Cancer Survivor Seun Adebiyi Is “Living Breath to Breath”

Though the courageous American Cancer Society ambassador is in remission, he still lives by the mantra that got him through cancer: This too shall pass.

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- Posted on Aug 10, 2015

Seun Adebiyi in the NYTimes

In 2009, Seun Adebiyi had it all. At 25 years old, he had just graduated from Yale Law School and had become the youngest in-house attorney at the Wall Street investment banking firm Goldman Sachs. One week after his birthday and graduation, as he was heading to Salt Lake City, Utah, to train to be the first winter Olympian from Nigeria, his life changed forever.

“I’d noticed some of my lymph nodes were swollen and I went into [Yale’s] student health,” Adebiyi tells Guideposts.org. “Otherwise I was healthy, I was exercising. But the lymph nodes kept getting bigger. They were the size of golf balls.” 

Adebiyi was diagnosed with stem cell leukemia, a very aggressive, very rare form of cancer that turns lymph cells into lymphoma and stems cells into scar tissue. Chemotherapy and radiation wouldn’t be enough to save his life—he needed a stem cell transplant.

“Fewer than 17% of African American patients who need a donor are able to find one,” he says. “Some say it’s a little as 5%. And finding a perfect match is not a guarantee of a cure. That’s just the first step. I was shocked that my ethnicity was playing such a huge role in my cancer and whether I’d survive.”

Adebiyi became outraged by his shocking and helpless prognosis. Then he decided to take back some control.

“The silver lining of being given a terminal diagnosis—if you can say there is one—is finally, you’re free of all of these burdens. Up until that point, I’d been running this race against who I thought I should be. I grew up poor so, if I got so much money or published this many articles, or whatever metric I used, that was success. It was very externally focused. Suddenly, I was free. It was liberating! It was almost like waking up.”

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During this epiphany, Adebiyi realized that there were only two things he really wanted out of life, however long his would last, and that was, “to use my story to create awareness about the need for stem cell donors, and to live life to the fullest and have as must fun as possible.”

He found an interesting way to combine both of those goals: he would continue training for the skeleton—a Winter Olympics event where competitors race down ice, head first, on a thin sled—representing a country that doesn’t even have winter, while battling cancer and starting donor drives all over the country.

Adebiyi’s inspiring story spread nationwide, thanks to superstars like singer Rihanna and Grey’s Anatomy star Justin Chambers encouraging their fans to register as donors. Several people who went to his drives ended up being matches for other people. Sadly, Adebiyi still hadn’t found a match for himself. That’s when he decided to organize a donor drive in his native Nigeria.

With the help of two partners from Goldman Sachs who each contributed $20,000 of their own money,  Adebiyi was able to fund a donor drive in Nigeria. Before he was scheduled to leave the United States to host the drive, he received some glorious news. A Nigerian woman living in the U.S. had given birth and donated her umbilical cord—a perfect match!

Adebiyi had a decision to make: go to Nigeria as planned or stay and get the potentially life-saving stem cell transplant. Remarkably, he chose to put off the transplant and go to Nigeria on schedule.

“God had a plan,” he says, referring to his privileged position to receive excellent health care, thanks to the benefits and support he received from Yale and Goldman Sachs. Many other Americans and certainly many Nigerians do not have access to that kind of health care. He decided to use his position to help others. The decision to delay his transplant, he says, was “a no-brainer."

“I know for a fact if I had been diagnosed in Nigeria, I wouldn’t be here today because they don’t have near the facilities or treatments available as we have in America,” he says.  “Eighty-90% of cancers present in very advanced stages. It’s a terrifying illness that’s seen as a death sentence that no one wants to talk about.” Adebiyi had to speak out.

“I thought, ‘even if I get the transplant,’” he says, “’there was no guarantee I’m going to live. But if I do this drive, there’s a chance it might turn into something permanent and this could save thousands of lives.’ This was an easy decision to make.”

With the support of his mother, who was right by his side, Adebiyi completed his drive in Nigeria, came back and successfully had his stem cell transplant. He’s been in remission for the past 5 years, but his fight is far from over.

Now, Adebiyi is dedicating his career to helping others survive cancer. He joined the American Cancer Society (ACS) on their palliative care team. Their goal was making morphine accessible to patients at teaching hospitals in Kenya, Ethiopia, Uganda, Nigeria, India and the Caribbean. The team was able to bring the cost of morphine distribution down by 85% by simply switching from importing morphine solution to importing morphine powder. 

Today, he is the project manager for ACS’ new Global Scholars program which identifies and trains young leaders from developing countries to lead cancer control advocacy campaigns in their home countries. “We hosted our first class of global scholars at Harvard University and now they’re in the process of developing proposals for their advocacy campaigns,” says Adebiyi. The scholars will each receive grants of up to $10,000 and mentorship from ACS to implement their programs.

Adebiyi’s donor registry in Nigeria—the first accredited registry in the country—continues to save lives, with a German-Nigerian cancer patient being the most recent survivor story.

Yet even in remission, cancer has still marked Adebiyi forever. “I think cancer is as much draining psychologically and emotionally as it is physically,” he says of his decision to work with a team of psychiatrists, psychologists and therapists after his transplant. “Once you’ve had cancer, you’re never going to forget it. It’s taking a long time to get to the point where I can even think about life in more than just daily or weekly increments. It’s been reflected in my lifestyle. I basically just lived out of a suitcase for 4 years.”

Now he’s starting to put down roots, settling into his role at ACS and buying a house in Atlanta. But the lesson that cancer taught him about the impermanence of life sticks with him. During chemotherapy, he recalls being in constant agony and the only thing that got him through was the saying, “This too shall pass.”

“I kept repeating it, ‘this too shall pass,’ until it became a mantra, just living breath to breath. That’s what taught me the difference between pain and suffering. There was nothing I could do about the pain, but if I learned to accept the pain as my experience for that impermanent moment, then I wouldn’t suffer. I could accept that the pain would eventually go away or resolve itself, either with my death or some other way. When you can accept that your experience is just for the moment, then I think anything becomes bearable.”

Though Adebiyi still struggles with anxiety and depression on a regular basis as a result of the trauma of cancer, there are many things that still bring him joy.

“A lot of people who signed up for the drive turned out to be a match and they send me emails saying, ‘Thank you so much for sharing your story. I matched this patient and I donated and now they’re fine.’ Those moments make me really happy…that, and watching SpongeBob [Squarepants],” he laughs.

He also finds joy in training for the Olympics. He still hopes to compete in the Summer 2016 and Winter 2018 Games, but achieving these dreams would just be “icing on the cake,” he says.

“If I make it to the Olympics, great. If I don’t, it doesn’t mean I’m any less of a person,” he says of his efforts to unconditionally love and accept himself and his new life after cancer.

“I’ve been given this incredible second chance. No amount of money could’ve bought this second chance. It was given to me for free. What am I going to do with it? If I can find acceptance and inner peace, if I can be of service to others and have an impact on the world, I think that will be a successful life. Everything else is a bonus.”

 

Find out more about one of Guideposts.org's sponsors:  Cancer Treatment Centers of America

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