Stacey

The Call She Turned Down: Stacey's Story

Back pain wasn't new. Stacey had lived with it since her teenage years. But in 2017, something about it felt different, different enough that she went to her primary care doctor to have it looked at.

He ordered labs. Her liver enzymes came back elevated. He ordered imaging, and the imaging revealed innumerable masses across her liver. A biopsy gave the finding a name she had never heard before: epithelioid hemangioendothelioma.

She remembers the phone call. She remembers collapsing to the ground and crying. She had just celebrated her 29th birthday and her first wedding anniversary. "I thought I was too young to have cancer."

What followed were two years she describes as a whirlwind: searching for specialists and doctors who had even heard of EHE, appointments, labs, imaging, her own research, unsolicited advice, questions, tears. Eventually she was enrolled in a clinical trial and, at the same time, listed for a liver transplant through UNOS.

One night, before her trial was set to begin, she got another call. There was a liver available.

She declined within seconds. She was certain the trial drug was going to work and that she would not need a transplant. Looking back, she takes some comfort in where that liver went instead, and in the possibility that it extended someone else's life.

The trial did not go the way she expected. Every side effect she had been told carried a small chance of happening happened to her.

Her sister, meanwhile, had been quietly going through evaluation as a living donor. She turned out to be a perfect match. They had their surgery in June of 2019.

"I would not be here today if it were not for her."

Through it all, Stacey was never alone. Her family came to every appointment. Everyone was rooting for her. What carried her through the hardest stretches, she says, was making plans for the future: "There was never a doubt in my mind that I wouldn't be there to watch my son grow up."

Staying in a positive mindset, as she puts it, doesn't mean you won't be sad, angry, and overwhelmed. It means not letting those moments take away the life you're still living. Find humor where you can. Keep living your life.

"Cancer may have a chapter in your book, but it's not your entire story."