The Memory of My Lung Cancer Friends, Part 1
Last updated: April 2023
One day as I was getting ready for Lung Cancer Awareness Month in October, I read something along the lines of "mourning about passing of lung cancer friends and feeling gratitude for being alive." For some reason, mourning my passed lung cancer friends opens a floodgate. I can't help having many friends with lung cancer who have passed who are always in my mind, and today, I want to share my experience with three ladies whose lives were taken by lung cancer too early.
I met Gina in the summer of 2019 in Barcelona, Spain, where we both attended IASLC/WCLC 2019 (International Association for the Studies of Lung Cancer/World Conference on Lung Cancer 2019). We had exchanges through Facebook, but we have never been formally introduced.
Meeting for the first time
One morning, my husband and I came downstairs for the breakfast buffet at the hotel. I saw her but hesitated to say hello. I guessed she might have felt the same. Finally, I went forward and sheepishly asked, "Are you Gina?" The rest was history. Gina asked if she could join us for breakfast, and we started to talk.
She's an inspiration
I've interacted with Gina more often since then. I started my advocacy journey in 2018 and had more questions than answers. As the president of the patient support group "ALK-Positive," she shared many of her experiences in operating the organization and running conferences. Being one of Biomarker Collaborative's co-founders, she worked tirelessly for it, even at the last moment of her life.
Gina was like a beam of sunshine. She always smiled as if she had good news to share with you. People wanted to be around her to work together for a common goal. Her natural leadership was remarkable. She chaired ALK-Positive Sunday night research talks for several years, where her optimism glowed, and she even made the Sunday evening "a happy hour." That's an unusual talent!
Gina impressed me because she still talked about joining a clinical trial to find a new treatment before she passed. In one of her last posts, she said she was not afraid of what would come up. I truly believed her in that moment, especially because she posted pictures of her last days. Very few patients would share their photos in their final moments. I silently stared at her emaciated but smiling face and read her encouraging texts.
We, the Chinese, say that 谁笑到最后，谁笑得最好 meaning "Whoever laughs till the last, laughs the best." Gina smiled all her way out. I prayed for her 一路走好, meaning "farewell, until we meet again".
I got to know Linnea through Facebook, not surprisingly, in 2018. Who didn't know Linnea if you were in the lung cancer Facebook group back then? After reading only several of her blogs, I noticed Linnea was unusual.
Her honesty was a breath of fresh air
She was so honest that only some were comfortable with her, and her language was quite colorful. If Linnea thought it was the right thing, although it seemed impossible at the time, she would say it - and do it. Several things she said have come true. Her honesty attracted me, and I paid particular attention to her blogs. She was the type of person we, the Chinese, say that 哭就哭出眼泪，笑就笑出性格 meaning "When crying, cry out the tears. When laughing, laugh out personality".
Linnea participated in five clinical trials, most of which were Phase One, which really impressed me. She very honestly wrote down her experiences while she was in the trials - good, bad, or ugly. It was so valuable because I wanted to know the truth of clinical trials from the patient experience.
Connecting about the deep stuff
I finally met Linnea in 2019. We saw each other twice in person. The first was in spring in Washington DC, where we both attended ILCSC2019 (International Lung Cancer Survivorship Conference 2019), and the other was in summer at IASLC/WCLC 2019 in Barcelona. Linnea gave a keynote speech at ILCSC2019 about dating and sex for lung cancer patients. This was a taboo or, at least, an avoided topic, but Linnea was having fun. She was so honest with her stories that she shared with patients. After her talks, I notice that lung cancer patients are now talking about sex more often, and some researchers are working specifically on it.
I worked with Linnea more often in 2020. I invited her to Zoom Meetings to talk about the clinical trials, being a writer and dating and sex experience. I also invited three other ladies later on to talk about their experiences with sex and dating. Before the calls, we would all open up and speak freely about sex, which was a great time!
Linnea seemed to laugh loud and carefree, which always made me remember the lyrics; Don’t Worry, Be Happy.
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?