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

Confessions of a Smuggler

Friends and Family,

I've written a lot about our trips to San Diego, but there is one part of it I've never shared. It's that I'm actually in two clinical trials. 

On our first trip down to San Diego, Dr. Hussein, a researcher, asked me if I would join a second study. This one was simple: All I needed to do was spare a little extra blood and urine. He was working in conjunction with other clinics to develop "liquid biopsies." 

The plan was to track cancer cells in blood and urine, with the goal of being able to identify when the cancer was dying off or growing. If successful, this could decrease the need for CT scans dramatically. So why wouldn't I want to help this effort? 

"There's more," Dr. Hussein said. Then, as part of his sales pitch, he showed me a CT scan of someone's lungs a week before starting AZD9291 (AKA Tagrisso), and a week after. The difference was remarkable. The amount that the cancer had shrunk within the first seven days was stunning. Now that I was properly motivated, he asked me if I could give him consecutive samples, so they could track the dying cells in my urine. Twenty-four days in a row. 

Sounds easy, right? Did I mention this was in San Diego? We were flying Spirit(less) Airline at the time, the airline that even charges extra for a middle seat in the back row if you so much as ask to choose your seat. You can bring a SMALL carry on bag, but even a medium bag brings a hefty penalty. So my first challenge was smuggling a case of 24 urine bottles onto the plane without getting hit for a baggage fee. I put my backpack on, and stayed facing the gate attendant until I was almost walking backwards to get on the plane, so the thickness of my backpack stayed hidden. Yes, I admit it. I'm a big, bad, urine bottle smuggler.

After that, all I had to do was collect a daily sample, and keep it in my refrigerator. For three and a half weeks, we made sure to grab anything needed out of the fridge, so our guests wouldn't open it and be tempted by the little bottles of apple juice. Or think something crazy, like that we were storing urine in our refrigerator. Then we had to ship it. I was pleased to find out that there is no law against shipping a case of urine by UPS or FedEx.

All this has now paid off. I am pleased to say that a liquid biopsy has recently been approved for testing for EGFR, and the approval for my mutation. The test for T790M has now been proven to be effective based on my trial, so approval should be coming along soon. So how will this be used?

This is the exciting part. Dr. Hussein told us that, so far from his experiences, the liquid biopsy has detected the growth of the cancer one to four months BEFORE it showed up enough to be visible on a CT scan. 

Once the full compliment of these tests is available, the possibilities get even more exciting. When someone is stable, they may be able to go off all meds, and not start again until the cancer starts growing. No pills means no side effects, which is fantastic. Also, with pills that cost $200-$300 each, this is no small savings.

Better yet, we won't have to wait six to twelve weeks before having a CT scan to see if a new med is working. We'll know almost in real time. As it is, if the med doesn't work, the cancer continues to grow. One or two unsuccessful treatment attempts in a row can be fatal, because the cancer has too much time to grow and metastasize before we know that treatment didn't work. There will be more room for multiple trials when the results come back before the cancer has grown much.   

We'll know which med to give without needing a new, invasive biopsy every time. This will also speed up research, since we'll get feedback on what is and isn't working much quicker. That means new and better meds will get on the market faster. I love where this is going! 

For all these reasons, I'm glad I made the sacrifice to become a big bad urine smuggler, and to keep all that apple juice in our fridge. And if you come over to visit, just know that our fridge has been scrubbed very, very carefully.

Love,

Dann

 

Ten Is My New Lucky Number

Friends and Family,

Genevieve and I went to San Diego last Tuesday, and once again got the unbelievable good news that the cancer is still not growing! To put icing on the celebration cake, on July 10th, I reached an incredibly rare landmark for a lung cancer survivor. We celebrated my ten year cancerversary!

It's hard to believe that ten years ago I sent out my first deer-in-the-headlights email, shocked by the news that I had cancer. The treatment options were very limited back then: Chemo, and surgery to remove one of the lobes of my lungs. Radiation was also an option, but wouldn't have been useful in my situation. My expected lifespan at that time was measured in months, not years, and the odds of beating it were slim. Of course, it  took more than treatment to get me through: There was – and is – love and support from family, friends, and of course Genevieve. She makes artwork designed to hit the optic nerve and bypass the rational mind to send healing. There is a crystal grid around our house. There is a purple healing plate to put my Tagrisso on. I could go on for another half-hour about all the things she does, but let's just say that we have different interpretations of what they all are doing for me. To me, they all boil down to love.

Exercise and diet also helped, and let's not forget attitude.

It started with this:

And went on to this.

That was a successful formula to keep me in remission for almost five years, until I was diagnosed again in 2011. How did I handle it the second time around? I doubled down on all of the things that were already working for me, and my attitude continued to improve. Now, I think a lot more about healing, both for myself and for others. And I have more capacity to do things for the benefit of others, like lobbying congress. Genevieve and I flew to Phoenix for some public speaking recently. I’m chairing the planning committee for a workshop for survivors and caregivers with the American Lung Association in Oregon. Mark your calendar: The Lung Force Expo is coming up November 4th.

I never forget that I have had the extraordinary good fortune of incredible timing. This time around, traditional chemo had no impact, and surgery wasn't an option, since the cancer was everywhere in my lungs. If this was 10 years ago and these treatments had no impact, I would no longer be alive.

Three of the four treatments that have kept me alive this time - Avastin ("chemo lite"), Tarceva, and AZD9291 (AKA Tagrisso) - weren't even available the first time around. Tarceva came on the market just months before I needed it. The AZD9291 clinical trial was available only weeks before I needed it, and closed two days after my first appointment. How lucky can one guy be?

So ten is my new lucky number. It’s not only the number of years I have stayed alive after this diagnosis. It’s also a good reminder of the incredible timing I’ve had so far. It feels like I’ve been riding a big wave, and needed that timing. If I crash, there are no second chances. If I got on too early, the wave would crash down on me. If I got on it too late, I’d miss it. If I don’t keep my balance, I’d be under water. What’s the surfer’s answer to this?

Hang Ten!

Love,

Dann

 

Celebrating National Cancer Survivors Day

Although we don't always get excited by every group we're involved with, this is one I'm thrilled to be a part of. It's National Cancer Survivors Day! To commemorate the occasion, the Lung Cancer Alliance asked if they could use one of my posts on their website. It has the same content as you will find under the "Newly Diagnosed?" tab above, but with different photos. I'm honored that they consider this important for survivors to read. Here's the link: http://www.lungcanceralliance.org/blog/a-note-for-those-newly-diagnosed/

The Latest Trip to San Diego Was... ???

Friends and Family,

We just returned from another trip to San Diego for my clinical trial, and the trip was… well, I’ll let you decide. It went one of two ways, depending on how you look at it:

THE FIRST VERSION: It started out as a mess. We had our tickets backwards, so that we were scheduled to fly FROM San Diego TO Portland in the morning, and then return to San Diego in the evening. As we attempted to board the plane in Portland, the ticket agent spotted the problem and pulled us out of line. She had us call the Alaska Airlines reservations number, where I was told that there would be a $222 dollar change fee for the morning ticket, and that there were no flights available coming back to Portland. After I got off the phone, the ticket agent told me that cancelling the flight back meant that we had just lost the price of our return ticket (not to mention that booking a last minute ticket on another airline was going to cost a fortune). I planned to get tickets back to Portland on another airline when we landed, but we were already pretty tense. We finally got it resolved so that we could fly back through Seattle to Portland, which would get us back in Portland very late. We barely made it on the plane before they closed the doors.

However, the scheduling at UCSD had gotten screwed up, so we didn’t know if my first appointment in San Diego was going to be at 11 AM or 1 PM. The email response I got back from my Clinical Trial Coordinator before we got on the plane: “I think it’s at 11 AM, but I’m not sure. I’m on vacation.” We didn’t know whether we should drive straight to UCSD, or whether we had a couple of spare hours. AFTER we landed, we got a last-minute email saying that the first appointment would be at 11. We made it on time for my appointments, and there were no changes in my CT scans.

We raced back to the airport to try to get on a direct flight that would get us to Portland five hours earlier, but we missed it by minutes. We eventually flew to Seattle, then raced to the other gate five minutes before the plane to Portland took off. However, we had it wrong. The plane BOARDED at that time, but didn’t depart for another 40 minutes. More waiting. Once we got on the plane, the pilot announced that the gates in Portland were backed up, so we would be delayed…. getting home even later. We finally got home and into bed shortly before midnight.

HERE'S THE SECOND VERSION OF OUR DAY: We had our tickets backwards, so that we were scheduled to fly FROM San Diego TO Portland in the morning, and then return to San Diego in the evening. After the Alaska Airlines reservation center couldn’t find a solution, Mindy, the on-site ticket agent, saved our day. She worked rapidly and calmly to repair our tickets before the gates closed. Using multiple back-door administrative overrides with the help of her coworker, she changed our tickets so that we flew out on time, and routed back through Seattle rather than losing that return ticket. She found a way to do it at no charge to us. Her act of kindness got us onto the plane just in time, and with no change fees whatsoever. She was our hero!

We got a lucky break with scheduling at UCSD. Our favorite Clinical Trial Coordinator filled in at my appointment, and she is always a treat. Of course, the highlight was when Dr. Patel walked in and announced the spectacular news: NO CHANGE in my CT scans… AGAIN! I have now been on this medication for six wonderful months longer than the average, and I’m still going strong! How lucky can one guy be???

We got out of the hospital quicker than expected, and arrived just after a direct flight to Portland had closed their jet-way doors. However, it planted the idea that there may be times in the future when we can get to the airport early enough see if we can bump up to an earlier flight. This may make future travel days easier.

We flew into Seattle, and then we had more time than we thought to catch the next plane. The pilot on that plane to Portland announced that the gates in Portland were backed up. Rather than waiting on the runway, he took the plane on a scenic detour… right over Mount Saint Helens! We were fortunate enough to be on the “view” side of the plane. We were so close that I had to lean over Genevieve to see into the crater! Better yet, it was a prop plane, so it flew lower and slower, making the view that much better. What an adventure!

We got home late, still talking about how Mindy had saved our day, saved us a boatload (planeload?) of cash, and showed us the difference that kindness can make. I will be writing a letter to her boss to express our appreciation.  

So which view of this day would you guess I would adopt?

Here’s my answer: When we got back to the San Diego airport on our way out, I bought something at one of the shops. After she rung up my purchase, the clerk asked, “How has your day been?” I paused to think, and felt a big grin spread across my face.

“Spectacular,” I said.  

Now tell me: How has YOUR day been?

Love,

Dann  

NOTE: Join me on Saturday, June 11th for the Lung Love Run Walk to raise funds for lung cancer advocacy and research. My team, Live Lung and Prosper, still has room for new members or for those of you who wish to donate. Here's the link: http://engage.lungcanceralliance.org/goto/livelung