2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 40,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 15 sold-out performances for that many people to see it.

Click here to see the complete report.

Escaping the Shadow

The holiday season can be difficult for cancer patients and their loved ones. It’s tough to be merry while dealing with treatment side effects or wondering whether one will be alive this time next year.
By the end of November this year, I’d hit a low point. My energy had waned, oppressed by the shorter days and gray skies of Seattle and a general sense of ill health. My cough had increased, stirring fears of recurrence. My writing muse had burned out after weeks of intensive Lung Cancer Awareness Month activities.

Then, within one week, two lung cancer buddies died, and a third friend died of metastatic breast cancer days after being diagnosed. I kept vigil with her family as her lungs failed from obstructive pneumonia–a scenario that was far too familiar. The shadow of my own Ghost of Christmas Future loomed, and holiday lights did nothing to brighten it.

In a rare moment of prescience last summer, my family had planned the perfect remedy for me … read more on my Cure Today blog

Club Regina balcony view

Image credit:
Creative Commons License
JFD20141220-CancunClubRegina by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Lessons Learned on a Yucatán Vacation

Tulum ruins and beach

  • Arriving at the Cancun airport requires tolerance for chaos.  On the other hand, it’s a great place to meet persuasive people who want to take you places.
  • Treat all red octagonal “ALTO” road signs as recommendations.
  • Hearing “Have Yourself a Merry Little Christmas” simultaneously with the pounding of ocean surf on fine sand creates serious cognitive dissonance.
  •  (air conditioning)+(incomplete door seal)+(tropical thunderstorm) = damp musty bedding
  • 92% relative humidity leaves fascinating streaks in excess sunscreen.
  • Uncontrolled experiments prove UBF50 swimwear protects you longer in the ocean than the waterproof sunscreen you put on your face.
  • Standing in the surf provides a feast of sensory delights — if you keep your mouth shut.
  • White sand beaches migrate into hotel rooms.
  • A Spanish-English dictionary app radically reduces time spent ordering and shopping for food.
  • When boiling tap water for drinking the next morning, the kitchen timer is your friend.
  • Tropical tours that depart early in the morning will reduce exposure to heat and cheap souvenirs.
  • Lisa Simpson becomes an alto in Spanish. That’s just wrong.
  • According to my blistered toes, those newly-rediscovered sandals I packed were lost for a reason.
  • Every breakfast buffet should feature chocolate sauce for omelets.
  • Departing from the Cancun airport requires running an upscale shopping gauntlet.
  • Ending a tropical vacation with an aerial view of the Northern Lights is pure awesomeness.

Image credit: Creative Commons License
Tulum Ruins and Beach by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Joe Cocker Dies from Lung Cancer

Although I’m saddened by his death, I’m glad Joe Cocker’s obituary stated lung cancer as the cause of death. Only when prominent people are brave enough to admit they have lung cancer (despite the stigma) will the public realize the prevalence of the biggest cancer killer. All you need to get lung cancer are lungs.

RIP, Joe.

Stanford Scope blog: Lung Cancer Social Media contributions to my Medicine X speech

This is a reblog of my post that appeared in the on the Stanford Scope Blog on November 17, 2014

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Tackling the stigma of lung cancer — and showing the real faces of the disease

 

When I first learned I would be giving an ePatient Ignite! talk at Stanford’s Medicine X, I knew I wanted to speak about the stigma of lung cancer. I had frequently heard the first question typically asked of lung cancer patients – “Did you smoke?” – and I wanted to help change public perception of my disease.

I had plenty of material and preparation. I had actively blogged about my metastatic lung cancer journey for more than a year. I had researched statistics and funding disparities. I had gleaned patient perspectives via participation in online support forums and Lung Cancer Social Media (#LCSM) tweetchats. I also had years of public speaking experience, so I wasn’t anxious about getting up in front of an auditorium full of people.

What I didn’t have was knowledge of those who typically attended Medicine X, or how best to connect with them. I had never spoken publicly about lung-cancer stigma, certainly not to an auditorium full of people unfamiliar with my disease. After MedX ePatient adviser Hugo Campos helped brainstorm ideas, I wrote a speech – but it lacked something.

To figure out what was missing, I reach out to the online lung cancer community – patients, advocates and health-care providers I knew from support groups, Facebook, and Twitter. When Chris Draft of Team Draft reviewed my speech and slides over breakfast at Denny’s during one of his trips to Seattle, he smiled tolerantly when he saw my engineer’s fascination with graphs and pie charts. Then he made a point that changed the focus of my entire presentation.

Despite the dire statistics, the public will only care about the number one cancer killer when they can see that these patients could be people they love – a parent, sibling, child, friend – or even themselves. My speech needed to show the real faces of lung cancer, he explained.

So I rewrote the entire presentation and looked for graphics that could help people connect with the patients as well as the facts. I ditched the numbers-based charts for concept-based images. Online patients provided pictures of themselves living life and doing things they enjoyed. A dozen friends from across the online lung-cancer community reviewed the pitch via email or in person. It truly became a collaborative effort.

When I stepped out on the MedX stage that September day, I brought the hopes of many in the lung-cancer community with me. Chemobrain gave me a moment of terror (I lost my place while the slides continued to change every 15 seconds) but judging from the standing ovation the ePatients gave me, I made our point. My Twitter handle was in the top ten mentioned in the #medx stream that day. Tweets from health-care providers watching the speech online and in the audience said it changed their view of lung cancer.  Lung cancer patients -smokers, non-smokers, and never smokers alike – said it expressed everything they wanted others to know about our disease. And as of today, the YouTube video (above) has been viewed more than 1,100 times. But perhaps the most gratifying reaction was when someone friended me on Facebook just to say my speech helped her forgive her father, a life-long smoker who recently died of lung cancer.

This speech represents the best of what an online community can accomplish when they collaborate. The only thing I’d change next time is to avoid delivering it in San Francisco the day before my clinical trial visit in Denver: Evidently butterflies are aggravated by PET scans.

Lung Cancer Bloggers on WEGO Health Activist Twitter Chat (11/18 at 3PM EST)

On Tuesday November 18, 2014, at 3 PM Eastern Time, the WEGO Health Activist Twitter Chat (#hachat) will focus on lung cancer in honor of Lung Cancer Awareness Month.  I will be the guest host along with three other guests, all lung cancer bloggers:  Linnea Duff (), Samantha Mixon (), and Tori Tomalia (). I’ll pose six questions to help our guests and chat participants discuss their lung cancer advocacy efforts on blogs and social media.

  • Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
  • Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
  • Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
  • Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
  • Q5: How has the lung cancer information you share changed over time?
  • Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?

Hope you will join us on Tuesday, whether you choose to actively participate in the chat or just watch.  Remember to include #hachat in your tweets. For more information about how to participate in a tweetchat, check out the tutorial at the #LCSM Chat website (remember to #hachat instead of #LCSM as the hashtag for this chat).

Read the Storify summary of this chat here.

My Physical Therapist Was Right (Darn It)

OK, physical therapist.  You made your point.

When I first worked with you in early 2013, about six months after cancer radiation therapy zapped the nerve bundle for my right arm (the brachial plexus), you gave me wonderful exercises to strengthen my rotator cuff muscles.  At the end my scheduled visits, you said I would have to keep doing those arm exercises daily for the rest of my life, and I shouldn’t lift more than 20 pounds with that arm, ever.

After months of daily exercises, those muscles grew strong.  I REALLY wanted to think my arm was normal again.  I thought I could be done with physical therapy and go back to lifting everyday things like kitty litter and groceries and storage boxes in the closet.

NOW, a year after our last visit, I get it.  Now, when I can’t raise my arm over my head without shoulder owies.  Now, when two sequential PET-CT scans show degeneration in the right shoulder joint. Now I’ll go back to daily arm exercises with the wimpiest exercise bands and no hand weights, like a newbie.

At least I kept the printouts of all the exercises so I know what to do.  I may take a while to get the point, but I CAN learn.

Maybe on my next flight to Denver for my clinical trial, I’ll be able to raise my right arm comfortably again.  If so, I’ll raise my arm …  and ask the flight attendant to help me by lifting my bag into the overhead bin.

Cancer reality: 20-something
Me: 1 (extra credit for keeping the exercise printouts)

WOMAN-RAISING-HAND