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.

Be the Change

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The USA is being sorely tested.  Now is the time to show the power of our Constitutional form of goverment.

Regardless of whether I voted for an incoming US President, I believe in our election system and the US tradition of a peaceful transition of power. That tradition deserves respect. Not all nations give their citizens that option.

If our government and its systems have flaws, then state your objections and use our participatory system of government to fix it. Don’t use rage and violence to make your point–that will not erase hatred or make any positive, lasting change.

People, you can do more than exercise your Constitutional right to peaceful protest.  Remember also to exercise your right to pursue lawful change as laid out by the US and State Constitutions.

Along the way, teach compassion and respect by showing them to others.  Show the world why a Constitutional form of government is desirable.  BE THE CHANGE.

Dear Congress: Please Consider Lifetime Caps and Pre-Existing Conditions Carefully

Dear Congress:
Some voters say they don’t want the government or insurance companies to spend THEIR money on other people’s healthcare.  They think repealing the Affordable Care Act will fix all their healthcare problems.
They probably are not aware that “other people” will likely include them or someone they love at some point.  All of us risk the ravages of accidents, illness, and age, and 39% of US citizens will get cancer in their lifetimes (per the NCI’s current SEER data).
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Before the ACA was implemented, cancer was a “pre-existing” condition that prevented anyone who’d had it from obtaining health insurance, and most healthcare plans had “lifetime caps” on how much they would spend on individuals.  My exceptionally great employer-provided health plan’s lifetime cap was $250,000 before the ACA.
My insurance company was billed more than $250,000 during my very first year of advanced lung cancer (I was diagnosed May 2011).
If the lifetime cap and pre-existing conditions clauses were in place last year, I would have lost my health insurance, and likely would have no option to buy more. I would have been responsible for paying about $98,000 in 2016 alone in billed healthcare services and treatments (assuming I could still get my targeted therapy cancer drug free through a clinical trial). That’s despite not having other major health issues last year, like hospitalization for pneumonia or cancer treatment side effects.

I know the ACA is not perfect. I applaud any effort that will improve healthcare coverage in the US.  But repealing the ACA without a suitable replacement is not going to solve our health care crisis.

If you allow pre-existing conditions and lifetime caps to be reinstated, you will be forcing an estimated 14,140,254 cancer patients to choose between bankrupting their families, or foregoing treatment (and probably dying).

One of those people will be your constituent … or even someone you love.
Please consider your healthcare options carefully.  The life you save may be your own.  A six-figure salary is peanuts compared to cancer treatment.

In Remembrance of What Matters Most

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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?