StoryCorps at SHC: Vivek Chotai & Maia Evrigenis

Vivek Chotai (VC): Maia, do you remember that day that you were diagnosed?

Maia Evrigenis (ME): So, I was diagnosed when I was in seventh grade, I was 13 years old. And I didn't know that leukemia was cancer. I just hadn't been exposed to that specific word leukemia before, so I didn't even really get what was going on that day until a couple of hours later when somebody came in and they were like, "All right. You're going to lose your hair, the chemo is really intense." And I was like, "Oh, I'm one of those people." That's what happened. What about you? Do you remember your specific day?

VC: Yeah, I definitely remember that day. I went to the wrong ER. I was 17 when I was diagnosed, so we weren't sure whether to go to the pediatric side or the adult side. We ended up on the adult side and I had to wait six hours. The nurses kept checking in, and I showed them my blood test results and the nurses looked at me and her eyes were just so wide open after she read the results. At that time, I just started laughing. I was like, "Oh man, it was that bad?"

ME: Oh my gosh. It's really interesting. I feel like I acquired this vocabulary and this knowledge from being a adolescent cancer patient. Recently I had to get blood work done and it's crazy how I can read the blood work so well.

VC: Yeah, you had to learn to interpret your test results because your life depended on it. Right? And I feel like especially since it happens during your childhood, you're forced to kind of grow up fast.

ME: Yeah. It's really, really complicated because you're forced to grow up while at the same time you're sort of being taken care of as if you were a baby. To have a nurse come in and have you go poop in a plastic thing and they test it, I was so embarrassed. I think I felt that a lot, especially at the beginning, but now when I look back, I'm like, "There's nothing embarrassing about this."

VC: Yeah, I totally agree. Before my diagnosis, I was the captain of my wrestling team, so I was really athletic. Going from that to now, not having the strength in my core anymore to even sit up, I thought it was embarrassing. But then I talked to my nurses, I'm like, "I'm sorry you guys have to do this for me. I can't do it myself." And they're like, "Nobody expects you to be able to do it by yourself, and you shouldn't have to do it by yourself. People are there to help you."

ME: Right. I think that this topic of embarrassment, it's so interesting too because there's the cancer way of how you're supposed to act and behave and talk about this topic, and it was very challenging for me to share with people. So, what advice can you give someone who's having trouble sharing that?

VC: You kind of have to decide who you want to tell and who you want them to know. You can't control the other person's reaction. And it's kind of a blessing in disguise because you find out who your real friends are. Be straightforward about it, so tell them, "Hey, I had leukemia." But then the most important part is to tell them that you're okay now. So, I'd be like, "Hey, Maia, I had leukemia, but it's okay because I'm in remission now." Or if you're a patient in the hospital, "I have leukemia right now, but it's okay because I'm getting treatment and I'm fighting through it. But there are days where I have to stay in the hospital." And then if there's anything you need help with, you should tell them and ask them. And if they ghost you or if they judge you, then it's probably best that you don't keep them in your life. You want to surround yourself with people who believe in you.

ME: I think sometimes this AYA experience feels really unique, but we all have pain and we all have struggles, and we have to invite people and share community.

VC: Take it one day at a time, and don't let cancer define you, you get to define cancer.

ME: Amen.

Produced by Stanford Health Care with interviews recorded in collaboration with StoryCorps, a national nonprofit whose mission is to preserve and share humanity's stories in order to build connections between people and create a more just and compassionate world www.storycorps.org

Sound Editor: Emily Hsiao

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