Volunteer Story: Olivia (stage-4 non-Hodgkin’s lymphoma)

Olivia Bae Wein was diagnosed with stage-4 non-Hodgkin’s lymphoma when she was just 15 years old. It was a rare diagnosis for a teenager, and she was treated in an adult ward. Now almost 50, she returned to the NIH, where Harrison Wein, her husband of 25 years now works, to reflect on how facing her mortality at a young age has affected her life since.

Transcript

Olivia Wein: Maybe the stereotype of a teen is this sort of invincibility and you will live forever, but that was not my teenage experience. Mine was a very vulnerable one and a very profound realization of the fragility of life. That in a moment it could be gone. And I was very angry about how unfair it was that I had to deal with this and that I might not live to go to college, get married, have kids, have a career or two, become a grandparent – just make it all the way to the end of that normal story arc.

I don’t think that the odds were in my favor, but I was young and I got lucky. They had a clinical trial for what it was that I had. I think what I had was probably unusual for a 15-year-old and in fact, when I was treated at the NIH, I was on a floor with adults. I was clearly the baby all the way through that process.

Harrison Wein: You’re an extreme case, right? You came to clinical trial and it cured you and you went on to live your life.

Olivia Wein: In another time and another place, I wouldn’t be here talking to you. We wouldn’t have met in college. We wouldn’t have the children we have. It took more of a focused effort to plan for a future: the what if? What if I get better? What if I get past this? I do appreciate that. And it’s a grounding. I know that there is strength in me to get through things, to get through hard times, because I have and I know that I can do it. Not that anyone wants to do it, but it’s a good thing to know about yourself.

Harrison Wein: I’ve always kind of felt like you live every day like it could be your last. I don’t know that I ever met anyone like that before.

Olivia Wein: Well I think it’s important because it’s a shame to have regrets. Every day is a gift. The fact that life is so full of blessings, and I’m very grateful. NIH and this experience has given me these other chapters, so far, of my life.