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My 9th Cancerversary–Adapting to a changing landscape

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Today is my 9-year cancerversary.

I was diagnosed in 2011 with Stage 3a NSCLC, and progressed to stage 4 after first line chemo-radiation. Progressed again after 2nd line treatment (different chemo and more radiation). Then I tested positive for ROS1, enrolled in the crizotinib clinical trial in November 2012, and have had no evidence of disease on scans ever since, with manageable side effects.

A few months after starting the clinical trial, I felt well enough to think about what’s next.  I was grateful for surviving thus far, and wanted to make a difference. In 2013 I found my purpose: I became a patient advocate, and over the years evolved into a research advocate. My time is spent on The ROS1ders (a global group of ROS1+ patients and caregivers that strives to improve outcomes for all ROS1+ cancers), the IASLC STARS program (to develop new lung cancer research advocates), collaborative cancer advocacy, and translating science for others.

Apparently living well with lung cancer and having a purpose was not enough. The ‘verse decided more character building was needed. Like everyone else, I am now learning to adapt to life during a pandemic.  The whole world is now experiencing what we metastatic lung cancer patients live every day:

  • A deadly disease with no cure
  • Cumulative, sometimes overwhelming losses
  • The fear of not knowing when death will come for you or strike someone you love.

I hope someday every ROS1+ positive cancer patient, every lung cancer patient, every cancer patient will have a cure.

I hope the world will soon have effective treatments and a vaccine for COVID-19 .

I hope our healthcare providers and systems survive the upheaval.

I hope our economy recovers swiftly.

I hope more people recognize the power and value of science, working together, and compassion for one another.

I hope I live long enough to see it.

 

Time for more kitty snuggles.

Cancer Choices: Quality of Life versus Quantity

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Life has an odd way of reinforcing its lessons.

Due to my own lung cancer journey, I’ve learned a lot about the uncertainties of cancer diagnostic procedures and treatment. I’ve learned that cancer is sneaky; sometimes it doesn’t announce itself until it is in advanced stages, doesn’t behave as expected, doesn’t present a clear diagnosis with a “best” treatment option. And I’ve learned the value of making treatment choices that allow the patient to do what matters most to them, rather than prolonging life at any cost. For many patients, qualify of life is more important than quantity of days.

Recently, life gave me the opportunity to apply my hard-won wisdom to my beloved 14-year-old cat, General Nuisance.

General is a fluffy, snuggly ball of love. He has been MY cat since … Read more

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New Take on an Old Excuse

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Like many housecats I’ve met, my cats have quirks. Admiral Dufus demolishes cardboard boxes and chews paper, while General Nusiance licks plastic bags.  I don’t know why they do this.  Perhaps they lack certain minerals. Perhaps their tongues like the taste or texture. Perhaps they’re studying how humans react to the behavior of feline companions.

While Admiral’s tendency to shred papers has caused some inconvenience, General’s fondness for licking things has not been an issue.  Until now.

I never told a teacher “the dog ate my homework,” but as of this morning I have to explain to my cancer clinical trial that my log of dosing times for my trial drug may be hard to read because …

 “My cat licked my journal.”

Enjoying the Fall

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Fall announces itself softly
with drifting leaves
in freshened breeze
before the rain

I’m enjoying this fall season more than any other I remember.  The contrasting foliage, quiet fog blankets, torrential rainstorms, and southbound vees of Canada geese seem new and wondrous to me.

I kinda missed the last two falls due to distractions.  Two years ago, I was dealing with the side effects of concurrent chemo-radiation therapy combined with news that I had progressed to metastatic lung cancer.  Last year, after another recurrence despite second line chemo and more radiation, I was scrambling to find a clinical trial.  Being focused on questions of life and death overshadowed little things like the changing of leaves.  It also fueled an awesome case of writer’s block.

I’m hoping to make good use of these cool gray days to rebuild my strength, read good books, declutter the house, and write.  A lot of writing.  I’m years behind on writing.

My productivity is boosted by using my lightbox to counter any drift towards Seasonal Affective Disorder, and nibbling dark chocolate now and then.  I’d love to include the Seattle addiction (coffee) in my regimen, but it disagrees with my cancer pills. I’ll trade being less alert for more alive any day.

Feline overlords Admiral and General are doing their part by keeping my feet warm.  Well, at least one foot.