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 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

Invitation to Upcoming Events

Friends and Family,

I’m happy to say that there is no news on the health front at this time. It will be a couple of weeks before I get my next scan results. However, I did want to invite you to join us at two different events where Genevieve and I will be involved:

ACS CAN (American Cancer Society Cancer Action Network): Thursday, November 10th, 7:30 – 9:00 at the MAC Club in Portland. It’s a 90 minute program that will start with me sharing my story of living with lung cancer for ten years, followed by a panel, including me, discussing personalized medicine in lung cancer. I believe that there is no cost. Here’s the link to the event:  http://www.acscan.org/events/view/event/2667

Lung Force Expo: November 4th, 10 AM – 3 PM: Packed conference with something for everyone connected with lung cancer. I will give a talk on how to be your own advocate, and Genevieve will tell her story as a caregiver.  See http://action.lung.org/site/TR/LUNGFORCE/ALAMP_Mountain_Pacific?pg=entry&fr_id=14582 for full program and registration. There are separate tracks for survivors/caregivers, and for health care providers.

Love,

Dann

Lung Force Expo is Coming to Oregon!

Friends, this is the event where I will be leading a session called "Being Your Own Advocate," and Genevieve will be sharing her story as a caregiver. There is much more going on. I love the agenda for this year's event. Here's the official presser: Find resources, information and support at the LUNG FORCE Expo. This one-day, educational event at the Monarch Hotel and Conference Center on 11/4/16 is designed for lung cancer survivors and their caregivers to learn more about the latest resources, research and developments related to lung cancer. To learn more check out: http://LUNGFORCE.org/Expo.

A Tale of Three Cities

Friends and Family,

To quote Dickens: "It was the best of times..." I have to stop there. There are no worst of times to tell you about. And not that I'm trying to one-up Dickens, but I'm going to tell you about three cities. 

CITY #1: SAN DIEGO: If it seems like only a month ago that I had my last CT scan, that's because it was. Due to city #2 in today's email, we were bumped to the earliest day that still fit in the clinical trial acceptable time frame. The news is, once again, thrilling! No growth! I've now been on this trial for 23 months, a full ten months longer than expected without growth. My plan: Set the record, and give others hope that they can do the same. Working on it! In the meantime, we are now visiting...

CITY #2: LAIE, HAWAII: Health care providers and survivors alike often bring up the issue of quality of life. As in, "Sure, (he, she, I) could try chemo, but would the quality of life be worth it?" To me, the answer has been an unequivocal YES every time. Chemo twice, two lung surgeries, radiation, a stunning period of 11 months being on absolutely no cancer meds while the cancer remained stable, and three really easy-to-live-with treatments (Avastin, Tarceva, and Tagrisso/AZD9291). There is NO POINT during this that I felt like the treatment wasn't worth the price of admission, even if the treatment had turned out to be ineffective. Actually, the second time I had chemo it didn't do anything, but it was worth trying. Life is precious, and a little thing like my body feeling like crap during chemo isn't going to change that.

I'm still trying everything I can do, and I have to say, my quality of life is spectacular. Today, Genevieve and I are celebrating our 20th anniversary of our marriage - happiness together beyond anything I could have imagined. I'm still in love, I still treasure my beloved, and I am grateful for every day together.

Sweetening the celebration even more, we are in Hawaii right now! 'Nuff said... Except it's not! Because this time, my son Mike, his wife, and three of our grandchildren are with us. Since they live in the Philippines, and I don't travel that far from treatment, seeing them is a rare treat. Nothing beats boogie boarding with the grandkids for a bonding experience!

My attitude has shifted over the past couple of the years, which is why telling you about   CITY #3: PORTLAND is a big deal to me. When I was first diagnosed ten years ago, I was thinking of my lifespan in months, not years. I was wondering if I had seen the seasons change for the last time. Since then, I have been blessed with the gift of life for much longer than I could have hoped. Combine this with being inspired by other survivors at the LUNGevity HOPE Summit in Washington D.C. for the past couple of years, and I am more motivated to do what I can for others. That's why I contacted the American Lung Association (ALA) last year, to see how I could help.

It turns out that there was a way to help. Last year they had their first Lung Force Expo in Portland, and they were planning another one for this year. I got on the planning committee, brought in other survivors, and since I didn't step backwards when they asked for volunteers, I ended up chairing it. Together with health care professionals, we put together an agenda that I really like for this year's conference. 

Not only that: Genevieve and I will both be speaking at the conference. 

Mark your calendars: LUNG FORCE EXPO

FRIDAY, NOVEMBER 4, 2016 from 10:00 AM to 3:00 PM at the Monarch Hotel.

Lung Cancer Survivor-Caregiver Track Topics:

·       Being Your Own Advocate

·       Immunotherapy

·       Questions to Ask Your Lung Cancer Doctor

·       Stress Reduction Techniques

·       Nurse Navigation and Palliative Care

·       Caregiver Support

I will be the M.C. and speaker for the Being Your Own Advocate session, and Genevieve will be kicking off the Caregiver Support session, by sharing her story as a caregiver. 

There is a separate track for health care professionals, which I also like. There are CEU's available for the professionals. Cost increases significantly for professionals after October 7th.

To sign up, go to http://lungforce.org/Expo. Deadline for getting the early-bird conference rate is October 7th. If you can't afford it, the fee can be waived.

So there you have it. Three cities, three different stories, three happy endings. Maybe not enough suffering for a classic like a classic Dickens story, but I kinda like it like that.

Love,

Dann 

Pass it Forward: I Need Your Advocacy Stories!

Friends, 

I've got something exciting going on, and I need your help. We, meaning the American Lung Association with the help of some fellow survivors and some health care professionals, are putting on a conference under the "Lung Force Expo" banner. I will be leading one of the sessions for survivors, titled "Being Your Own Advocate." I will be sharing my own stories of some of things that Genevieve and I have done that have helped keep me alive. I will also include stories from as many other survivors (you!) as possible, so the survivors who attend get a really great cross-section of ideas of ways that they can use to improve their chances of survival. By sharing your stories, you will be empowering others to find ways to stay alive!

To give you an idea, some of the examples that I will be using include the hoops that I jumped through to get into a clinical trial that my oncologist didn't even know about, which is a thousand miles from my home; switching doctors when my oncologist's office was unresponsive after my cancer grew; and Genevieve's advocacy to get my oncologist to start me on a med without waiting for insurance approval (http://www.dannwonser.com/blog/2011/09/chemo-update-its-about-love-september.html).

I have gathered a few other examples from survivors over the years, but not nearly enough. I need your stories! You can tell me in two sentences, or write a full two-page story about your experience. It will be anonymous, unless you specifically give your permission to use your name. You will be helping other survivors to become better advocates for themselves.

Don't worry about whether your example meets any kind of criteria. If you saw it as advocating for yourself, that sounds pretty good to me. Chances are it is better than you think for someone just starting out with cancer.

Let's give them everything we've got, and empower them! 

Thank you,

Dann

 

My Oncologist has a Big But

Friends and Family,

We returned from another trip to San Diego, and got the results of my latest CT scan. Here’s one word that you don’t want to hear from your oncologist:

But.

As in, “Your CT scan showed no growth in the cancer, but…”

Is this the beginning of one of those good news/bad news jokes?

It turns out the “but” was, “but the scan showed a blockage in the carotid artery in your neck.” As in, the artery that goes to my brain?

It could be a blood clot, or it could be an error in the test, or it could be something else. Neither Genevieve nor I asked what “something else” would be, since this just didn’t make any sense. We both decided on the spot that we were not going to give this any attention until we had more info. Even though several otherwise-healthy people that I know with lung cancer have gotten blood clots, it didn’t make sense for me, because I’m too physically active.

Can you hear my brain cranking out denial scenarios?

de Nile 

de Nile 

But here’s the thing about trying to keep this out of our minds: We can tell ourselves that the likelihood of a real problem is low, BUT (there’s that word again), if it is a real problem, it is going to be a whopper. Fortunately, the clinic was able to squeeze me into a last-minute opening for an ultrasound of my neck, which dovetailed perfectly with our return plane trip to Portland. We wouldn’t have to wait and ruminate any longer than necessary.

The next morning, the nurse called (always a good sign), and said that the ultrasound revealed no problems. The CT scan results were an error. Just like that, and we’re back to no problems.

I know that saying “no problems” sounds odd, since I still have lung cancer, but that’s different. Genevieve and I have been living with that risk of death for ten years, and have developed differing degrees of acceptance for what may happen. If I were exposed to a different kind of risk, like skydiving or bungie jumping, or a stroke from a blood clot ready to take the highway to my brain, my fear level is going to skyrocket. Totally different. 

Disclosure: Tushi in this picture is representative only. Actual tushi may vary in age.

Disclosure: Tushi in this picture is representative only. Actual tushi may vary in age.

So that’s what I learned about myself this time around: Fear is situational. We risk our lives every day in a car, but have no fear. For many of us, that’s very different than the statistically lower risk of dying in an airplane crash, yet more people fear airplanes.

So I’m calling this trip another success, with nothing new to fear, and the old fear kept at bay, for at least another six weeks. The weather in Portland is beautiful right now, and life goes on.

Love and peace to you.

Dann