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 Party is Over

Friends and Family,

Thank you to everyone for the great support while I have been waiting to find out what is happening with my cancer. You have helped make the wait for some understanding of what is going on much more bearable. And now, the wait is over.

I got an email from my doctor’s office this afternoon. It’s everything I hoped to hear! The gastroenterologist said that this mushy-ness in my pancreas has only a small chance of ever turning into cancer, or of being life-limiting. YESSSSSSSSSSSSSSSSSSS!!!!!!

The funny thing is, over the past two or three days, I was already starting to feel less worried about it. This seems to happen every time there is bad news, or even the threat of bad news. My first response is to dive head-first into panic, gloom and doom. Give it some time, and I remember that I know how to do this. After all, I have enough experience by now. :-)  

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So, what’s in that toolbox of coping skills? Here are a few that I used this time:

*         Taking in all the love and support, from you, and from Genevieve. It makes all the difference in the world.

*        Acceptance: If it happens, it happens. This was the hardest tool to develop when I first started on this journey, but it keeps getting easier with practice.

*         Perspective: We’re all going to die, so all we are talking about is when. Of course later would be better, but I can’t control that. I have to let go.

*         Gratitude: I have been extremely fortunate to live more than eleven years (!) since I was first diagnosed, and more than six years since I was re-diagnosed. This is extraordinary, and one of the reasons that I feel blessed every day.

*         More Gratitude: The love you have shared has not only been one of the main reasons that I am still alive, it has also been life-changing.  Thank you for this incredible gift!

*         Logic: When we are in panic mode, every random thought takes us into a new and even more scary direction. Once I got past that, I started thinking about a few things: 1) The pancreas is not a place that lung cancer usually spreads to, at least not first. 2) When the cancer starts to spread, it seems to always spread more in the lungs before looking for new territory. 3) It makes no sense at all that I would randomly get pancreatic cancer that didn’t spread from my lungs, since my chances are no higher than the general public. The odds against it are great.

Thanks again for being there. It makes a world of difference.

Love,

Dann

The Results are in... Sort of.

Friends and Family,

I was supposed to hear from my local oncologist today to tell me the results of my MRI. Of course, I didn't get a call at 9 AM. I didn't get a call in the afternoon either. At 4:45 Genevieve was urging me to reach out to my doctor again, so we didn't have to wait until after the weekend to get the news that, not to be overly dramatic, could impact my lifespan. I told her I had exchanged emails with his nurse a couple hours earlier, so there was nothing else to do but wait. 

Just before 6:00, Dr. Cetnar's nurse called. Dr. Cetnar had reviewed the report, but the results still weren't clear. Wendy told me that it may not be malignant, and it's unclear whether a biopsy should be done. He reached out to a gastroenterologist for a consultation, since this is their area of specialty. Of course, I asked, when I might hear the results, since I'm sitting in limbo until then. "Early next week," she told me. I reminded her that this is just a wee bit stressful, so soon would be helpful. I got a supportive, but non-committal, response.

So how am I dealing with it? It could drive me a little "Mad," but at the moment I'm taking it well. 

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I'll keep you posted when I know more. In the meantime, thank you all for your love and support. It has kept me going these past couple of days, not to mention the last eleven years.

Love,

Dann

Latest Scan Results: Don't Get Mushy on Me.

Friends and Family,

We flew to San Diego last Tuesday to see my oncologist. Thirty seconds after we sat down, he popped his head  through the door and said, “Your scans look great. Nothing to worry about! Back in a minute.”

You would think that would be the end of it, wouldn’t you?

When he came back into the room, the conversation took a different turn. While my lungs are stable, Dr. Patel said that a “hypodensity” showed up on my pancreas. “A hypodensity,” he said, “is a mushy spot.”

One of the many bonuses in being a cancer survivor is that I’m getting a medical education at no extra charge. Hypodensity = mushy. I must find a way to make use of this.

Just to set the record straight, I already have a few hypodensity spots, and most of them are pretty hard to miss. I’ve never once had a doctor ask me about any of them, and Genevieve has been kind enough not to point them out. So what makes this one different?

“It’s nothing to worry about,” he said, with a concerned look on his face.

This had me squirming just a bit, so I asked more questions. “What might it be?”

He talked a lot, without ever answering the question, all while telling me again not to worry about it. Again, I’m wriggling. I decided that the answer I was getting was a hypodensity. (Sorry.)

So, I got blunt. “Could it be cancer?” Pancreatic cancer is already a hot button for me. This is how my mother died. The possibility that it could hit me opens old wounds, and not a small amount of fear. I have one cancer under control. If this is a different kind…

Dr. Patel was emphatic in telling me that there are contradictory opinions about the link between hypodensities and cancer amongst doctors, and no conclusive proof, so don’t think about it that way.

All this reaction from the doctor, while he’s telling me there’s nothing that should cause a reaction. I may be a little clueless at times, but being tone deaf does not even make the top ten in my list of medical problems. Something doesn’t fit.

How do I put these conflicting pieces together? As a last resort, I got practical, and asked what we do next.

The next step is to get a MRI. He was suggesting doing this in another three months, but after reviewing my old scan reports, I found that Mister Hypodensity has been hanging around since at least April. I convinced him to request it now. If nothing else, getting an answer will keep the stress from killing me over the next three months.

The MRI will be done tomorrow, and I should get the results on Friday.

This is one of those times when I would like to say that I am having reasonable concerns, but no fear. Perhaps that would be true if I was more brave, but I am not. In the past week, I have gone from denial, to full-fledged fear, to letting all the feelings in and then  letting them pass through me, to staying in the present. Sometimes this week at work it has been hard to make a phone call if there is the least bit of challenge involved in it, so I have put a few things off. Some days I’m leaving work early, too worn out to be productive. All of this is OK with me. Having ups and downs just means I’m in touch with what is real. It will all pass, and we will deal with whatever comes. After all, Dr. Patel says there’s nothing to worry about.

Just one request: Don’t go getting mushy on me.

Love,

Dann

Feelin' Groovy

Friends and Family,

Sometimes, everything goes well. Or maybe it just feels that way. Life is a little more relaxing, and little things that might bother you a little bit seem like, well, little things.

Do you have any favorite old songs that pop into your brain under just the right circumstances? Beautiful sunrises sometimes bring “Here Comes the Sun” (Beatles) into my consciousness. But the one that keeps going around in my head lately, is Simon & Garfunkel’s 59th Street Bridge Song. If you want to feel what I’m going through right now, try listening to this: https://www.youtube.com/watch?v=mWBvcJAXwu4. (Disclaimer: You may have to be of a certain age for this to mean anything for you.)

I could be feelin’ groovy because a couple of months ago, Genevieve and I started meditating every day. I visualize being cancer-free, and try to take that experience and feel it as if it is happening in the present. According to Joe Dispenza, whose workshop we attended, this will help you create your own reality. Quantum fields are involved. I don’t know about that, but I do know it feels pretty great anyway. I’m going to keep it up.

My mood could also be this good because we’re in Hawaii right now. Yesterday, Genevieve pointed out to me that I always look more relaxed while we’re out here, even if I am working at commercial real estate 3-5 hours a day. Five mile beach walks with very few people around definitely help. Sitting on the bluff at sunset taking pictures – counting this trip, about 842 million of the same scene so far – puts me in a relaxing mood. It’s just so beautiful and peaceful. Maybe the glass of wine helps, too. :-)

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There is one other thing going well. It’s my marriage, which began exactly 21 years ago today. I’m calling this our champagne anniversary, and not (just) because champagne is cheaper than diamonds or silver. Our marriage is now old enough to drink! This relationship brings me a level of happiness that is far beyond what I imagined possible, right up until I was in it. Genevieve is simply wonderful, and we are both better people together than we were without each other. Life is so much richer with Genevieve in it.

20170928_163253 (1).jpg

The only thing causing me a little impatience right now is getting my book published. I could launch it myself within a week, but my brother Mike convinced me that, if I want this to be a success, I really need to have a book marketing firm involved. I have three names to contact and interview. After that, a book launch plan could take many months to do well. Since the goal is to get the word out to as many people as possible, I will have to at least ACT with patience. I will confess that there are times when I have wanted to get the book out ASAP, since I never know how long my health will remain stable. However, since I keep defying the odds and staying healthy, I’m willing to risk it.

The last thing to tell you is that I don’t have any scan results yet. That comes in two weeks. While my body goes into occasional panic mode, my brain reminds me that I have no symptoms, and I’m already the exception to how long this treatment usually lasts.

Hope that you’re feelin’ groovy, too.

Love,

Dann

Call Me an Optimist

Friends and Family,

Have you ever noticed the flight pattern of a moth while you were trying to swat it? No one – not even the moth – can predict where the moth will go next. They dart in every direction so fast that you would need a video in slow motion to follow their flight path. This is nature’s defense against bats and birds, and the occasional fly swatter. Since these predators can’t predict the moth’s flight pattern,  they can’t maneuver fast enough to keep up.

I think I must be genetically related to the moth. Yesterday, both my brain and my stomach were changing directions  at almost moth-speed. I was jittery, couldn’t think straight, and my stomach was doing the cha-cha. There were no bats in sight, but… there was that threat of meeting with my oncologist and getting my CT scan results. See below for a time-lapse photo of my own moth-flight pattern.

I was in full-on panic mode. It was far worse than the usual pre-verdict panic, probably because I had pretended like this meeting wasn’t going to happen for as long as possible. BAD idea. It works much better when I alternate between staying in the present, and then occasionally letting it all sink in. You have to deal with the fear, unless you want to be disconnected from your own life. Or go into total panic at the last minute. However, you don’t have to live in your fears – just visit them.  

Prepared or not, the appointed meeting arrived. First, the nurse took my vitals. “Your blood pressure is high. Are you under some stress right now?”

“I’m waiting to find out if my life will be extended another three months,” I said. “Does that count?”

“Got it,” she said.

Shortly after, Dr. Patel walked in the door. “I have the results, and I won’t leave you hanging. Your test results are great. No change!”

Yessssssssssssssss! I was flooded with relief. Since I’ve now been on Tagrisso for three times the average without progression, every time he says this I’m thrilled – and very grateful.

Genevieve’s response, was, of course: “I knew it.”

Still, she looked relieved, just like me. I jumped up and gave her a big hug.

So far, I haven’t shown you where the optimism came in. Here it comes.

Age sixty is the marker for a couple of routine medical procedures. With that in mind, I asked Dr. Patel if there was any reason why I shouldn’t get a pneumonia vaccine… and a colonoscopy.

The pneumonia vaccine is a no-brainer. EVERYONE with lung cancer should ask their doctor about getting this vaccine while they are stable. Pneumonia is one of those things that is easy to develop with lung cancer, and that can kill you, even if you are surviving all the other treatment challenges. It doesn’t take a lot of optimism to ask for this vaccine: It only takes being prepared for the future.

But a colonoscopy? NOBODY volunteers for one of those.

I’m an optimist, but not as insanely optimistic as this sounds. I have my reasons.

First, everyone should get a colonoscopy every ten years after age fifty. It’s been ten years since my last one, so it’s time. If the guy with the questionable lifespan is willing to do it, don’t you think you should think about it?

Take it from me, cancer prevention is far better than treatment. Get it now, regardless of your cancer history.

If you’re thinking about it, but just aren’t sure, Dave Barry’s story about his own colonoscopy will give you a good laugh and more to think about: http://www.miamiherald.com/living/liv-columns-blogs/dave-barry/article1928847.html.

My next reason is that, because of those roughly forty (!) CT scans I’ve had in the past eleven years, I have had approximately eighteen trillion times more radiation to my abdomen than the average person. Just this past winter I had a skin cancer removed from a place that never sees the sun. (Watch it – I was talking about under my arm.) That skin cancer was pretty good evidence to me that I’m at higher risk.

So that’s it. A guy with Stage IV lung cancer going to get a colonoscopy so he doesn’t end up with colon cancer.

I’ve wondered if my insurance company is going to laugh at the pre-authorization request. Can’t wait to see what they do with it.

And maybe, just maybe, while that doctor is scanning the nether-reaches of my bowels, he’ll find a few moths.

Be safe. Be well. Take good care of yourself. Regardless of your diagnosis.

Love,

Dann

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

Lung Love

Friends and Family,

If you're still considering about going on the Lung Love Run/Walk tomorrow, click on the link and you'll hear my interview with Mark Mason on KEX 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.

Getting My Ph.D.

Friends and Family,

When I started sharing my cancer journey with you, I had no idea how often I would be telling you about something to celebrate. And yet, here we go again. Who would have believed it?

I just celebrated a milestone that was beyond my comprehension at age 49, when I was first diagnosed. At that age, even reaching 50 seemed a stretch. That’s what makes this milestone such a stunner for me:

I just turned 60. Unbelievable!  

There’s even more meaning in this for me. Both my parents died at the age of 59. By reaching 60, I am breaking the family pattern, sort of a glass ceiling. The closest parallel I can think of is Steve, a guy I just met yesterday, whose parents never went to college. In fact, his father has a sixth grade education. It’s hard to imagine how he could end up getting far in school. So what did Steve do? He got a Ph.D. in Physics. Way to go, Steve!

This feels like my own equivalent: I now have a Ph.D. in Staying Alive.

You wouldn’t know it by how much I now share about myself now, but when this journey started, I disclosed almost nothing personal with anyone except Genevieve. Exposing myself was unfamiliar, and too risky. In fact, the last birthday party I had that included more than family and a couple of friends was when I was five years old.  Inviting more people was waaay too uncomfortable for me. But this occasion meant so much to me, that I took what felt like a big chance.

Genevieve and I reserved a room in a brewpub. I invited friends I grew up with, and family friends going back to childhood, and people I work with, and some survivor friends, and of course, family.  But as a novice to this, I had one giant fear: What if I threw a big party, and nobody came? A big empty room would have been uncomfortable beyond belief.

I am grateful, and honored to say, that didn’t happen.  For me, this was the party of a lifetime! I only wish I had more pictures to remember the day.

Thanks to all of you for celebrating with me. It means more than you can know.

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.

Hairstory is Not Repeating Itself

Friends and Family,

You never know where the next life lesson is going to come from. This time, for me, it was from hair.

Last night, I asked Genevieve to cut my hair. She’s been cutting it for the past six years, so nothing new there. She kidded me about trusting her so late in the day, but I pointed out that she is the night owl – It’s me I wouldn’t trust with a pair of scissors at this hour. We got everything set up, and I sat down in the chair. Genevieve took one swipe of the razor from the back of my neck to my forehead. I watched a thick pile of hair fall to the floor. Genevieve stared wide-eyed at my head, mouth open,  and then stared at the razor. I looked at the pile of hair on the floor. I looked at her. I looked at the razor.

The razor had no attachment.

I busted out into a big belly laugh! I ran into the bathroom to see. Sure enough, I had a reverse Mohawk! I laughed even more, and then took this picture:

Genevieve kept looking horrified and guilt-ridden, and couldn’t stop telling me how sorry she was. I was reduced to giggling, and could barely speak. “Let’s finish this!”

She got out the shortest attachment, then ran that razor over every inch of my head. All the while she kept apologizing. I kept telling her that I was fine, and that she should forgive herself. This morning she told me that she didn’t sleep last night, because she kept having visions of cutting that racing stripe down the middle of my head.  Me? I smiled all evening, and woke up smiling. I think I must have been smiling in my sleep. I was still in a good mood all day. Here was the end result:

Bless her heart, Genevieve was upset about the "damage" she had done. So why was I so happy?

It’s going to take telling you a little about our latest trip to San Diego to make the point.

Sometimes, when we fly down to San Diego to see my oncologist and get my scan results, we walk in confident that everything is going to turn out great. Other times, “scanxiety” gets the best of us, and we get really worried about what we will find out. This time, for weeks leading up to the appointment, we were both much more fearful than usual.

Genevieve kept asking me, “are you coughing more lately?”

“No,” I kept answering, “but it feels like it’s been harder to breathe. Have you noticed?”

Fortunately, we both remembered that we are lousy predictors of scan results. It’s just too hard to be objective when it’s so personal.

I don’t know what triggered Genevieve’s fears this time, but for me, it was because I have been way too logical. I was thinking about how AZD9291/Tagrisso usually stops the cancer from growing for 10-13 months. I have been on it for 30 months. My exceptionally long run has to be coming to an end, I thought. And since there is no clear option lined up for me, I was imagining the worst... that nothing else would work. This is not helpful, but it’s hard to stop those ruminations all the time.   

When we fly to San Diego, we get up at 3:30 AM to catch the plane. Because of all our obsessive worry this time, we were both wide awake at 2:00 AM, and that was the end of our sleep.

Sleep deprivation wasn’t helping this situation. When we got to my appointment, the nurse asked me if my blood pressure was always higher than the Dow. “Only when I’m waiting to find out how long I might live,” I told her.

With days – no weeks – of stress saturated ruminations, it was a shock to both of us when Dr. Patel came into the room... and told us that there has been no growth of the cancer!

YESSSSSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!

This brings us back to the haircut. I get why Genevieve felt so bad after giving me that racing stripe, which in turn led to my really, really short haircut. But I couldn’t put my finger on why I was still grinning all day. After all, it was me that got the un-requested buzz cut. And then it hit me.

Since I was just a little kid, I have only had my hair cut anywhere near this short twice. I had my hair like this eleven years ago, when I went through chemo for the first time. The second time was six years ago, after almost five years in remission. That was when a new cancer spread throughout my lungs, and I was going through chemo again.

This time, no chemo. Despite this hypochondriac’s fears of breathing problems, I’m doing great. No wonder I was laughing. This time, history (hairstory?) did not repeat itself. This time, hair was only hair.

So, my friend, the next time you are stuck in traffic, or your toast is burned, or your new pants have a stain in them that you discover just before you meet with someone important, I hope you can join me in finding some perspective. Sometimes, forgetting your phone at home is just a minor inconvenience, and doesn't have to ruin your day. And sometimes, an unexpected buzz cut... well, that's just a good excuse for gratitude.

Love,

Dann

Live Lung and Prosper

Friends and Family,

Last May, I had the privilege of traveling to Washington, D.C. with Lung Cancer Alliance to educate and lobby congress for lung cancer research and funding. It was a powerful and moving experience in democracy, and in advocating in a meaningful way for a cause that I am passionate about. That passion comes from both my own eleven-year battle with lung cancer, but also from understanding that 160,000 people a year are in the same situation.

Even though lung cancer causes more deaths than the next three leading cancers combined, it is far too low on our federal government's priority list. This year, with congressional efforts to repeal or scale back Obamacare, our advocacy is more important than ever. Millions are at risk of losing their coverage, and people with pre-existing conditions such as cancer are at risk of having their insurance coverage denied. Given the extraordinary cost of cancer treatment, that would be the equivalent of a death sentence for most of us. We simply cannot afford to let that happen.

Please join my team, Live Lung and Prosper. We will be running/walking the Lung Love Run/Walk 5k on Saturday, June 24th at Laurelhurst Park. If you can't run/walk with me, please consider a donation to support Lung Cancer Alliance's mission of saving lives and advancing research by empowering those living with and at risk for lung cancer.

This year, our goal is to have 30 team members, and for our team to raise $3,000. Please join us, and help make cancer a word we can all live with.

Love,

Dann

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

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

A Victory Lap and a Partial Graduation

Friends and Family,

Genevieve and I have even more reason to celebrate after this trip to see my oncologist in San Diego. It has been three long months since the last nervous check-in to see how my CT scan results turned out. That's twice as far apart as the scans used to be, so there is twice as much to worry about. But guess what? No new growth. Again!

I started  taking AZD9291, AKA Tagrisso, 27 months ago. On average, this drug works for 13 months. This means that I not only "won" a "baker's year" of extra life the first time around: It means that when that was done, I took another full victory lap around the sun. Yaaaaaaah! So much to be grateful for!

As if that wasn't enough. There's more! On this trip, we found out that the trial is beginning the wind-down phase. That means we will see my oncologist half as often, which matches up with the scans. Also, each time we fly to San Diego, the team places electrodes on my chest and does an EKG to see if my heart is being affected. Those tests will be done half as often as well. The risks of this drug are becoming more known, so the researchers aren't as worried about the impact on people's hearts. That's a good sign not only for me, but for every person who will ever take this drug.

Flying to San Diego four times per year instead of eight sounds pretty great, although there are some perks to taking those trips. Getting even a few hours in the San Diego sun after the snowiest, iciest Oregon winter in my lifetime has done our hearts good. See below for a picture of the signs of hope and optimism (in addition to Genevieve) that the latest San Diego trip brought.

Even though we won't get to see as much beautiful sunshine, this means that I have partially graduated, and I'm getting close to outlasting the trial. Yet another victory! The final victory will come at the end of the year, when the clinical trial is shut down. Tagrisso was the fastest drug to ever get approved for a clinical trial by the FDA, and it has been life-extending for those of us who had a good response. What a great success story.

I want to give props to AstraZeneca, the sponsor/creator of this amazing drug. They will continue supplying this med to me for free after the trial is over, for as long as I am still benefiting. Although this seems like the ethical thing to do, I'm told that this isn't common. Thank you, AstraZeneca!

Speaking of victory laps, I'm asking for you to take one with me. The event is the Lung Love Run/Walk, which will be held in Laurelhurst Park in Portland on Saturday, June 24th. My goals this year are to have a team of 30 people join me on the walk, and to raise $3,000 for Lung Cancer Alliance and their advocacy efforts. This is the group that I went with to D.C. last year to lobby congress for lung cancer research. Given the political climate, lobbying for health care is going to be extremely critical. I encourage you to check out the web page for my team, Live Lung and Prosper, at http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211. I am only doing one fund-raiser and one trip to D.C. this year.

Have you had your own "victory lap" event lately?  Share the joy and pass it on. Reply in "Comments" below, send it to me through the "Contact" tab, or send me an email. I'd love to hear about it, and I would love to share it, if you give the OK.

Love,

Dann

The Drama of Outrunning a Glacier

Friends and Family,

My “Alice in Wonderland Does Cancer” adventure story took a minor detour through a puny basal cell skin cancer over the past few weeks. In cancer terms, basal cell cancer is the equivalent of being chased by a glacier: As long as you move in the right direction, you can out-walk it.

The challenges had nothing (directly) to do with scheduling the procedure to remove the little sucker on Friday the 13th. It had a lot to do with the biggest snowstorm I can remember in my lifetime, which landed a couple of days before the procedure. To understand the impact, you need context. Oregon does not have the road equipment, or the common sense that comes with experience, to handle the snow. This is the state where an inch or two can cause six-hour traffic jams, and sometimes schools close because of threat of snow. Having 13 inches of the stuff at my house, and living on a hillside, ups the ante. Here’s the picture:

Nevertheless, I was prepared to slap on my chains and take Genevieve with me down to the doctor’s office for a Friday morning exorcism of the little critter. It’s just that I hadn’t accounted for another force of nature: Genevieve.

Genevieve was having none of it. What if I wasn’t feeling up to driving home after the procedure? What if we got stuck in the snow on the way home, and I couldn’t help dig us out? Much as I hated to, I had to relent.

However, that’s not the end of the story. If you are really, really blessed in your life, you have a friend who is not only there to help, but anticipates your needs and volunteers to help when you need it most. Let me introduce you to that blessing in my life, which is my brother-in-law and closest friend, Lorin.

Lorin is the guy who called to ask if he could come with me to my first radiation treatment appointment when Genevieve was going to be out of town. He’s the guy you have to argue with to let you pay your fair share of the bill. He’s the one who spends more time in Hawaii working on beach house repairs than swimming in the ocean. Although I had only known him for a little over a year, at the time, he was also my best man 20 years ago.  

Lorin called us the day before the procedure and volunteered to pick us up in his Jeep, take us to his (and Genevieve’s twin Charlotte’s) house to spend the night. He could then take us to the appointment in the morning, and be assured that no nasty snow-blanketed hill was going to get in the way.

We gratefully accepted his offer, which resulted in our own little slumber party.

Ah, the best-laid plans. As Roseanne Roseannadanna used to say: “It’s always something.”

At 8:00 the night before the procedure, the doctor’s office called: The procedure was cancelled, since the surgical nurse couldn’t make it in to assist. “How about next Tuesday afternoon?”

“No problem,” I said. Lorin, of course, volunteered on the spot to take us to the doctor a second time.

And there was no problem, until Monday, when we saw the forecast for a half-inch to an inch of freezing rain. We decided to act as if everything would happen according to plan anyway.

I got another call from the doctor’s office at 8:15 Tuesday morning. “We’re closed this afternoon because of the freezing rain. It’s not supposed to arrive until this afternoon. Can you come now?”

Now, if I had been a regular, non-lung cancer person, I would have asked him if he was nuts, and told him I’d wait another month if necessary. I can outrun a glacier. However, this is cancer, and I already filled my quota, so getting this little intruder out in a hurry became a priority. So guess who I called next?

Lorin arrived 45 minutes later, undaunted by the gamble that we would be off the roads before the ice storm hit.

The procedure went off without a hitch, and the cancer (that cancer) is now gone. Lorin dropped us off, then got back home a couple of hours before the freezing rain arrived.

Thank you, Lorin, for helping us outrun a glacier.

Love,

Dann

Two Presents, and a Tiny Lump of Coal

Friends and Family,

I got a couple of early Christmas healthcare presents this year! My efforts to decrease unnecessary medical care got rewarded. First, both my oncologists agreed that I had gotten all the benefit that I would get out of my monthly bone-strengthening injections, since I’ve been taking them for two years longer than has been proven to give maximum benefit. That’s the injection that put me at risk of the Zombie Apocalypse (necrosis of the bone). Now, there will be no more monthly injections. Woohoo! Not only that, but these injections cost roughly five grand a pop. Yowza! This is the odd part: Insurance companies will deny care at times, yet they let me have $120K of overkill treatment without so much as a “Treatment Denied” rubber stamp anywhere in sight. Maybe I should be asking them for a Christmas present next year for stopping this wasted expense. Like, maybe, waive my deductibles? Ha! I’d have a better chance of seeing Santa.

The next great present was that my clinical trial sponsor agreed to reduce my CT scans from once every six weeks, down to once every twelve weeks, which is more standard. I have been concerned about getting all that extra radiation, since each CT scan exposes me to the radiation equivalent of 100-200 X-rays. Yes, you read that correctly. That means that I’ve been getting the equivalent of an unbelievable TWO-AND-A-HALF TO FIVE X-RAYS A DAY FOR OVER TWO YEARS. All that radiation can’t be good! I’m thankful that I’m down to a more “normal” daily toxic average of half that amount. Did anyone ever tell you that cancer treatment can be hazardous to your health?

That brings me to the tiny lump of coal. I was concerned about a spot on my skin, so I went in to see my dermatologist. The suspicious critter was a spot the size and shape of a nickel, if Salvador Dali had painted it. Do you have Salvador Dali edges on your moles? Time to get them checked.

That spot turned out to be skin cancer. I have to wonder about this one: Docs are always saying that skin cancer is caused by too much sun exposure, but this one is under my arm, where the sun never shines. Even in Hawaii, I never go shirtless. The CT scan radiation does shine there, however. Could all those scans have caused this??? Fortunately, it’s the slow-growing basal cell variety, so I’ll have it removed on Friday the 13th, and hope no black cats cross my path on the way to the doctor’s. 

There is one more bit of good news. Although there are no scan results from this last trip to San Diego, Dr. Patel says my lungs sound good, and all other signs are pointing in the right direction.

So that’s it for now. Lumps of coal and Friday the 13th aside, all is going fantastic.

Wishing you joy through the holidays, without any lumps of coal in sight.

Love,

Dann

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

Massive New Resources List!

Friends, I have spent quite a bit of time gathering resources to share with you. Click on the "Favorite Resources" tab for every resource that I have ever found useful myself, sites recommended to me by other survivors, and some that I uncovered by scouring the web. I'm hoping you can find something in here that will benefit you. Happy hunting!

Love,

Dann