor? How do you engage in shared decision making with your doctor? How do you make sure you can afford the care you're receiving? How do you talk to your kids about cancer? Those are the kinds of things we deal with: the practical side, the social side, the emotional side."
Tomlinson was near rock bottom when he called CSC. He felt isolated, that he was a burden to his wife. He was drained mentally, as well as physically.
"I seriously considered suicide," he says. "The professional psychological help that's offered [at CSC]—but most importantly the support groups, where you can be with other cancer patients who are at different stages—oh my God, it's like you've been wandering in the wilderness for 40 years and finally come home. I don't use this word often, but it was lifesaving for us."
Kim Thiboldeaux grew up near Philadelphia, the oldest girl in a family of five children. Her dad was a bus driver, so money was tight. She chose AU for college, in part because it offered the best financial aid package. Washington proved exciting to her, and semesters abroad in the United Kingdom (she boarded a plane for the first time for her flight to London) and Argentina stoked a lifelong passion for travel.
After earning her degree, she worked for a Colombian immigration lawyer for whom she had interned while an undergraduate, before moving on to a larger firm.
"I had a good friend at the firm diagnosed with cancer," she says. "We had cancer in our family. We lost two grandparents to cancer, aunts, uncles. I seemed to have quite a bit of cancer around me."
Most people do. The American Cancer Society estimates that 600,920 people will die of cancer in the United States this year. The number seems frighteningly high—until compared to this one: 1,688,780 new cases of cancer will be diagnosed in 2017.
Over the next few years, Thiboldeaux's interests began to veer from the law toward health care. She worked for the Whitman-Walker Clinic in Washington, then as director of patient relations, oncology, and transplant at the health care company Hoffmann-La Roche. In 2000, she joined the Wellness Community as CEO. She was 31 years old.
"The idea that we could collectively bring a team of folks together to advocate for cancer patients was exciting," she says. "I could, on a very local level, connect with one patient one day and maybe help that patient—but on a much larger level be an advocate for many patients across the country to create systemic, legislative, and policy change."
In 2011, Thiboldeaux helped guide a merger between the Wellness Community and Gilda's Club (a similar organization founded by former Saturday Night Live star Gilda Radner, who died of ovarian cancer in 1989) to create CSC. The organization she joined 17 years ago—which then had 14 affiliates and was headquartered in Cincinnati—now has 47, a research and training institute in Philadelphia, and a policy institute in Washington.
CSC's growth under Thiboldeaux's leadership has helped catapult her to the highest levels of cancer policy making in the United States. In June 2016, she spoke at then vice president Joe Biden's National Cancer Moonshot Summit. He must have been impressed; this year, she was appointed to the board of directors of the Biden Cancer Initiative.
"I have met with thousands upon thousands of cancer researchers. I have met with clinicians; I have met with 9 or 10 Nobel laureates; I've traveled the world, from Melbourne to Mumbai, and visited every major cancer center. We have a national treasure here in Kim," Biden said in April, when CSC honored him and the former Cancer Moonshot team at its 35th annual spring celebration. "I'm so grateful for her counsel that she's provided me, and for framing how we continue this work going forward."
CSC is an apolitical, nonpartisan group, but it does lobby Congress on issues like access to care and affordability for patients. Thiboldeaux's team has testified on Capitol Hill and she is committed to remaining in the policy arena, fighting for the people she views as her clients—and friends: cancer patients everywhere.
"There's a new standard that's emerged in cancer care that's referred to as 'distress screening,'" she says. "When someone's diagnosed with cancer, we need to not only take their temperature and take their blood, but we need to assess their level of distress. We need to find out what the major issues they're facing are, and how to create an integrated care plan to help address some of those issues.
"We need to improve the patient journey. It is so complicated and convoluted. Some cancer centers have patient navigators, but patient navigator is not a term that's recognized like nurse or social worker. That's a lot of what we do at the CSC. We help patients navigate the journey."
Today, Murray's daughter Aaliyah is a happy, healthy five-year-old. Her mom, thankfully, has shown no sign of cancer since January. It's a milestone her doctors were not sure she would reach.
During her initial treatment, Murray developed meningitis, necessitating a halt to her chemotherapy. Later, cancer metastasized to her lungs, a development that was difficult on her then 16-year-old daughter Alexis and 10-year-old son, Lamar Jr. Aaliyah wasn't sure how to react.
"She was just learning about being happy and sad," Murray recalls. "She was having problems at night because of the emotions she didn't even know she was facing."
Murray was referred to CSC, where she took Aaliyah for counseling.
"She had the attention of the case workers, who actually sat with her and did art therapy and asked her questions," she says. "They knew the best way to explain things to her so she understood."
Raising three kids by herself and battling the disease that was growing inside of her left Murray little time to worry about her own mental and emotional health. While she never lost her faith in God, she also came to rely on the fellow patients she spoke with in CSC group sessions.
"They know how it feels day to day—to try to survive and live with cancer, with being sick and not knowing how things are going to pan out in your life. Because with cancer you just never know," she says. "We talk about wigs, or where we should go to buy different things that can help us feel pretty. You don't feel pretty all the time, with the scars and the body parts that are taken away. To have people there that can relate to you, and the staff there who are nurturing and supportive, it's so important."
For Murray, Kim Thiboldeaux became one of those people. The two women from the City of Brotherly Love developed a sisterly bond. Murray says their conversations were invaluable during times when she didn't know whether she wanted to live or die.
"I can pick up a phone and call Kim at any time, and she'll always listen," she says. "You don't feel like you're in this alone. She is somebody that really cares."
Loralei Osborn, Kogod/BSBA '90, saw those traits in Thiboldeaux when they lived together in McDowell Hall at AU. In the ensuing years, through an enduring friendship, she would come to rely on them, much as Murray does.
"My dad, my mother-in-law, my sister, myself—we've all reached out in some way to the Cancer Support Community," she says. "When I went through my journey of genetic testing, the first person I called was Kim, even though it was 11:30 p.m. I knew that she would be there for me. The next [resource I relied on was] the literature from CSC. That was hugely helpful for me, and I know Kim and CSC will be helpful to my daughter when she's older."
Ask Lee Tomlinson when he was diagnosed with stage 3 throat cancer, and his answer is not vague.
June 23, 2012. 10:28 a.m.
An avid golfer, Tomlinson was playing in an amateur tournament when he noticed his eyes were watering, his nose was stuffed up, and his sinuses were painful. Damn allergies, he thought. He went to see an ear, nose, and throat doctor, where an endoscopy revealed something far worse.
A tumor in his throat.
"I figured my life was over," he says. "I have known people who have had cancer—they all died. Then [doctors] told me that if I did survive and they had to do surgery, which was likely in addition to chemo and radiation, I would lose my voice. Then I was sure my life was over, even if I lived. How do I survive without speech?"
Tomlinson's treatment was taxing. He lost 60 pounds. His voice was affected, though not lost. He had to relearn how to swallow. He's experienced numbness in his hands and feet. His memory has even declined. "Chemo brain," it's called.
But he wasn't the only one suffering.
"My [then] wife was bearing so much of the burden of this thing," he says. "She was getting burned out trying to take care of me and my craziness. The fear and the anger at the disease, the regimen and the pain—it didn't make me my best self, to say the least. I was an asshole. I wasn't trying to be, but it didn't put me in the best mood, and she was around me all the time."
Tomlinson called CSC, a decision he says is one of the best he's ever made. He and his wife began going to support sessions regularly.
"To be among people who understand every single word of what you're saying, that you can be absolutely honest with, it's otherworldly," he says. "How you are mentally when you go through the cancer battle can largely determine the outcome. Losing hope can kill you. It can mean the difference between life and death."
In August, Tomlinson was declared cancer-free. He celebrated by going skydiving, and he has returned to the golf course. The game is a little rusty, not that he cares. Still, he continues to go to CSC support group sessions, because, well, once you have cancer, it's never truly gone.
"I'm alive—and I'm thrilled to be alive," he says. "I'm the luckiest sonofabitch on the planet. The enjoyment and the pleasures that I have right now are a true gift. But it's challenging to this very minute."
When Thiboldeaux joined the Wellness Community, she embarked on a tour of the organization's affiliates, a practice she continues to this day. Then, as now, she would sit in on group meetings, listening to people discuss the impact of the disease on their lives.
A common theme emerged.
"Folks would say, 'Cancer was a wake-up call for me,'" she says. "Maybe they realized they had a job that they hated or never took those trips that they were planning to take. Maybe they realized they were in a bad marriage. That something like [cancer] could be a wake-up call after decades of living your life, that scared me more than anything. I didn't want cancer to be a wake-up call for me."
In October, Thiboldeaux visited Australia, the 50th country in which she has set foot. She has climbed Mount Kilimanjaro, hiked to Machu Picchu, and camped in a yurt in Mongolia. She's been to all seven continents and all 50 states, a goal she set out to accomplish before she turned 50.
In February, she will celebrate her 49th birthday.
"I do attribute a lot of that to this job and this work," she says. "It's so easy to say, 'I'm so busy, I can't go, I don't have the time.' It's been a strong motivating factor for me to do the things that I want to do—to travel and to try, in my work, to make a difference in the world."