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:

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 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.



Pass it Forward: I Need Your Advocacy Stories!


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 (

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,



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:


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.


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.




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!




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:

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?



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:

Back in Washington, DC... Again???

Friends and Family,

If you would have told me a year ago that I would be lobbying senators and representatives in Washington, DC, I would have thought you were nuts. Since that’s exactly what happened last week, maybe I’m the one who’s nuts. How did I get myself into this???

Part of this answer is that I have been given an exceptionally rare gift for someone with Stage IV lung cancer: I am still alive after almost ten years. It is important to me to make good use of this gift.

Here’s the other part: The Lung Cancer Alliance puts on an annual Lung Cancer Summit. Even though I thought the description of the summit was vague, and I had just gotten back from the LUNGevity HOPE Summit in DC twelve days earlier, I signed up and held my breath. Imagine my surprise when I found out that the entire summit was organized around prepping100 survivors, caregivers, and other advocates to lobby our government!

After a day of training, we stormed the Hill. Oregon and Washington people went as a team, and met with the offices of four senators and five representatives. This is not an easy logistical feat: You meet when they tell you that you can meet. That meant that we walked over 11,000 steps (5+ miles) crisscrossing from the House to the Senate side of the Capital Mall, while getting maximum use of our umbrellas.

Although most of the time we met with staffers, three of our meetings were with our leaders themselves. My personal highlight was meeting Rep. Suzanne Bonamici from my district, who was exceptionally receptive and open to new information, not to mention charming. Rep Greg Walden was the biggest surprise: He was gracious beyond imagination, and openly supportive. TV coverage doesn’t tell you everything.

All of the staffers we met with seemed in support of our agenda by the time we left. Many told us that our visit made a difference, and that they had never had anyone talk with them about lung cancer before. Almost everyone we talked with had been touched by cancer in one way or another, and then touched again by our stories.

Dawn, Charlie, Cecilia, Mary, Ginny, and me in front of Sen. Ron Wyden's office

Dawn, Charlie, Cecilia, Mary, Ginny, and me in front of Sen. Ron Wyden's office

Our biggest success was at the end of the day. We were asking all of our leaders to sign on to a bill ( it’s a mouthful – “Women and Lung Cancer Research and Preventative Services Act of 2016”) that was being introduced that day in both the House and the Senate, with bipartisan support. WHAT? Bipartisan support for ANYTHING in 2016? Sen. Maria Cantwell agreed to be an original sponsor. That meant we had sponsors from both parties, in both houses, which is what our leaders were waiting for before introducing the bill. By the time we got back to our hotel, the bill was introduced in both the House and the Senate!

The rest of our agenda was to ask each of the Representatives to join the Lung Cancer Congressional Caucus (keep them informed, band together on issues), and to seek increased funding/more parity for lung cancer research. It was my job to bring awareness to this need. I shared with them that, although lung cancer kills more people than the next three cancers COMBINED (breast, prostate, and colon), and more women than breast and all gynecological cancers combined, the funding is not on par. Funding is 4x greater for colon cancer, 6x greater for prostate cancer, and 13x greater for breast cancer. Yet the survival rate for lung cancer is still a pitiful fraction of what it is for those other cancers.

Lung Cancer Comparative Graph.jpg

Okay, I’m back off my soapbox for now. Maybe until next year, but I won’t promise.

Meanwhile, I will do what I can to help out the Lung Cancer Alliance. We are having the annual Lung Love Run/Walk on Saturday, June 11that Laurelhurst Park. I would like to invite you to join my team, Live Lung and Prosper, if for no other reason than it’s a great name. :-)  Last year we had a lot of fun, with some of the group walking and others running.

To join my team or donate, go to  For more details about the event, go to

Looking forward to seeing you there!



The HOPE Summit Lives Up to Its Name

Friends and Family,

Genevieve and I just got back from the LUNGevity HOPE Summit, and I wanted to share a few of the highlights.

The first highlight was having Genevieve to share this with me this year. She soaked up a lot from the conference, and at the same time, she got a little overwhelmed, just like I did last year. Being in a conference with 300 people, and confronting such an emotional topic non-stop for a few days, has a way of doing that.

I was buzzed by being around roughly 200 lung cancer survivors. And it's not just the shear numbers; it's also the attitude! Just read about how last year's group handled a DISASTROUS BUS RIDE to get a feel for what I'm talking about.

Here are a few highlights:

In the past year, there have been more new lung cancer drugs approved (7) than in the previous 15 years COMBINED (6). It gets better! There are 123 new drugs currently in clinical trial. Just hang on a little longer, and the menu of treatment options will open up. It's a great time to be a lung cancer survivor!

Something else struck me when we got the ten-year lung cancer survivors together for a photo. (OK, I fudged by a couple of months to get in, but close enough.) After Genevieve took the picture, she pointed out that I was the only man. How can this be? Are the women out-living the men, or does this just tell us about who shows up at a conference?

Which one of these is not like the others?

Which one of these is not like the others?

One more major point that hit me, just as much as it did last year, was what incredible advocates we have within our ranks. These are the people that pull together fund-raisers, meet with Congress, organize walks, sit on boards to determine where research funds should go - The list is endless. This year, it hit me again while talking with Lysa Buonnano, Don Stranathan, Deana Hendrickson, and a few others. And I seriously think that we should have an annual Janet Freeman-Daily Award (the first one goes to Janet), to honor those who are doing so much to change the face of research, education, funding, and treatment within the field. These people inspire me to do more than I thought I could.

With so much momentum carrying us in a positive direction, I want to thank you all again for your donations to LUNGevity. Together, we raised $2,710. Now more than ever, your donations are having a big impact on curing cancer.

With Love and Gratitude,





It Doesn't Always Have to be Hard

Friends and Family,

Sometimes things are complicated, and sometimes we just make them that way.

Take back pain, for example. Mine wouldn’t go away with physical therapy and a cortisone shot to the disc. Since the first shot didn’t work, I had a SECOND cortisone shot, which also didn’t help. Meanwhile, my physical therapist politely fired me, because nothing was working. My pain doctor ordered an MRI to see what we might be missing. He thought it could be something random, perhaps. Like maybe cancer, since there’s a bit in the spine already.

Genevieve was still putting my socks and shoes on every day, because I couldn’t even bend enough to touch my knees. I can’t believe I’m telling you this, but here it is: So that I don’t have to bend, I have been using a hand grabber to help me put on my underwear every day.

Sorry - There are limits to the images I'm going to show.

Sorry - There are limits to the images I'm going to show.

Here’s where the not-so-complicated part comes in. Genevieve and I went on our annual Spring trip to Hawaii. It turns out that long walks on the beach, swimming in the ocean, and glasses of wine at sunset with a tropical breeze work better than shots in the back and carefully prescribed exercise. Who knew?

Back pain, on a scale of 1-10, before Hawaii: 3 to 7.

Back pain after Hawaii: Zero.

Which got me thinking about cancer, like just about everything does. If this worked for back pain, maybe it would help with cancer, too.

So I thought relaxing, healing thoughts, and almost didn’t worry at all before the latest CT scan and trip to San Diego to see my oncologist. I was feeling good enough to start climbing stairs again, and go back to the gym. Of course, exercise lifted my mood even more.

As you may have guessed by the tone of this email, my latest CT results are fantastic! Again defying the odds, my cancer has remained completely stable. Yessssssssssssssssss!!!!!!!!!!!!!!!!!!!!!!

Each time we return from our trips to Hawaii, my goal is the same. I try to have that relaxed feeling last longer than the tan. I have never succeed, but it’s always worth trying, don’t you think? Maybe these images will help you and me both get a little closer to relaxed.

How could this NOT help?

How could this NOT help?

Genevieve found a glass ball!

Genevieve found a glass ball!

Kevin and Heidi brought us smiles every day.

Kevin and Heidi brought us smiles every day.

It helps to bring a professional photographer with you. Thank you, Heidi!

It helps to bring a professional photographer with you. Thank you, Heidi!


A special thanks to each of you who contributed to the LUNGevity HOPE Summit Survivor Challenge. I needed to raise $1,000 for my trip to Washington, D.C. Together, we raised $2,010. But wait - There's more! With Macadam Forbes’ matching grant of $500, we raised a total of $2,510! These funds will be used for research, as well as education and support for all who are affected by lung cancer. Thank you!



My Tribute to Craig

Friends and Family,

Now that I have had a few days to think about this, I can move past feeling just the loss of my friend, and begin to celebrate his life. After all, Craig Blower not only impacted my life; he may also quite possibly have saved it.  And in the telling of the story of our friendship, you may see some things that could make a difference for you, too.

It was an unusual way to start a friendship. Genevieve and I were in San Diego for Christmas, where her extended family gathered every year. With time to kill, I started surfing the web, and came across a cancer blog. The guy had very similar experiences to my own, and he was a pretty funny writer. I instantly liked him. I discovered that he lived in San Diego. I couldn’t pass up this opportunity, so I reached out to him through his blog and arranged to meet for coffee.

We hit it off right away. Neither of us had met anyone else with lung cancer, and we both had adenocarcinoma with the EGFR mutation. We started on Tarceva at about the same time, and we even had radiation to our hips at about the same time. We swapped stories about our remarkably similar treatment course, our families, and our lives.

Over future visits to San Diego, we included our wives – both who are wonderfully supportive – in this expanded friendship. The more we talked, the more similarities we found. Not just age and treatment, but even things like going to Hawaii every year, remodeling our kitchens within months of each other, and being the youngest child in our large families before a younger sibling came along years later. Craig came to call all these freaky similarities a “Lincoln-Kennedy thing.”

Eventually, Craig’s treatment with Tarceva stopped being effective. His oncologist referred him to UCSD to participate in a new clinical trial. That is how Craig came to be the first person in the US to get started on a new targeted genetic treatment, AZD9291 (now Tagrisso).

The results were remarkable. After just six weeks of treatment, his new oncologist took his before/after CT results on a road show to other oncologists. Until that point it had been challenging to recruit treatment subjects, but Craig’s Fabulous Makeover results led to a quick spike in enrollment in the study.

Almost too quick, as it turns out, for me. Just a couple of months later, CT scan results showed new growth of my own cancer. My oncologist was scrunching up his face, looking at the floor, and telling me he really didn’t have any good options for me.

“What about AZD9291?,” I asked.

“That’s in clinical trial now?”

“Yes,” I said. “In New Hampshire and San Diego.”

“San Diego is a thousand miles away.”

That’s right,” I said.

I wasn’t going to let a thousand miles, or my oncologist’s lack of knowledge about this clinical trial, stand between me and life-saving treatment! As soon as I got home, I called Craig and got the contact info for the clinical trial. Early the next morning, he called to tell me that the clinical trial was going to stop taking new applicants very soon, so I had better act quickly. It turns out that I only had until the end of the day to submit all of my medical records for the past eight years. With an enhanced sense of urgency, I made the deadline by the skin of my teeth. Sixteen months later, the treatment is still working for me.

That wasn’t the last time Craig had a major influence on my life. The following Spring, I saw that there was a conference in Washington, D.C. called the LUNGevity HOPE Summit. It sounded interesting, but I told Craig that I would be more interested if he went. The expense was also a factor. He gave me good news on both counts: He was planning to attend, and I could apply to go to the conference with all expenses paid, since it would be my first time attending.

That tipped the scales. I went to the conference, which inspired me in ways I didn’t expect. After meeting all those incredible survivors who were doing so much for the cause (not to mention getting a better sense of all the things that Craig was doing), I came away with more hope, and with a stronger sense of how I could be an advocate for lung cancer myself. Since that time, I have become actively involved with and their Facebook LVNG With Lung Cancer community, I have been interviewed for a couple of oncology waiting-room newspapers and magazines, done public speaking, and volunteered with the American Lung Association. Had Craig told me he wasn’t going to the HOPE Summit, and not mentioned that I could go for free, all of these wonderful changes in my life might not have happened.

A year ago, Craig started getting some growth in his cancer again. At first it was questionable, but from the beginning it was enough to worry him that he could get kicked out of the clinical trial. Each scan after that showed a little bit more growth here, then a little more there. Craigshared that he contacted one EGFR guru, but the specialist didn’t have time to see someone for a one-off consultation. It seemed as if Craig started hanging on even tighter to his only lifeline, which was the clinical trial he was in. His oncologist didn’t have any new ideas for him, other than to radiate new spots as they popped up.

While Craig's oncologist was telling him there was nothing else out there, I was feeling pretty helpless as his friend. In desperation, I started urging him to get a biopsy and a second opinion. The biopsy would tell if another targeted genetic treatment might work for him, and the second opinion might tell him if there was some idea his doctor had missed. However, given the choice between trusting your oncologist, who could kick you off the treatment that you believe is saving your life, and following the advice of a friend with no medical training, it’s easy to see why he stuck with doctor’s orders. Eventually his doctor did a biopsy, and they found that he had a genetic mutation that could be treated in a new clinical trial. However, the trial was in Boston. Craig scheduled his initial appointment, but it was already too late. By then, his health was too compromised to travel. As Kim said around that time, he was fading in and out of lucidity from the pain meds.

It was right at that time, a week before Craig passed, that I had another appointment with my oncologist in San Diego. Genevieve and I arranged with Craig’s wife, Kim, to see Craig on our way from the airport to my appointment. It broke my heart when she told me on the phone that Craig was worried that he would disappoint me, because he didn’t make it to Boston. I made sure to tell him that I was sorry he wasn’t able to go, but that it would not have been humanly possible to get there.

I also thanked him for quite possibly saving my life, but he dismissed it with a wave of the hand. “You would have found another way.”

I am pleased to say that I had better success with his acceptance of my final words to him:

Thank you for being my friend.



*** A Special Request - UPDATED ***

I'm participating in an event to raise money to fight lung cancer - and I need your help! 

I will be attending the LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. Since I was able to raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations. However, I have raised the bar, and I am trying to raise as much as I can for LUNGevity. AND NOW THERE IS AN ADDED INCENTIVE.

THIS IS THE NEW PART: The wonderful, compassionate, and very supportive partners at the real estate brokerage in Portland where I work, Macadam Forbes, are offering a MATCHING GRANT. FROM TODAY FORWARD, THEY WILL MATCH ANY NEW DONATION, DOLLAR FOR DOLLAR, UP TO $500. If you give $10, you will be raising $20 for LUNGevity. If you give $100, you will be raising $200.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

If you wish to donate, please go to my LUNGevity page:

CT Results + More: Feeling Blue and Seeing Red

Friends and Family,

We have another trip to San Diego this past week. The results of my latest CT scan are, incredibly, unchanged. I have beat the odds… again! So much has gone right:

  • There was a 50/50 chance that I had the right mutation to get on AZD9291 (now Tagrisso), and I won that lottery.

  • This treatment is effective for 70% of the people. Guess which group I fall into? J

  • AZD9291 is usually effective for about 13 months. I reached 13 months in November, and I’m still doing great!

  • UCSD will participate in the clinical trial for the next generation treatment (yesssss!!!!!), and will hopefully have the trial before I need it.

I have every reason to be deliriously happy at this point. So why am I feeling so blue, and seeing so much red? I even yelled at someone the other day, and had to restrain myself from doing the same with a second person. Of course, it wasn’t called for in either situation. Put those two colorful moods together, and I have turned into one, big, purple, bruise.

It feels so wrong to have everything go so right, and yet still be feel this bad.  There’s no reasoning with feelings, however. Trying to change your feelings is very much like trying to change your spouse: It ain’t happening! Everything works out so much better if you just listen. (No, I’m not sucking up to the women who read this.)

Okay, I’m listening. Number one, I had my third annual torn-disk-in-my-back event. I can’t reach below my knees in the morning before I’ve iced my back and had a pain killer or two. Saint Genevieve has been putting on my socks and shoes every day for more than a month.

At least this time, I know how I did it. I’m sure it looked like I slipped on a banana peel when I fell flat on my back. Ah, but this time I thought I had the problem licked. Since I have my pain management doctor on speed dial, I got a cortisone shot  in the pesky disk within a lightning-fast two weeks. But after a little progress, things started getting worse again. I’m scheduled to repeat the procedure this Friday.

I have been discouraged. It will pass, but in the meantime I’m cranky! I have to remind myself that moods feel permanent while you’re in them, but they pass. This situation is not permanent. An old friend of mine used to say, “I can put up with anything, as long as I know it’s not permanent.” Good reminder, Richard. Thank you!

Enough whining about back pain. It’s not the big issue. The bigger one: When Genevieve and I went to San Diego last week, we visited my friend Craig. Craig started on AZD9291/Tagrisso a few months before I did, but treatment ceased being effective for him, so his only treatment is for pain management. Breathing difficulties and pain meds made it difficult for him to communicate with us. My sadness for him completely overwhelmed the joy at getting my own good CT scan results.

Even that feels a little better, however. Craig’s daughter guest-blogged for him today (, and his terrific attitude and heart showed through. This has done more for my mood than a (successful) cortisone shot!.

There’s always a lesson in there, isn’t there? The lesson for me is that, although I can’t change my feelings, I can change my attitude. And when that happens, my mood will follow.

Now that I’m listening, and my attitude is improving, and this big purple bruise is beginning to fade.

Thanks for listening!



*** A Special Request - UPDATED ***

I'm participating in an event to raise money to fight lung cancer - and I need your help! 

I will be attending the LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. Since I was able to raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations. However, I have raised the bar, and I am trying to raise as much as I can for LUNGevity. AND NOW THERE IS AN ADDED INCENTIVE.

THIS IS THE NEW PART: The amazing partners at the real estate brokerage where I work, Macadam Forbes, are offering a MATCHING GRANT. THEY WILL MATCH ANY NEW DONATION, DOLLAR FOR DOLLAR, UP TO $500. If you give $10, you will be raising $20 for LUNGevity. If you give $100, you will be raising $200.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

Outing Myself

Friends and Family,

There’s something I’ve often thought about writing about, but until now, I didn’t have the courage to share with you. But after over nine years of living with lung cancer, I am finally ready to “out” myself.

No, I’m not going to tell you that I am going transgender, or that I just discovered that I’m not white. I’m not coming out as a closet Donald Trump supporter, either. My coming out is nothing quite so trendy or colorful. It’s just a lot riskier for me, because it might affect what you think of me.

You all know me as the guy with the healthy lifestyle: Lots of exercise, healthy vegetarian diet, positive attitude, and taking in all the love and support that comes from you, and in particular, Genevieve.

What most of you don’t know, is that 35 years ago, I used to smoke.

Very often, the first knee-jerk response to telling someone that I have lung cancer is to get the stunned question, “Do you smoke?” I usually reply, “No, and the kind of cancer I have is unrelated to smoking. 18% of all lung cancers are among people who have never smoked.”

I admit that I’m dodging the question. What they really want to know is, “did you ever smoke?,” because, in their minds, lung cancer = smoking.

But telling people would confuse the issue. I learned from my oncologists and pulmonologists that my smoking history had nothing to do with my lung cancer. I came to the same conclusion after years of internet searches. My smoking history was too long ago, and too brief (off and on through college), to have been a culprit. As confirmation for what my doctors told me, the specific genetic mutations in my cancer are not associated with smoking.

But so what? Why not tell people that I used to smoke anyway?

I’ve given you the rational reason, which is that it just confuses the issue, and provides an educational moment. But the much harder reason is emotional.

When I was first diagnosed, I asked myself, “what did I do to deserve this? How did I cause it?” I blamed myself. In my cause-and-effect world, it was the only way I could make sense of it. The guilt was overwhelming.  Never mind the facts: If I had cancer, it must be my own fault. Guilt being one of my strong suits to begin with, this time I had it in spades. If I tried to explain that I smoked, but that it had nothing to do with my cancer, I would expect people to doubt me… and that’s all it would take for me to pile more guilt on myself.

If the natural response is to blame yourself, think how much harder this would be if smoking really did cause your cancer. This is a burden I wouldn’t wish on anyone. Any nobody - nobody - deserves lung cancer.

It’s easier to give smokers and former-smokers a break when you look at how people start smoking. Using myself as an example, I grew up in a house where both of my parents, and all three of my older siblings, smoked. I tried smoking briefly when I was twelve, but didn’t get hooked until college. There, I was hanging out with other students in bars and smoking after night classes, and taking “smoke breaks” with my friends at the restaurant where I worked. All that stuff about role modeling and peer pressure can be seen in action right here.

But there’s more. Did you know that our judgment doesn’t fully mature until we’re well into our twenties?(1)  That explains a lot of early-twenties behavior, doesn’t it? We are more susceptible to bad judgment, such as mine was (and there are soooo many more examples), before we have fully grown up. Tobacco companies have marketed to teens and young adults (remember Joe Camel?), and they get hooked before their judgment matures. How many people do you know that started smoking after the age of 25?

Now, put these two pieces together: Smoking is as addictive as heroin, and we get addicted before we have reliable judgment.

What’s so odd is that smoking causes so many other problems, but there isn’t the same knee-jerk blaming response when the diagnosis is something other than cancer. If someone gets heart disease or has a stroke, can you imagine asking if the person smoked? Would you ask if someone had an aneurysm, COPD, or diabetes? How about if they had osteoporosis, rheumatoid arthritis, age-related macular degeneration, or cataracts, or if their asthma symptoms got worse?(2)

So let’s have some compassion for the smokers and former smokers, whether their smoking was the cause of their cancer or not. Let’s do it in the same way as we take it easy on people with heart disease and those who have had strokes. We can, and should, work to prevent all these health problems. Smoking prevention and smoking cessation strategies are critical. So is routine screening of people with smoking histories, so that cancers can be caught when they are far less advanced, and the treatment outcomes are so much more promising.

I have chosen to “out” myself now, because I have made too many new friends with lung cancer that are former smokers, and who have suffered through tremendous guilt and shame that should never be a part of dealing with a life-threatening disease. I have heard stories of blunt comments that are at a minimum thoughtless, and at times outright brutal. Isn’t having cancer enough, without adding the accusation that it is self-inflicted?

I want to make clear that you, my friends, have been wonderfully supportive. I have not had the soul-wrenching experience of so many of my peers. I have had a few questions that I chalked up to simply being too stunned at learning that I have lung cancer to ask a better question than whether I smoke. So, just to make sure you’re not caught without a supportive response if you’re ever in this situation again, here are a few options:

  1. I’m sorry to hear that. How are you handling it?

  2. What are the next steps?

  3. Do you have people around you to support you?

  4. What can I do to help?

It’s time to end the stigma. Let’s replace it with a little compassion.



*** A Special Request - UPDATED ***

I'm participating in an event to raise money to fight lung cancer - and I need your help! 

I will be attending the LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. Since I was able to raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations. However, I have raised the bar, and I am trying to raise as much as I can for LUNGevity. AND NOW THERE IS AN ADDED INCENTIVE.

THIS IS THE NEW PART: The wonderful, compassionate, and very supportive partners at the real estate brokerage in Portland where I work, Macadam Forbes, are offering a MATCHING GRANT. FROM TODAY FORWARD, THEY WILL MATCH ANY NEW DONATION, DOLLAR FOR DOLLAR, UP TO $500. If you give $10, you will be raising $20 for LUNGevity. If you give $100, you will be raising $200.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

If you wish to donate, please go to my LUNGevity page:

  1. 1.C. Lebel, C. Beaulieu. Longitudinal Development of Human Brain Wiring Continues from Childhood into Adulthood. Journal of Neuroscience, 2011; 31 (30): 10937 DOI: 10.1523/JNEUROSCI.5302-10.2011

  2. U.S. Department of Health and Human Services. The Health Consequences of Smoking—50 Years of Progress: A Report of the Surgeon General, 2014. Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Office on Smoking and Health, 2014.

LUNGevity HOPE Summit: Prepare to Be Inspired!

If you are a lung cancer survivor or support person, this is an inspirational opportunity that is hard to pass up. I have been to a number of cancer runs/walks, fundraisers, and workshops, and for me, none of them have topped the LUNGevity HOPE Summit for feeling part of an empowered and upbeat lung cancer community. The latest research, Q&A with an oncologist, 25-year survivors, awe-inspiring advocates - This HOPE Summit has it all. And even better, if this is your first time, it is FREE. This includes transportation, hotel accommodations, meals, and the conference itself. The Summit is April 29th - May 1st.

My writing style may be extroverted, but I felt very uncomfortable going to a conference where I knew just one person, plus a few acquaintances I had met online. That awkwardness lasted less than five minutes. We are all in the same boat, and contrary to what I expected, I DO like being part of at least this one group that would have me as a member.

For more info about the HOPE Summit, go to

If you have already been to the Summit before, you can go again for FREE if you raise $1,000 or more.

I have now raised over $1,000 with the help of many terrific people who have made generous donations, but I am upping my game. If you would like to donate to support lung cancer research, education and advocacy, please click

World Cancer Day: My Tribute to Katie

Friends and Family,

Today is World Cancer Day! To mark the occasion, several of my lung cancer blogger buddies agreed that we would blog about relationships with people that have other cancers. You can find a link to the stories HERE.

When we picked this topic, I knew who I wanted to write about. This woman planted the seeds of change in my attitude about living with cancer, and it happened long before I was ever diagnosed.

Back before I got into commercial real estate, I worked in mental health. (Don’t ask. Just know that I got my own mental health back when I left the field.) Katie Hartnett worked with me at Providence hospital, where I coordinated the psychiatric admissions, and she ran the cancer counseling program. My job also included making referrals to mental health providers. That’s how Katie and I met: Sometimes she saw people that needed counseling for more than cancer, so I helped her with referrals. Sometimes the people that called me for mental health referrals needed counseling for their cancer, so I referred them to Katie.

We had known each other for years, before a five-minute conversation with her changed how I viewed the world.

One day, I ran into her Katie in the halls. After some brief chit-chat, she said, "I don't know if you've heard, but I've been diagnosed with cancer. It's a Stage IV cancer that is so spread throughout my body that they can’t even tell where it even started." I awkwardly admitted that I had heard the news. Then she said, "Isn't it a blessing! I've had all these wonderful patients over the years to teach me how to deal with it!"

What a rush! When we finished talking, I walked away thinking, "WOW! If I ever get cancer, THAT is the kind of attitude that I would want to have!" What an inspiration!

Needless to say, when I was first diagnosed with cancer seven years later, Katie was one of the first people that I contacted. She was still alive, and cancer free. With that kind of attitude, of course she was!

The first lesson I learned from Katie had been about gratitude, and finding the blessings in any situation. But seven years later, I learned more.

One of those lessons was when she told me that, when people are diagnosed with cancer, she is much more concerned with how the family members are coping than she is with the person who has cancer. I have to admit that I didn’t get it at first, but over time it became more and more clear.

The person with cancer gets all of the support and attention, while the family members feel powerless. Our loved ones have the same fears as we do, but no control over what happens. They also have a completely separate set of fears: “What will my life be like if my loved one dies?” There are fears of being left alone, of financial difficulties, of not knowing how to manage some things, of how to support the other family members. Their life could change dramatically, but in most circumstances it doesn’t feel right for them to make their own needs the center of attention. “How can I worry about my problems while my loved one could be dying?” But the needs are real, and critical to a full life. They don’t even want to talk about it with the person who has cancer, for fear that they will be adding a burden to a loved one fighting for survival. How lonely that must get at times. So yes, I understand how important it is that my own loved ones, particularly Genevieve, are listened to, and supported.

Katie also left me with another lesson, but I’m pretty sure she had no idea how much this one meant to me. She said it so off-handedly that I was sure that she had taken the idea for granted by this point. She said, "I've worked with many people who dealt successfully with cancer. Some of them survived..."

What? You mean you can deal with cancer successfully, even if you don't survive it?

My first instinct had been to believe that the math was pretty simple: Living = success, and death = failure. But when you think about it, that's pretty bad criteria. That would mean that we're all going to fail, because none of us will live forever.

De-coupling success from survival excited me. If you can only succeed by living cancer-free, then having cancer that was considered terminal meant I was slowly failing. What a defeatist way for anyone to live the last part of life! Not gonna do it!

I am now free to succeed at living with cancer, rather than to fail if I die from it.

So how do you succeed at living with cancer? The answer may be different for different people, but one of the answers for me is this:

Treat cancer as a growth opportunity.

I'm learning new ways to grow every day. I find more things that bring me joy, like tiny wind-up toys, and listening to my granddaughter tell me about her favorite teachers. I'm learning more about accepting myself, such as accepting my flaws without being self-critical. My relationships are getting deeper and more satisfying. I keep finding more that leaves me feeling grateful, like the plants and flowers I see when I walk at lunchtime, and coming home in the evening to a warm house on a cold wet day. It keeps getting easier to find what brings joy, or beauty, or playfulness to my world.

Does that sound more like failure or success? Slow destruction or growth?

Thank you, Katie, for sharing the gift of perspective.



*** A Special Request***

I'm participating in an event to raise money to fight lung cancer - and I need your help!  

I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

If you wish to donate, please go to my LUNGevity page:

Sometimes You're the Windshield...

Friends and Family,

Sometimes Genevieve and I fly down to San Diego to see my oncologist, and we are full of optimism. Sure, there’s plenty of “scanxiety” mixed in because there is so much at stake, but, deep down, we get a good feeling that everything is going to go well. Other times, not so much. This was one of those other times.  

Dire Straits said it best in their song: Sometimes you’re the windshield, sometimes you’re the bug. You can find it here: Before I got these last scan results, I definitely felt like the bug.  

I have a cough that had been getting progressively worse for the last seven weeks. It got so bad that I was embarrassing myself at the movies.  I could just stick to movies like Star Wars: The Force Awakens and other nonstop action movies so that people don’t hear me cough, but that doesn’t solve the problem, does it? Even Genevieve was admitting that she was getting worried about my cough. Genevieve’s sharing this is actually really good news as far as I am concerned, because now I can share my worries with her, and she won’t deny that there is something to worry about. I won’t feel so alone with my fears. That is a really big thing for me. There is a place for affirmations, but there also needs to be a place to accept whatever feelings come up.

That doesn’t mean that we have to live in fear, but it’s OK to visit it once in a while. I’ve learned that I’m strong enough to let the fear in, and to know that it won’t overwhelm me. Eventually, the fear gets bored and leaves. Fighting fear sucks up a lot of energy, and only makes it grow stronger. If I don’t fight it, then the fear flows in and out, just like the tide. Each time I let it in, I am able to handle it a little bit better.

A side effect of having cancer is that any minor symptom, that people without cancer wouldn’t even think twice about, could be a symptom of something more risky for me. If I have a headache for three days in a row, I wonder if the cancer has metastasized to my brain. If my back gets sore, I wonder if the cancer in my spine is spreading. And if I have a cough, it’s hard not to imagine that the cancer is taking over my lungs. When that cough keeps getting worse… Well, then. Bug, meet windshield.

It turns out that this time it WAS a bug. More specifically, it was a cold symptom that wouldn’t go away all this time. My CT scans showed no growth of the cancer again! Genevieve and I went from elation, to exhaustion, and then back to elation again. Woohoo!

And after all of that, we went back to gratitude. I am grateful that the Tagrisso / AZD9291 is still working. I’m grateful that the clinical trial for the next clinical trial drug that could help me, EGF816, will be available through clinical trial at UCSD, though I don’t know the timing yet. And I am grateful for your love and support, which is surely keeping me alive.

I’m also grateful that, at least this time, I’m still the windshield.



*** A Special Request***

I'm participating in an event to raise money to fight lung cancer - and I need your help!  

I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

If you wish to donate, please go to my LUNGevity page:

New Scan Results + Clinical Trial Decision

Friends and Family,

After our usual pre-scan hyper-sensitivity to every indigestion burp, cough, or body ache, I kicked my anxiety into overdrive by getting a cold/flu. It gave me all the symptoms of lung cancer gone rampant: Difficulty breathing, heavy chest, cough, feeling not so great. Then we flew to San Diego, where Dr. Patel gave us the good news: No new growth! We’re celebrating!!! We are now a couple of months past the average time that Tagrisso usually remains effective, which leaves me even more grateful. I have another six weeks of sweet life, and have bought another six weeks of time for the next new drugs to be developed before I need them. Clinical researchers out there, you are my heroes! Keep up the great work!

A couple weeks ago I asked what you would do if you had the choice of ending the clinical trial, but continuing to get the same medication in my home town. I thought I had probably covered the major topics pretty well, but found that there was much more to consider after listening to your thoughts. Thank you for contacting me through every means imaginable to share your thoughtful contributions! If you just want to know what I decided, skip straight to the bottom of this email. If all the facets of this decision fascinated you as much as they have me, keep reading and I’ll share what I learned from you.

First, Tagrisso is so new that the insurance company may not cover it, or may not have a contract with a pharmacy that carries it. They may also have a much higher co-pay for a new drug. This could critical, since the reported cost is $425 per pill. That’s right: $425 per day. I am very fortunate to have an insurance plan that has a maximum out-of-pocket expense. I usually meet that annual maximum out-of-pocket around January 7th, :-) and then I’m covered 100% for the year.

But what about those who do not have such great coverage? Fortunately, Astra Zeneca has a patient assistance program. See if you are in this boat. I believe other drug companies have similar programs… Worth checking out.

Several people told me they would get out of the clinical trial as soon as possible, to cut radiation exposure in half, by having half as many CT scans. Ashley, my clinical trial coordinator, petitioned the study sponsor to decrease the scan frequency for everyone. I’m impressed, and very grateful! Thank you, Ashley! Hey, I know it’s a long shot, but I appreciate the advocacy!

A friend and fellow blogger, Linnea Olson, actually contacted her study sponsor herself. Way to be your own advocate, Linnea!

But how much radiation is too much? Fortunately, I know someone who has spent years measuring radiation levels in workers at a nuclear-related facility. She can’t give an accurate response without knowing the radiation dose levels of the CT scans, but her best estimate is that the dose is still less than the daily level of radiation considered safe for workers in the nuclear industry. I don’t know whether that makes me feel relieved, or worried for the nuclear workers. All the same, it would be helpful to get dose info from a radiologist who does CT scans. I’ll work on it.

Several people mentioned the advantages of staying close to clinical researchers who are on the cutting edge of treatment. How could I replace that?

The length of the clinical trial was questioned. Dr. Patel has no idea how much longer the trial will continue. However, I have the choice of exiting the trial at any point.

Several of you mentioned the importance of contributing to research that affects the lives of so many. More data will help guide more research, and benefit more people.

The travel expense is not the biggest issue, but one that seemed reasonable for the drug company to cover at this point. The cost is roughly the equivalent to the price of one pill ($425) every six weeks.  UCSD told me that they never go back to the sponsor to ask for travel assistance. So…. I bypassed the system! I have my own Astra Zeneca connections, so I made my own request. We all have to be our own advocates.

I asked Genevieve how this impacts her, since she makes every trip with me. She dismissed the question as trivial and irrelevant. That says a lot about love, doesn’t it? She’s a keeper!

One friend, Joe, had a more noble take. He said that it’s good to stay with the girl that brought you to the dance, and make sure she gets home safe. In other words, since this clinical trial saved my life, perhaps loyalty should be a consideration.

Thank you  all for making me consider so much more, and in so much more depth. It makes me feel more comfortable with my decision… to stay with the clinical trial. You helped me crystalize that my biggest concern was the radiation, which I feel a little better about now. You also helped me to decide just how important it is to contribute to the research, and to realize that the most important factor for me is sticking close to Dr. Sandip Patel. He is the most cutting-edge oncologist that I know about for my situation, and I have direct access to him. That is irreplaceable.   

Wishing you happy holidays, and decisions you can live with.



Decision Time for My Treatment

Friends and Family,

If you could get the same life-saving medication without being in a clinical trial, would you quit the trial? That’s what I have to decide.

Two weeks ago, I got some spectacular news. My clinical trial drug, got FDA approved! World, meet Tagrisso, The Drug Formerly Known as AZD9291. For me, getting this news felt like a holiday! Thousands of people will now live longer. I am awestruck! It’s a crapshoot whether I would still be alive today, almost fourteen months later, if I had not gotten into this clinical trial. That makes the lives of those thousands of people much more personal to me. Woohoo!

Now here’s the dilemma: The approval of this drug means I have options. Ashley, the AZD9291 Clinical Trial Coordinator, called me. Since I now have a choice and could get my medication in Portland, she asked me if I planned to remain in the clinical trial. I got the feeling she was expecting me to say, “nice knowing you,” and never look back. But the decision isn’t so easy.

There are good parts and not-so-good about remaining in this clinical trial. On the not-so-good side, there is the time and expense of flying 1,000 miles to San Diego every six weeks. It also means getting CT scans twice as often, which means twice as much radiation, which means increased risk of… getting other cancers! Two medical professionals I asked denied being experts in this area, but estimated that CT scans have 100 to 250 times as much radiation as an X-ray. I don’t even know how to fathom what this means about my risk of getting other cancers.

But there are good parts about remaining in the clinical trial. To begin with, I literally owe my life to this drug, and I believe that gathering more research data is important. Since there are only 411 people in the world who have been in the trial, that’s a small number for research purposes. The irony is hard to beat: By remaining in a study to increase the safety for the people that follow me, I increase my own risk of getting another cancer.

There is also the HOPE factor. People who start this drug need success stories. For example, I started on Tarceva shortly after it was approved. My oncologist told me the stats on how long the drug was usually effective, but he also pointed out that there were people that had been in the clinical trial for many years. That gave me more hope. I told myself that I could be “that guy” who stayed on the drug for years. Now, I could be “that guy” for others that follow me on Tagrisso. But only if I remain in the study.

The other reason to remain in the study is that UCSD has an amazing team of oncologists who specialize in lung cancer, and specifically Dr. Sandip Patel. While many oncologists treat lung cancer, the knowledge of other clinical trials and cutting edge treatments that you get from a specialty team is incredible. By remaining in the clinical trial, I remain in contact with Dr. Patel, who can guide me when I need a new treatment.

So, my friends, what would you do? Are there other factors I haven’t considered?