Patient and lung cancer advocate Kirk Smith from Athens GA talks to us about living (and thriving) with stage 4 lung cancer. Read on for an interview packed full of positive messages and advice from a long-term survivor.

Taken last month at the 12th Annual Free to Breathe 5K in Athens, GA. The event raised $88,000+ towards lung cancer research.

Can you share a little about your journey with lung cancer?

My late grandfather used to tell me (somewhat jokingly) "Don't go around telling people about your problems. 50% of the people don't want to hear about them. And the other 50% are glad you have them."

So, with that intro:

On December of 2013, I went out for what was supposed to be an easy 3-mile run from my office. I didn’t make it a mile before a sharp pain in the left side of my chest and very shallow breathing stopped me and forced me to walk back. I then drove myself to the ER and was held overnight for a series of scans. A week later, December 26th (the day after Christmas), my wife and I met with my pulmonologist to get the results from my bronchoscopy. He had seen some unusual masses in my chest on one of the scans, so he wanted to get some tissue samples. At 3:00 that afternoon, we learned that I had lung cancer. I was 51, with no history of smoking or being around smoke, and I was a very healthy amateur runner / triathlete / cyclist – racing distances all the way up to marathon and Ironman.

Over the next few weeks, I would learn that I had Stage 3B lung cancer and that I was ALK-positive. I started out on Xalkori (Crizotinib) and the tumors almost immediately began to shrink. I even raced the Swamp Rabbit Half Marathon in Greenville, SC less than two months after beginning treatment. But my liver enzymes would periodically go up to dangerous levels. In late April of 2014, Zykadia (Ceritinib) was FDA-approved and I started on it two weeks later. I stayed on it for almost 3 years. However, after the third time of having brain mets (this time, 10 scattered lesions), we switched to Alectinib, which I have been taking for over 2 years now.

I just celebrated my 6th year since diagnosis on December 26th.

What is something you know now that you wish you knew when you were first diagnosed? What would you advise a newly-diagnosed patient?

Basically everything! We knew nothing about what we were dealing with. Our level of ignorance was at a maximum. Looking back, I wish I knew at the time about the effectiveness of targeted drugs – but it was all so new.

We have approached this disease very pragmatically – leading with a lot of optimism, though never with our heads in the sand. Of course this incredible ALK Positive group did not exist at that time. And I’ve been amazed at what a terrific information, friendship, fundraising and advocacy group it has become. I talk about this group to anyone I know who has been recently diagnosed.

With that being said, here are some tips I’d share with everyone newly diagnosed:

Advocate for yourself as much as you can. Educate yourself. Stay informed. Push back if you need to. Appeal if insurance denies you. Stay active on the ALK Positive Facebook page – reading questions and the responses, reading about studies, learning about side effects of the medications and treatments. Have a note taker at your appointments. Pay attention. Push your team.
Attitude Matters! “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” Viktor Frankl
Get a Doctor you believe in – and who believes in you. Become a real person to your doctor. Our oncologist, Cynthia Shepherd, is terrific. We are fortunate to have her on our team. We love her and trust her, but she also trusts us and consults us fully on all aspects of my treatment. She is also smart and confident enough to know when to reach out to ALK experts. Treating this disease takes a team – make sure your team wants you to live as much as you do.
No Anger. Anger is wasted energy that you need to reserve for your body’s fight.
Get an Accountability Partner. My cancer center (UCBC in Athens) recommended that I get an ‘accountability partner” – someone other than my wife that we could trust to be honest about my condition. They knew it would be difficult for my wife to be objective if my condition was worsening. I chose one of my good friends who also trains me in the gym and is one of my running, racing and cycling friends. He is in a great position to recognize if my health and strength are suffering – and if so, we either take a step back, or look at why that might be happening. We found his objectivity to provide us a great perspective.

You have lived and thrived with lung cancer for many years now. Are there any things that you do (e.g. nutrition, exercise, meditation etc.) that you believe have contributed to your longevity or overall wellness?

I’ll clarify here that Xalkori, Zykadia and Alectinib are THE reasons I am still alive. The information below is what has helped me thrive during these past 6 years.

In my endurance racing experience, I had these key bullet points within my training program that I have also found apply to living with this disease:

Figure out "why" I want to do what I want to do - and then create the environment to execute the "how". I want to live! That's a pretty big motivator! So how do I give myself the best chance of achieving that goal? By patiently moving forward every day. That ability has come over time and is constantly being modified and refined depending on how the disease reacts to the meds and how my body reacts to both the cancer and the medication. And when we have a setback - and we have them often – adjust, learn and start moving forward again.
Do something every day that moves me toward that goal. Take my meds. Learn more about what I am facing and what's out there to combat it. Exercise. Eat healthy. Enjoy my work and my friends. Feed off the good energy of others but, more importantly, bring my own good energy wherever I go. In other words: LIVE!
Ensure that nutrition is optimized. Eat as clean as possible. Give my body the fuel to get stronger. This is not a diet or a fad. This must be an approach to nutrition that allows me to perform at a high level each day. Every day. For as long as I can.
Create the capacity to perform more work. In long-distance racing, this translates to building the ability to handle more and more mileage without destroying yourself. It takes years of patience, and a lot of it. Since my diagnosis, it's been really about building a foundation to be physically stronger and more mentally sharp and pushing back on the damaging effects of cancer. But mostly, it's for my quality of life, my sanity and my enjoyment.
The emotional maturity to stay the course and deliver results. I don't think anyone has ever accused me of emotional maturity. Far from it. BUT, I do have the persistence to “stay the course." I think that persistence is basically the only reason I was ever able to be competitive as an endurance athlete. I realized very early when dealing with this disease that there are no days off. But I’m ok with that. Hopefully my ability to persevere will also serve me well in living with cancer.

How do you tackle living with lung cancer and staying positive on a day-to-day basis? Any tips for focusing on life and reducing anxiety about the unknown?

This could probably be a very long answer, but here are two things that have helped me:

Taken one month after my diagnosis by our wonderful friend and professional photographer, Cassie Wright. This photo pretty much encapsulates the relationship that Jayne and I have had for 32 years.

Service above self. The all-consuming, “fight-for-your-life” nature of this disease could have made me a very selfish man. And I don’t want that to be me or the legacy I leave. Last year, the title of one of my posts was “Don’t Waste Your Cancer.” It was a reminder to myself to do more for others. To reach out. To connect. Show kindness. Listen and care. But also lead if there are opportunities for me and Jayne to do so. Merita Carroll made it happen by creating this ALK Positive group. Linnea Olsen’s powerful blogging has changed the lives of so many of us that read her work. The late Anita Figueras, who I had the privilege to meet a year ago, was one of the people creating the EGFRresisters group. The writing of Paul Kalanithi still gives me strength. There are so many of you reading this that inspire me every single day with your advocacy and energy and care for others. So, among other things, I serve on the Board of the Cancer Foundation here in Athens – helping people that are struggling financially during their treatment. And for the last 5 years, I’ve helped organize the Athens Free To Breathe 5K, which has raised almost one million dollars for lung cancer research. Having a purpose and impacting our community where we can is very important to both me and Jayne
Have a Mantra. Lance Armstrong has “LiveStrong.” My friend Jim Brown has “HoldFast”. For me, it’s “LIVE!”

Everyone has to find their approach. And I needed my own message. I was not and am not angry. Yes, I am fighting lung cancer every day. But, more importantly, I am LIVING every day. That’s when “LIVE” became my mantra.

And we began printing it on t-shirts with this phrase on the back:

Start Where You Are.

Use What You Have.

Do what you can.

I’ve found it to be quite relevant in our lives:

Start where you are. We really have no other choice. I have cancer. That’s the reality but it does not define me. Crying about it or second-guessing does no good. Analyzing survival rates does me no good.
Use what you have. So let’s get on with it. Arm ourselves with as much knowledge and positivity as we can. Do the best that I can to stay healthy, make intelligent nutrition and health choices to help ward off both the cancer and the side effects of the meds.
Do what you can. We keep learning and trying to do better. But I have to add that all of you in this ALK Positive group are a big part of this. One of my "goals" at the beginning of each new year is to "surround myself with positive people." People that lift me up when I am around them. And if you are reading this, then you fall into that category.

Thank you for letting me share (my grandfather would be proud).

Patient Spotlight: Kirk Smith, Athens GA