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Tweet for #LCAM2013 (Lung Cancer Awareness Month)

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THIS IS A REBLOG OF A POST I WROTE FOR THE #LCSM CHAT BLOG.

The October 24th #LCSM Chat on “Social Media and Lung Cancer Advocacy: What Can I Do?” identified lots of information that the public needs to know about lung cancer.  Chat members decided we’d like to tweet those facts during Lung Cancer Awareness Month (#LCAM2013) this November. Some suggested we all tweet the same fact each day to generate the greatest impact on Twitter.

To coordinate this effort, the #LCSM team compiled a list of lung cancer tweets based on verified facts – one tweet for each day in November. Links to the sources for the facts are listed below the tweets for those who want evidence.

@LCSMChat will tweet each day at 11:55 AM Eastern Time if you prefer to retweet rather than come here to find the tweets.

The tweets fall into four groups, roughly by weeks:

Week 1:  WHY — reasons why curing lung cancer matters Week 2:  WHO — personal stories of lung cancer patients Week 3:  HOPE — symptoms, early detection, personalized treatment, research Week 4:  HELP — what you can do (how to fund research, advocate, support patients, etc.)

Trending: We’ve included #LCAM2103 and #LCSM in every tweet to help with trending. If we all tweet/retweet the fact of the day at the same time, we might achieve it!  Please try to tweet/retweet each daily fact as close as possible to 12 noon Eastern Time (New York City time for those of you outside of North America). Hint: The tweetdeck app will allow you to send tweets at a scheduled time.If we all tweet at the same time, we might achieve trending. Please try to tweet each day as close as possible to 12 noon Eastern Time

Week 1 tweets are listed below.  Tweets for Weeks 2-4 will be blogged later in the month. If you subscribe to the #LCSM Chat blog, you will receive an email when our blog posts are published. All the facts will also be available on a “Lung Cancer Facts” page of the LCSM Chat site for easy reference.

WEEK 1: WHY – REASONS WHY CURING LUNG CANCER MATTERS

November 1 Tweet
Myth: Don’t smoke? Can’t get lung cancer. Fact: Lung cancer in never smokers is 6th leading cause of US cancer deaths. #LCSM #LCAM2013

Johns Hopkins Medicine. Guide on Lung Cancer in Never-Smokers – Different Disease Different Treatments (09/15/2009). Retrieved Oct 30, 2013, from http://www.hopkinsmedicine.org/news/media/releases/Guide_on_Lung_Cancer_in_NeverSmokers__Different_Disease_Different_Treatments.

November 2 Tweet
Lung cancer kills almost 2x as many women as breast cancer & 3x as many men as prostate cancer. #LCSM #LCAM2013

U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2010 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2013. Retrieved from http://apps.nccd.cdc.gov/uscs/toptencancers.aspx. To access data, select year 2010, “death rates” tab and view table for all ethnic groups Per CDC, 2010 cancer deaths were caused 37.9% by lung cancer and 21.9% by breast cancer in women, 60.1% by lung cancer and 21.8% by prostate cancer in men.

November 3 Tweet
160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html In the United States in 2013, it is estimated there will be about 159,480 deaths from lung cancer. Approximately 6.9 percent of men and women will be diagnosed with lung and bronchus cancer at some point during their lifetime.

Centers for Disease Control and Prevention. MMWR Weekly 56(44);1157-1161. (9-Nov-2007). Retrieved Oct 30, 2013, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5644a2.htm. Lung cancer cases are 17.9% never smokers, 61.2% former smokers, 20.9% smokers (see Table 2, lung neoplasms).

November 4 Tweet
The 5-year survival rate for lung cancer is 16%, about the same as it’s been for 40 years. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html Current 5-year survival rate of adults with lung and bronchus cancers is 16%. In 1975, the 5-year survival rate for lung cancer in adults was 11.4%.

November 5 Tweet
World Health Org: Air pollution is responsible for 223K lung cancers deaths/yr worldwide – it’s worse than 2nd-hand smoke. #LCSM #LCAM2013

International Agency for Research on Cancer, World Health Organization. Press Release No 221 – IARC: Outdoor air pollution a leading environmental cause of cancer deaths. (17-Oct-2013). Accessed 20-Oct-2013 from http://www.iarc.fr/en/media-centre/iarcnews/pdf/pr221_E.pdf

November 6 Tweet
Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.  #LCSM #LCAM2013 

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 7 Tweet
81% of prostate cancer and 60% of breast cancer cases are diagnosed before they spread. Lung cancer? Only 15%. #LCSM #LCAM2013

 American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 8 Tweet U
S research $ per cancer death is far greater for colorectal (4x), prostate (8.5x) & breast (14x) cancers than lung cancer. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf.

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf.

U.S. Army Medical Research and Materiel Command, Department of Defense. 2012 Congressionally Funded Medical Research Programs. (30-Sep-2012). Accessed from http://cdmrp.army.mil/pubs/annreports/2012annrep/2012annreport.pdf.

NIH Research Portfolio Online Reporting Tools. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). (10-Apr-2013). Accessed from http://report.nih.gov/categorical_spending.aspx.

November 9 Tweet
Lung cancer is the second leading cause of all deaths in the US. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf 

November 10 Tweet
Lung cancer is also linked to radon gas in homes (20,000 deaths/yr), workplace exposure, genetics, & cancer treatment. #LCSM #LCAM2013

US Environmental Protection Agency. Radon. (26-Aug-2013). Accessed from http://www.epa.gov/radon/.

World Health Organization’s Environmental and Occupational Cancers Fact Sheet http://www.who.int/mediacentre/factsheets/fs350/en/

Coté ML et. al. Eur J Cancer. (Sep-2012). Increased risk of lung cancer in individuals with a family history of the disease: a pooled analysis from the International Lung Cancer Consortium. Accessed from http://www.ncbi.nlm.nih.gov/pubmed/?term=22436981

American Cancer Society. Second Cancers Caused by Cancer Treatment. (30-Jan-2012). http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf

My Orycon 2013 Science Panels

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I’m going to Orycon 35, a science fiction convention held November 8-10, 2013, in Portland, Oregon. The programming folks have dreamed up some interesting science panels! I’m especially looking forward to the panel Jay Lake and I are doing on “Living with Late Stage Cancer,” which was very well received at the World Science Fiction Convention in San Antonio last August. If you’re attending Orycon, I hope you’ll attend one of my panels or find me in the halls (I’m not a night owl nowadays, so I’ll be scarce at parties).

The Science of Funding Science
Fri Nov 8 4:00pm-5:00pm (Alaska)
Are we missing out on gaining knowledge because of political correctness?

Living With Late Stage Cancer
Fri Nov 8 5:00pm-6:00pm (Alaska)
What it’s like to live from scan to scan, how we learn about different treatment options, coping when treatment fails, and answering questions from the audience.

Would you go to a doctor whose professors were witch doctors?
Sat Nov 9 10:00am-11:00am (Idaho)
What medicine has gotten right and wrong over the eons.

Do we all really need to know calculus?
Sat Nov 9 1:00pm-2:00pm (Alaska)
Is it really necessary for everyone to graduate from high school knowing physics? How much math do we really use on a daily basis?

I want to get my science on?
Sat Nov 9 4:00pm-5:00pm (Alaska)
Where does the lay person keep up with the latest developments

Ask Dr. Genius: Ad-Lib Answers to Audience Questions
Sat Nov 9 5:00pm-6:00pm (Alaska)
No, really, they’re real scientists, honest. Bring your science questions, and if they don’t have an answer they’ll make something up, and it might even be sort of right.

Cancer sucks-is there hope?
Sun Nov 10 11:00am-12:00pm (Alaska)
New insights into cancer provides glimmers of hope for victims and their families. How are new treatment options shaping up? How soon can we hope for a cure?

Midi-chlorians? Really?!
Sun Nov 10 1:00pm-2:00pm (Alaska)
Best and worst science in the movies.

Dealing with “Why?”

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Some cancer patients become obsessed with the WHYs:  Why do I have cancer?  Why now?  Why me? Why is it in my lung instead of somewhere easier to treat?

If I spent time pondering all the WHYs, I would have less time for LIVING with cancer.

One good thing cancer has done for me is clarifying what’s important. “Important” is spending quality time with family and friends, being kind to and doing something useful for others, appreciating the natural world, learning to be a better person, and taking care of myself as best I can. I am curious by nature, and love to learn the whys of the universe. Yet, in the case of my cancer, the answers would have no beneficial impact on my treatment or what I do with the time I have left.  It’s like being obsessed with a good whodunit novel–nice to know the ending, but who shot JR makes no difference in real life.

I probably will never know exactly when, how or why I developed the type of lung cancer I have, or why it behaves the way it does. And I’m OK with that.

Dear ACS: Please Reschedule the Great American Smokeout

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Dear American Cancer Society,

During Lung Cancer Awareness Month in November, please acknowledge ALL who are afflicted by lung cancer.

Encouraging people to stop smoking is a worthy cause, but must you hold the Great American Smokeout during Lung Cancer Awareness Month? It fuels the unjust stigma attached to lung cancer.

Lung cancer is caused by more factors than just smoking–80% of those newly diagnosed are never smokers (like me) or nonsmokers who quit decades ago. Lung cancer among never smokers is the sixth leading cause of cancer deaths. WHO recently published a study linking lung cancer to air pollution. Other studies link lung cancer to exposure to radon in homes and arsenic in water sources.

All you need to get lung cancer is lungs.

Please acknowledge this publicly, especially during Lung Cancer Awareness Month, and consider moving the Great American Smokeout to any month other than November.

Sincerely,
A never smoker with metastatic lung cancer

Dear friends:
If you agree, please consider signing this petition to the American Cancer Society.
The petition was created by Betsy Thompson for the Lung Cancer Survivors Foundation.

Enjoying the Fall

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Fall announces itself softly
with drifting leaves
in freshened breeze
before the rain

I’m enjoying this fall season more than any other I remember.  The contrasting foliage, quiet fog blankets, torrential rainstorms, and southbound vees of Canada geese seem new and wondrous to me.

I kinda missed the last two falls due to distractions.  Two years ago, I was dealing with the side effects of concurrent chemo-radiation therapy combined with news that I had progressed to metastatic lung cancer.  Last year, after another recurrence despite second line chemo and more radiation, I was scrambling to find a clinical trial.  Being focused on questions of life and death overshadowed little things like the changing of leaves.  It also fueled an awesome case of writer’s block.

I’m hoping to make good use of these cool gray days to rebuild my strength, read good books, declutter the house, and write.  A lot of writing.  I’m years behind on writing.

My productivity is boosted by using my lightbox to counter any drift towards Seasonal Affective Disorder, and nibbling dark chocolate now and then.  I’d love to include the Seattle addiction (coffee) in my regimen, but it disagrees with my cancer pills. I’ll trade being less alert for more alive any day.

Feline overlords Admiral and General are doing their part by keeping my feet warm.  Well, at least one foot.

Gratitude and Stewardship

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I’m grateful to be here.  Actually, I’m grateful to be anywhere.  I’m grateful to be alive.  The fact that I’m alive is a modern-day medical miracle.

In May of 2011, after a few months of a persistent cough, I was diagnosed with pneumonia caused by advanced lung cancer.  No, I never smoked anything except a salmon.  Five months after diagnosis, despite chemo and radiation, the cancer spread outside my chest and I was given at most two years to live.  A year later, after more treatment and another recurrence, I learned my cancer had a rare mutation.  Last October, I found a clinical trial that could treat that mutation with an experimental pill, and I flew to Denver to get it.  In January, I achieved the dream of all metastatic cancer patients: No Evidence of Disease.  My cancer is no longer detectable.

I am overwhelmingly grateful for everything and everyone that has brought me to this state of grace: medical science that discovered new ways to treat my condition, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, and all the prayers and good wishes lifting me up throughout my cancer journey.  Thank you.  I am truly blessed.

I am not cured. The trial drug only suppresses my cancer, and I have some permanent side effects.  I’ll be in treatment for the rest of my days.  Clinical trials will hopefully keep me feeling comfortable and capable for many months – even years. I am satisfied with living however long I might have.

Being given a second chance at life tends to give one a different perspective.  Colors are brighter.  A warm breeze rustling the trees makes the whole day worthwhile. Time spent with family and friends becomes precious.

A second chance at life also makes one introspective.  Why was I spared when others died?  Why does my mutation have an effective treatment when others don’t?  Why am I able to see one of the best lung cancer doctors in the world when many patients can’t afford proper treatment?

Why am I still here? What purpose does the universe have for me?

Part of the answer to why I’m still here is, I am blessed with gifts that help me survive my cancer journey.  I’m able to understand the medical science and my treatment.  I’m able to explain what I’ve learned.  And I’m able to advocate for myself with healthcare providers.

Yet I am just a steward of these gifts that were bestowed on me. Understanding my gifts has led me to a new purpose: I am here to help other lung cancer patients. I strongly feel this is my calling in the time I have left.

Lung cancer has a stigma attached to it.  Few people know that 80% of those newly diagnosed with lung cancer are nonsmokers or never smokers.  There is more to lung cancer than just smoking.  Yet we are the lepers of the cancer community. 

For this reason, some are ashamed to admit they have lung cancer.  Most don’t know about the new treatments like the one I’m taking–even some doctors don’t know. Patients don’t know where to turn for answers. 

Lung cancer patients need more than compassion. They need information.  They need HOPE.

After considerable thought, I decided the best way to use my gifts was to go public about my lung cancer. At first, I only shared my story online with friends and lung cancer communities.  Eventually I started blogging (which is essentially a journal open to the world on the Internet) and began speaking publicly about my cancer.

Going public with my lung cancer experience has already had an impact. As I’d hoped, it shows patients that people can live with metastatic lung cancer, and encourages them to ask questions about their treatment. 

But going public has also brought completely unexpected benefits. It helps families understand what their loved ones who have lung cancer are experiencing. It gives hospital chaplains insight into their patients’ needs and feelings. It demonstrates to doctors that patients can be partners in their own care. It reveals to researchers how their work makes a difference in the lives of real patients.

In addition, I’ve realized a personal health benefit in sharing the gifts I was given to steward. Having a purpose gets me through the tougher parts of cancer treatment.  It won’t heal my cancer, but it does help me live a healthier, happier life.

And it all started with being grateful that I’m alive.

Finding Good Biomedical Science Articles

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Every day patients with cancer and other health issue turn to the Internet to learn about symptoms, causes, and treatments for their conditions. Consumers have many good options for consulting “Dr. Google.” Some websites (like mayoclinic.com) have outstanding credentials for providing medical information. Other sites like PubMed are good places to search for biomedical journal articles.

But not all online biomedical journal articles contain good science.

Science magazine–a premier, peer-reviewed science journal–recently conducted an experiment in which a correspondent submitted a biomedical research paper to open access journals for publication. Open access journals rely on author fees rather than subscriptions. The paper announced a new treatment for cancer derived from lichens. Its science and conclusions were clearly flawed, which should have been caught by each journal’s peer review process. Yet many of the journals published the flawed paper anyway.

This is why I stick to PubMed and journals of demonstrated quality as sources for biomedical articles. It isn’t a foolproof method for finding good science, but it’s better than just googling a topic. You simply can’t believe every headline or abstract you read.

Scanxiety, Round 30 (ish)

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Tomorrow I’ll have a PET-CT scan plus a brain MRI to determine if my cancer has recurred. I’ve had around thirty scans of one type of another since my cancer journey began twenty-nine months ago. In my current clinical trial, I have a PET-CT every eight weeks and a brain MRI every six months.

You’d think scans would be old news to me by now. In some ways, they are. This past week was pretty normal in most respects, without undue anxiety or sleeping problems. My scanxiety’s been lessening as I accrue more months of NED (No Evidence of Disease) on Xalkori. Life continues to inch towards normalcy. At times I even forget that I have metastatic lung cancer.

I’m not totally immune to scanxiety, however. It finally hit me yesterday evening. When packing for my flight to my clinical trial in Denver, my brain seemed to fight me every step of the way. When hubby came home after working late, I couldn’t shift gears to get my packing prep out of his way. When I finally got to bed, I didn’t fall asleep for hours. When driving to the airport this morning, my mind kept wandering to somewhere other than the highway in front of me. When going through airport security with my oxygen concentrator, I couldn’t help remembering I was a lung cancer patient traveling for treatment.

Despite all that, I’m more hopeful than I’ve ever been going into a scan. I know I’ll likely have to deal with active lung cancer again eventually. Hopefully I’ve finally trained October not to bring me a recurrence (it has the past two years).

Feelings … Nothing More Than Feelings

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This morning as I pulled into my garage after a quick errand, a favorite 80s song came on the radio: “Same Old Lang Syne” by Dan Fogelberg. Although I had a list of chores to tackle, nothing was urgent. I turned off the car and settled with my newly-acquired Starbucks smoothie to listen for a few minutes.

The song tells of a musician who encounters his old lover in a grocery store on a snowy Christmas Eve. Its imagery is very poignant: joy at an unexpected meeting, reminiscing over drinks in her car, trying unsuccessfully to talk about how they truly felt, going their separate ways. I’ve had one or two similar experiences in my life. As the music was ending, I found myself awash in regret and loss for the characters, and for me.

And then … I felt exhilaration. Not because the song was sad, but because I FEEL — intensely, overwhelmingly, to the exclusion of everything else, if only for a moment. Because I am still alive to feel it. Because emotions are part of this human experience.

And without lung cancer, I might never have appreciated that.

Inspired, I grabbed my purse and smoothie and hurried in to write. What a great way to start the day!