Think Treatable Mutation

Friends and Family,

Things have evolved pretty quickly. First, the non-existent pain in my cancerous rib went from zero to sixty in the middle of a game of golf. I made it through the game, but pain has been a problem for the past week. I activated the referral that I delayed two months ago for radiation. The radiologist told me that the T-4 vertebrae is also involved, and apparently the cancer is pushing on a nerve. I’m now on steroids to shrink the swelling to take pressure off the nerve, and hoping it kicks in soon. I can’t tilt my head to look down at my phone or read a magazine, or bend over to reach into a shelf, and I can’t do a thing to help around the house.

This is bringing flashbacks to both Genevieve and me of when I was in chemo (both times) and she had to do everything. I’m appreciating just how much work is involved now that she has to do everything again, and she is appreciating how much of the work I’ve taken on around the house since I semi-retired last year. We each found a little gratitude. But that’s enough of this lesson, thank you. We’d both rather go back to our normal give and take as soon as possible.

I had my pre-radiation appointment, which is called a “simulation.” They had me lie on a bean bag on the CT table, then vacuumed the air out of the bean bag so that it retains my body shape. They set it aside for me, so that every time I come in I will lie down and be in almost exactly the same position. After they scanned me, the tech gave me five tiny tattoos. Along with the two from my first time having radiation eight years ago, I now have seven tats. Does that qualify me to be a Millennial, or is it just proof I’m from Oregon? There is one on each side of my rib cage, and three down my chest. They will use these to line up the lasers, so that when they zap me it will be in exactly the right spot each time. We’re hoping to hit close enough to the spine to kill the pain, but since a vertebrae is involved, and the spinal chord is in the middle of the vertebrae, there is a “less than one percent chance” of neurological damage. The radiologist considered that insignificant. Us, not so much. But the alternative of waiting until a new treatment kicks in and hopefully killing off the cancer in the right spot is even less desirable.

So far, this has not been as entertaining - or embarrassing - as when I had radiation to my hips. Click HERE to read that story. Meanwhile, between bulging ‘roid-fueled muscles and the tattoos, this cancer is apparently intent on turning me into a badass.

Representative image only. Actual results may vary. Considerably.

It took daily MyChart messages of increasing forcefulness for a week just to get the biopsies ordered, but yesterday (finally!) I had both the tissue and the liquid biopsies. Since the lymph nodes are close to the surface, they were able to guide the needle with ultrasound in real time rather than CT-guided. The lymph nodes were between my carotid artery and jugular vein. I tried to get Genevieve to take pictures, but once they had a needle near my neck she was looking the other way. I felt fortunate that I had to turn my neck toward the video screen, so I got to watch the whole procedure close-up. The radiologist was surprised I looked. Why would I not want to watch? It was fascinating, and gave me a lot of reassurance that they took good samples. Not only that, but this is one of those ultra-intense experiences in life. Why would I not want to be fully present and aware? I’m making the most of this.

Here’s as much as Genevieve would capture in a picture:

Once that was done, we went to the outpatient lab to get the liquid biopsy done. One of the perks of doing them in the same day was that the locations were a tram ride apart. You’ve got to stop and smell the roses along the way, right? Living life to the fullest! This was our view:

Now we’re at the point where the rubber meets the road. We should get liquid biopsy results back in about a week. Tissue samples may take 2-3 weeks. If you were thinking of sending thoughts and/or prayers our way, this would be a very good time. The outcome we are hoping for is a treatable mutation. Ideally one with a treatment that has already been approved. If not, we’re definitely open to a clinical trial.

Think treatable mutation.

Love,

Dann

Which Guinness Will it Be?

Friends and Family,

Every time. I am stunned every single time this happens. Forty-one months after starting Tagrisso, Genevieve and I just got my latest CT scan results. No Growth! Is there a Guinness Book of Records I can check? I’ve already been on this med four times as long as the average. But averages are averages, and I am an individual. I hope every survivor who reads this keeps this in mind: SOMEBODY has to be the outlier. Why not you?

And yes, we are excited! I am still grateful every day.

This latest news makes for a tough choice:

                                               -      OR     -

It gets even better. With the help of twenty much-appreciated volunteer proofreaders, the final draft of my book, Second Wind: Thriving With Cancer is finalized and ready for publication. Release date is almost here! I can’t wait to share it with you! For this one, I’m only thinking about one choice:

I have one more thing to share with you today. The Portland Lung Love Run/Walk (LLRW) is coming up, on Saturday, June 23rd at 8:30 AM. Please join our team, Live Lung and Prosper, or start your own team, or consider donating. There is a $5 registration discount if you sign up by March 30th. Discount code: lunglove5

Here is the link to join Live Lung and Prosper or donate:  http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=2030&pg=team&fr_id=1250 

Here is the link to start your own team: http://engage.lungcanceralliance.org/site/TR?fr_id=1250&pg=entry

Since the LLRW benefits the Lung Cancer Alliance (LCA), I am passionate about supporting them. In fact, Genevieve and I will be going to Washington, DC in July with LCA to lobby Congress. Last time, I didn’t really know what I was getting myself into, so I went to DC without her. It was such an empowering experience that Genevieve decided to join me this year. Given the challenging political environment in Washington, and all of the efforts to cut health care spending, support for lung cancer initiatives is even more critical.

Hoping you can find the good news that is going on in your own life right now. It’s there if you look for it.

Cheers!

Love,

Dann

The Party is Over

Friends and Family,

Thank you to everyone for the great support while I have been waiting to find out what is happening with my cancer. You have helped make the wait for some understanding of what is going on much more bearable. And now, the wait is over.

I got an email from my doctor’s office this afternoon. It’s everything I hoped to hear! The gastroenterologist said that this mushy-ness in my pancreas has only a small chance of ever turning into cancer, or of being life-limiting. YESSSSSSSSSSSSSSSSSSS!!!!!!

The funny thing is, over the past two or three days, I was already starting to feel less worried about it. This seems to happen every time there is bad news, or even the threat of bad news. My first response is to dive head-first into panic, gloom and doom. Give it some time, and I remember that I know how to do this. After all, I have enough experience by now. :-)  

So, what’s in that toolbox of coping skills? Here are a few that I used this time:

*         Taking in all the love and support, from you, and from Genevieve. It makes all the difference in the world.

*        Acceptance: If it happens, it happens. This was the hardest tool to develop when I first started on this journey, but it keeps getting easier with practice.

*         Perspective: We’re all going to die, so all we are talking about is when. Of course later would be better, but I can’t control that. I have to let go.

*         Gratitude: I have been extremely fortunate to live more than eleven years (!) since I was first diagnosed, and more than six years since I was re-diagnosed. This is extraordinary, and one of the reasons that I feel blessed every day.

*         More Gratitude: The love you have shared has not only been one of the main reasons that I am still alive, it has also been life-changing.  Thank you for this incredible gift!

*         Logic: When we are in panic mode, every random thought takes us into a new and even more scary direction. Once I got past that, I started thinking about a few things: 1) The pancreas is not a place that lung cancer usually spreads to, at least not first. 2) When the cancer starts to spread, it seems to always spread more in the lungs before looking for new territory. 3) It makes no sense at all that I would randomly get pancreatic cancer that didn’t spread from my lungs, since my chances are no higher than the general public. The odds against it are great.

Thanks again for being there. It makes a world of difference.

Love,

Dann

Feelin' Groovy

Friends and Family,

Sometimes, everything goes well. Or maybe it just feels that way. Life is a little more relaxing, and little things that might bother you a little bit seem like, well, little things.

Do you have any favorite old songs that pop into your brain under just the right circumstances? Beautiful sunrises sometimes bring “Here Comes the Sun” (Beatles) into my consciousness. But the one that keeps going around in my head lately, is Simon & Garfunkel’s 59th Street Bridge Song. If you want to feel what I’m going through right now, try listening to this: https://www.youtube.com/watch?v=mWBvcJAXwu4. (Disclaimer: You may have to be of a certain age for this to mean anything for you.)

I could be feelin’ groovy because a couple of months ago, Genevieve and I started meditating every day. I visualize being cancer-free, and try to take that experience and feel it as if it is happening in the present. According to Joe Dispenza, whose workshop we attended, this will help you create your own reality. Quantum fields are involved. I don’t know about that, but I do know it feels pretty great anyway. I’m going to keep it up.

My mood could also be this good because we’re in Hawaii right now. Yesterday, Genevieve pointed out to me that I always look more relaxed while we’re out here, even if I am working at commercial real estate 3-5 hours a day. Five mile beach walks with very few people around definitely help. Sitting on the bluff at sunset taking pictures – counting this trip, about 842 million of the same scene so far – puts me in a relaxing mood. It’s just so beautiful and peaceful. Maybe the glass of wine helps, too. :-)

There is one other thing going well. It’s my marriage, which began exactly 21 years ago today. I’m calling this our champagne anniversary, and not (just) because champagne is cheaper than diamonds or silver. Our marriage is now old enough to drink! This relationship brings me a level of happiness that is far beyond what I imagined possible, right up until I was in it. Genevieve is simply wonderful, and we are both better people together than we were without each other. Life is so much richer with Genevieve in it.

The only thing causing me a little impatience right now is getting my book published. I could launch it myself within a week, but my brother Mike convinced me that, if I want this to be a success, I really need to have a book marketing firm involved. I have three names to contact and interview. After that, a book launch plan could take many months to do well. Since the goal is to get the word out to as many people as possible, I will have to at least ACT with patience. I will confess that there are times when I have wanted to get the book out ASAP, since I never know how long my health will remain stable. However, since I keep defying the odds and staying healthy, I’m willing to risk it.

The last thing to tell you is that I don’t have any scan results yet. That comes in two weeks. While my body goes into occasional panic mode, my brain reminds me that I have no symptoms, and I’m already the exception to how long this treatment usually lasts.

Hope that you’re feelin’ groovy, too.

Love,

Dann

Call Me an Optimist

Friends and Family,

Have you ever noticed the flight pattern of a moth while you were trying to swat it? No one – not even the moth – can predict where the moth will go next. They dart in every direction so fast that you would need a video in slow motion to follow their flight path. This is nature’s defense against bats and birds, and the occasional fly swatter. Since these predators can’t predict the moth’s flight pattern,  they can’t maneuver fast enough to keep up.

I think I must be genetically related to the moth. Yesterday, both my brain and my stomach were changing directions  at almost moth-speed. I was jittery, couldn’t think straight, and my stomach was doing the cha-cha. There were no bats in sight, but… there was that threat of meeting with my oncologist and getting my CT scan results. See below for a time-lapse photo of my own moth-flight pattern.

I was in full-on panic mode. It was far worse than the usual pre-verdict panic, probably because I had pretended like this meeting wasn’t going to happen for as long as possible. BAD idea. It works much better when I alternate between staying in the present, and then occasionally letting it all sink in. You have to deal with the fear, unless you want to be disconnected from your own life. Or go into total panic at the last minute. However, you don’t have to live in your fears – just visit them.  

Prepared or not, the appointed meeting arrived. First, the nurse took my vitals. “Your blood pressure is high. Are you under some stress right now?”

“I’m waiting to find out if my life will be extended another three months,” I said. “Does that count?”

“Got it,” she said.

Shortly after, Dr. Patel walked in the door. “I have the results, and I won’t leave you hanging. Your test results are great. No change!”

Yessssssssssssssss! I was flooded with relief. Since I’ve now been on Tagrisso for three times the average without progression, every time he says this I’m thrilled – and very grateful.

Genevieve’s response, was, of course: “I knew it.”

Still, she looked relieved, just like me. I jumped up and gave her a big hug.

So far, I haven’t shown you where the optimism came in. Here it comes.

Age sixty is the marker for a couple of routine medical procedures. With that in mind, I asked Dr. Patel if there was any reason why I shouldn’t get a pneumonia vaccine… and a colonoscopy.

The pneumonia vaccine is a no-brainer. EVERYONE with lung cancer should ask their doctor about getting this vaccine while they are stable. Pneumonia is one of those things that is easy to develop with lung cancer, and that can kill you, even if you are surviving all the other treatment challenges. It doesn’t take a lot of optimism to ask for this vaccine: It only takes being prepared for the future.

But a colonoscopy? NOBODY volunteers for one of those.

I’m an optimist, but not as insanely optimistic as this sounds. I have my reasons.

First, everyone should get a colonoscopy every ten years after age fifty. It’s been ten years since my last one, so it’s time. If the guy with the questionable lifespan is willing to do it, don’t you think you should think about it?

Take it from me, cancer prevention is far better than treatment. Get it now, regardless of your cancer history.

If you’re thinking about it, but just aren’t sure, Dave Barry’s story about his own colonoscopy will give you a good laugh and more to think about: http://www.miamiherald.com/living/liv-columns-blogs/dave-barry/article1928847.html.

My next reason is that, because of those roughly forty (!) CT scans I’ve had in the past eleven years, I have had approximately eighteen trillion times more radiation to my abdomen than the average person. Just this past winter I had a skin cancer removed from a place that never sees the sun. (Watch it – I was talking about under my arm.) That skin cancer was pretty good evidence to me that I’m at higher risk.

So that’s it. A guy with Stage IV lung cancer going to get a colonoscopy so he doesn’t end up with colon cancer.

I’ve wondered if my insurance company is going to laugh at the pre-authorization request. Can’t wait to see what they do with it.

And maybe, just maybe, while that doctor is scanning the nether-reaches of my bowels, he’ll find a few moths.

Be safe. Be well. Take good care of yourself. Regardless of your diagnosis.

Love,

Dann

My Oncologist has a Big But

Friends and Family,

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

But.

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

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

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

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

Can you hear my brain cranking out denial scenarios?

de Nile 

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.

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

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

Love and peace to you.

Dann

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

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.

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

Profiles in Lung Cancer Day 18 - Gail Lemaire

Gail Lemaire: "I have 30% lung capacity and I'm still laughing my head off!"

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month.

Today, meet Gail Lemaire, who has been beating lung cancer for 23 years. Now THAT brings hope to the rest of us!

Gail, what is your connection with lung cancer? “I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!! “First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”

Volunteer work? "I helped form a lung cancer support group at my hospital in 2010, which I still coordinate and co-lead.  I’m also an American Cancer Society Reach to Recovery (breast cancer one-to-one support) volunteer through my breast cancer doctor’s office. For the past 15 years, I have recorded a Sunday news radio broadcast for a Blind and Learning Disabled audience. Sadly, that agency has now closed. I also do other occasional activities, like volunteering at LUNGevity’s annual "Breathe Deep" fun Walk/Run."

Why all these different volunteer activities? “These Volunteer positions are the most rewarding work I could ever imagine.  Certainly, I feel better and get more out of working with other cancer survivors than any help or assistance that I could possibly provide to them.”

What does a typical day look like for you? “I am lucky enough to wake up each morning to my darling husband giving me a cup of coffee in bed!!!  I admit it, I'm spoiled!  I go to the hospital quite a bit for tests and treatments.  I meet up with other cancer survivors - and also do the "ladies who lunch" thing. I stay busy with my Bunko group , my book club,  my breakfast club, and my fine dining group. I also spend time with the LUNGevity group online, as well as a few others.  There are so many places online to share information about our health and wellness.” 

 What is something that people may not know about you? "I have 30% lung capacity and I’m still talking my head off!!!  I haven’t run any marathons, though. My husband and I are captive slaves to our 10lb. rescue/adopted dog, who has us perfectly trained to her liking."

What do you want people to know about lung cancer?   "If I tell someone I have Lung Cancer and they ask me "did you smoke or do you smoke?" it is very hurtful, and it infuriates me. It is an insult to imply if you were a smoker you brought on Lung Cancer yourself.” Also, in the immortal words of Sir Winston Churchill, "Never, never, never give up!"

What brings you hope?  "A doctor told me that we have learned more about Lung Cancer in the past 5 years than we have in the past 50 years.  That's hopeful!"

For yesterday’s profile of Kim Ringen, see http://lil-lytnin.blogspot.com/.

For tomorrow’s profile of Anne Gallagher, see http://aquariusvscancer.com/.

For a link to all of the November profiles, seehttp://lcsmchat.com/profiles-in-lung-cancer/.

Hope is Where You Find It

After the LUNGevity HOPE Summit in DC last week, I was pumped. I was feeling the hope, and I still am. I even found Hope in a couple of unexpected places. First there was this:

That got me excited to look for more Hope. I found this in the Smithsonian Natural History Museum:

                                                            Hope Diamond

James Bond taught us that "Diamonds are Forever," but now you know that Hope is forever, too!

So now I'm looking for signs of Hope everywhere, and I would love to have your help. Share the Hope! Send me your pictures and I'll share the Hope with others. Be as creative about what "Hope" means as you like.

If you don't have my direct email address, click on the "Contact" tab above and email me that way. I'll email you back so you can send your photos to me. 

It's Complicated.

Friends and Family,

Have you ever had times when you just knew that everything was going to go your way, except for maybe one little niggling doubt? That’s how it was for me before my CT scan last week. I was feeling great, with no real doubts. Except that I was irritable for two days before my scan. Hmm… 

It was easy to feel optimistic because my back has been feeling better and my lungs are feeling great. I’ve been able to run around the gym like a 50 year-old. I would have said like a 25 year-old, but hey. Let’s be real.

I was feeling faster than a speeding bullet…

                                                                          "Bullet"

More powerful than a locomotive…

And able to leap tall buildings in a single bound.

For those of you who didn’t grow up when Superman was on TV in black and white, those words are a direct quote from the announcer at the beginning of every show. The power of feeling good was intoxicating! I was feeling like Superman!

It’s times like these that I forget about the future, feel great for now, and don’t worry about what will come next.

In case you haven’t guessed, my scan results were spectacular! That means they were unchanged. Six more weeks of still having cancer in my lungs, but not having it grow, seems pretty spectacular to me!

So why was there still another niggling little something bothering me? What was it?

Digging a little deeper, I figured it out. I was feeling guilty.

I know, this doesn’t seem to make any sense. Except it does.

It's complicated. First, there are the recent deaths of two people I know who had cancer. One was more of an acquaintance to me, but the other person, Larry, had become important to me in a very short period of time. He was making a remarkable recovery from esophageal cancer, and I had been vicariously thrilled at his successes with cancer – and with life. His passing was sudden and unexpected. I hurt for him, I hurt for his family, and I hurt for me.

More recently, my buddy Craig, who has been on AZD9291 longer than me, has had some growth in his cancer. He is still in the process of working out with his doctors how they will manage this change. If you have a minute to pop by https://craigblower.wordpress.com/ and say a word or two of support, I’m sure he would appreciate it.

But why should I feel guilty about being alive, while others have either passed on, or are dealing with increasing symptoms? Is it fair that it’s not happening to me? I’ve never asked the question so many people in my situation ask, “Why me?” From the first day I was diagnosed, I have believed that things randomly happen to people, just like some people are unlucky enough to die in a plane crash or when a tree crashes through their roof. However, the question I have often asked myself, and I have even asked you, is “Why not me?”

I have been telling you for almost nine years about everything you and I are doing together to help me stay alive, and yet I still feel guilty that I’m alive. That’s a little self-defeating, isn’t it? There’s a name for it. It’s called survivor’s guilt.

This is where having a great therapist comes in. Duane nailed it for me. “It sounds like you’re assuming that only a limited number of people get to live, so if you live, you’re taking someone else’s place.” Booya! That one hit me between the eyes. So this is what it means to have survivor’s guilt! Just getting this crazy logic clear in my head makes it easier to move on. Not immediately, but I'm getting there.

Why does there have to be a limited number of survivors? Can’t everybody survive? That's the goal, isn't it?

Things started looking brighter again. Let’s help everybody survive! Let’s help everybody thrive! 

Tell you what. I’ll keep telling you what I think is keeping me alive, and you keep helping. Together we’ll do the best job possible to help other people see how they might do it. And as many of you have told me, the same things work if you want to live a fuller life, even if you don’t have a life-threatening disease.

For me, it all boils down to love and attitude. Your love, and your supportive and upbeat attitude. My love, and my upbeat attitude. There is a lot of action behind both of these words. But for me, love and attitude are at the heart of it.

That’s one reason why I end each email by saying:

Love,

Dann