An Interview That Never Happened

When I opened Facebook the other week, I was surprised when I found out that Justin Perry had passed away. As a person with advanced lung cancer, I thought I would handle death better, but Justin’s death had a deep impact on me.

I came across Justin only 10 months ago through a Podcast last summer.1 He was 22 years old when he was diagnosed with Stage 4 ALK lung cancer metastatic to the brain and bones. Justin did 7 clinic trials. Most of the trials helped Justin at the beginning but failed eventually. Justin was the first one to participate in many of those clinical trials. Think about it, 7 clinical trials, he was very brave. Justin was very true and honest to himself and to others, this is what left a mark on me. Several things he said might be trivial to others but mean a lot to me.

“I have to tell people, I don’t want to tell people this.”

When the doctor told Justin about his lung cancer diagnosis, this is what came to Justin’s mind, “I have to tell people, I don’t want to tell people this.” This is so true. For anybody who doesn’t like you (for any reason), you don’t want to show them any sign of weakness. For ordinary acquaintances, you don’t want to be the topic of discussion. For friends, you don’t want sympathy from them. Even after 4 years, I still don’t know how to handle telling people even though I am at peace with my lung cancer. I feel it easier to talk to strangers.

Hope...

It came up so many times in podcasts about cancer patients, HOPE. Sometimes, I feel that hope is so close so that I can hold it, but sometimes it is unreachable and I just lose it totally. For patients, having cancer is never easy. Besides we have to tolerate all kind of nausea, fatigue, pain, and depression, we are setting up, inevitably, the depressing tone of caregivers. For caregivers, the fatigue and pain, which are different from us, are no less painful than patients. We, as the patients and caregivers, are exhausted, and in this “cannot move-on and cannot back-up” limbo situation. What motivates us is not reality, but HOPE.1

Justin was amazingly positive – almost walking on the thin edge between optimism and delusion.1 I’m not that optimistic. When I first got lung cancer, it frequently came to my mind, “why do I want to live?”, especially knowing that this is an incurable disease. Is it worth it? I have 3 children. They are definitely a valid reason to live. And now, my youngest son is 20 years old and going to university. It still comes to my mind why we are alive? Isn’t it better if I die, my loved ones have a thorough heart aching crying but then move on with their life? Up to today, nobody has given me a convincing answer. But that doesn’t mean I will stop living.

“You only live once.”

It echoes to me: “You only live once”. Justin traveled to many places, such as New York, Florida...and as a food junkie, Justin ate a lot of “unhealthy” food, but you only live ONCE. I also feel very “relaxed”. I eat whatever pleases me without counting calories, I talk to people who are supposed to be strangers, and I buy first class plane tickets to travel. It’s like I am excused from all the rules, all because I have cancer, I will only live ONCE, I can do whatever I want.

The interview that never happened

For the past several months, it crossed my mind that I wanted to interview Justin for my “Self-Portraits Series of Lung Cancer Patients” articles. But I always convinced myself to wait for when I would be better prepared or for a better opportunity. Now I have missed that chance.

Rest in peace, Justin.

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