A Celebration and Some Big News

Friends and Family,

There are a couple big events happening today, and I want to share them with you. First, today is my cancerversary. It has been eleven years since I was diagnosed! We are celebrating! When I was first diagnosed, we couldn’t even think about getting to my first cancerversary, let alone my eleventh! At the beginning, I didn’t even know what a cancerversary was.

We have another reason to get excited, and the timing is perfect. I have wanted to tell you this for so long that I could hardly stand it:

I have written a book!

Of course, it’ about living with lung cancer. This is not something I sat down and wrote one weekend and decided was good enough. I have been working on this for over four years. I have written and re-written. After that, I hired an editor, Kate Brubeck. With her help, I got the book in final form and  ready for publishing. I reached out to a dozen publishers and a dozen agents who trade in my genre. After getting no response, I read what is considered to be the bible for getting your work published: The Writer’s Market. I could have saved a lot of work If I had started there. I learned that it is extremely difficult to get non-fiction published unless the writer already has a “platform” – ready access to a large number of people who already know you and are eager for your work.

That set me on my heels. I sat on that book for nearly a year while I thought about what to do next. Eventually, I came to the conclusion that I needed to self-publish. I emailed Kate to tell her of my decision, and told her that I was going to re-write some chapters and add some new ones. Her response? “Ah! So you’re a writer!”

So that’s what I did. I re-wrote, and added chapters where I had seen some holes. I sent these changes off to her, expecting to get back grammatical corrections and typos fixed. She did all that, but there was more.

Kate challenged me to dig a little deeper, and share a little more. She suggested adding some new elements that would be included in every chapter. Not only that, but Kent, a friend whom I had asked to preview the book, suggested that I organize the chapters in a more cohesive way. I took both suggestions to heart, and set to work.  

Several months and countless hours (days?) at my computer later, I was finally ready. I re-submitted my baby to Kate. But… the timing wasn’t right. Kate had a big project in her lap, which meant I had to hold my breath for another month until she was free. (This is difficult to do with only one and a half lungs.) Finally, she was able to get back to my project. Of course, there was plenty of red ink on the typos and grammar, but those were all minor. The important part was that she loved the changes. Since the change was fairly radical from where I had started, I was both relieved and excited.

As you can tell (and probably expected), I have put a lot of heart into this book. It is not a compilation of my emails/blog stories. In fact, about 95% of the content is new. However, I won’t tell you more about it… yet.

I have learned that writing is only half of the work. There is still much to do to format and prepare the book for self-publishing. In stories where I used people’s real names, I sent out the chapter and asked permission. There is plenty of legwork to be done to get the marketing in place. While the writing is finally done as of today, my eleventh cancerversary, there is this one more phase to complete to finally get this baby out into the world.

I’ll be cranking on this for the coming weeks. Long before I’m finished with that, I will have my next CT scan. I’m hoping that I will have even more to celebrate the next time I write.

Hoping that you have plenty to celebrate in your life, too. Big or small, what is bringing joy to your world today?

Love,

Dann

New Story Published

Friends and Family,

The Lung Cancer Alliance asked me to write a story for their website, and it has now been published. I wrote a very brief version of some of the hope and highlights of the past eleven years of living with lung cancer, along with why the Lung Cancer Alliance, and the upcoming Lung Love Run Walk on June 24th, mean so much to me. Here is a link to the story: 

http://www.lungcanceralliance.org/blog/my-lucky-break/

The story stands on its own, but I also hope it inspires you. My goal this year is to have a team of 30 with me on June 24th, and to raise $3,000. So far, we have 6 team members, and have raised 42% of my financial goal. Here is a link to Team Live Lung and Prosper:

http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211#sthash.GlWuI5BI.dpuf

Love,

Dann

Living Out a Fantasy

Friends and Family,

I hope the above subject heading doesn’t get this email filtered into the spam folder, along with the fake Viagra ads and opportunities to meet sexy strangers who live nearby, but I couldn’t say it any other way. This really was a fantasy for me.  

Genevieve and I recently got to do something I have been dreaming of for the past two and a half years, but that I never actually thought would happen. I got to thank the people that saved my life.

Ever since I started this clinical trial for AZD9291, now approved and known as Tagrisso, I have been thinking about the lab scientists who were coming up with this new treatment. How did they come up with the strategy? How did they test it? And ever since my first CT scan, which showed that my cancer had shrunk by two-thirds, I have fantasized about what it would be like to actually meet these scientists, and to thank them. There was no reason to imagine that it would ever happen, but hey – I’ve beaten the odds on everything else, haven’t I?

It happened because Genevieve and I were invited to go to Maryland to visit Astra Zeneca, so that I could be on a panel.  Astra Zeneca has an annual Science Day, so that their scientists have an opportunity to see the value of their work. Just like at other scientific conferences, they had a poster session with displays of all their research over the past year, and they had speakers on different topics. At the end of the day, two other survivors and I sat on this panel. The idea was to let these scientists know what it is like to live with cancer, and then to understand in a much deeper way what a difference the work they do makes. I couldn’t wait for the opportunity! But before that…

It got even better. We got to tour the labs. We saw where the kernel of an idea gets translated into experiments, and where the fruits of those experiments lead to larger-scale experiments, and eventually to a finished product. And it was right in this lab where I got to see the exact tanks where AZD9291, the medication that saved my life, was made. It was exhilarating!

And just like those TV ads for steak knives that you can cut steel, or equally tough steaks with: “But wait! There’s more!!!”

We met people from multiple departments all day long. Each one seemed to be genuinely appreciative that we were there. And Genevieve and I got to tell them in person that, because of them, I am still alive. They cried. I cried. Genevieve cried. We were all a mess, and very embarrassed, and really happy.   

Finally, we got to the end of the day, and the panel. The last time I spoke in front of a crowd this big was four decades ago, but I didn’t let that get in the way. I told them of the devastation of getting diagnosed. I shared the fears before every CT scan, waiting to find out how long I might live. I shared how much richer my life has been, partly because I don’t know how long I will live, and largely because I’m living in gratitude every day, and my life is full of love, and my values and priorities are so much clearer. And, because I was worried that we would run out of time, I interrupted the moderator to tell these scientists thank you. Thank you, thank you, thank you. For saving my life. I choked up, and barely got the words out, in front of 300 people. But nothing was going to get in the way of this opportunity.   

So much of my life now is about gratitude, and this was the perfect moment to express it.

And now I have one more thing to be grateful for:

I got to live out my fantasy.

No Viagra required.

Love,

Dann

P.S.: We are having the annual Lung Love Run/Walk on Saturday, June 24th at Laurelhurst Park. We would love for you to join our team, Live Lung and Prosper, if for no other reason than it’s a great name. :-)  This year my goal is to have 30 participants, and to raise $3,000.

To join my team or donate, go to http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211#sthash.GlWuI5BI.dpuf.

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.”

“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/.