<<< T790 >>> YESSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!! October 3, 2014

Friends and Family,

WE’RE IN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I got the call today. I have the T790 mutation! WE’RE GOING TO SAN DIEGO!

Okay, that was a blatant rip-off of those TV adds where some athlete says “I’m going to Disneyland!” right after winning the Super Bowl or some other equally gigantic event. But to me the Super Bowl seems pretty puny when compared to LIFE!

WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now I will attempt to temper my enthusiasm long enough to give you the details. No promises.

This Sunday I will take my last Tarceva so that I can start an 8-day cleanout period before I start the new drug. But before I start the new drug, next week I’ll go to SAN DIEGO… YAHHHHHHHHHHHHH!!!!! (Sorry, but I did say no promises)… for two days of tests. I’ll have 12 hours of hourly EKG’s, a follow-up EKG 12 hours later, a CT scan, an eye exam, an echocardiogram, and a test to see how many times I can say,“Peter Piper picked a peck of pickled peppers” without making a mistake. Then they’ll have me count down from 100 backwards by 7’s while skipping rope, also backwards.

WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry. It just keeps leaking out! Anyway, I just made up the last part of my pre-trial test protocol. I’ll let you decide how much of it was made up.

On October 14th I’ll start taking AZD9291. This is a pill that I will take once daily. Despite all the heart, eye, and rope-skipping tests, the side effects are usually minimal.

I can take the drug at home, but will need to come to San Diego weekly for the first three weeks, then every three weeks, and eventually every six weeks for tests.

Once I get rolling, I’ll be able to fly down and back in the same day.

Now on to the other important stuff. THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All your thoughts and prayers for a positive T790 result paid off!

I will be the first to tell you that I am the massive beneficiary of a giant run of dumb luck! I will also be the first to tell you that it wasn’t ALL dumb luck. It was you, and it was me! We did it! WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!

YAHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ThankYouThankYouThankYou for your very important part of this! Even though the odds of getting in were 50/50 (and not as high as my Portland oncologist thought), it felt a lot more like an almost-sure thing waiting to happen. With everything lining up the way it has been lining up, and with all the support that you have given, how could it not be almost a sure thing? You have my gratitude!

More to follow after I crash from my adrenaline rush.

Love,

Dann

P.S. Thank you!

T790 is Everywhere!

My brother Mike and his wife Colleen sent this photo to me today from the Eastern Oregon desert to let me know that T790 is in the air! (Maybe, more specifically, the lungs!) Thanks for sending all the love and positive energy my way!

Smooth Sailing September 20, 2014

Friends and Family,

Yesterday was another day that could not have gone any better!

We met the Interventional Radiology (IR) doctor just before the procedure. I asked him if he knew why we're hoping he'll use the "little guy" tumor if possible. He told me it was probably in my chart. His "Fellow" (trainee doc), who had done his homework, was able to tell him that using the larger tumor would delay the start of my treatment by almost four weeks.

Next I told him that I was willing to tolerate a little more risk in going for the harder-to-get "little guy," in exchange for starting treatment sooner. He agreed to try. Again, it pays to be your own advocate!

I also handed this IR doctor a piece of paper and asked him to read it to while I was under sedation. Here is what I asked him to read:

"You're going to start shrinking all your tumors and the cancer in your bones right now, and you're not going to stop until it's all gone from every part of your body. Make it happen, Dann! Don't wait for medication to do it!

And so it is."

He gave a less than committed response, but his Fellow promised to make it happen. Better yet, after they left, Anthony, my nurse, told me that he would read it, because he understood what I was trying to do. He said he would try every possible approach to healing if he was in my shoes, because we just don't know what will or wont make a difference.

Anthony read it to me three different times during the procedure, more than I had asked for.

I'm not sure that Anthony has more than a vague idea how much this means to me, since I was too groggy to express myself, but he will. I will be sending him a thank-you letter today. Whether this hypnotic suggestion works or not, his caring left a big impact on me. It doesn't always take a tremendous effort to make a difference in people's lives. It just takes showing that you care.

I made it through the procedure without any complications, and the IR doc was able to use the smaller tumor. YESSSSSSS!!!!!!!! All systems go!

Tuesday we're off to Hawaii to think about sand and surf and the beauty of the world, and being T790 positive, and not all that much more.

We will find out if I get in the study in about two weeks, when we get the biopsy results. Until then, thank you for all your positive thoughts and prayers, and for visualizing T790.

What you do really does make a difference.

Love,

Dann

The Stars are Aligning September 8, 2014

Friends and Family,

I’m not out of the woods yet as far as getting into this study, but before I fill you in on the missing piece I should tell you about Craig. Many of you have asked how in the world I ended up meeting someone in the same situation as me, who just happens to live a thousand miles away, and who is in the only clinical trial for this drug this side of New Hampshire. How did the stars line up for THAT one?

It started back in December, when I was visiting my father-in-law Walt in San Diego. I had some time, so I scoured the internet, looking for blogs written by people with cancer that are like-minded. I found this guy that had a great attitude about his cancer, and had a very entertaining way of writing. Plus, his graphics kept me laughing. Not only that, but the parallels in our lives were mind-blowing. He has the same type of lung cancer, started Tarceva at the same time as I did, had radiation to his hips at pretty much the same time as I did, and has a terrific wife and support team helping him through this, like I do. He’s just a smidge older than me. PLUS – and this has nothing to do with anything other than uncanny similarities – He goes to Hawaii every year, and he had his kitchen remodeled about the same time as we did.

As I kept reading, I found out that he lived in San Diego. What a coincidence, since that’s right where I was! I contacted him and met him for coffee before I left town. We made a great connection, and have been staying in touch and supporting each other ever since.

Once his cancer started growing again, Craig entered the “A-Team” clinical trial. That was just over six weeks ago. Last month when I asked my oncologist about next-step alternatives, he wasn’t even aware that this trial had started. If it had not been for Craig blazing the trail, I never would have found out that this clinical trial was a possibility for me.

WHAT DO I TAKE FROM ALL THE STARS LINING UP LIKE THIS???? I think there are a LOT of pieces that had to come together:

1. Craig started his blog (http://craigblower.wordpress.com/) to SPREAD AWARENESS, which he hoped would be of benefit to other people with cancer. This has worked out, in a big way! Without his blog, I never would have learned about this research project. (Note: This is the same reason that I keep encouraging you to go to my blog site. The more hits I get, the more my blog shows up in search engines, which leads to more people finding my blog, so that I can also share what I am learning.)

2. LOTS OF “DUMB LUCK” IS INVOLVED. Prowling the internet at exactly the right time, just when I was in the town that Craig happened to live in, Craig living in the only city within 2,500 miles of my home that had started this clinical trial…

3. YOU MAKE YOUR OWN LUCK. Arnold Palmer, when someone commented on his good luck, once said, “The more I practice, the luckier I get.” If I hadn’t been searching the internet, I never would have found Craig’s blog. If I hadn’t reached out to him, we never would have become friends. If I had not spent the entire day Friday chasing down the Master of the Universe(MOU), my doctor, and the people responsible for pulling my records together at two hospitals and two clinics, this would not have happened.

4. THERE IS SOMETHING BIGGER AT WORK HERE. Some call it God. I have a more simple name for it. I call it love. To me, this “luck” is a result of ALL OF YOU sending your love, prayers, and positive thoughts my way. That kind of energy finds a way to channel itself into something good! Again, I am blessed by your gifts to me! You have my gratitude!

I’ve held off long enough, so now I will address the part I alluded to at the beginning: I’m not yet out of the woods as far as getting into this clinical trial. I talked with Craig over the weekend, and Craig mentioned offhandedly that one of the criteria for getting into this trial was that the tumor had to be big enough.

BIG ENOUGH? I started worrying. I have hundreds of the little suckers, but none of them was very big. I have been worried about this for two days. Sleep has not been easy.

This morning I called Kathy, the person filling in for the MOU. I asked her the question that every guy worries about at some point:

Was mine big enough?

Oh, come on. If you’re a guy, you KNOW you’ve worried about this at some point. What you needed to hear was exactly what Kathy said to me…

She said YES!!!!!!!!!!!!

YAAAAAAAAAAHHHHHHHHHHHHHHHHH! I ’m bad! I’m bad! It’s big and I’m not sad!

As you can tell by that last little bit, I’m feeling pretty good now!

More to follow tomorrow, after I meet with the doc tomorrow. Until then, you (again and always!) have my gratitude for all your positive thoughts and prayers.

It’s all working!

Love,

Dann

Lightning Strikes! September 5, 2014

Friends and Family,

WHAT A RUSH!

This morning my buddy Craig called to make sure I got critical news ASAP. He had contacted the clinical trial coordinator in San Diego for AZD9291 (dubbed “The A Team” by Craig), and found out that they will only be accepting new patients UNTIL NEXT FRIDAY. I have exactly one week to get into this trial, or miss the opportunity altogether.

Was it time to press the panic button? This was the only treatment option that we know of that sounded better than either chemo or staying on Tarceva and going downhill slowly (or faster, we don’t know). My time window was incredibly narrow. I also needed to have the right mutation (T790) of my mutation (EGFR), get all my clinical records down to San Diego from two different clinics and two different hospitals, have my oncologist call, get an appointment and be seen, and possibly have a new biopsy, all by next Friday. It felt like drawing a target in the middle of a football field and hoping that lightning would strike on the 50-yard line.

I felt the tension mounting this morning as I was scrambling to get this together. I called AND emailed the clinical trial coordinator (“Master of the Universe,”for my purposes), essentially telling her that I would do back flips, cartwheels, paint myself purple and turn myself into a Wookie if it would get me into The A Team clinical trial by next Friday. Next I called Dr. Cetnar's office to grease the wheels of bureaucracy by using the two-pronged frontal assault, from both doctor and patient. HOWEVER… wait for it… he is… ON VACATION starting today!

About this time my back was so tense that it felt like a coiled steel spring. If someone had snuck up behind me and said “boo,” I probably would have jumped right over my desk. I might have even left a trail behind me.

I finally got an email from the Master of the Universe (MOU), letting me know that ALL my clinical records, biopsies and scan results would be needed to consider me for the trial. And, by the way… wait for it… she is… ON VACATION starting at 5 PM today. No pressure here…

In the end, the pieces tumbled into place. MOU told me that since I already have the T790 mutation, I shouldn’t have to worry about being in the target group. Dr. Cetnar called MOU from home on his vacation. Both OHSU and the Oregon Clinic got past their internal glitches and computer failures and faxed their small mountains of records to MOU, and both film libraries told me that they would have CD’s burned with my scans on them by Monday. AT 5:30 PM today MOU emailed to tell me that my appointment will be on Tuesday.

MOU started her vacation right after hitting the “Send” button.

I’m in!

Absolutely everything had to line up for things to fall together for me. If I had my CT scan a week later, I would have missed this clinical trial. If I didn’t have a job that was flexible enough to accommodate the travel involved, I couldn’t make this work. If we weren’t fortunate enough to be able to afford repeated travel expenses, this wouldn’t be feasible. And of course, if I hadn’t heard about the trial from my buddy Craig, my oncologist wouldn’t have even known that the trial had started.

EVERYTHING above had to fall together in the right way. What are the odds?

Sometimes lightning DOES strike right where you need it.

Thank you to all of you for all of your positive energy, prayers and cheerleading. Some of you took that request literally! It was great! I have also shared your emails with Genevieve, and both of us have coped much better because of you. It was a semi-sleepless night for both us, made much better because of you.

Thank you for being my light, and my lightning.

Love,

Dann

Your Thoughts on Why I am Still Alive June 14, 2014

Family and Friends,

Thank you very much for all of your thoughts about why I am still alive. I appreciate all the time and love that went into your responses. I plan to use your answers to help me stay better focused on what is working. Hopefully this will keep me alive even longer! In addition, as I said when I asked the question, I plan to share this with others, starting with all of you. I am also hoping that others with cancer will find some benefit in how it may apply to them.

In particular, today I want to share this with Larry, and with Tricia’s sister. Both were just diagnosed with cancer. I can tell you from experience that they are going through the hardest part of the entire cancer experience right now. To me, the time when you first find out is harder than the entire rest of the experiences COMBINED. If you have positive thoughts, prayers or love you want to send their way, even if you don’t know them personally, please either email me or add your comments on my blog and I will forward them.

On to your comments. The responses were heartening, humbling, and almost overwhelming. Again, I am very grateful for your responses. I did my best to pull the kernels from each one, and grouped them in a way that made sense to me. I hope this also makes sense to you.

Here they are:

ATTITUDE

“These four words: open-ness, loving-ness, learning-ness, and receiving-ness. I'm not sure what order they would be. It's more of a circle with them all being related to each other.”

“It takes openness, intentionality (every second!!), love, and power to do this.”

“1.) Your positive outlook on life; 2.) Your strong desire to never give up”

”Your attitude. You have battled cancer head on and from my perspective have never given up even in the face of bad news at times. From talking to you and your emails your attitude has always been positive and optimistic even when things have gone sideways.”

“Attitude is just about everything in fighting off cancer.”

“Positive energy. That being said I believe that the positive energy gets to you because you have shared your story with so much love and positive attitude -- and what one sends out into the world comes back many times over -- like an echo :-).”

“You are more alive than most people who do not have cancer
And that much ALIVE does not dim easily
Your light shines brighter more fully so it cannot easily be extinguished”

“You "REFUSE" to give and say enough is enough.”

“My sister who has breast cancer states emphatically that it is ATTITUDE that makes all of the difference. This is born out in studies.”

“Never for one moment, have you ever projected self-pity. Your selfless and undaunted attitude about your circumstances is an attitude that could very well be a psychological tool to defeat, defer, or stop the spread of cancer.”

“Your ability to focus on a positive outcome, your ability to engage in your valued daily routines such as work, rest and play, your ability to surround yourself with people who like you, your ability to create boundaries, your ability to laugh and enjoy the small miracles that occur…” Christine

“You have found the sweet spot between keeping negativity at bay and bringing in love through your generosity and interest in others.” – Linda

“I think that all the emotional work you have done, including setting boundaries … has been huge. And, here's where I am going with this. Your journey is benefiting others.”

INTENTIONALITY

“Intentionality is absolutely the cornerstone of why you are still alive. I believe it has always been your intention to stay alive and enjoy your wonderful life. Ongoing health is all about your intention.”

“Ongoing health is all about your intention and the intention of all who love you.”

“Having a purpose greater than me to which I feel responsible.”

GENEVIEVE (LOVE!)

“The love and support of Gen who, if I believed in saints she would qualify!! She's been with you every step of the way and I'm sure as with you she has not let your cancer get her down or affect her attitude.”

“Gen has helped switch your DNA through her art pieces and these I believe are channeled specifically to light you up when the colors and shapes hit your optics. (They also have some kind of sounds associated with them.) That said, you both are allowing (encouraging? pulling?) healthy lungs from the DNA strands (another type of string theory?) to come to live in this reality.”

“Hugs my dear friend and hugs to Genevieve for all that love she gives you. You are so lucky to have each other. That doesn’t hurt survival either! I know Lee kept fighting because he didn’t want to disappoint me.” – Jan

“With Genevieve visualizing and creating her magic, you definitely have an advantage in healing that most do not”

LOVE

“Love is an essential piece of this, and some of it is in how we define love. For me, love is the unconditional acceptance of another as perfect the way they are, fully allowing them to do what they do and be who they are. When I fully allow someone (or some situation) to be the way it is, there is no friction or stress of resisting it. Water does not feel stress of gliding around rocks in the stream. This allowing is very different from resignation about circumstances.”

“You are thriving because you're allowing yourself to be loved. It's not an easy thing to do and requires that you love yourself and all your parts and us and all our parts. Whew! it means that you are healing the planet, us, and yourself at the same time. It's a lightworking job.”

SUPPORT FROM OTHERS

“Writing a daily gratitude for your vibrant EVOLUTION every night. Sending you weekly greeting cards to give you something to look forward to each week besides junk mail! I do all of this because I love you and I know that by staying focused on your daily well-being, it’s one more way to stay present which is something I am learning from you!”

“A good support system and a positive outlook help immeasurably and you have that in spades.”

GOD / SPIRITUALITY

“You have a team, a subset of your village, that is working on your physical healing from a spiritual standpoint. Gen, of course, leads the charge in a big way, but others of us are following her lead... the power of prayer and spiritual practice.“

“I think God has given you a gift for the kind, thoughtful and gentle life you choose to lead.”

“Continuing to pray for you and your family and the doctors for your continued healing.”

“God has answered all of our prayers.”

“We have been praying for you and will continue to do so.”

PURPOSE ON THIS PLANET

“It is pretty clear to me the way you deal with a significant illness is so empowering to others that your purpose on this (our) planet earth is largely seen as a work of art. So much so you had the burden of having a variation of the same disease return and Once again you have found a way to navigate the challenges all over again. Your perspective, toughness and overall light heartedness is appreciated by so many that apparently our maker loves what you do. I (we) do too. You are special man and I am so thankful you are in my life.”

“Quite simply, you are still alive because you are not finished yet. This journey you are on, the cancer journey, is not only a soul lesson for you, buy you are providing an amazing glimpse into our own souls, and the power that lies within each of us. This is the work you came to do.” - Laurie

“Simply because you are a wonderful person and it’s waaaaaay too early for you to leave this planet. You are a treasure to all the people you know and come in contact with!” – Jan

DIET AND EXERCISE

“Diet and exercise are important.”

“You've kept exercising, eating right and paid attention to what your body is telling you.”

OTHER THOUGHTS

“I'm sure the drugs you've been on have also helped but I put them down the list a bit…”

“Finding our own balance between all of the above is key. And, this balance can change over time.”

“A quote from Richard Bach's book Illusions: ‘The test to see if your mission in life is complete, if you are alive, it isn't.’”

“I suspect the secret to your longevity has something to do with a childhood ritual you used to practice of blowing smoke out of your ears after spinning around the requisite number of times of your current age and then puffing. I’m sure the practice strengthened your auto-immune system, your equilibrium, and your tenacity.”

“…and just dumb luck.” - Christine

………………………….

Thank you again for all of your amazing input!

Love,
Dann

Why Am I Still Alive? June 5, 2014

Friends and Family,

We just got the results back from my latest 3-month CT scan, and we are once again ecstatic. NO GROWTH - AGAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

By now you're probably saying, "Yea, yea, blah, blah. We were expecting that from you." I can tell you, however, that it NEVER feels like that to either Genevieve or me! For us, it is time to celebrate our quarterly "Gratitude Day." We have every reason in the world to be grateful!

This is different than our DAILY Gratitude Day, only in that today we received terrific news. We celebrate every day because the gift of life is a treasure that could be taken away at any time. It is not an entitlement.

Of course, that's too short to be the end of the story for today. The rest of the story is that I want to ask for your help.

Chaz, a close friend, always asks me great thought-provoking questions. This one, however, is the best. After my last email he replied by asked me why I was living so much longer than the average cancer survivor. "What are you doing differently?"

I gave him my short answer: Attitude, exercise, and the love and support given by an amazing group of family and friends (YOU!). Sensing that there could be more to it, he has asked me the same question many times since then. I offered a couple of more details, but nothing that really added a lot. He wanted an honest, complete answer to a question that, for a lot of reasons, deserves nothing less.

I think there may be more reasons, but I'm not grasping it. I asked Genevieve about this, and she has her own list. I would broadly term many of her ideas as being high on the "woo-woo" scale, but in short I would describe her list as offering me love in every way that she can imagine (including many that I never imagined before this!).

I am continuing to work on my own list, but my list is clearly incomplete. THIS IS WHERE YOU COME IN! As I have said before, it takes a whole village to shrink a tumor, so I am asking for your help. Here is the question:

If you have your own ideas about what is keeping me alive, can you please share your thoughts with me?

These ideas may be based on what I have written, or what you have seen directly from me, or what you or others have done for me, or your own ideas. Two words or two pages, whatever it takes / whatever you would like to share. Profound or routine, obvious or subtle, concrete or esoteric, spiritual or blasphemous. With the stakes so high I am trying to keep an open mind, so ALL ideas are welcome - and appreciated.

I plan to compile a list of responses (condensed for brevity) and make the list available to other people. There are many in the cancer community (yes, there is such a community!) who would love to get more ideas about what could keep them alive. In particular, someone close to me has a family member who was just diagnosed a few days ago, and I want very much to be able to offer him something. As you can imagine, many people with cancer are searching everywhere for answers. Your gift would be shared with people trying to find their way. Of course, I will also make use of the list myself, since it will better help me to keep doing what works best, and to stay alive.

Bonus question for those of you who have had cancer: What do you think is working to keep YOU alive?

There is another reason that I want to compile this list and share it. I suspect it will have value to people far beyond just those who have cancer.

If you specifically give your permission I will include your first name, but if you don't I will assume you want your name left out.

On a completely different note: Many people said that they enjoyed seeing my personal view of how "CAT scans" work. My friend Deb then inspired me to put together an expose' on "lab results." Yes, my sense of humor has literally gone to the dogs. You can get a fresh perspective on lab results as well as seeing past emails at http://dannscancerchronicles.blogspot.com.

Love,

Dann