I was diagnosed with non-small cell lung cancer in April 2005. I was only 45 years old, I had never smoked, and I thought lung cancer wasn’t something I would ever have to worry about. Now I know that upward of 15 percent of lung cancer patients are never smokers.

Three years after my initial diagnosis, doctors discovered I had the ALK mutation. I had no idea what that meant or that I would even still be talking about it in 2014. In fact, I was seeing a psychologist to prepare for my death.

Linnea and her son Peter

One day, I went to see my oncologist to talk about a scan. At that appointment, he told me about a clinical trial for ALK positive lung cancer patients. I was the fourth person in the world to join. That trial quickly led to the approval of a drug called crizotinib, or Xalkori – which has since kept many people alive for much longer than anyone could have expected. Today, newer drugs recently approved or expected to be approved soon for ALK patients are leading to even better outcomes.

I wish more patients would participate in clinical trials – and not because it’s for the greater good of lung cancer research. Without a doubt, clinical trials have extended my life, but just as importantly, they have empowered me as a patient. It’s right there in the description: You participate. Your feedback is essential to the process. That fact alone has made me much more involved in my treatment.

As time has gone on, my familiarity with lung cancer and my own mortality has made it all less frightening to me. Consider it: If you are in a room and you think something is in the closet but you never open that door up, you’re going to stay afraid. If you open it and look, now you know what you are or are not dealing with, and its power to surprise you has diminished.

I research my disease quite a bit. To me, it’s the difference between being a passenger or the driver in a car. If you’re the driver, you determine where you’re going. This is my life and my body. Nobody cares as much about me as much as I do.

I love my medical team. In fact, I consider my oncologist my personal hero. But once in a while I’m required to do something because it makes sense for the trial sponsor, but not so much for me and I push back. I wouldn’t have the know-how or the confidence to speak up for myself without the empowerment that comes from me sitting in the driver’s seat. 

Lung cancer is a very difficult disease – not just because it has a high mortality rate and is hard to treat. It’s also misunderstood in a lot of ways and comes with a lot of stigma attached to it. Invariably if somebody hears I have lung cancer, they will ask me if I smoked, which is, if you think about it, kind of an awkward question. It seems to imply that perhaps I did something to deserve my disease. 

I also think the stigma impacts people’s generosity as far as charitable donations go. Lung cancer kills more people than any other cancer and yet it remains incredibly underfunded. Recognizing Lung Cancer Awareness Month in November is super important for this reason.