The Power of Lung Cancer Social Media (#LCSM)

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Today the Seattle Times published a guest op-ed piece co-authored by myself and Renée Klein, the President and CEO of the American Lung Association (ALA) of the Mountain Pacific.  You can read it here: Medicare should cover low-dose CT screening for lung cancer.

While I hope you’ll read it, that’s not why I’m blogging today.  I’m blogging because I want you to know something.

This op-ed piece was made possible by the power of Lung Cancer Social Media (#LCSM).

When I proposed co-authoring this piece to Renée, she enthusiastically agreed. However, we only had two days and 650 words in which to write it.  I knew the piece required a lot of facts to support the opinion, but which facts about lung cancer screening with low dose CT would have the most impact? Which facts were the most current?  How should we structure the facts to make our point within word count? And where on the web were the sources? The Seattle Times required links to sources before they would accept the piece.

The Lung Association had several necessary facts collected with source citations on one of their webpages.  Their researchers found a few more.  The rest were scattered all over the web. I didn’t have much time to find them, especially when I didn’t know which sources we needed yet.

As I sat staring at a blank Word document trying to compose my thoughts, a fellow founding member of the #LCSM Chat, Deana Hendrickson (@LungCancerFaces), texted me about another subject.  Then it hit me.  I had at my literal fingertips a ready-made community of passionate lung cancer patient advocates and healthcare professionals, each of whom had already demonstrated their desire to see Medicare cover lung cancer screening with low dose CT.  In fact, the #LCSM community had created a change.org petition on this subject in February.

So I made use of those connections. I sent emails and Twitter direct messages to other #LCSM Chat regulars: thoracic surgeon Dr. David Tom Cooke (@UCD_ChestHealth), radiation oncologist Dr. Matthew Katz (@subatomicdoc), and fellow advocates Deana, Laronica Conway (@louisianagirl91), and Andrea Borondy Kitts (@findlungcancer).  Even though they were located thousands of miles from me and were busy with their own jobs and lives, they all responded within an hour. Over the next 24 hours, they helped brainstorm the structure of the piece, provided links to sources they knew, and waded through Google for the additional facts needed to round out the argument.  Andrea carried the research one step further by discussing a difficult point with the lead author of a relevant journal article–he just happened to be in a meeting she attended that afternoon– and feeding me answers in real-time texts.  All of them also reviewed rough drafts and added insightful comments.  It’s as if we were intended to work this project together at that particular time.

Because of  the #LCSM community, my co-author, and my writing critique group (who just happened to be meeting the night I completed the first draft), 23 citations were thoroughly researched and four drafts including the final were completed in less than two working days.

I am amazed and humbled by the dedication displayed every day by the #LCSM community in the fight against lung cancer.

Thanks, everyone.  It truly takes a village.

Sunshine, Baseball, and Video

This morning I awoke to learn I’d been on the news at 6:15 AM.  The local NBC affiliate, King 5, included excerpts from my interview yesterday in their coverage of the Lung Force Turquoise Takeover and art unveiling in Seattle. You can see the clip here. Wonder why I kept looking at the ceiling?

We had a gorgeously clear 80-degree day today in the Pacific Northwest–perfect for a ball game.  Fellow lung cancer patient Gwynne Cleveland (@GB2C on Twitter) and I worked the Lung Force table at a Seattle Mariners day game, recruiting walkers for the inaugural Lung Force Walk in Seattle on June 7.  Shirt sleeve weather in May is a rare treat around here, although the breeze on the shaded concourse drove us both into sweaters.

Back home, as I hear the birdsong in the fading sunlight and spectacular sunset, two questions pop into my mind:

Why do birds sing at dusk?

Is it the same reason lung cancer patients blog?

Third Time’s a Charm

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Today I celebrate my three-year cancerversary. It was May 10, 2011, when biopsy results confirmed my lung cancer diagnosis.

My life has evolved quite a bit since that day. My first cancerversary in 2012 fell two days after my sixth (and last) dose of second line chemo, and a month before my second series of radiation treatments. I was stage IV, continually felt like I had the flu, and though hopeful, didn’t feel much like celebrating. My second cancerversary in 2013 fell sixth months into my current clinical trial. I had achieved No Evidence of Disease (NED) and focused on enjoying life, but was nearing the timeframe when others who took the same experimental drug typically progressed. I flew to Denver every 4 weeks for trial check-in, juggled side effects of treatments past and present, and felt anxious about the future.

My third cancerversary is different. Life no longer revolves around cancer treatment. I’m 17 months NED in my clinical trial, and the drug’s side effects are minimal. My visits to Denver every other month seem almost routine, with only a hint of scanxiety. I’m exercising most days, rebuilding my fitness level, and starting to lose the 60 pounds gifted to me by various cancer treatments. Physically, I’m less a cancer patient and more an out-of-shape fifty-something.

My life still revolves around lung cancer, but not in the same way. I’m busy most days with lung cancer patient advocacy. In addition to writing this blog for over a year, I moderate Lung Cancer Social Media (#LCSM) chats on Twitter and work with lung cancer nonprofits, healthcare professionals, researchers, and patient advocates to raise awareness and support of lung cancer issues such as benefits of mutation testing, screening with low dose CT, living with metastatic cancer as a chronic illness, and the need for increased research funding.

To celebrate this cancerversary, my husband and I spent a quiet vacation week in Whistler BC. The drive from Vancouver along Howe Sound into the volcanic coastal range (via Sea to Sky Highway) showcased Mother Nature at her finest. I enjoyed exploring Whistler Village and surrounds as well as writing. As I watched the snowboarders walking down from the Blackcomb gondola, I did feel a twinge of regret that I can no longer ski. However, I later reveled in the warm sun as I walked the mile around Lost Lake (2200 feet elevation!) at a moderate pace, with only a few stops–I could not have done that in 2011, 2012, or 2013.

So life has returned to an acceptable state of normality. At this point in time, a headache is just a headache—it doesn’t automatically trigger anxiety about brain mets. I look forward to seeing my son graduate from college next May. I accepted a commitment in fall 2015 without first asking if I’d be alive on that date. I know my targeted therapy cancer pill likley will fail me someday, but I now can go weeks without thinking about that.

As Trillian says in Hitchhiker’s Guide to the Galaxy:
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”


Howe Sound, British Columbia


Sea to Sky Highway, British Columbia

Lost Lake Outflow near Whistler BC

Sharing End-of-Life Preferences

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Occasionally in my online lung cancer support group, a family member or caregiver wonders if they made the right treatment choices for their loved one. I can’t imagine the anguish felt by a spouse or partner wondering if they should have agreed to a radiation treatment or that last round of chemo, especially when it made the patient miserable without preventing their death.

Such personal stories emphasize to me the importance of open communication about illness and dying. Too often we are so busy fearing and avoiding death that we forget to ask each other what we’re really thinking and feeling.

I think both lung cancer patients and their family members need to let each other know it’s OK to talk about the possibility of dying sooner rather than later. After all, we are ALL going to die sometime. We need to let each other know under what conditions we would want our lives prolonged by cancer treatment, antibiotics, machines, or CPR. Most of us will face such choices towards the end of our lives, even if we simply grow old.

Preferably we would have such conversations when life is bright and happy, before an accident or illness makes the conversation urgent. However, we tend to avoid the subject, so the conversation is forced by circumstances, or ignored entirely until the opportunity is no longer available. We lung cancer patients and caregivers need to look for ways to encourage such discussions.

“The Conversation Project” aims to promote such conversations about death and our end-of-life preferences. Their statistics: “60% of people say that making sure their family is not burdened by tough decisions is ‘extremely important,'” yet “56% have not communicated their end-of-life wishes.” The site offers videos, a starter kit and suggestions to get the discussion going.

Please let your spouse/partner and older children know you’re open to talking about death, and have thoughts you want to share. Don’t leave your family members wondering if they followed your wishes.

Tax Advantages of Being a Guinea Pig

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Traveling for a clinical trial generates a sizable pile of fiddly bits for tax archives. I’m debating whether to store them nicely sorted, or stuff the chaos into an envelope as revenge on anyone who dares to challenge my medical deductions.

Tangled Thoughts from a Restless Mind (a reblog)

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Joining an online community of lung cancer patients and caregivers is wonderfully supportive, informative, even lifesaving.  But members must  pay dues by weathering frequent losses of friends.

Saturday night, March 29,  2014, another young stage 4 lung cancer patient died of her disease.  Jessica Rice, age 33, who tweeted as @stage4blog and blogged at stage iv.wordpress.com, gave hope and inspiration to many lung cancer survivors before succumbing to multiple brain metastases.

Sometimes it’s too much.  Tori Tomalia (@lil_lytnin, who blogs at A Lil Lytnin’ Around the World) reflected on this in her blog yesterday.  She voiced what many of us feel when we learn of another death in the lung cancer community.  She said it so well, I asked to reblog her post from Sunday, March 30. Here is her blog entry, reposted with permission.

 

Tangled Thoughts from a Restless Mind

by Tori Tomalia

“Enjoy yourself, it’s later than you think.”

I’m tired of being reminded of the fleeting nature of our time on Earth.
I’m tired of being aware that this can all end so quickly.
I’m tired of knowing how important it is to stop and smell the roses, that the frost is coming soon.
I’m tired of happy moments carrying the pang of realization that this can be gone in the blink of an eye.

Understanding the importance of living for today is a terribly heavy weight to carry.

“when Time and Life shook hands and said goodbye.”

I’m so tired of people in my community dying.

Perspective Check

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Signs of spring continue to accumulate in Western Washington. Fruit trees bloom. Rain falls — this March is our wettest month EVER in Washington. And, as occasionally happens after heavy rains, landslides occur.

A week ago, three million dump truck loads of liquified mountain descended onto the small community of Oso, Washington. In some parts of the one-square-mile slide zone, mud is ten to twelve feet deep.

While at times it’s tough for me to live from scan to scan, I imagine it’s much harder to have one’s home, family, and community wiped out in mere seconds. Recovery efforts continue, but the odds of finding people alive at this point are slim. One young woman lost both her mother and her 4-month-old daughter in the disaster. Others are uncertain if their loved ones were in the slide zone, perhaps on the now-buried highway that passed through the town.

Yet survivors still struggle toward the light, much as blades of grass in our so-called lawn fight to emerge from under a smothering expanse of moss each spring.

There are worse things than cancer. Even so, life goes on.

Clinical Trial Check-In Number 18

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Denver gifted me with a warm, bright day today — clear skies, 60 degrees, a hint of breeze — perfect for sitting on a sun-drenched bench and basking in the glow of another clean scan. I’m still No Evidence of Disease (NED) status. Woohoo!

You’d think I would have had enough radiation for one week, but that spring sunshine was simply irresistible after such a long winter.

I had a PET-CT scan as well as a brain MRI and lab work yesterday, and had my once-every-eight-weeks visit with my clinical trial oncologist Dr. Camidge at University of Colorado this afternoon. Today I started cycle 19 on the drug Xalkori. Each cycle is 4 weeks, so I’ve been on this drug trial for 76 weeks now, which is almost 17 months.

I’ve been NED for nearly 15 months on Xalkori. According to interim results published about this clinical trial last year, only myself and one other person achieved NED on this trial. It’s possible I don’t have many cancer cells available to mutate and develop resistance to the drug. My particular flavor of lung cancer (ROS1-driven NSCLC) hasn’t been studied very long — the first article about it was published in January 2012 — so little data exists to know what will happen in my case. Xalkori may continue to suppress my cancer for years. It’s cool to hear my doctors say they have no idea of how long I might have left, and know they’re being honest with me. I’m an outlier for those gloomy stage IV lung cancer statistics.

I feel so fortunate to be blessed with more time to enjoy family and the miracle of life. I aim to make good use of it.

Speaking of making good use of my time … should I mention I have to work on tax returns after I fly home? Nah.

Trial Travel Notes to Self (March 2014 edition)

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I still travel to Denver every eight weeks for my clinical trial appointment. On each visit, I refine my travel skills. Here’s what I learned (or relearned) this time:

1. Denver employs hidden moisture vacuums in airport jetways.

2. Dodge Avengers are built for people shorter than me.

3. Weather Channel three-day forecasts for Denver aren’t sufficiently fine tuned to indicate whether it will snow when I leave the hotel.

4. Hospital cafeteria hours don’t necessarily mesh with radiology schedules.

5. No matter how many times I push the button, MY car key will not unlock a rental car.

6. To avoid repeating #5, review #4 and pack a snack.

7. If one must sleep in the MRI machine, don’t snore loud enough to jerk awake.

8. While waiting to get scan results, plan something distractingly fun. Trying to verify tomorrow’s weather report on clinic wifi does not qualify.

9. No matter how calm and relaxed I may be, and what arsenal of sleep medicines I may possess, I won’t fall asleep at a reasonable hour the night before a scan.

Mantras of the Cancer Revolution

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Here’s an inspiring and hopeful talk about finding cancer treatments.

Targeted therapies are revolutionizing the way cancer is treated. One of the leaders of this revolution is Dr. Ross Camidge, Director, Thoracic Oncology Clinical Program at University of Colorado Hospital. He recently gave a talk to Colorado State University’s biotech students, using examples of his lung cancer research to inspire the students to careers in biomedical science.

CSU Career Center’s BioTech Connect: Ross Camidge

RECAP — Mantras of the Cancer Revolution:

The revolution in cancer treatment happened when the effectiveness of crizotinib for ALK+ lung cancer was discovered. “The whole drug development industry in cancer changed overnight. It wasn’t about finding one drug that was going to work a little bit in everybody. It was about findiing a drug that worked amazingly well in a small number of people.”

Camidge stated the following “mantras of the cancer revolution”:

1. One size does not fit all
(personalize cancer treatment based on each individual’s cancer)

2. Don’t walk away from a good thing
(if the targeted drug is working, stay on it as long as possible)

3. If the cancer moves, follow it
(if the cancer moves into brain, make a drug to treat the brain)

4. Question everything

Disclosure: Dr. Camidge is my clinical trial oncologist. I feel incredibly blessed to have him leading my lung cancer team.