Lung Cancer: A Personal Story of Survival and Empowerment

Empowerment upon being diagnosed with a seemingly incurable form of lung cancer isn't always what happens...read Jessica's inspiring story.

Jessica Steinberg 2

There’s never a good time to find out you have cancer.    I got “the call” the same week I filed papers for a much-needed divorce.  I remember absolutely shrieking into the phone, “ARE YOU KIDDING ME?  DO YOU KNOW WHAT I AM DEALING WITH RIGHT NOW?”   And seriously—LUNG cancer?!?  How was that possible?  I was 39. I’d never smoked. I was athletic, and overall I was very healthy.  

My two sons were in kindergarten and third grade; I was a newly-single mom and panicking.  I started googling survival rates and found out I had a 3-5 per cent chance of a five-year survival.  WHAT?!?  I was not going to be able to raise my boys?!?   The momma-bear in me started to ROAR. Right then, I knew I was going to take cancer on and I was ready to fight for my boy cubs.   

At diagnosis, it was thought that I had a localized tumour.  I would have surgery and that would likely be it.  I woke up in intensive care to learn that was not the case and the cancer was more extensive than they had realized.  I quickly started infusion chemotherapy and concurrent chest radiation—standard protocol for the past couple decades.  Despite the treatment, I quickly progressed to the diagnosis of “stage IV advanced metastatic disease” (meaning the cancer had spread beyond my lungs).  There were several times when my oncologist suggested ‘putting my affairs’ in order, and each time I chose not to listen.  I was NOT giving up.  I set a goal of getting my boys through high school.

During the time of my active fight, something astounding was happening in the field of lung cancer research and treatment.  Specific gene mutations were identified that were responsible for driving the growth of lung cancer.  My own breakthrough moment came when it was discovered that I had the ALK-positive mutation.   Targeted therapy?!?  It felt like a miracle! I was ME again, a mom again, I was not just alive, I could LIVE.  The cancerous lung lesions that were always noted as “innumerable—too many to count” were GONE. The bone metastases? GONE. The brain metastases? Just a shadow indicating dead cancer cells. Those almost 18 months were blissful times. I was loving my boys, and working again. We took some great vacations, and I began getting involved in cancer advocacy. And, then, a strange headache that just wouldn’t go away. I made excuses for a while, and then requested a brain MRI. I met with my oncologist after… my fears were true. The cancer was back.

What to do? I was informed the only potential treatment would likely involve some cognitive impairment.  That clearly that didn’t fit my parenting goals and this momma-bear got fierce.  I enrolled in a clinical trial for an ALK-positive targeted therapy that could cross the blood brain barrier.  The drug is now approved in the US and Canada—and get this—I am coming up on three years of scans showing no measurable disease.  Amazing!  I don’t worry anymore about dying soon.  I can be a realist; I know the cancer will likely figure out a way to beat my current treatment.  I also know, though, the research and treatment development is happening so fast that when I need it, it will be there.

Jessica Steinberg 3

People think I’m crazy when I say that it’s okay that I have cancer.  And it’s true—although, it’s because I’m living.  While it’s given me some of the worst moments of my life, it’s also given me some of the best.

Cancer gave me the opportunity to teach my boys about facing challenges.  I became extremely aware that they were only going to experience cancer through me.  THIS was my chance to show them what dedication, perseverance, and hope looked like.  THIS was my chance to show them how to face adversity.  THIS was my time to walk my talk of “it’s not what happens to you, it’s what you do with it”—a phrase I’d used for most of my adult life.  I made one single rule for my new little family of three:  find some joy and humour in every single day.  We had a lot of movie nights on the couch and more than occasional pyjama trips for ice cream, but we did it.  

Cancer taught me about the power of hope.  I had and have an immutable belief that a positive outcome is ahead.  Maybe that’s not a magic cure…but it has sure made the ride better.  And to be clear—hope is not denial, it’s educated optimism.  There has never been a time in the world of lung cancer where having hope is so warranted.  Treatments have changed so much in just the time since I’ve been diagnosed!

Cancer taught me about the power and love and just overall awesomeness of my family, my friends, and my community.  They brought food, food and more food.  They folded laundry and cleaned my house.  When I was in the hospital after surgery, or had long treatment days, or was so sick that sleep was the only option, the boys had someone loving and entertaining them.  These people were and are a continued blessing in our lives.

Cancer taught me to be my own best advocate, in my treatment and health care and, really, in my life.  I learned how to say “YES” to experiences or relationships that bring joy and happiness to my life, and “NO” to situations or relationships that just bring toxicity.  Learning to be a self-advocate allowed me to work in partnership with my doctors and care team, connect and participate in my cancer community, become a board member of Caring Ambassadors, and advocate in the medical and political arenas.  

Getting lung cancer actually became a call, of sorts, for me… a call to spread education and awareness about lung cancer and combat the stigma that has been perpetuated by lack of knowledge.  In the end, it’s as simple as this:  if you have lungs you can get lung cancer.  

I was given the call to be bold and promote patient empowerment, and a call like this, to share MY story in the hopes that I put a new face on lung cancer, and that YOU find something to take away from my story to inspire YOU to find hope and overcome challenges in your life.  I wish you the best of luck on your journey.

Jessica Steinberg 1

 

Born in Montreal, lung cancer survivor Jessica Steinberg has embraced the role of patient advocate and public speaker, and is a board member of Caring Ambassadors, an organization promoting lung cancer awareness and education. Now living in Oregon, she is raising her two boys on her own, and is confident she will someday meet her grandchildren.  She works to inspire and empower other lung cancer survivors around the world.  November is Lung Cancer Awareness Month.  You can reach Jessica through the Caring Ambassadors website at http://lungcancercap.org.
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