Finding My Voice

Tonight (July 31) at 7 PM Pacific Time I will be the first of six speakers sharing our cancer journeys at “Community Voices: Stories of Survival“. My talk titled “Finding My Voice” will tell the story of why and how I became a lung cancer patient advocate. The event will stream live on the Internet tonight, and will be available later as a podcast and video. Thanks to The Story Collider and the online community Smart Patients (who teamed to create this show in San Carlos, California) for inviting me to participate!

Stuart Scott Knows How to Beat Cancer

This year’s ESPY awards honored ESPN anchor Stuart Scott with the Jimmy V Perseverance Award for his ongoing battle with cancer. The intro by Kiefer Sutherland and tribute video are inspiring, but my favorite part is this line in Scott’s acceptance speech:

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live.”

He gets it. And he lives it.

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Beyond First Base

Yesterday I played softball.

Nothing formal — a group of friends played a leisurely, good-natured game on a seriously foreshortened backyard diamond after a meeting. It was practice for my 40th high school reunion in August, when 42 of us who grew up together are going to play softball in Tacoma’s Cheney Stadium–home of the Tacoma Rainiers (the Seattle Mariners’ AAA team).

This may not seem like a big deal to you. People play casual softball at family gatherings and summer picnics all the time. So what?

Well, it’s a milestone for me. You see, my body is different now. Yes, I’m two decades older and considerably softer than the last time I hefted a bat. But the real difference is not immediately visible: cancer treatment changed how my body performs.

I was a tomboy, relatively athletic for a girl growing up in the 60s. I could run and jump and throw, and I was pretty fast. As a kid I played sandlot ball with the boys because I “didn’t throw like a girl.” I played softball most every summer after I turned ten. I played the available intramural school sports and lettered in track in the first year it was open to girls. In college, I continued playing intramural sports and spent a year on the women’s club softball team. After graduation, I joined a Masters swim team and hiked with The Mountaineers. Later I ran 5Ks, rode my bike for miles, and played adult slow pitch for several years. I wasn’t truly a “jock,” but I knew how to move.  As I aged, I moved less, and would occasionally allow myself to get sedentary and out of shape, but in a bout of remorse I would get myself back into shape again. I was fit and healthy when I got diagnosed with lung cancer in 2011.

Now? Chemotherapy left me with peripheral neuropathy that occasionally interferes with walking and balance—my feet can’t sense the ground reliably. Radiation to my chest caused scarring and volume reduction in my lungs, so my oxygen level drops when I walk at a modest pace. Radiation to my right collarbone area hit a main nerve bundle, which causes some weakness in my right arm and a risk of damage if I lift too much weight with it. A year of steroids packed on the fat while decreasing my muscle tone. My current targeted therapy causes edema in my legs and hands that affects their movement and comfort. Some combination of side effects keeps my red blood cell count just below normal, which saps my stamina and ability to move quickly. I do exercise regularly on the treadmill and elliptical, but I can’t yet get the pace anywhere close to a brisk walk for more than 30 seconds without breathing fast and hard.

I’m not complaining, mind you–I’m happy to be alive and have a relatively normal life on my current targeted therapy. But I must face reality: the body I have now is not the same one I had Before Cancer.

That’s why that low-key softball game was such a revelation for me. The moment I put the glove on my left hand, my body recalled those days on the softball diamond. After some initial fumbles, I caught the ball easily when it was thrown to me. After a few gentle tosses, I could throw the ball to another and actually hit their glove. After couple of wimpy at-bats, I connected with the ball. And when I ran to first base, I moved faster than a walk. I’m not exactly sure what to call that gait (it wasn’t running, it wasn’t jogging, and it certainly wasn’t graceful), but I got to first base before the ball did, probably due to the good graces of the fielders—thanks, guys, I love you.  For about twenty minutes, I was a softball player again.

When the next batter hit the ball, I just barely made it to second base, but I was safe. I stood tall with both feet on the bag, reveling in my accomplishment as I gasped for air. And it occurred to me that maybe, just maybe, regular training could get me to second base in August without breathing quite so hard. I had been thinking I would only pitch during the game and let others do the batting and running. But maybe I COULD bat, and “run” too–especially since the game rules allow players up to five minutes to get to first base (note to future reunion attendees: Reunion Committee members get to write the rules).

After crossing home plate, I excused myself from the game and sat down to catch my breath. My friends played on. I resolved that I would be on that field in Cheney Stadium as long as my breath and body held out.

I WILL get beyond first base in August. I know there’s no stealing in softball, but to steal a James Bond phrase: there’s no point in living if you can’t feel alive.

20140721-224516-81916172.jpgSee? I DID make it to second base! (Credit: Sandi Allen Estep)

Meeting the Chemist

This post originally appeared July 15, 2014, in ASCO’s cancer.net blog. Reposted with permission.
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My first ASCO Annual Meeting was an educational and exhilarating experience. As a science geek, I loved learning about new cancer treatments from leading researchers. But the highlight for me happened in a noisy back corner of a crowded poster session when I met Dr. J. Jean Cui, the chemist who is saving my life.

A little backstory: I was diagnosed in May 2011 with stage IIIa non-small cell lung cancer (NSCLC). After two series of chemo, two radiation protocols, two recurrences, and promotion to stage IV, I was told I’d be on chemo for the rest of my life. Thanks to “CraiginPA,” who I met in an online support group, I learned about a tumor mutation called ROS1 and arranged to have my tumor tested. I’m now enrolled in the same ROS1 clinical trial as CraiginPA, taking a pill called crizotinib (Xalkori) to suppress my lung cancer. I’ve had no evidence of disease (NED) status since January 2013. I know my cancer will likely return, but for now, life is almost normal.

CraiginPA and I both attended the 2014 ASCO Annual Meeting as patient advocates. We met “in real life” in Chicago the day before the meeting began and attended many sessions together. On the third day, June 1, we went to a lung cancer poster highlights session. Similar to a high-powered science fair, the session featured 25 large posters explaining ongoing studies, each with a researcher standing by to answer questions. One poster described a study of our drug crizotinib for ROS1 in Europe.

While we were tag-teaming the researcher with questions, we noticed two representatives of the pharmaceutical company who makes crizotinib standing nearby. We introduced ourselves and moved to a table to discuss when our trial drug might obtain FDA approval for ROS1.

After several minutes, one of the reps smiled and said, “Jean is here.”

CraiginPA’s face lit up. “She’s the chemist—the lead inventor who developed our drug!”

My geek meter pegged at ecstatic. The chemist who invented the drug that was keeping me alive was HERE!

“If I see Jean, I’ll tell her you’re looking for her,” one of the reps said. They excused themselves to talk to another researcher.

A bit giddy, CraiginPA and I went back to digesting the ROS1 poster. We had started debating where the drug actually bonded with the ROS1 protein on our tumor cells when a smiling young woman approached us.

CraiginPA recognized her instantly. “Jean! So good to see you again.”

I felt like I did when I’d been introduced to idols like Nobel Laureate Physicist Richard Feynman or MD/PhD/Astronaut Story Musgrave. This was not some academic stuck at a bench with glassware and data analysis. This cancer rock star was a real person, and she seemed just as happy to meet us as we were to meet her. How often does a researcher get to see the living, breathing proof that her work saves lives?

We hugged all around and coerced someone into taking a picture with Jean’s smartphone. I couldn’t have grinned any wider.

For the next 20 minutes, Jean fielded our questions about her background, why she chose chemistry as a career, and how her team designed the drug. CraiginPA and I were like two kids getting a peek behind the Wizard’s curtain at the magic of cancer research. We agreed this experience was easily our highlight of the meeting, especially for me since I experienced it with CraiginPA who first told me about this drug.

Later Jean emailed us the picture, along with an invitation to ask her any further questions we might have—a perfect end to an amazing day.

So stop me if you’ve heard this one: a patient advocate, a pharma rep, and a chemist walk into a poster session…

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New Take on an Old Excuse

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.”

 

 

The Downside of Seattle Summer

Summer in northerly US latitudes like Seattle means the sun is up almost 16 hours around the Solstice (June 21-ish). The days are long and usually sunny for a few months.  Our local mountains–especially the volcanoes–are spectacular this time of year.

Mt Rainier greets July (credit: Elizabeth Bourne)

Mt Rainier greets July (credit: Elizabeth Bourne)

The upside of this season for people who have Seasonal Affective Disorder (like me): lots of sunlight to elevate my mood and energy. I’m like the Energizer Bunny on many summer days.  This is a good thing, considering I have a lot of looming deadlines for writing and speaking projects.

The downside: lots of sunlight to keep me awake.  Last night I couldn’t get to sleep before midnight, which is only a couple of hours after dark.  Today the sun rose at 5:15 AM, and I wasn’t far behind it, even though I’d prefer to sleep until 8:00 AM. I honestly do need more than six hours of sleep at night, especially on cancer drugs. Can’t wear an eye mask over my CPAP, and blackout curtains don’t make much sense here when it’s gray so much of the year.  I want to stay sharp, yet caffeine–available on nearly every urban block in Western Washington–is a double-edge sword.

So, I get up and tackle my projects every morning with gusto and grogginess, and hope to collapse for a nap in the afternoons.  Except it’s SUNNY outside, and our yard has fresh raspberries (my favorite!),  and the words in my head are fighting to be born, and look at the MOUNTAINS, and … and …

Apparently I suck at collapsing on cue.