Home » Lung Cancer » Six years with lung cancer: finding the meaning

Six years with lung cancer: finding the meaning

I was eating a typical breakfast this morning, at our typical time, in the typical place, when I realized today was not typical.  Today is my six-year cancerversary.

Took me a moment to digest that thought.

Considering how shocked I was to hear my diagnosis of advanced lung cancer on May 10, 2011, I’m surprised this day seems typical.  Perhaps I shouldn’t be.  I’ve been living with No Evidence of Disease for 52 months and counting (thanks to a clinical trial, medical research, and other patients), and my scans only happen twice a year.  I might almost ignore the fact that I’m still a cancer patient in active treatment if not for the persistent side effects of previous treatment, daily medication ritual (seven different meds for cancer and side effects), and occasional bouts of pneumonia and coughing.

My time with lung cancer has been eased by the wonderful friends I’ve made along the way in the lung cancer community.  Some of my favorite experiences are watching them discover how to combine their passion for changing lung cancer outcomes with their unique skills and interests to meet a need.  Whatever skills they may value and enjoy, they can use them to find a purpose that gives meaning beyond a lung cancer diagnosis. Maybe it’s making memories with family and friends, creating a blog or piece of art, supporting newly-diagnosed patients and their caregivers in person or online, telling their lung cancer story in public, volunteering for a lung cancer advocacy organization, writing to lawmakers, conducting a fundraiser, or serving as a research patient advocate.  The needs in the lung cancer community are huge, and there are many ways to make a difference.  A caring act need not be global to be great. And the funny thing is, when you’re caring for others, one’s own issues seem smaller and more manageable.

Since my diagnosis, I’ve gone through this discovery process.  I found a way to combine skills I enjoy using (for me, it’s learning and communicating about science) with my passion to improve lung cancer outcomes for myself and others.  I’m making a difference in the world doing something that I love.

My evolution happened in phases, punctuated by seemingly random events that invited me into the next phase:

  1. Cancer Patient (May 2011)– I did what the doctor told me.
    (I moved to the next phase when my cancer became metastatic and I realized no one knew how to cure me. I had to be my own advocate.)
  2. Engaged Patient (October 2011)– I learned about my disease from online forums and other patients, actively discussed treatment options with my medical team, and shared my experience with other patients.
    (I moved to the next phase as I realized that sharing my lung cancer experiences was useful to others, and that perhaps I could do more.)
  3. Patient Advocate (April 2012)– I shared my story and patient perspective in increasingly more public venues, and began to work with advocacy groups.
    (I moved to the next phase as I realized I had accumulated more knowledge about treating lung cancer than some doctors I encountered.)
  4. Expert Patient (June 2013?)– I read new lung cancer research, discussed it with knowledgeable medical experts, and shared what I’d learned with other patients and carers.
    (I moved to the next phase as I discovered opportunities for sharing my story, knowledge and skills with healthcare, legislative, and policy making professionals through conferences, advocacy organizations, and online portals.)
  5. Patient Activist (October 2013)– I began actively pushing for changes in funding, public policy, and the healthcare system regarding lung cancer.
    (I moved to the next phase as I made contacts within the broader lung cancer community and saw opportunities for collaborations.)
  6. Research Partner and Activist (September 2015)–I now work with patients, caregivers, clinicians, researchers, pharma, advocacy groups and policy makers to improve lung cancer outcomes, and help other patients and caregivers in their explorations of advocacy.

As I’ve evolved, I’ve found purpose.  This purpose gives me focus, and helps me think myself as something more than just a lung cancer patient.  I get up most days knowing I have something useful to do, no matter how I feel physically.

I would not say cancer gifted me with this purpose.  The challenges of cancer only forced me to reassess what matters most by confronting me with a foreshortened lifespan and loss of abilities.  We all must deal with some level of adversity in life.  It’s how we handle that adversity that defines us.  I truly believe the Native American proverb:  “The soul would have no rainbow if the eyes had no tears.”

I’m not just surviving with cancer, I’m living.  I’m fulfilling a purpose, for as long as I can, however long I may have.

Here’s to finding the meaning.

19 thoughts on “Six years with lung cancer: finding the meaning

  1. You have handled that diagnosis from 6 years ago in the most amazing, exemplary way, Janet. You are a true survivor, providing inspiration, hope and knowledge wherever you go.

    Liked by 1 person

  2. Janet, Congratulations on your 6 year cancerversary and living life to the fullest of your abillities. You are a force to be reckoned with!!! Thank you for your untiring efforts to benefit us all. I follow your emails, but have not replies previously, but you have been an inspiration to me for several years. Here’s a toast to you being an overcomer “clink”. This month will be my 7 year cancerversary and it certainly has not always been easy, but I am still living this life and not done yet! Best hopes for us all.

    Liked by 1 person

  3. Janet,
    Thank you for everything you do for us, and thank you for your description of your evolution into an activist. We could use so many more like you. May you be NED forever!

    Liked by 1 person

  4. “I might almost ignore the fact that I’m still a cancer patient in active treatment if not for the persistent side effects of previous treatment, daily medication ritual (seven different meds for cancer and side effects), and occasional bouts of pneumonia and coughing.”

    I’m curious about your medication ritutals and side effects. Can you expand?

    Also, if you’re NED, what are you being treated for?

    Liked by 1 person

    • I didn’t go into detail about my treatment in this post because that’s explained elsewhere on my site. I’m NED thanks to an oral cancer drug (a targeted therapy called crizotinib) that inhibits my type of cancer (ROS1 positive NSCLC). I’ve been on crizotinib since November 2012; it does not cure, and most all patients who take it eventually experience cancer progression. I take medications that help me cope with the side effects of crizotinib, a blood thinner (I developed a blood clot in my pulmonary artery a couple of years ago–blood clots are common in cancer patients), and a drug for gastric reflux (my esophagus was damaged by radiation during my first line treatment).

      Liked by 2 people

  5. Thanks, Janet, for the information. I’m always curious about medications other LC patients use to control side effects. I had radiation, so I’ve got some evolving fibrosis from that, which results in a chronic (and annoying) cough. I take nebulizing treatments as needed plus a cough medicine.

    Happy Cancerversary!


  6. This post, and especially the last two sentences, exemplify the message I feel is most important for lung cancer patients (and caregivers, too). It’s a critical part of changing the narrative on this disease. Thank you!


  7. You gave me hope and encouragement. Thank you for all that you do. Wishing you more NED years
    I was diagnosed stage 4 NSCL, Feb 15 , never smoked in my life
    I’ve been taking Crizotinib for 3 months now. Praying it will continue to work and that my cat scan this Friday 6/16 will show good results


  8. I was diagnosed a little over 12 months ago with stage 4 ALK positive lung cancer. As typical for ALK I was a non smoker and no other obvious causes like radon etc. I read your achievements and all I can say is WOW!! I feel I’m up to about stage 2-3 on your achievement scale. I hope I can achieve half as much as you have.


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