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 Inspires You?

Friends and Family,

Genevieve and I had the opportunity to be interviewed last week for a local news broadcast. The interviewer, Tracy Barry of KGW, was terrific.

This was originally going to be an interview as part of Lung Cancer Awareness Month, but had to be rescheduled twice for various reasons. Even though this is no longer November, Tracy got excited by the topic and wanted to do the interviews anyway. Thanks so much to Tracy for sticking with the story, and helping us get the word out.

I believe the story will be broadcast this Friday, and I will let you know details when it has been confirmed. The primary focus of the story is my friend Dawn, so Tracy interviewed Dawn in her home before meeting up with us in a coffee shop.

Dawn told me that Tracy might  ask about any lung cancer advocacy work we were doing, so I should be prepared. While Genevieve and I waited in the Felida Coffee House for Tracy and Dawn to arrive, I put together a list of the different lung cancer advocacy activities I have done. The longer we waited, the more that list grew.

Genevieve encouraged me to put the list on my blog, but I told her it seemed to much like bragging to me. “You’re missing the point,” she told me. “This isn’t for you. This is to inspire other people.”

She was right. I thought about how I had gotten involved with advocacy myself. When I went to my first LUNGevity HOPE Summit in Washington, D.C. two and a half years ago, it changed my world. Until then I had done a few things, but mostly I used the excuse that I already had enough on my plate, between working and dealing with lung cancer. But then I met 200 other survivors who were going through the same thing. I heard their stories, and could hardly believe all the stuff they were doing. A suburban housewife was traveling around Texas with her oncologist to make people aware of how many new treatment options were available, including the one that was extending her life. Matt, who has become a friend, started a resource with ratings of oncologists and lung cancer treatment centers. Several people were testifying before the US congress, and participating in the writing of new laws. I also met about a dozen other bloggers.

I have never thought of myself as high-energy, but being around all these high-energy people, who were dealing with lung cancer just like me, inspired me to do more.

So that is the reason I am sharing my list with you. I am hoping that my own list helps you realize that anyone can do more than they think they can.

Here is my list:

·         Writing this lung cancer blog for eleven years. (I can’t overlook the obvious.)

·         Lobbied the US congress as part of the Lung Cancer Alliance.

·         Through ACSAN (American Cancer Society Cancer Action Network), testified before the Oregon Senate Healthcare Committee about an insurance bill that could impact people with lung cancer.

·         With Genevieve, joined a drug company’s international committee to make their lung cancer clinical trials and treatments more patient-focused. (Time to get my passport renewed.)

·         Chaired the planning committee for the Lung Force Expo (American Lung Association), and planned the 2016 lung cancer conference in Portland. I also MC’d that event, led a session on Being Your Own Advocate, and organized another session and recruited the participants for a caregiver panel discussion.

*        Member of LUNGevity's Patient FoRCe External Advisory Committee, a collaboration of survivors, clinicians, industry partners and advocacy organizations with a goal of amplifying the voice of survivors through research.

·         Planning committee member for the 2017 Lung Love Run/Walk in Portland. We are now working on the 2018 event.

·         National speaking engagements to share my story.

·         Guest on the Portland Today show for Lung Cancer Awareness Month in November 2016.

·         Guest writer for the blogs at two national lung cancer organizations, LUNGevity and Lung Cancer Alliance.

·         Subject of two articles for national cancer magazines.

·         Radio spot to promote the Lung Love Run Walk in 2017.

·         Committee member to review the protocols for a new lung cancer clinical trial, and suggested improvements to the design.

·         One of the twelve role models featured at the LVNG With Lung Cancer website https://www.lvng.com/, and my photos and quotes were the first to be used for their Facebook presence (160,000 followers!).

·         Participated in several focus groups.

·         Represented Lung Cancer Alliance at a lung cancer screening event held at Providence St Vincent this November.

·         Wrote a book about thriving with lung cancer. The book will be coming out early next year!

Now that you know what inspired me, and what it inspired me to do, my hope is that you will be inspired, too. Regardless of whether it is related to lung cancer, we all have something to contribute.

I can almost sense a New Year’s resolution coming on.

Wishing you joy through the holidays.

Love,

Dann  

The HOPE Summit Lives Up to Its Name

Friends and Family,

Genevieve and I just got back from the LUNGevity HOPE Summit, and I wanted to share a few of the highlights.

The first highlight was having Genevieve to share this with me this year. She soaked up a lot from the conference, and at the same time, she got a little overwhelmed, just like I did last year. Being in a conference with 300 people, and confronting such an emotional topic non-stop for a few days, has a way of doing that.

I was buzzed by being around roughly 200 lung cancer survivors. And it's not just the shear numbers; it's also the attitude! Just read about how last year's group handled a DISASTROUS BUS RIDE to get a feel for what I'm talking about.

Here are a few highlights:

In the past year, there have been more new lung cancer drugs approved (7) than in the previous 15 years COMBINED (6). It gets better! There are 123 new drugs currently in clinical trial. Just hang on a little longer, and the menu of treatment options will open up. It's a great time to be a lung cancer survivor!

Something else struck me when we got the ten-year lung cancer survivors together for a photo. (OK, I fudged by a couple of months to get in, but close enough.) After Genevieve took the picture, she pointed out that I was the only man. How can this be? Are the women out-living the men, or does this just tell us about who shows up at a conference?

Which one of these is not like the others?

One more major point that hit me, just as much as it did last year, was what incredible advocates we have within our ranks. These are the people that pull together fund-raisers, meet with Congress, organize walks, sit on boards to determine where research funds should go - The list is endless. This year, it hit me again while talking with Lysa Buonnano, Don Stranathan, Deana Hendrickson, and a few others. And I seriously think that we should have an annual Janet Freeman-Daily Award (the first one goes to Janet), to honor those who are doing so much to change the face of research, education, funding, and treatment within the field. These people inspire me to do more than I thought I could.

With so much momentum carrying us in a positive direction, I want to thank you all again for your donations to LUNGevity. Together, we raised $2,710. Now more than ever, your donations are having a big impact on curing cancer.

With Love and Gratitude,

Dann

LUNGevity HOPE Summit: Prepare to Be Inspired!

If you are a lung cancer survivor or support person, this is an inspirational opportunity that is hard to pass up. I have been to a number of cancer runs/walks, fundraisers, and workshops, and for me, none of them have topped the LUNGevity HOPE Summit for feeling part of an empowered and upbeat lung cancer community. The latest research, Q&A with an oncologist, 25-year survivors, awe-inspiring advocates - This HOPE Summit has it all. And even better, if this is your first time, it is FREE. This includes transportation, hotel accommodations, meals, and the conference itself. The Summit is April 29th - May 1st.

My writing style may be extroverted, but I felt very uncomfortable going to a conference where I knew just one person, plus a few acquaintances I had met online. That awkwardness lasted less than five minutes. We are all in the same boat, and contrary to what I expected, I DO like being part of at least this one group that would have me as a member.

For more info about the HOPE Summit, go to http://bit.ly/1Uxh1uU.

If you have already been to the Summit before, you can go again for FREE if you raise $1,000 or more.

I have now raised over $1,000 with the help of many terrific people who have made generous donations, but I am upping my game. If you would like to donate to support lung cancer research, education and advocacy, please click http://bit.ly/1VX64VB.

Hope is Where You Find It

After the LUNGevity HOPE Summit in DC last week, I was pumped. I was feeling the hope, and I still am. I even found Hope in a couple of unexpected places. First there was this:

That got me excited to look for more Hope. I found this in the Smithsonian Natural History Museum:

                                                            Hope Diamond

James Bond taught us that "Diamonds are Forever," but now you know that Hope is forever, too!

So now I'm looking for signs of Hope everywhere, and I would love to have your help. Share the Hope! Send me your pictures and I'll share the Hope with others. Be as creative about what "Hope" means as you like.

If you don't have my direct email address, click on the "Contact" tab above and email me that way. I'll email you back so you can send your photos to me. 

LUNGevity HOPE Summit

I'm going to Washington!

Every year LUNGevity holds a HOPE Summit in Washington, D.C. This year it is on May 1st to May 3rd, and I'm going.

I learned about the conference last year, but didn't want to go. Just like Groucho Marx once said,  "I wouldn't belong to any club that will accept me as a member."

I thought that getting a couple of hundred people with lung cancer together in one place could lead to all kinds of negativity, despite the name of the conference. So I didn't go.

HOWEVER. Over the past year I have gotten a different view. I've looked at it with much more, well, hope after more contact with a number of bloggers, people in online open forums, and people who have commented on my blog. The view from here is looking pretty positive. Maybe it actually COULD be a Summit of Hope.

Craig https://craigblower.wordpress.com/ told me that LUNGevity was providing scholarships, including travel, accommodations in a fancy schmancy hotel, and a couple of meals a day to first-time conference attendees who simply apply. So I did, and, surprisingly, it was that easy. Free. No catches. 

If you're interested, go to http://lungevity.org/ and click on the Events tab. This is a great site for a lot of reasons, and this conference is just one of them. Look around while you're there.

I'm going to find out who actually pays for these scholarships. I have one more reason for gratitude, and I'd like to thank the benefactor.