And they said streaming was easy …

I feel so 21st century. I’m streaming my first Amazon Prime movie on our home TV.  Not a bad bit of tech work for a 60-something.

It’s amazing how many choices, purchases, technologies, services, and connections this effort required:

  • research and buy a digital TV (years ago)
  • research and buy a Blu-Ray player (many months later)
  • research and contract with a high-speed Internet service provider
  • upgrade Comcast service to faster Internet
  • order upgraded cable modem from Comcast
  • activate new cable modem and upgrade its software
  • buy new Wi-Fi router with range and bandwidth to reach the TV
  • ensure I have all necessary cables (whoops, another trip to the tech store)
  • set up router
  • wire modem to router and confirm connection
  • set up home Wi-Fi network
  • wire TV to Blu-Ray player and confirm connection
  • connect Blu-Ray player to home Wi-Fi network
  • update Blu-Ray player software (from version 2007 to 2021)
  • use networked PC to subscribe to Amazon Prime
  • install Amazon app on Blu-Ray
  • find Amazon app amidst other apps on Blu-Ray player
  • login to Amazon app
  • use Blu-Ray player find and select a movie
  • start streaming …

… and discover that so many neighbors are streaming movies at the same time on Comcast that your movie won’t play.

Who knew home entertainment could be so complicated?

Good thing fixing healthcare only takes some quick legislation.

Submission Deadline for “Life Between Scans” Anthology is July 1!

Have a story about living with metastatic lung cancer on targeted therapy (as a patient or caregiver)? Submission deadline for the Life Between Scans anthology is July 1!
Submissions guidelines are here:

The value of one father

Photo Credit: personalexcellence.co

In some ways, my father was ahead of his time. An engineer, aviator, inventor, WWII vet, and medical doctor (Ok, he was an overachiever), Dad wanted all of his children, regardless of gender identity, to have a good science, technology, engineering, and math (STEM) education because he believed it would be essential for thriving in the future economic and political landscape. “Education is something that no one can take away from you,” he told me more than once.

Dad (and Mom too) fought school policy to make sure I was allowed to take science instead of being forced to take Home Economics with the other girls. Dad taught me how to use a slide rule, and when my math class did not cover essential concepts–like using π to calculate the area of a circle–he taught me himself (though at the time I would have much rather gone to bed). He advocated so that I and some other advanced students could take algebra and chemistry a year early, which allowed us to cram all the available STEM classes into four high school years. And he made sure that I could afford to attend my choice of colleges that focused on science and engineering.

In his sparse free time (he was a practicing family doctor while working as chief engineer at his father’s company on the side), he showed me how an oscilloscope could analyze an electronic circuit,  taught me how to find the constellations using a telescope, took me and a classmate out in his boat to collect plankton for a science project, and talked to my physiology class about medicine.

True, he missed most every ball game, skipped a lot of music concerts, and often wasn’t home to read to me (thankfully Mom picked up the slack).  True, I had issues with his insistence on perfection and lack of positive feedback. Still, I am the happy, inquisitive science geek I am today in large part because my father made sure my scientific curiosity and abilities were nurtured.

So, thanks, Dad, for believing in me. Despite your humanity and parenting missteps, you made a positive difference in my life. I wish 60-year-old me could talk to you face to face and make sure you knew how much I loved you–and love you still–and reassure you that I know how much you did for me.

To all who have been, will be, or wished they were fathers; who stand in as a loving father figure; or who had or wished they had a good father ….

may you spend Father’s Day remembering or making happy memories.

The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

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 …

NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.
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ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …

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.