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.
Congratulations, Janet, on your 9th anniversary NED! You’re doing a wonderful job.
Such a encouraging note, particularly for me, a new ROS1der diagnosed 3 weeks ago.