Finding Myself in Antiquity

Wonder why I’ve been relatively quiet online recently? I just returned from a 15-day “Cities of Antiquity” cruise in the Mediterranean aboard the Viking Star. This trip gave me a much-needed mental health break–I actually spent two whole weeks on something other than lung cancer (though I did sneak online for 10-20 minutes several days).

Since I was still rehabbing my foot, I used trekking poles on walking tours and my knee roller on the ship to avoid overdoing. My left foot did not swell or turn blue even on days when my fitbit clocked over 10,000 steps. The tours gave me the most exercise I’ve had in six months, which is probably why I didn’t gain any weight on the trip despite the abundance of food, tempting desserts, and wide variety of gelato flavors.

Lots of perspective and leasons learned to be found in other cultures’ 3000+ years of history.  We visited Athens, some Greek islands (among them Mikonos and Rhodes), Cyprus, Israel (Jerusalem, Nazareth, and the Sea of Galilee), Naples, Pompeii, and Rome. It was well worth yesterday’s 29-hour travel day (Rome to Seattle) and the upper respiratory infection that followed me home.

More pictures to come.

Editing in the age of precision medicine

I want a plug-in for Siri on my iPhone that recognizes the names of all cancer drugs. I’m getting really tired of correcting “and tractor new” (entrectinib), “croissant live” (crizotinib), and “a lot of them” (lorlatinib). You should see what Siri gives me when my chemobrain is too tired pronounce the longer ones correctly! I still can’t wrap my tongue around the generic name for Tecentriq. 

Feel free to share your Siri/Cortana/Dragon medical transcription snafus in the comments.

Happy Silver Anniversary, Gerry!

‪Thanks to cancer clinical trials,  engaged patients, and a devoted spouse, I have lived to see my silver wedding anniversary.

I don’t know which is more amazing – that I’ve lived six years beyond a diagnosis of advanced lung cancer (and currently have no evidence disease), or that two strong-willed, opinionated engineers have shared a house for 25 years without killing each other.  I think the second might be a rarer occurrence.

My cancer diagnosis definitely put a strain on our marriage, and I know Gerry struggled at times as he watched me experience the discomforts, losses, dashed hopes, and side effects of living with lung cancer as a chronic illness. Oddly, cancer has also strengthened our marriage.  It has caused both of us to focus more on what’s really important, to be more tolerant of each other’s idiosyncrasies (we got a lot), and to find more ways to spend time together.

My husband has gradually become more involved in supporting my patient advocacy work. He’s met people that I have helped, and he can see the purpose and meaning it gives me. He said he wanted to help me have that in my life. (sniff sniff) Appropriately, hubby and I going to celebrate our 25th anniversary at the ASCO Annual Meeting in Chicago this weekend. He’ll be escorting me to events since I’ll still using a knee scooter after foot surgery (isn’t he sweet?). We’re hoping he’ll be able to watch me give my first-ever ASCO presentation, despite having only a guest badge.

So, happy anniversary, Gerry.  Thanks for sticking with me for better or worse. Love you!

Gerry and Janet blowing off steam in Yellowstone, 2013.


P.S. I’m not a TOTAL nerd. We will also be celebrating our anniversary with a Mediterranean cruise in the fall.  See, there are really cool historical sites in Rome, Athens, and Israel …

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.