New Story Published

Friends and Family,

The Lung Cancer Alliance asked me to write a story for their website, and it has now been published. I wrote a very brief version of some of the hope and highlights of the past eleven years of living with lung cancer, along with why the Lung Cancer Alliance, and the upcoming Lung Love Run Walk on June 24th, mean so much to me. Here is a link to the story: 

http://www.lungcanceralliance.org/blog/my-lucky-break/

The story stands on its own, but I also hope it inspires you. My goal this year is to have a team of 30 with me on June 24th, and to raise $3,000. So far, we have 6 team members, and have raised 42% of my financial goal. Here is a link to Team Live Lung and Prosper:

http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211#sthash.GlWuI5BI.dpuf

Love,

Dann

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

Celebrating National Cancer Survivors Day

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

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

Friends and Family,

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

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

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

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

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

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

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

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

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

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

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

“Spectacular,” I said.  

Now tell me: How has YOUR day been?

Love,

Dann  

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

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 http://engage.lungcanceralliance.org/goto/livelung.  For more details about the event, go to http://engage.lungcanceralliance.org/site/TR/WalkMap/General?fr_id=1140&pg=entry

Looking forward to seeing you there!

Love,

Dann

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,

Dann

 

 

 

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.

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

  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.

Distortions of Space, Time, and Sound

Friends and Family,

Genevieve and I have had our sense of reality severely tested. Time, space, and sound have all been distorted. 

Let's start with sound. Genevieve and I went to the same appointment together with Dr. Patel two weeks ago, and we both heard something very different. 

Here's what I heard Dr. Patel say: "The good news is that your scan results look great and everything seems stable. However, OHSU compared these results to the ones you had nine months ago, so we really can't tell if there's any change."

Here's what Genevieve heard Dr. Patel say: "The good news is that you're still in remission." End of story.

How could I hear, "We really can't tell," while Genevieve hears, "You're in remission?" 

I haven't heard the word "remission" from anybody except Genevieve for the last four years. When people ask her how I'm doing, she says, "He's doing great. He's in remission." I always took this as her affirmation, her imposing her intentions on the situation, her creating the reality that she wants to happen. Now, my doctor is teaming up with her to do this? 

I don't know what to call it, or what he actually said. All I know is that I'm feeling great, my scans haven't changed, and we're going to keep celebrating. 

OHSU had compared results from my CT scan, done two weeks ago in Portland, with ones done nine months earlier, also in Portland. The time in between, when I was having scans in San Diego, ceased to exist. The space/time continuum was then burst, as our UCSD (San Diego) radiologist said he would compare the last Portland scans with the most recent San Diego scans.  

Next (I think), time moved backwards, as we waited for the results. Eventually time started creeping forward again, and we received Dr. Patel's email: "No results back from the radiologists yet, but I eyeballed your scan and it looks great." He eyeballed it? Did I just slip and fall into the rabbit hole? Since when do oncologists trust their eyeballs to compare scans, when they don't even have another scan to compare it to? How do we know he's not in some kind of spacial distortion?   

Months later, in an email dated only three days later (proof of the time distortion), Dr. Patel emailed again: "CT of head and chest have been evaluated, and there's no change. Still looking great. However, we can't find the scan of your pelvis and abdomen to compare. Can you have OHSU burn another disc for you?" But before I even got to this email, time sped up and he sent a second email. "Never mind, we found it on the same disc. Won't be long now." Except it was. Very long. Weeeeeks  (possibly hours) later, he emailed again. "CT of pelvis and abdomen have been evaluated. No change!" 

Of course, with this great news, Genevieve and I went into a time loop and celebrated the CT results all over again. NO CHANGE! WOO HOO! TIME IS STANDING STILL FOR MY LUNGS!

Maybe we'll even celebrate by watching some 4th of July fireworks next week. :-)

Love,

Dann