Our lifesaver


Written by Liza Talusan, PhD, about Gayun Chan-Smutko MS, CGC
2019 Code Talker Award winner

Liza and Gayun (right)

The Code Talker Award is an annual essay contest for patients, peers, and caregivers to pay tribute to a genetic counselor who has made a lasting impact. Read the 2019 winning essay below.

 

PHOTOGRAPHS BY SIMON SIMARD

 

It is rare that one gets to thank someone who has saved her life. It is even more rare to thank someone who has saved your life, your child’s life, and the lives of two of your sisters — all on separate occasions. My name is Liza Talusan, and I am a previvor of cancer due to my awareness of my BRCA1 status. I am also the mother of a child who was diagnosed with retinoblastoma at the age of 2. I am the sister of two women — one who was diagnosed with advanced stage breast cancer, and one who is a previvor, like me.

 

"I am alive today because of her. My family is thriving today because of her. And, because of her, our future is brighter than we could have ever imagined."

Whenever I run into my genetic counselor, Gayun Chan-Smutko, I thank her for saving my life. After I received my child’s retinoblastoma diagnosis, I hated hospitals. I was angry at doctors, nurses, treatment centers, and I was even angry at myself. I blamed myself for a whole host of things that I thought had brought on my child’s disease.

Maybe I should have eaten more organic foods while pregnant. Maybe I shouldn’t have taken that aerobics class in my third trimester. Maybe I should have slept more, or been nicer. I spent months trying to figure out why my toddler had to suffer. When I set up the appointment to meet with my genetic counselor, I was ready for another angry response. Instead, I was met with compassion, love, and kindness. Though Gayun was delivering difficult news, she gave me one of the greatest gifts — the gift of knowing that it wasn’t my fault, and that my body and my genetics held the ending to my story long before it was written. Gayun helped me to trust medicine, to trust health care, and to trust myself through my child’s treatment.

Because of Gayun’s care in explaining my genetic results, I was able to walk back into her office after my oldest sister was diagnosed with breast cancer. I was able to trust that my consent to run tests, to find out my status as a BRCA patient, to begin an aggressive screening protocol, and then a prophylactic protocol, would mean that I would be okay. Gayun knew that I was worried and anxious, and she built up my confidence and ability to move forward.

Today, I am grateful that I get to work with Gayun as a partner, and not just as a patient. I have spoken to her genetic counseling graduate students, presented at a local conference, and am scheduled to host a pre-conference at NSGC 2019 all because of Gayun’s work.

 

"Though Gayun was delivering difficult news, she gave me one of the greatest gifts — the gift of knowing that it wasn’t my fault, and that my body and my genetics held the ending to my story long before it was written."

 

Gayun has committed to building cultural competency in the field of genetic counseling and, together, we share how that dynamic relationship has truly saved my family. Gayun exemplifies the very best in what a genetic counselor should be. I am alive today because of her. My family is thriving today because of her. And, because of her, our future is brighter than we could have ever imagined.