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.

In Remembrance of What Matters Most

hawaii-rainbow

Today, people in the world may be shocked, sad, or grieving in response to events recent or remembered, people lost, and sacrifices made.

Having a terminal illness altered my perspective about what constitutes a disaster, and what matters most.

Stuff happens. We don’t control the universe. We don’t control how many days we have. We might not control where we live, who we live with, or whether others treat us well.

What we do control is how we choose to spend whatever time is given us.

Each day, I have another chance to feel (shock, sorrow, hope, compassion, whatever). Another chance to show love to family and friends. Another chance to use my body and mind as best I can. Another chance to laugh. Another chance to dream.

Another chance to use my unique set of skills, interests and resources to make a difference in the world.

Tomorrow is another day. How will you spend it?

Four years on a cancer clinical trial, and still NED–yay for research and hope!

Four years ago today, I took my first dose of crizotinib in a clinical trial for patients who had ROS1-positive lung cancer. My first scan–and every scan thereafter, including this past Monday 10/31– has shown no evidence of disease (NED). Not bad for a metastatic lung cancer patient who previously progressed on two separate lines of combined chemo and radiation.

I’m very grateful for cancer research and the availability of clinical trials. We’ve had more new drugs approved in the past five years than in the previous five decades!

During November, which is Lung Cancer Awareness Month (#LCAM on Twitter), please consider donating to your favorite lung cancer research facility (one option is the Lung Cancer Colorado Fund at the University of Colorado) or a lung cancer advocacy organization that supports research. 

And for a bit of hope, check out the NEW LCAM website, which represents a partnership among 19 lung cancer advocacy organizations led by the International Association for the Study of Lung Cancer (IASLC).

 
lcam-multi-color-logo

HOPE LIVES! More research. More survivors.

A Natural Remedy for Cancer Scanxiety (Almost)

When basking in the wonders of volcanoes, rainforests, and oceans, I can focus on something other than cancer for a while.

When heading to a cancer center for brain and body scans, not so much.

Still, facing the possibility of progression is easier when I’ve been immersed in nature for a few days.  I suspect most cancer patients might benefit from a “nature break” to combat scanxiety before a scan.

Care Partner on Deck

gerry-on-deck

Today hubby Gerry (my care partner) and I had a good start to our morning: we discussed how cancer affects relationships, then reviewed some time-critical household management chores over breakfast. Afterwards, he went out to paint the deck, and I prepared for some medical appointments and errands. Before I left, I poked my nose out the deck door to let him know I was leaving (carefully keeping both cats inside), then closed the door and departed.

After Gerry was through painting the deck, he was greatly surprised to discover his chemo-brained wife had locked the deck door from the inside (as was her routine) while he was outside (which was not routine).

He was alone on a freshly-painted deck at 11 am, ten to fifteen feet off the ground, knowing that I wouldn’t be home for another seven hours.  He tried to get the attention of some workmen two yards away so they could call me, but they couldn’t hear him over their lawnmower.

Ten minutes of staring at the earth motivated his engineering brain to develop a plan that (he hoped) wouldn’t contribute to our medical bills.  I cringed to hear the route my 77-year-old spouse chose to climb down to safety.  I won’t bore you with all the details, but he successfully dealt with the challenge so he could care for me another day.  This evening as the sun was setting, he graciously re-enacted the moment so I could take a picture.

I’m glad this didn’t result in a care partner role reversal.

Happy 50th Anniversary, Star Trek!

Yesterday (September 7, 2016) marked the 50th Anniversary of Star Trek’s first airing. I can’t count the ways in which this show has influenced me.  The biggest conscious influences:

  • encouraged me to pursue a career in science and engineering
  • motivated me to write my own stories
  • helped me to accept that being analytical, making mistakes and expressing emotions are all OK
  • showed people using logic and science to solve difficult problems (yeah, OK, and sometimes emotional convictions, intuition and force–that’s human too)
  • showed me that others also value an upbeat vision of a future based on exploration (concepts as well as new places and people), tolerance, celebrating differences, and the scientific method.

Thanks to Gene Roddenberry and the multitudes of dedicated, creative people who helped bring the world of Star Trek to screens big, small, and flat.

New Survey Available for Patients with Any ROS1-Positive Cancer

You might already know that my cancer is ROS1-positive. This means my tumor cells test positive for a rearrangement of the ROS1 gene in my DNA.

Now we ROS1-positive patients can help researchers learn more about our cancer by taking a survey.  If you’re already sold, click on the link at the bottom of this page.  For more info, read on!

All human cells have the ROS1 gene, but in adult humans the ROS1 gene isn’t very active. However, sometimes the ROS1 gene fuses with another gene and becomes “rearranged.”  Cells that have certain ROS1 rearrangements become cancerous.  ROS1 cancer is rare – about 1% of non-small cell lung cancers – and is found in several types of cancer such as brain cancer (glioblastomas), angiosarcoma, and melanoma.  ROS1 cancer can be very aggressive, but many patients respond amazingly well to a drug called crizotinib, which is FDA approved for ROS1-positive lung cancer.  You can learn more about ROS1 cancer, some of the patients who have it, and available treatments and clinical trials on the ROS1 portal .

Over 100 patients who have ROS1-positive cancer of any type (regardless of where the cancer started) have joined a Facebook group called “ROS1 Positive (ROS1+) Cancer.” We hail from a dozen different countries. We discuss how to handle side effects of treatment, explore the treatments and clinical trials available to us, and post new research findings. And we share concerns about our futures, because … well, those of us with metastatic ROS1-positive cancer are not curable.

I’ve had no evidence of disease (meaning we can’t detect any cancer) on crizotinib since January 2013. I wish I could say I’m cancer free, but I can’t.  For most everyone who takes crizotinib, the cancer eventually develops resistance to the drug, and tumors start growing again.

We ROS1ers need researchers to learn more about our cancer, and find more effective treatments. Now we can do something to help.

PatientDrivenResearch_Final_April 13, 2016

The Bonnie J. Addario Lung Cancer Foundation has partnered with ROS1ers to inform more people about our disease and develop patient-driven research that will hopefully find more effective treatments for us.  Although the ALCF focuses on lung cancer, this effort is addressing ROS1-positive cancer regardless of where in the body the cancer began.

The first step is an online survey that aims to discover what we ROS1ers might have in common and hopefully identify some causes for this rare cancer (the majority of the patients are young, fit never smokers). To our knowledge, this is the first-ever research into the possible causes of a genomically-driven cancer across cancer types.

Please complete your survey ASAP! While the survey will remain open for a long time, the first round of data analysis will commence on July 15, 2016, with a goal of announcing preliminary findings at the World Conference on Lung Cancer in December 2016.

If you have ROS1-positive cancer, please complete this survey.
If someone you know has it, please encourage them to complete this survey.
CLICK HERE FOR ROS1 PATIENT SURVEY