Tweets for #LCAM2013 Week 3 — Hope for Lung Cancer Patients

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the third week of Lung Cancer Awareness Month (#LCAM2013) focus on HOPE for lung cancer patients: early detection, advances in treatment, personalized medicine, and research results.  For Week 1 tweets, click here.  For Week 2 tweets, click here. Facts for all weeks of #LCAM2013 are collected here.


November 18 tweet
National Lung Screening Trial showed low-dose helical CT scans can lower mortality from #lungcancer at least 20%. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). National Lung Screening Trial (NLST). Retrieved 17-Nov-2013 from

November 19 tweet

Newly-diagnosed #lungcancer patients should consider getting a second opinion about diagnosis and treatment. #LCAM2013 #LCSM

Seattle Cancer Care Alliance. (n.d.). For Newly Diagnosed:  Seeking a Second Opinion. Retrieved 17-Nov-2013 from

November 20 tweet

Lobectomy performed by video assisted thoracoscopic surgery results in shorter hospital stay, quicker recovery. #LCAM2013 #LCSM

Swanson, SJ et al. (2012 Apr). Video-assisted thoracoscopic lobectomy is less costly and morbid than open lobectomy: a retrospective multiinstitutional database analysis. The Annals of Thoracic Surgery; 93(4):1027-32.

Nicastri, DG et al. (2008 Mar). Thoracoscopic lobectomy: report on safety, discharge independence, pain, and chemotherapy tolerance. The Journals of Thoracic and Cardiovascular Surgery; 135(3):642-7. Retrieved from

November 21 tweet

Patients whose #lungcancer tumors had driving mutations and who received targeted therapy live longer. #LCAM2013 #LCSM

Kris, M.G. et al. (2013, Oct 29). “Treatment with Therapies Matched to Oncogenic Drivers Improves Survival in Patients with Lung Cancers: Results from The Lung Cancer Mutation Consortium (LCMC).” 15th World Conference on Lung Cancer, Sydney, Australia: Abstract PL03.  Read abstract here.

November 22 tweet

Patients with #lungcancer who participate in #cancer clinical trials live longer. #LCAM2013 #LCSM

Chow, CJ et al.  (2013 Apr). Does enrollment in cancer trials improve survival? Journal of the American College of Surgeons 216(4):774-80. Retrieved from

November 23 tweet

Immune-based therapy and clinical trials show potential for #lungcancer treatment. #LCAM2013 #LCSM

National Cancer Institute. (n.d.)  Expanding the Playing Field: Immune-Based Therapy Shows Potential for Lung, Other Cancers. Retrieved 17-Nov-2013 from

Gillis, Bonnie. (2013 Sep 29). PD-L1 Inhibitor Delivers Rapid, Durable Responses in Advanced NSCLC. Retrieved 17-Nov-2013 from

November 24 tweet

Palliative care improves survival and quality of life for advanced #lungcancer patients. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer. Retrieved 17-Nov-2013 from

Cancer: The Harsh Story Of Lung Cancer vs Breast Cancer

This blog post highlights some of the reasons the stigma of lung cancer persists. Very well written, and worth the read.

Update July 2, 2020:
My original post was a reblog of a Nov-2013 cancergeek WordPress blog which has since been deleted.  However, its iconic picture was archived by @LungCancerFaces (Deana Hendrickson) on Twitter.

The picture, which compares Googled images of “breast cancer people” (on the left) vs “lung cancer people” (on the right), clearly shows that lung cancer has an image problem. Breast cancer has smiling faces, pink ribbons, and throngs of supporters.  Lung cancer has images of diseased lungs, dying people, and smoking.  In many people’s minds, “lung cancer” equals “smoking.” This clearly captures the stigma the lung cancer community faces. This stigma has stifled research funding, fueled physician nihilism, impeded good patient care, and inhibited community and family support of lung cancer patients.

Cancergeek, the author of the original blog post, wrote a Medium article a year later that carried much of the same sentiment.


{I will preface this post by saying that anyone that is diagnosed with cancer has their world changed forever. The clock begins to tick, world closes in on you, and your world is changed in a way that will never be the same. I am being provocative. I am challenging.}

For those of you that I have had the privilege of meeting, and for those of you I have not met, you know and will come to find that cancer is the story of my life. It is what I have dedicated my professional career to try and make an impact. I am fortunate enough to be able to combine my passion, my talent, and my wisdom all into one single focus.

In October I made a commitment to wear a bow tie the same color of the cancer awareness for that specific month. October was easy, it was Breast…

View original post 1,269 more words

Tweets for #LCAM2013 Week 2 — Personal Stories

This was posted today on the #LCSM website. Throughout November, please tweet a lung cancer fact at noon Eastern Time for Lung Cancer Awareness Month (#LCAM2013) and help us trend!

Tweets for #LCAM2013 Week 2 — Personal Stories

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.


November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeasha #LCAM2013 #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett Taylor, college athlete, diagnosed with LC at 28 #LCAM2013 #LCSM

November 13 Tweet
Faces of #Lungcancer: 7 Canadians Share Their Stories #LCAM2013 #LCSM

November 14 Tweet
Faces of #Lungcancer: Janet Freeman-Daily “Why I’m in a Clinical Trial.” #LCAM2013 #LCSM

November 15 Tweet
Faces of #Lungcancer: 1000 faces, 1000 unique stories #LCAM2013 #LCSM

November 16 Tweet
Faces of #Lungcancer: Tonya Sears lost 4 family members to LC — now she’s an advocate #LCAM2013 #LCSM

November 17 Tweet
Faces of #Lungcancer: The Bonnie J. Addario Story #LCAM2013 #LCSM


For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.


November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeasha #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett…

View original post 92 more words

Why I’m in a Clinical Trial

The fact that I’m alive is a modern-day medical miracle. And I owe it to clinical trials.

In early 2011, I was in good physical shape, slightly overweight, eating healthy and exercising regularly. After I tolerated a nagging, slight cough for a few months without any relief from antibiotics, my doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. Before I arrived home from the clinic, she called: the radiologist saw a mass in my lung. Two days later, a Friday, I saw a pulmonologist who performed a biopsy. He called me Tuesday evening, May 10, 2011, with the news: at age 55, as a never smoker, I had lung cancer.

Scans and tests over two weeks rendered a diagnosis of stage IIIA non-small-cell adenocarcinoma complicated by obstructive pneumonia. I was not a candidate for surgery, but the oncologist considered me curable. My tumor didn’t have either the EGFR or ALK mutations.  After ten days in the hospital and weeks of IV antibiotics, I recovered enough to get radiation therapy and low-dose chemotherapy, followed by one full dose of chemo (my side effects were too severe to allow me to have more chemo). I finished first-line treatment in early August 2011.

My post-treatment CT scan in late September 2011 showed the lymph nodes were almost completely clean, and the tumor had shrunk by over 90%. I thought I had a great chance at a cure. In the next two weeks, I underwent several tests to determine if I was healthy enough to have the lung removed. One of the tests was a PET scan, which found a hot spot on my right front collarbone. A few days, later two lymph nodes were removed in an open biopsy and found to be more of the same cancer. I was now stage IV–metastatic lung cancer. No lung surgery for me. The radiation oncologist advised waiting rather than radiating because I’d had a large volume of lung zapped already.  My oncologist also advised waiting a few months before starting a new chemo to give my body time to recover.

I decided to learn more about treatment options during those few months. From my participation in the Lung Cancer Support Community, I’d learned about the Lung Cancer Mutation Consortium Protocol clinical trial, which tested for ten mutations in lung cancer tumors. I had lots of slides courtesy of my two new tumors; testing for more mutations sounded hopeful, and I liked the idea of contributing in some small way to the science looking for a lung cancer cure. I searched for the trial on and emailed its contact person at the University of Colorado in Denver. I couldn’t travel to Denver (my pulmonologist thought my hollow tumor might cause a collapsed lung if I flew), but UC accepted me into the trial and tested my tissue anyway.  A few weeks later I received a call from the head of the trial, Dr. Paul Bunn: I had none of the ten mutations.

In two months, a visible 3-inch tumor grew by my right collarbone in the area where the lymph nodes had been removed. I had a CT scan the day after Christmas, met with my oncologist to discuss treatment, and had a power port installed. After six rounds of chemo over five months, CT and brain MRI scans showed all my original tumors were gone, no new tumors had appeared, and the collarbone tumor had shrunk over 90%. We decided to go for a possible cure with more radiation.  Six weeks later, my Sep 2012 PET-CT scan showed the original tumors were gone and the collarbone tumor was dead. However, I had two new nodules suspicious for cancer, this time in my right lung. Twice now I’d recurred within two months after finishing treatment. What to do next?

Someone on the forum suggested that because I was a young, healthy, never smoker with adenocarcinoma, I fit the profile of patients who had new mutation called ROS1. The poster was in a ROS1 clinical trial in Boston, but the trial was also at University of Colorado. I asked my oncologist about ROS1 testing, but he hadn’t heard of it (the research had been published just nine months earlier). While visiting family in Denver, I arranged to meet with Dr. Bunn and learned UC now tested for new mutations, including ROS1 and RET, and that my tumor had a 10-20% chance of having one of them.  I agreed to let UC test my remaining slides.

I had a biopsy a week later. The pulmonologist said he got a good sampling of the larger nodule but couldn’t find any cancer cells. We decided to wait a month and do another CT scan to see if either nodule grew. The very next day, an email from Dr. Bunn told me I tested positive for ROS1. UC had an opening in a clinical trial that involved a pill called Xalkori, which targeted cells having the ROS1 mutation.  Since I didn’t have a biopsy confirming cancer, Dr. Bunn offered to hold a trial slot for me pending results of my next scan.

My October 2012 chest CT showed the smaller nodule grew nearly 50% in one month. I called UC the next morning and started the process to apply for the ROS1 clinical trial. They agreed to consider me without a biopsy. I scrambled to collect all my medical files and scan CDs. Five days later I flew to Denver for two weeks, hoping I’d pass the screening and be accepted into the trial. I took my first Xalkori pill November 5, 2012.

For the next sixty days, I flew to Denver every two weeks, departing Seattle on Monday and returning home Wednesday. I had blood and urine tests every visit, along with other tests (like EKGs and eye exams), and a clinic visit at whichI met with the doctor to review test results and discuss symptoms. I then flew home with two weeks worth of pills. The first PET-CT scan on New Years Eve showed my two lung nodules were gone and no new hot spots—my first clean scan in 20 months of lung cancer. The side effects I experienced were far easier than either chemo had been. I had my life back.

After the first scan, my visits to UC shifted to every four weeks; after ten drug cycles, they shifted to every eight weeks. Now at UC visits I have blood work, a PET-CT scan, a visit with my UC oncologist Dr. Ross Camidge, and a brain MRI every six months. I have blood work done at my home clinic in off months.

I am not cured–the Xalkori only suppresses my cancer. However, Dr. Camidge has a plan for treating my recurrences.  It’s an odd existence, living from scan to scan. I’ll be in treatment for the rest of my days. Yet I’m hopeful that if/when each clinical trial stops working, a better one will be waiting for me.  Maybe they’ll find a cure for me before I die.

And in the meantime, I’m living.

Tweet for #LCAM2013 (Lung Cancer Awareness Month)


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.


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

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 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, 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 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, 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

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

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

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

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from

U.S. Army Medical Research and Materiel Command, Department of Defense. 2012 Congressionally Funded Medical Research Programs. (30-Sep-2012). Accessed from

NIH Research Portfolio Online Reporting Tools. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). (10-Apr-2013). Accessed from

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 

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

World Health Organization’s Environmental and Occupational Cancers Fact Sheet

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

American Cancer Society. Second Cancers Caused by Cancer Treatment. (30-Jan-2012).

My Orycon 2013 Science Panels

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?”

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

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.

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

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

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.