Farewell, Stephen Hawking, and thanks

Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.

Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.


I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.

(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)

When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.

But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.

Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.

Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.

You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.

An opportunity to support patient-driven ROS1 cancer research

I hope you’ll support me and the Global ROS1 Initiative as we strive to accelerate research, find better treatments and hopefully cure ROS1 positive (ROS1+) cancer — which I have. Here’s a National Cancer Institute blog about the Initiative. This project is very dear to me.

If you’ve been meaning to contribute, or you have friends or family you’ve been meaning to ask to donate, do it today, or sometime before the end of the year!  The recently-signed US tax law revisions may affect whether you can claim a tax deduction for your charitable contributions after January 1, 2018.

Janet Freeman-Daily’s ROS1 Research Fundraiser

Thanks for supporting ROS1+ cancer research—you could help save someone’s life someday. For those who want more detail about the project and fundraiser, read on!

Why research ROS1 Cancer?

My type of cancer is driven by an alteration in the ROS1 gene. Medical research has made it possible for me to live well with aggressive, metastatic ROS1+ lung cancer since 2011. However, ROS1+ cancer is uncommon (only 1%-2% of lung and other cancers) and not well understood. Only one approved ROS1-targeted drug exists, and patients eventually develop resistance to it. Little is known about how this disease begins, progresses and develops resistance to treatment.

Is my donation tax-deductible?

This fundraiser directs funds to the Bonnie J. Addario Lung Cancer Foundation (ALCF), a 501(c)(3) nonprofit (view their Guidestar page); monies are placed in an ALCF account designated for our ROS1 project. Donations  are tax deductible under US tax laws.

What is the Global ROS1 Initiative?

I helped to create the Global ROS1 Initiative, a unique collaboration between ROS1+ patients, caregivers, researchers, clinicians, and industry. This is the first-ever effort initiated by patients to focus on cancer driven by a single genomic alteration anywhere in the body. We are initially funding projects in the US (takes time to learn about international research collaboration), but our patient group is global, with patients in 19 countries to date.

How did the Global ROS1 Initiative get started?

Who are the Global ROS1 Initiative partners?

What research will the Global ROS1 Initiative fund?

Funds in the ROS1-designated account will be distributed by a panel of Global ROS1 Initiative representatives (including patients) to our projects. We are funding two projects at present:

  • A survey conducted through Stanford University, which collects personal and health history data on ROS1ders. Researchers will study the data to look for possible causes of ROS1+ cancer, and evaluate effectiveness and sequence of treatment options.
  • The ROS1 Cancer Model project, which is creating new models of ROS1+ cancer for drug development and research into our disease. In early 2017, only a few ROS1+ models existed, and they did not represent all the dozens of variations of ROS1+ cancer. In this project, we ROS1ders agree to donate our cancer tumor cells collected in the normal course of care to create cell lines and mouse models that researchers can use to study our disease.

How will the Global ROS1 Initiative accelerate research?

As part of our patient-driven approach, we aim to make our data and models widely available to the cancer research community instead of holding it in silos at individual institutions.  We will be creating a biorepository of our specimens with annotated patient data, including making use of patient registries (like the Lung Cancer Registry) that share de-identified data will validated researchers. The cancer models we create will be distributed at minimal cost to researchers.

The ROS1ders also help spread vetted information about ROS1+ cancers to patients, caregivers, and the public.  We donate our time to maintain and write content for the ros1cancer.com website  which shares up-to-date information about ROS1+ cancer, names of ROS1+ experts, known treatments and their approval status globally, and available clinical trials focused on ROS1+ cancers.  We also administer a private Facebook group in which ROS1+ patients and caregivers share their experiences, news about our cancer, and tips for living with our disease (more info on joining this group is here).

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.

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!

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


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.