Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangiocarcinoma took us by storm. Being the firstborn, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease, get a second opinion, balance life, work, and treatments...and the dreaded...how/when to tell family and loved ones. “What could we do?,” my brother, Russell, and I asked. Her answer, as always, to the point with a goal, “Conquer and divide. You call these people, I’ll call the others.” “Can I come up?” I asked (she lives two hours away). “Why?” Knowing I had to have a valid reason, I answered, “I don’t know...your plants need to be watered and there are cobwebs on the patio that need to be swept down.” She sighs, and states, “Russell wants to come up, too...to install a bidet.” You need to understand Roz...it’s not that she didn’t want us to come, but in her mind, there needed to be a reason, plus she probably didn’t want to answer a bunch of our questions. Valid. But, she conceded to have both of us come up at the same time knowing that (1) it’s more efficient and (2) it’s what our ohana...our family...needed to do.
Before her first chemo began, Roz went shopping and found a green shirt with the word “zenergy” on it. And get this...our last name is Zen! It represented us and cholangiocarcinoma perfectly! She wore it to her first chemo treatment and continues to do so to this day. Coupled with zenergy, the word aloha means love. Our parents, born and raised on Oahu, taught us the deep meaning of being rooted in aloha. Wanting to encourage her, I came up with an idea to create a shirt that represented our roots, “zenergy,” and awareness for cholangio...and I wanted it to be a surprise at the next gathering: Christmas. Working with a graphic artist, the logo came to life, and the wheels were in motion. I shared the vision with family, relatives, and Roz’s friends asking if they wanted to jump in...and so many did! Shirts were ordered and shipped all over the US for “the big reveal!”
It was Christmas night, and all the ohana wore the shirt under their regular attire. I asked Roz to sit in the center of us and shared words that I truly don’t remember, but ended with “we love you and are with you!” And everyone revealed their shirt! It took a moment for her to realize what was going on, but it soon sank in. Soon, pictures from other parts of California, Hawaii, Arkansas, South Carolina, and other locations started to roll in...with everyone wearing their shirt. It was a great time of joy as we were all one ohana rooted in aloha. We continue to wear these shirts all the time, but especially during times such as the CCF conference and on “Rare Cancer Days” with the goal to raise more awareness while fighting this dreaded disease with our sister, Roz.
As I write this, she is currently in a room at UCSF, as part of a trial. Her independence, bravery, and advocacy is nothing short of amazing...I’m talking Wonder Woman status. Her desire is to fight cholangiocarcinoma with everything she has, and perhaps by participating in this trial, her experiences and research data will help those that come after her.
She has a resiliency that reflects a superhero approach.