Things are Looking Up

Friends and Family,

Breathing and pain management have gotten better since I last wrote, so now I can come up for air and write with a little more hope. Feels good just using the “H” word again.

Dr. Sanborn hooked me up with a pain management specialist, and she is brilliant. Within twelve hours my pain was quite manageable, and she had plans to make it even better. She also had advice for managing chemo better, and is hooking us up with a neurosurgeon to consider using a nerve block in my spine rather than heavy drugs if radiation doesn’t cure the back pain. I have never had palliative care before, but now I’m an instant believer.

I had radiation last week as well, but it wasn’t what we expected based on my other experiences. This was done in a single, high-dose zapping rather than the more-standard ten sessions over two weeks. I suspect my oncologist had a hand in this, since she didn’t want me to start chemo until a week after radiation, and she didn’t want to delay chemo for two weeks. Either way, I’m happy it’s done. I should start feeling the pain relief within days… or weeks…   

I knew there was fluid on my lungs making it hard to breathe, but I had no idea how much fluid until it was drained. Genevieve chased down every provider who had ever even seen my name in print until she was able to get these appointments authorized and scheduled. Since I was getting desperate for air, I have never been happier to see her go all ferocious on these unsuspecting victims until she got action. Things didn’t change much after the fluid was drained from my right lung on Friday, but when they drained the second (left) lobe yesterday, it made a huge difference. Now I see why I couldn’t breathe. Between the two lungs, they drained 2.3 liters of this gunk off my lungs:

More than two full gunk containers! That’s over five pounds of fluid. No wonder I was having trouble breathing. I was drowning!

The next step will be to start chemo (carboplatin + Alimpta) on Friday. I’ll stay on the Tagrisso along with the chemo, and have sessions every three weeks. Unless…

My liver was biopsied on Friday when the fluid was drained from my lung, and the results of that biopsy could change everything. Dr. Sanborn is concerned that the cancer may have converted to small cell lung cancer (SCLC), which is much more aggressive and has far fewer treatment alternatives than the non-small cell lung cancer (NSCLC) I have had until now. I’m not going to look at lab results in MyChart. I’ll just wait until I hear from Dr. Sanborn, who is out of town this week, or my chemo type and schedule is changed, which would tell me everything I didn’t want to hear.

In the meantime, please think non-small cell, or pray for non-small cell, or meditate repeating non-small cell...  

Your thoughts, prayers and meditations are much appreciated.

Love,

Dann

Kicking the Bucket (List) and a Big Milestone

Dear Friends and Family,

It doesn’t get much better than this! Everything I have to tell you is more than I could hope for!

Let’s keep priorities straight and start with the biggie. Genevieve and I went to San Diego last week, and got the results of my latest CT scan. My cancer is still stable! It’s now been on Tagrisso for an incredible 47 months! While Genevieve and I get more and more excited every time, my oncologist and the clinical trial coordinator are looking increasingly bored by my visits. I count that as a major victory. If there were interesting things to see after this much time, it wouldn’t be the kind that we are looking for. I’m hoping that I’ll win the race to see whether my oncologist will die of boredom before I die of old age.

Next, my big milestone. You probably already know how important I believe that exercise is to staying healthy. Along with going to the gym six days a week, I climb the seven flights of stairs to my office twice a day. When my company moved to the top floor of our building over seven years ago, one of the guys started the Flight Club as a motivator. In this club, we track how many (flights of) stairs we climb. I am proud to say that since that time, I have now climbed more than a third of a million steps. Yes, more than 333,333 steps! (I’m so excited that I had to repeat it.) 

I know a large number of people from all over the world with lung cancer. Some I only know from online forums, but I have gotten to know quite a few in person between conferences, lobbying, and a local support group. Out of all the people that I know, there isn’t a single one that seems to consider exercise as important to beating cancer as I do.

So why do I consider exercise so important? Here are my top reasons:

·         It’s almost impossible not to feel better. Maybe if you haven’t exercised in years, and you overdo it the first time out, it won’t feel great. But regular exercise helps your mood and your general sense of well-being.

·         It’s not complicated. There aren’t certain things that you need to do. You just need to do SOMETHING that gets your heart going for at least 15-20 minutes, as often as you can.

·         It bolsters your immune system.

·         Some research even indicates that exercise may make chemo more effective.

·         You will recover from any illness, surgery, or treatment a lot faster if you are in shape, and most likely even more so if you exercise appropriately during your recovery.

·         I believe that a lot of people with cancer die because they aren’t in good enough shape to handle the next treatment. Exercise puts you in a better position to fight the next battle.

·         While having cancer can feel very out-of-control, this is something that you have control over. For control freaks like me, this is a biggie!

Did you notice that most of what I said above applies, whether you have cancer or not? And if you are already exercising and you THEN you get a disease or need surgery, you’re in a much better position to handle it. So what do you think? Is this a good time to get started?

The next thing I wanted to share with you is my Bucket List. For the past several years, I have had just one item on my bucket list. I decided that the next car I would buy would be all-electric. Two and a half years ago, I went from what was more of a wish list, to taking an action step. On the first day of a Hawaiian vacation, Genevieve and I got up at 4:30 in the morning to drive across Oahu to get at the front of the Tesla Model 3 waiting list. At the time, Tesla hadn’t even released a picture of the car. Still, we plunked down our deposit and waited. And, of course, saved our pennies. Three weeks ago, we got our car! I’m still like a ten year-old at Christmas! It’s beautiful, it’s powerful, and it has so much technology that I’m still learning about it. It’s the best toy I’ve ever had!

But why was this car so important to me? I’m not even a car guy. While most of the commercial real estate brokers in the city have BMW’s, luxury SUV’s, or similar, I have been driving a Prius for 13 years. A bucket list with a car on it, and nothing else, hardly makes sense, does it?

I’ll explain. It’s all about values for me. Electric cars are far more fuel-efficient (rated as equivalent to 120 miles per gallon), and burn cleaner fuel, which will help reduce pollution. This is the first electric car with mass-market pricing and appeal, with a waiting list of 400,000. I feel like we are doing our part for the environment, and leading the way for others to do the same. Indirectly, this is going to make it easier on people’s lungs, among other things.

So that’s my news for now. Everything good!

Hoping everything is going well for you, too.

Love,

Dann

Handling the Pressure

Friends and Family,

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

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

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

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

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

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

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

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

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

It dropped 28 points.

I guess the pressure was off. :-)

Love,

Dann

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.

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

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

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 www.lvng.org 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.

Love,

Dann

*** 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: http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15681

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: https://www.youtube.com/watch?v=iAqSwUbw_v0. 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.

Love,

Dann

*** 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: http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15681

AZD9291 Gets Approved!!!!!!!!!

I am absolutely thrilled to tell you that AZD9291 has been approved by FDA! This drug finally has a name, Tagrisso (osimertinib). The drug is approved for people who have the EGFR mutation, which also has the T790M mutation. The official FDA press release can be seen at http://1.usa.gov/1H0iCbY.

Since there were only 411 people in the world in the Phase II trial that I was in, I feel extremely fortunate to have already benefited from this drug for the past 13 months. I am also thrilled that my own success has added a small fraction to the research that has proved this drug to be so successful that it was approved in the near-record time of two and a half years!

Better yet, I am now excited about all of the people who will now be able to extend their lives, and their quality of life! Today feels like a holiday! 

To all of the researchers at Astra Zeneca, and all of the clinical research teams, including my own team at UCSD, I want to express my deepest gratitude for your extraordinary work. Because of you, I am still alive. Now, so many others will be able to say the same.