The 5K Walk that Took Us 2,400 Miles Away

Friends and Family,

A month ago, we had the fourth annual Lung Love Run/Walk in Portland. Our group did us proud on this beautiful day, and we were one of the top fund-raising teams. For all of you who donated to help lobby for lung cancer research, thank you! This year’s event raised $50,000, the most ever! Here’s this year’s amazing group, Team Live Lung and Prosper:

Biggie, Jai Dev, Rebbecca, Dann, Genevieve, Jaidy, Steve, Violet, and Cody*

Coincidentally, the funds raised went to almost immediate use when we had the National Advocacy Summit a couple weeks ago. 120 survivors, caregivers, and health care professionals “stormed the hill” to lobby Congress. Our friends Dawn and Greg were with us, representing the State of Washington.

Dann, Genevieve, Dawn, Greg

Before we got started, Rep. Rick Nolan from Minnesota, who has been a co-chair of the Lung Cancer Caucus for many years, kicked off the day of lobbying with a sobering thought. “If you don’t show up in Washington, they think one of two things. One: You don’t exist. Far worse is number two: They know you exist, but think you don’t care.”

Rep. Rick Nolan

Yowza. This is why we need to keep showing up in Washington. They have to know how critical this is.

One of my favorite parts was meeting with the congresswoman from our district, Rep. Suzanne Bonamici. This is the third time I have lobbied in DC (second time for Genevieve), and each time both she and her health care policy staff person have met with us. Each time she has been gracious and welcoming, asking if there is anything else that she can do. You can understand why she is more engaged than most: Her mother, at almost ninety years old, and is a lung cancer survivor. But there’s more. Last fall,  her stepfather was diagnosed with lung cancer, and died just months later. You can read more about her story HERE.

On our last trip, I gave her one of my books to give to her mother. This time, she thanked me for the book, and told me that her mother is reading it. This time I asked Rep. Bonamici if she would consider a leadership role in the Lung Cancer Caucus, since both co-chairs are resigning after this year. Just a couple of minutes after asking her, Laurie Ambrose-Felton, the Lung Cancer Alliance CEO and President, crashed our meeting and asked her the same thing!

Greg, Dawn, Genevieve, Dann, Rep. Bonamici

Other than Rep. Bonamici, we met with staff with health care portfolios for our Oregon senators and congressmen/women. You may be surprised to learn that Washington is being run not just by the elder statesmen/women that we elect, but mostly by energetic twenty-somethings that do all the research for them. It’s a little scary, until you see how smart and committed they are. Some wouldn’t let us take their pictures because “I’m not the face of this office,” but all were extraordinarily receptive and compassionate. Here are the ones we could snap:

Alexa Damis-Wulff of Sen. Jeff Merkley's office with Dann and Genevieve

Rina Wulfing showing us the great view from Rep. Peter DeFazio's office! 

Nolan Ahern: Every day is Bring Your Dog to Work Day in Rep. Greg Walden's Office!

While having direct impact on our national government is heady stuff, there were also a few things I wasn’t thrilled about. First, we weren’t asking for enough! Asking for $6 million is NOTHING in the national budget! That is less than two pennies for every American, and yet 160,000 people a year die of lung cancer! Twice as many women die from lung cancer as breast cancer. Lung cancer kills more people than the next three leading cancers COMBINED. People are up in arms about the Opiate Epidemic, yet two and a half times as many people die every year from lung cancer. Why is lung cancer not considered an epidemic? Why are we asking so little, when the need is so great?

I’m also not happy that LCA doesn’t ask survivors what LCA’s agenda should be. While they claim to represent survivors, they don’t ask us what we think they should be doing. The short answer: MORE.

Finally, it’s not easy to make this trip for many people, and not just those with health challenges. LCA covered half of my flight, none of Genevieve’s, and only two of the three nights at the hotel. Most survivors have extraordinary health care expenses, and almost all have had to curtail work or stop working all together. LCA is asking people with financial hardships to foot their own bill. It’s no wonder the Western US was drastically underrepresented compared to the states within driving distance.

While I strongly believe in the process of getting involved with our national leaders, I’ll have to think a bit longer about whether I want to continue working with this group that is having far less impact than I think they should have.

The next Summit will be next March, right after a new Congress is sworn in. I’ll keep you posted about whether I'll be attending. If you have any thoughts about this, please share them with me.

Love,

Dann

Not That I'm Trying to Milk This Topic, But My Scan Results are In

Friends and Family,

It’s another beautiful day to be alive!

Genevieve and I went to San Diego yesterday to meet with my oncologist, and get the latest CT scan results. I had new, contradictory reasons to both excitedly hope for some shrinkage of the cancer, and to fear that it would start growing again.

After announcing two weeks ago that I had eliminated dairy from my diet, based on cancer research, a friend (Laura Greco, whom I wrote about HERE) sent me a link to a research article that shows that casein, the major protein in milk, suppresses lung cancer tumor growth. This left me completely confused. Now I had contradictory evidence that drinking milk would either stop any tumors from growing – or maybe even shrink them – or it could be feeding the cancer.  

I immediately emailed my oncologist, who emailed back that “it’s probably fine to continue drinking milk.”

WHAT? I’m betting my life on this decision, and I get a weak answer like this? It sounded like he didn’t want to bother looking at the article. What do you do with THAT response, when your life may depend on it?

Without any real answers, I decided that I should start drinking milk again, since what I have been doing has been working for me for the past twelve years (YEAH!). Of course, THEN I worried that maybe the cancer might have started growing again, since I had been off milk for a month.

At the same time, I was excited to see if being off milk for a month might have caused the cancer to SHRINK.

Finally, our San Diego day came, and we got the big results. Drumroll please……

No change! The cancer is still not growing!

Now that I had my oncologist in person, I pressed him much harder. He said that he had just been in meetings with other oncologists about this very topic, and the consensus was… that there is no consensus. “There is a lot of information out there, but a lot of it doesn’t rise to a scientific standard. The “signal to noise ratio’ is out of whack.”

In short, there’s too much wheat, and not enough chaff, to know what’s scientifically true. I don’t know if that’s true, but that’s what he believes. So what do I do now???

I can’t draw any conclusions from my own one-month experiment, so until I get a more definitive answer, I’m not going to change what is working. Hello, mochas and ice cream! It’s great to see you again!

I’m going to put this question out to my online lung cancer groups, and see if anyone else has a more solid base for decision-making. Passions run deep on this issue, so my suspicion is that it will be a hot debate, which will produce a lot of heat, but very little light. 

I’ll keep you posted. Meanwhile, I hope you are making the most of every moment you have on this earth. It’s a gift worth treasuring.

Love,

Dann

NOTE: It's not too late to join the Lung Love Run/Walk! It's coming up this Saturday, June 23rd at Laurelhurst Park in Portland. We are raising awareness, and funding for lung cancer research.

Click here to join my team, Live Lung and Prosper.

I See Grief Counseling in my Future

Friends and Family,

One advantage to being a long-term survivor besides the obvious – I’m alive – is that it gives me more time to find new ways to help me stay alive even longer. I stumbled on this one when I was getting ready to start writing my next book. The plan was to talk with as many long-term survivors as I could find, and see if there were common factors in what they were doing to stay alive. I thought that if I coupled that with all the research I could find on the subject, it would be something that every survivor would want to read.

It turns out the book is already written! It’s called Radical Remission. It covers the nine factors that almost every long term survivor has in common. The first chapter is about diet. I have already made some pretty radical changes to my diet by going vegetarian even before I had cancer, reducing sugar and processed foods, and increasing fruits, vegetables and whole grains. But there was one more piece of my diet I wasn’t prepared to give up. What could possibly convince me to give up dairy?

It turns out that there is some older research that shows that in both a petri dish and in lab rats, feeding them a specific protein in milk can make cancer cells grow. In fact, in the rats, they could turn a rat’s cancer on or off by either feeding it this protein, or denying it the protein.

That got my attention. Sitting at an outdoor café table at a Starbucks and drinking my mocha, I started squirming in my seat. I was thinking about giving up anything that has this protein, called casein, in it. I started wondering what I was going to do for breakfast. Would I have to give up my morning bowl of cereal, and my protein shake?

I’m reading about the potential cancer-feeding ingredient in milk… while drinking a mocha. It wasn’t going down so smoothly any more.

As I packed up and headed to my car with the cup still in my hand, I started thinking about the cup of ice cream that I eat most nights before bed. NOW we’re talking about a serious loss. I may need grief counseling after this.

By the time I got back to my house, I was ruminating about that tasty cheese still sitting in the refrigerator. As I threw away my mocha cup under the kitchen sink, I was brooding about the gaping hole this was going to create in my diet.

This all started about three weeks ago. There have been a few bumps along the way, like when I forgot that quiche is made mostly of milk and cheese, until I was halfway through eating it. (Yes, I finished it!) Then I tried my favorite salad bar near my office, only this time with just  a little cheese and something other than blue cheese dressing. By the next time I came back, I was off cheese altogether.

I had to keep reminding myself of how much this could mean to me. Could this change reverse my cancer? At the very least, could it mean that I could stay on the same treatment for even longer than I would otherwise, without any cancer growth? Maybe I would feel the loss, but I would need to find enough advantages to avoid needing grief counseling.

Three weeks out, I may be imagining it, but it feels like I’m breathing a little easier. I may also be imagining that I have a little more energy in the evenings. I’m kind-of-almost-eager to get my next CT scan to see if there is any shrinkage of the cancer, while also checking to see if my cholesterol is going down.

I have always thought that vegans may be healthy, but they would probably die of boredom. This is a challenge for me, since I have zero creativity with food. Fortunately for me, Genevieve didn’t skip a beat.

What an amazing woman! I don’t know if there has ever been another cancer survivor who has had the kind of support that I have had from Genevieve. Not a word of complaint. She just cooked up something that didn’t have any dairy in it. I bought almond milk to put in my cereal and protein shakes (the protein powder has whey protein, but no casein), and we moved on. We had a few meal-planning discussions, and within a few days we made a trip to Powell’s Books to get a few vegan cookbooks.

I can’t say that this is going to be easy, and I’m not going to be perfect. For instance, I’m not going to give up baked goods because there is some butter or milk in them. But that will be a trace amount of dairy compared to a gallon of milk and at least a half-gallon of ice cream every week, which add up to 52 gallons of milk and 26 gallons of ice cream a year. Now, if my CT scan shows that the cancer is shrinking, I would be willing to get that radical.

In the meantime, if you see me walking around looking lustfully at somebody’s hot mocha or Frappuccino, try to cut me a little slack. I’m still in mourning.

Love,

Dann

NOTE: The Lung Love Run/Walk coming up on Saturday, June 23rd at Laurelhurst Park in Portland. We are raising awareness, and funding for lung cancer research.

Click here to join my team, Live Lung and Prosper.

If you would like to donate, click here.

And, even better, if you would like to form your own team, click here. 

Get My Book FREE this Sunday!

Friends and Family,

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

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

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

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

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

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

If you would like to donate, click here.

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

Love,

Dann

From Wounded to Warrior

Friends and Family,

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

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

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

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

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

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

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

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

Love,

Dann

What to Do on a Beautiful June Day

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

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

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

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

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

If you would like to donate, click here.

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

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

Love,

Dann

The Book is Here!

Friends and Family,

At long, long, long last, my book is finally ready! I am so excited to tell you about it!

Second Wind: Thriving With Cancer is packed with lessons learned through error and trial over the course of twelve years of living life in three month (between CT scan) increments. Hope, attitude, love, relationships, removing the cancers from our lives, acceptance – there was  lot of ground to cover. I wrote the book with survivors in mind first and foremost, but thought that caregivers, health care professionals, and just about everyone else would find it relevant and valuable. The feedback from those who have reviewed and/or proofread the book tells me that the book is hitting the mark. I’m excited to watch this unfold!

Here are a few of reviews:

This is one of the most thoughtful and useful books I've read, and certainly a must-read for anyone in the health professions. Beyond that, it is an amazing book for any of us trying to live consciously on this planet… I loved reading this!!! I laughed out loud!

~ Dawn Doutrich, Ph.D., RN, CNS Emeritus, Washington State University College of Nursing

Second Wind is emotionally gripping. There is a rare intimacy as Dann leads readers through his journey. The book is hard to put down. As a survivor I found myself saying, “I felt that, too!”

~ Charlotte de Renne, Breast Cancer Survivor

Dann's heartfelt, sincere account of his cancer journey touched me deeply. His work is inspirational and positive! I’m buying one copy for me, one for a friend that was newly diagnosed with stage IV cancer, and one for my oncologist.

~ Ginny Hicks, Stage IV Lung Cancer Survivor and Advocate

Here is a link to the Amazon page: https://amzn.to/2Etc98P. There is also a link button on the upper right side of this page on some devices, and at the bottom of the page in others.

If you buy the book, it makes a big difference if you also review it. Even if you just rate it by number of stars, it makes a difference. Amazon locates books with more reviews higher in their search results, meaning other readers will have an easier time finding it.

It’s hard to believe that this five year labor of love is finally out in the world. There were many times when it didn’t seem real. I’m very excited to hear what you think about it. And of course, if you hadn’t already guessed, it’s really all about you – because it’s all about love.

Love,

Dann

Which Guinness Will it Be?

Friends and Family,

Every time. I am stunned every single time this happens. Forty-one months after starting Tagrisso, Genevieve and I just got my latest CT scan results. No Growth! Is there a Guinness Book of Records I can check? I’ve already been on this med four times as long as the average. But averages are averages, and I am an individual. I hope every survivor who reads this keeps this in mind: SOMEBODY has to be the outlier. Why not you?

And yes, we are excited! I am still grateful every day.

This latest news makes for a tough choice:

                                               -      OR     -

It gets even better. With the help of twenty much-appreciated volunteer proofreaders, the final draft of my book, Second Wind: Thriving With Cancer is finalized and ready for publication. Release date is almost here! I can’t wait to share it with you! For this one, I’m only thinking about one choice:

I have one more thing to share with you today. The Portland Lung Love Run/Walk (LLRW) is coming up, on Saturday, June 23rd at 8:30 AM. Please join our team, Live Lung and Prosper, or start your own team, or consider donating. There is a $5 registration discount if you sign up by March 30th. Discount code: lunglove5

Here is the link to join Live Lung and Prosper or donate:  http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=2030&pg=team&fr_id=1250 

Here is the link to start your own team: http://engage.lungcanceralliance.org/site/TR?fr_id=1250&pg=entry

Since the LLRW benefits the Lung Cancer Alliance (LCA), I am passionate about supporting them. In fact, Genevieve and I will be going to Washington, DC in July with LCA to lobby Congress. Last time, I didn’t really know what I was getting myself into, so I went to DC without her. It was such an empowering experience that Genevieve decided to join me this year. Given the challenging political environment in Washington, and all of the efforts to cut health care spending, support for lung cancer initiatives is even more critical.

Hoping you can find the good news that is going on in your own life right now. It’s there if you look for it.

Cheers!

Love,

Dann

The Next Chapter... And I Can't Wait!

Friends and Family,

I’m so excited I can hardly stand it! My book is soooo close to being released! I’VE BEEN LOOKING FORWARD TO THIS FOR FIVE YEARS!

The last pre-release step is to Beta-test for typos, and this is where YOU can help if you like. If you are interested in getting the book before it is available to the general public, and willing to search the book for typos by March 16th, then you’re in. Just email me at DannThrives@gmail.com, and I’ll send you a digital copy.

I will send you a digital copy of the book. Once I get your feedback and make any necessary adjustments, the book will be released. I’M HOPING TO RELEASE THE BOOK BY APRIL 3RD!

I’m ready to share a few things about the book. The first is the title, which you already know if you looked at the book cover designs on the tab at the top that says “The Book.” The title is Second Wind: Thriving With Cancer.

Thank you all for your votes and comments on which cover design you preferred. Based on your feedback, the cover design is being finalized over the next several days. I’m loving how it is turning out.

And now, I’ll tell you just a little about the content. Even if you have read every single blog entry over the last twelve years, this will be 95% new to you. The first taste is to show you what will be written on the back cover:

_____________

This is one of the most thoughtful and useful books I've read, and certainly a must-read for anyone in the health professions. Beyond that, it is an amazing book for any of us trying to live consciously on this planet… I loved reading this!!! I laughed out loud several times! 

~ Dawn Doutrich, Ph.D., RN, CNS Emeritus, Washington State University College of Nursing

Second Wind is emotionally gripping. There is a rare intimacy as Dann leads readers through his journey. The book is hard to put down. As a survivor I found myself saying, “I felt that too!”

~ Charlotte de Renne, Breast Cancer Survivor

Dann's heartfelt, sincere account of his cancer journey touched me deeply. His work is inspirational and positive! I’m buying one copy for me, one for a friend that was newly diagnosed with stage IV cancer, and one for my oncologist.

~ Ginny Hicks, Stage IV Lung Cancer Survivor and Advocate

"Don't you ever get tired of being so positive?" my niece blurted out one day.

The question shocked me, five years into my fight with lung cancer.  Was my enthusiasm about my remaining treatment options so disheartening that even someone as upbeat as Stephanie struggled to see the hope in my situation? Was the way I was thinking that foreign to how other people think?

Over the next year, I came to understand that having cancer had changed more than my body. It had changed how I think. I had grown.  Not in spite of cancer, but because of it. Now I treasure every new part of this adventure, as I have learned to not only survive with lung cancer, but to thrive with it.

About The Author

Dann Wonser is a twelve-year, Stage IV lung cancer survivor that is still in active treatment. He is a public speaker, member of national and local committees on lung cancer, and lobbies both state and federal congress for lung cancer issues.

Cancer taught Dann lessons he never comprehended in the twenty-five years that he worked in mental health. Now, his priorities and his focus are clear. He is happily married to an extraordinary woman, and his quality of life has never been better.

100% of the profits from this book will be donated to lung cancer organizations.

Handling the Pressure

Friends and Family,

I was part of an online lung cancer forum last week, where a woman said that she was just about to start taking Tagrisso (my drug), and wanted to know how long it usually works. Someone offered the statistical answer, which is ten months. Another person said that it had worked for him for five months before the cancer started growing again. This was a shocker to me, given the success I am having. My own comment? I told her I had been on Tagrisso for 39 months without growth so far, that I know people that have been on similar drugs for five to seven years, and that she is not a statistic. Don’t let anybody tell you how long this is going to work for you!

The randomness of how long this drug works for different people was on my mind when Genevieve and I flew down to San Diego this Tuesday to see my oncologist, and get my latest scan results. I told myself I was confident this time, but my blood pressure said I was lying. Even though objectively I feel good and have no symptoms, my emotions and my body apparently don’t care about being objective when the stakes are so high.

The worry turned out to be unfounded. Dr. Patel popped his head in the door and said, “You’re scan is fine! No growth!”

It’s incredible how Genevieve’s and my world can shift in five seconds. Relief! Excitement! More relief! It’s not a new lease on life, but a three-month extension on the old one is pretty good! (Sorry, I work in commercial real estate, so this is what you get.)

Usually after we get the CT results, the same question runs through my head: Why am I doing so well, and for so long, when most others do not? I frequently think about all the ways you helped me grasp this. See Your Thoughts on Why I am Still Alive for the full list. Spoiler alert: There are a lot of reasons!

One of the items from that list stuck out more than usual this time. It was having a purpose, a meaning in life. Often something will come up, and I’ll think, “That’s it. I just can’t leave Genevieve by herself. I absolutely have to stay alive.” It’s amazing how often this is in my thoughts.

But this time, I was thinking broader. I have a purpose in life beyond Genevieve that isn’t complete.

That purpose is to help others going through cancer, and hopefully, to provide plenty to think about even for others who are not living with cancer. I do it in little ways, like comments on online forums, where I am attempting to bring hope to those following after me. I also try to accomplish this goal with my blog. And the big one, which is on my plate right now, is getting my book out. I want other people to benefit, and maybe be able to take shortcuts to lessons I had to learn by trial and error over the past eleven and a half years. I can’t drop off the planet when there is still so much to do!  

Right after seeing Dr. Patel, Genevieve and I had another appointment. Of course, they took my blood pressure again.

It dropped 28 points.

I guess the pressure was off. :-)

Love,

Dann

A Link to the KGW Story, and Book Cover Voting

Friends and Family,

Here's a link to our segment on KGW with Tracy Barry: Ending the Stigma to Lung Cancer

The story turned out really great. Dawn did an amazing job. Genevieve and I were left on the cutting room floor, but we are both happy with how it turned out. The message was clear, and Tracy hit every key point.

Separate topic: Thank you to everyone for your votes and great feedback about my book cover design.  The response was overwhelming. You responded on my blog, by email, and on Facebook. Although I haven't responded individually, I want you to know how much I appreciate your taking the time. I'm glad that some of you also found it to be fun!

Love,

Dann

Watch for Our Segment on KGW, and the Book is Coming!

Friends and Family,

The story that Tracy Barry of KGW put together about living with lung cancer will air on Tuesday, December 19th at 6 PM on KGW TV in Portland. The focus will be on Dawn, a good friend who has been living with lung cancer for three years. Genevieve and I will also be a part of the story. This is Dawn:

SEPARATE NEWS: I'm getting close to publishing my book! The title is Second Wind: Thriving With Cancer.

Now I need your input for the cover design. THERE IS A NEW TAB AT THE TOP OF THIS PAGE. Go to "The Book" and add your vote!

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 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. :-)  

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. 

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. :-)

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.

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