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.



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.

New CT Results, and Requesting a Little Hope

Friends and Family,

My latest CT scan results are in, and things remain spectacularly unchanged. Can you see my smile from there? :-) I feel increasing gratitude after every scan, because I can’t count on this lasting forever.

I know this because the New England Journal of Medicine just published the Phase I trial results for AZD9291 (http://www.nejm.org/doi/full/10.1056/NEJMoa1411817). The average time people stayed on the drug before their cancer started growing again was 9.6 months. If my results are average, I have a couple of months before things change. I don’t plan to be average. I’m treating the stats like you would a pole vaulting competition. Somebody has to set the record. 

Ever since I ran into a guy at the LUNGevity Hope Summit who had been on Tarceva for eight years (roughly seven years longer than average – and still going), it has raised my level of hope.

How much difference can hope make? How much difference can love and support make? This is where I’m asking for your help.

Two things. First, I’m asking if you will send me your images of hope. In my last blog entry (below) I posted a couple of images of "Hope" that I found in Washington DC. I’m hoping you will help me expand that list by emailing more images to me. It makes more difference than you can imagine. As proof, those images you sent to me of light zapping the cancer and healing light a few months ago kept me (and many others) flying for months!

Second, I’m inviting you to join me for the Lung Love Run/Walk on Saturday, June 20th. My very own team, “Live Lung and Prosper,” welcomes new members and/or donations at http://bit.ly/1Kj9tbk. If you join by this Friday, June 29th, they can still guarantee you a tee shirt. After that it’s a gamble. (Sorry, it’s the real estate agent in me. Gotta create a sense of urgency.)

OK, I held back the best part of my CT scan results. It showed that my Swiss cheese hip bones and spine are turning solid again. Was this improvement caused by the AZD9291? Was it caused by the bone strengthening (Zgeva) injections combined with calcium supplements? Was it the healing light sent by y’all???

Hoping everything is going well for you, too.



Footnote: If you don’t have my email address, go to the Contact tab at the top of the page and give me your email address. I’ll reply with mine.

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.