Get My Book FREE this Sunday!

Friends and Family,

This Sunday, June 3rd, is National Cancer Survivor Day! In honor of all cancer survivors, the eBook version of my book will be FREE on Sunday through Amazon! You can also get a free Kindle reader through Amazon, so you can read it on any device.

Feedback on the book has been overwhelming. I received this text from my friend Ginny this morning:

“I just spoke with a newly diagnosed LC buddy in Florida. We talked for 1:40 minutes and I read him excerpts from your book. He plans to buy it today and he said our talk and your book lifted his spirits  and he felt more hope than he has since being diagnosed three weeks ago!!”

This melts my heart, and makes the whole process of writing the book worth it. Please tell anyone you know with cancer about this book. Here’s the link: https://www.amazon.com/Second-Wind-Thriving-Dann-Wonser-ebook/dp/B07C9BWWB7/ref=sr_1_1?ie=UTF8&qid=1527963713&sr=8-1&keywords=second+wind+thriving+with+cancer

I also want to remind you about the Lung Love Run/Walk coming up on Saturday, June 23rd at Laurelhurst Park in Portland. We are raising awareness, and funding for lung cancer research. Lung cancer kills almost twice as many women as breast cancer, yet breast cancer receives over seven times as much funding per life lost. Lung cancer receives the lowest funding of any of the major cancers, yet kills more people than the next three leading cancers combined. We don’t want to take funding away from the other cancers. We just want funding parity for the leading cause of cancer death. (Source:  https://lungcanceralliance.org/wp-content/uploads/2018/01/LCA_Women_Fact-Sheet_2018_Final.pdf).

If you would like to join us on a beautiful June morning, under the shade of the trees in gorgeous Laurelhurst park, click here, and join team Live Lung and Prosper.

If you would like to donate, click here.

And, even better, if you would like to form your own team, click here. The best way to grow an event like this is to grow the number of teams.

Love,

Dann

From Wounded to Warrior

Friends and Family,

Genevieve and I just got back from a two-for one trip to Washington, DC. The second part of the trip, the LUNGevity HOPE Summit, is a lung cancer conference. What gives me the biggest buzz at this conference are the people I meet.

I met one woman three years ago, just  months after she was diagnosed. Laura looked so terrified and vulnerable that I just wanted to put my arm around her and tell her everything would be alright. But that would not have been real. The best I could do was tell her my story, and to let her see by example that at least some people are still alive nine years later.

Fast-forward three years, and Genevieve and I were planning to attend a rally on Capitol Hill and do some lobbying before this year’s HOPE Summit. Laura recently had to quit her full-time job, but still has enough in the tank to put her background as an attorney to organize rallies and lobbying (on Facebook: Life and Breath – LAB). On a training video conference call she led, Laura’s two bouncy little kids, maybe five and seven years old, kept running into the room, jumping up and down in front of the camera. Laura was passionately describing the best practices for lobbying, pausing every now and then to shoo her kids out of the room. I scrolled through the video screens of the 40 other participants, and they were all trying not to snicker, just like us. Laura would get a little further through the agenda, and then another kid would pop in and photobomb. While embarrassing for mom, it was hilarious for the rest of us.

Once we got to the rally, Laura stood in front of the 200+ protesters, whipping the crowd into a frenzy of moral outrage over how lung cancer kills more people than the next three leading cancers (yes, this includes breast cancer) combined, yet the National Institutes for Health give only 6% of their cancer research dollars to lung cancer research. She had us screaming so loud that the other groups in the area, a block or more away, all turned to see what the fuss was about. Way to go, Laura! In three years, you have gone from wounded bird to cancer warrior!

But there’s more to the story. In the afternoon, we all scattered to lobby our respective elected representatives.  Genevieve, our friend Violet and I were just finishing our day of lobbying, when we ran into Laura on the street. She was fighting mad about the professional lung cancer advocacy organizations that they had coordinated with. “I told them that what they were pushing was really lame. They’re asking for one more ridiculous study that will be put on a shelf and never looked at again, and a few million dollars. That’s NOTHING to Congress. That’ not even a ROUNDING ERROR to them. I told them that’s not good enough. I’m going to be dead before my kids get out of elementary school, so your pace doesn’t work for me. It’s not about you. It’s about me!” 

I saw the tears in her eyes, along with the fire. I felt deeply for her, and for her husband standing next to us, and for those two cute little curtain-climbers that will have to learn the meaning of cancer way too soon. And I realized that, as much as I will fight it, the chances are good that what she is saying is true for me as well. If this is the pace of increase for research spending, it won’t be in time for Laura or for me.

And while Laura is right, that this funding request is completely dwarfed by the needs, it still brings crucial dollars to lung cancer research for those that follow. There have been seventeen new drugs approved for lung cancer treatment in the last three years alone. That is an explosion! There is reason for hope, which is why Genevieve and I will be back in DC in July, lobbying Congress again. That is why I am asking you to join my team for the Portland Lung Love Run/Walk on Saturday, June 23rd, or to donate to our team (Live Lung and Prosper), by following this link: https://bit.ly/2I898kl.

I thought about how Laura looked that first time I met her three years ago. And then I thought about the elected representatives Laura was about to meet. This time, I thought, it’s not going to be Laura that looks like a deer in the headlights.

Love,

Dann

What to Do on a Beautiful June Day

The Lung Love Run Walk Portland is coming up again, and I’m excited! Join us on Saturday, June 23rd, for the walk. Our goal this year is to have 30 team members, and to raise $2,500 for the Lung Cancer Alliance.

As you are aware, I am passionate about this cause. I am still alive twelve years after I was first diagnosed with lung cancer, and that has only been possible because of lung cancer research. I have been on three treatments that didn’t even exist the first time I was diagnosed, something that is not possible without lung cancer research. But there are still huge holes in the options available. I have lost friends to this deadly disease, and the next treatment needed to keep me alive may not have been invented yet. We need the research funds now.

Next Thursday, Genevieve and I will be going to Washington, DC for a lung cancer rally on Capitol Hill to raise awareness of the 433 people a day who die of lung cancer. That afternoon, we will have private appointments with Senator Ron Wyden, Senator Jeff Merkley’s staff, and Representative Suzanne Bonamici, where we will be pressing for lung cancer research funding. I was stunned to learn that the National Institutes of Health only spend 6% of their research dollars on lung cancer. Since lung cancer kills more people than the next three cancers(breast, ovarian, and prostate) combined, that is unconscionable.

We borrowed our agenda from the Lung Cancer Alliance, and will return in July with that group for an organized lobbying trip to press the agenda again. I lobbied with this group two years ago, and it was an empowering experience, having influence on our government.  

So if you would like to join us on a beautiful June morning, under the shade of the trees in gorgeous Laurelhurst park, click here, and join team Live Lung and Prosper.

If you would like to donate, click here.

And, even better, if you would like to form your own team, click here. The best way to grow an event like this is to grow the number of teams.

Thank you for your ongoing support in a million different ways.

Love,

Dann

Luckiest Man (Still) Alive

Friends and Family,

New opportunities are rapidly coming my way to advocate for people with lung cancer. I now jump on these opportunities, because there are so few of us healthy enough, and who have survived lung cancer long enough, to tell our stories.

One of those opportunities just came up. The American Cancer Society asked me to speak on behalf of a healthcare consumer protection bill that is before the Oregon State Senate. What’s that saying? Fools rush in.

Today I testified. I confess that it was a nerve-racking experience, mostly because my testimony was intentionally very personal. Raw might be a better description.

Genevieve and I have both been sharing our stories in some public forums, but this is the first video. Even if you have known me since before I had cancer, you will see a side of me that you may not recognize.

If you would like to see it, go to  http://oregon.granicus.com/MediaPlayer.php?clip_id=22596 and  skip to 56:06. It’s nine minutes. Fair warning: It’s a tear-jerker, or at least it was for me.

If this bill passes, everyone, lung cancer or not, would be able to consider the financial impact of their medication options and insurance plans before committing. It also means that insurance companies can’t pull the rug out from under you once you are locked into a plan for the year. Here are the specifics of this bill:

* Require drug formularies be electronically searchable by drug name.

* Require disclosure of coverage and cost information for drugs administered in a provider’s office and typically covered under the plan’s medical benefit.

* Require disclosure of a patient’s dollar cost estimate for medications subject to co-insurance.

* Prohibits insurance carriers from moving a drug to a higher-cost-tier

* Prohibits insurance carriers from removing a drug from a formulary unless a warning has been issued by FDA.

Tennessee, Florida, and Massachusetts are all considering similar legislation.

I am grateful to remain healthy enough to share my story for the benefit of others. As you will hear on the video, I am grateful to each of you for your love and support, which is a good part of why I am still alive. Thank you for being there for me.

Love,

Dann

TV Interview for Lung Cancer Awareness Month

I was interviewed by local television station KGW for Lung Cancer Awareness Month. Fastest three and a half minutes of my life! Here's the link:

 http://www.kgw.com/entertainment/television/programs/portland-today/non-smoker-s-lung-cancer-fight/351810598

Advocacy, Staying Alive, and the Zombie Apocalypse

Friends and Family,

You know how us guys are not known for listening very well? This week, I did something even more rare. I listened to myself.

Last Friday Genevieve and I were part of the Lung Force Expo, and I gave a talk on how to be your own advocate. Preparing for it got me thinking that there might be even more things I could do for myself, so I took another look.

 The basic idea is that, no matter how good your doctor is, YOU have a lot more invested in how this turns out than they do. That means it’s on you, or in this case me, to make sure things go the best they possibly can. You can’t do that if you’re passive.

 First, I started thinking about Xgeva, the bone-strengthening injections that I’ve been getting for about three years. Strengthening porous cancer-riddled bones is good, but how much stronger will they get if I keep getting these injections? The downside of these injections is the risk of necrosis, or killing off the bone. That includes the jaw, so I get asked about dental work and jaw pain every time I go in. Makes me a little nervous. So on this trip to San Diego, I asked my oncologist, is it time to stop? “Good question,” he says, and I can tell it hasn’t occurred to him before now. “The research says one year is enough for the other brand, Zometa. You’ve been on Xgeva for three. You can probably stop now.” That means great news! My risk of turning into a zombie just went way down! The apocalypse will have to wait.

My next question was about this clinical trial. Almost a year ago, I had the choice of going off the trial when my trial drug was approved, but I chose to stay on the trial to : 1) help with the research, since there were only 440 people in the world on this trial to begin with, and most are no longer on it; and 2) to stay connected with my San Diego oncologist, whom I think has an excellent grasp of the latest lung cancer research. Here’s that story: http://www.dannwonser.com/blog/decision-time-for-my-treatment/12/3/2015.

 HOWEVER. Partly because it’s been bothering me from the beginning, and partly because my friend Linnea Olson got me thinking more about it after going nova on her own blog about excess radiation– see https://outlivinglungcancer.com/2016/10/03/when-noncompliance-is-your-best-option/ - I started questioning the trial all over. So I had the discussion with my oncologist again. My questions were better this time around:

1.       If I skip every other scan, will they kick me out of the clinical trial? And…

2.       If I’m not in the clinical trial, can I see you anyway?

 I got the answers I wanted. Dr. Patel emailed the trial sponsor about my ultimatum even before I left the clinic for the day, and is willing to see me even if I’m kicked off the trial.

 So the bottom line: I will check on my insurance, to make sure they cover Tagrisso, and he will tell the clinical trial people that I will drop out if they don’t agree to a reduced CT schedule. Either way, it looks like a win for me. It just took being ferocious.

And did I forget to mention, in the midst of all this ferocious self-advocacy, that my scan results were again good? :-) Twenty-five months on this trial, and no signs of growth! Woohoo! The more time I get, the more time there is for the NEXT new drug to get developed! The longer I stay alive, the better my chances get that I can outrun this pesky disease. Life is pretty great, isn’t it?

So if you’re interested, I’ll tell you what I shared about how to be your own advocate:

 You can’t wait for the medical experts to do it for you. They may care, but it is not their life on the line.  They may also be very knowledgeable, but that doesn’t mean they always have the best judgement.

 Being passive can cost you your life, and it almost cost me mine. The first time I had cancer, I was treated successfully and was NED (No Evidence of Disease) with the help of the top lung cancer specialist in the Northwest. When she left town, I was handed off to one of her partners, but I didn’t check his credentials. MY FIRST MISTAKE. He was an expert, but not in what I needed. He specialized in prostate cancer. That explains a LOT about those exams….

 When something weird showed up in my lung CT scan, he didn’t know what it was, but didn’t think it was cancer, so he suggested waiting four months until the next scan. MY NEXT BIG MISTAKE: I didn’t get a second opinion. This could have gotten me killed. When it turned out to be cancer and I switched doctors, my cancer remained manageable, but then that oncologist left town. MISTAKE #3: I didn’t check the new doc’s credentials. I must be a slow learner! However, this time I was a little more on the ball. When the cancer started growing again, he had no answers, so I am the one who told him about the clinical trial I am in now.

 There are other stories. Lysa’s doc wanted to take her off a successful treatment to try something new, until she insisted that nothing change until there was a problem. Another friend lost his life when his oncologist wouldn’t re-test his mutation after his cancer started growing again. By the time she tested, it was too late. He wasn’t well enough to travel to the clinical trial that he qualified for.

 Another woman asked her doctor for molecular testing of her cancer. He was incensed that a mere patient would think she knew more than he did about lung cancer, and he refused. She fired him.

 There are so many stories I have heard. They all point to the same things:

·         Check the credentials of your doctor and your clinic.

·         Make sure you have a lung cancer specialist. A specialist in six different cancers is not a specialist.

·         Get molecular testing.

·         If the cancer starts growing again, get molecular testing again.

·         Do your own research, either by piggybacking on what other survivors have learned, or looking at the data yourself.

·         Get a second opinion. Your doctor may be brilliant, but that doesn’t mean that their judgment is flawless, or that they would make the same choices that you would.

·         Make waves if you need to. It’s worth risking hurting your doctor’s feelings if it means that it may save your life.

·         Treat your doctor like he or she is your consultant.

·         Get empowered by getting knowledgeable. Check out the Resources tab. Below the survivor blogs is a master list of 21 professional websites, along with a description of what each one offers.

 LAST THING: I will be on the Portland Today show on KGW TV this coming Monday, November 14th, from 11:00-12:00 as part of Lung Cancer Awareness Month. Watch it if you get the chance!

 Love,

 Dann

Invitation to Upcoming Events

Friends and Family,

I’m happy to say that there is no news on the health front at this time. It will be a couple of weeks before I get my next scan results. However, I did want to invite you to join us at two different events where Genevieve and I will be involved:

ACS CAN (American Cancer Society Cancer Action Network): Thursday, November 10th, 7:30 – 9:00 at the MAC Club in Portland. It’s a 90 minute program that will start with me sharing my story of living with lung cancer for ten years, followed by a panel, including me, discussing personalized medicine in lung cancer. I believe that there is no cost. Here’s the link to the event:  http://www.acscan.org/events/view/event/2667

Lung Force Expo: November 4th, 10 AM – 3 PM: Packed conference with something for everyone connected with lung cancer. I will give a talk on how to be your own advocate, and Genevieve will tell her story as a caregiver.  See http://action.lung.org/site/TR/LUNGFORCE/ALAMP_Mountain_Pacific?pg=entry&fr_id=14582 for full program and registration. There are separate tracks for survivors/caregivers, and for health care providers.

Love,

Dann

Lung Force Expo is Coming to Oregon!

Friends, this is the event where I will be leading a session called "Being Your Own Advocate," and Genevieve will be sharing her story as a caregiver. There is much more going on. I love the agenda for this year's event. Here's the official presser: Find resources, information and support at the LUNG FORCE Expo. This one-day, educational event at the Monarch Hotel and Conference Center on 11/4/16 is designed for lung cancer survivors and their caregivers to learn more about the latest resources, research and developments related to lung cancer. To learn more check out: http://LUNGFORCE.org/Expo.

Pass it Forward: I Need Your Advocacy Stories!

Friends, 

I've got something exciting going on, and I need your help. We, meaning the American Lung Association with the help of some fellow survivors and some health care professionals, are putting on a conference under the "Lung Force Expo" banner. I will be leading one of the sessions for survivors, titled "Being Your Own Advocate." I will be sharing my own stories of some of things that Genevieve and I have done that have helped keep me alive. I will also include stories from as many other survivors (you!) as possible, so the survivors who attend get a really great cross-section of ideas of ways that they can use to improve their chances of survival. By sharing your stories, you will be empowering others to find ways to stay alive!

To give you an idea, some of the examples that I will be using include the hoops that I jumped through to get into a clinical trial that my oncologist didn't even know about, which is a thousand miles from my home; switching doctors when my oncologist's office was unresponsive after my cancer grew; and Genevieve's advocacy to get my oncologist to start me on a med without waiting for insurance approval (http://www.dannwonser.com/blog/2011/09/chemo-update-its-about-love-september.html).

I have gathered a few other examples from survivors over the years, but not nearly enough. I need your stories! You can tell me in two sentences, or write a full two-page story about your experience. It will be anonymous, unless you specifically give your permission to use your name. You will be helping other survivors to become better advocates for themselves.

Don't worry about whether your example meets any kind of criteria. If you saw it as advocating for yourself, that sounds pretty good to me. Chances are it is better than you think for someone just starting out with cancer.

Let's give them everything we've got, and empower them! 

Thank you,

Dann

Back in Washington, DC... Again???

Friends and Family,

If you would have told me a year ago that I would be lobbying senators and representatives in Washington, DC, I would have thought you were nuts. Since that’s exactly what happened last week, maybe I’m the one who’s nuts. How did I get myself into this???

Part of this answer is that I have been given an exceptionally rare gift for someone with Stage IV lung cancer: I am still alive after almost ten years. It is important to me to make good use of this gift.

Here’s the other part: The Lung Cancer Alliance puts on an annual Lung Cancer Summit. Even though I thought the description of the summit was vague, and I had just gotten back from the LUNGevity HOPE Summit in DC twelve days earlier, I signed up and held my breath. Imagine my surprise when I found out that the entire summit was organized around prepping100 survivors, caregivers, and other advocates to lobby our government!

After a day of training, we stormed the Hill. Oregon and Washington people went as a team, and met with the offices of four senators and five representatives. This is not an easy logistical feat: You meet when they tell you that you can meet. That meant that we walked over 11,000 steps (5+ miles) crisscrossing from the House to the Senate side of the Capital Mall, while getting maximum use of our umbrellas.

Although most of the time we met with staffers, three of our meetings were with our leaders themselves. My personal highlight was meeting Rep. Suzanne Bonamici from my district, who was exceptionally receptive and open to new information, not to mention charming. Rep Greg Walden was the biggest surprise: He was gracious beyond imagination, and openly supportive. TV coverage doesn’t tell you everything.

All of the staffers we met with seemed in support of our agenda by the time we left. Many told us that our visit made a difference, and that they had never had anyone talk with them about lung cancer before. Almost everyone we talked with had been touched by cancer in one way or another, and then touched again by our stories.

Dawn, Charlie, Cecilia, Mary, Ginny, and me in front of Sen. Ron Wyden's office

Our biggest success was at the end of the day. We were asking all of our leaders to sign on to a bill ( it’s a mouthful – “Women and Lung Cancer Research and Preventative Services Act of 2016”) that was being introduced that day in both the House and the Senate, with bipartisan support. WHAT? Bipartisan support for ANYTHING in 2016? Sen. Maria Cantwell agreed to be an original sponsor. That meant we had sponsors from both parties, in both houses, which is what our leaders were waiting for before introducing the bill. By the time we got back to our hotel, the bill was introduced in both the House and the Senate!

The rest of our agenda was to ask each of the Representatives to join the Lung Cancer Congressional Caucus (keep them informed, band together on issues), and to seek increased funding/more parity for lung cancer research. It was my job to bring awareness to this need. I shared with them that, although lung cancer kills more people than the next three cancers COMBINED (breast, prostate, and colon), and more women than breast and all gynecological cancers combined, the funding is not on par. Funding is 4x greater for colon cancer, 6x greater for prostate cancer, and 13x greater for breast cancer. Yet the survival rate for lung cancer is still a pitiful fraction of what it is for those other cancers.

Okay, I’m back off my soapbox for now. Maybe until next year, but I won’t promise.

Meanwhile, I will do what I can to help out the Lung Cancer Alliance. We are having the annual Lung Love Run/Walk on Saturday, June 11that Laurelhurst Park. I would like to invite you to join my team, Live Lung and Prosper, if for no other reason than it’s a great name. :-)  Last year we had a lot of fun, with some of the group walking and others running.

To join my team or donate, go to http://engage.lungcanceralliance.org/goto/livelung.  For more details about the event, go to http://engage.lungcanceralliance.org/site/TR/WalkMap/General?fr_id=1140&pg=entry

Looking forward to seeing you there!

Love,

Dann

Profiles in Lung Cancer Day 18 - Gail Lemaire

Gail Lemaire: "I have 30% lung capacity and I'm still laughing my head off!"

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month.

Today, meet Gail Lemaire, who has been beating lung cancer for 23 years. Now THAT brings hope to the rest of us!

Gail, what is your connection with lung cancer? “I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!! “First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”

Volunteer work? "I helped form a lung cancer support group at my hospital in 2010, which I still coordinate and co-lead.  I’m also an American Cancer Society Reach to Recovery (breast cancer one-to-one support) volunteer through my breast cancer doctor’s office. For the past 15 years, I have recorded a Sunday news radio broadcast for a Blind and Learning Disabled audience. Sadly, that agency has now closed. I also do other occasional activities, like volunteering at LUNGevity’s annual "Breathe Deep" fun Walk/Run."

Why all these different volunteer activities? “These Volunteer positions are the most rewarding work I could ever imagine.  Certainly, I feel better and get more out of working with other cancer survivors than any help or assistance that I could possibly provide to them.”

What does a typical day look like for you? “I am lucky enough to wake up each morning to my darling husband giving me a cup of coffee in bed!!!  I admit it, I'm spoiled!  I go to the hospital quite a bit for tests and treatments.  I meet up with other cancer survivors - and also do the "ladies who lunch" thing. I stay busy with my Bunko group , my book club,  my breakfast club, and my fine dining group. I also spend time with the LUNGevity group online, as well as a few others.  There are so many places online to share information about our health and wellness.” 

 What is something that people may not know about you? "I have 30% lung capacity and I’m still talking my head off!!!  I haven’t run any marathons, though. My husband and I are captive slaves to our 10lb. rescue/adopted dog, who has us perfectly trained to her liking."

What do you want people to know about lung cancer?   "If I tell someone I have Lung Cancer and they ask me "did you smoke or do you smoke?" it is very hurtful, and it infuriates me. It is an insult to imply if you were a smoker you brought on Lung Cancer yourself.” Also, in the immortal words of Sir Winston Churchill, "Never, never, never give up!"

What brings you hope?  "A doctor told me that we have learned more about Lung Cancer in the past 5 years than we have in the past 50 years.  That's hopeful!"

For yesterday’s profile of Kim Ringen, see http://lil-lytnin.blogspot.com/.

For tomorrow’s profile of Anne Gallagher, see http://aquariusvscancer.com/.

For a link to all of the November profiles, seehttp://lcsmchat.com/profiles-in-lung-cancer/.

Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.