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 Dream Team September 18, 2014

Friends and Family,

Genevieve and I flew down to San Diego this morning in advance of my lung biopsy, which will be tomorrow morning at 10:30. Due to time and distance they didn't schedule me for the usual pre-op consultation to explain what would happen.

First I should tell you that a year ago Genevieve and I planned a trip to Hawaii, which would have started today. I asked my new oncologist about delaying the start but still going, since there's nothing to do while we wait for the biopsy results. He didn't like the idea, since I wouldn't be close by if I get the green light. But what difference does that make? If I get in the study I could fly back from Hawaii just the same as I could fly back from Portland. So what would you do???"

We're going to Hawaii on Tuesday.

I called the oncology Nurse Coordinator to try to reach the doctor doing the biopsy, since I knew nothing about the procedure and I was losing sleep over it. I wanted to know how long before surgery should I stop aspirin, since it's a blood thinner. I also needed to know how long after the biopsy it was safe to fly, since I don't want a pressurized airplane to cause a collapsed lung. This is another reminder of how important it is to be your own advocate.

I was curious how they could do a "CT-assisted biopsy," since I've been in that CT tunnel at least 35 times now, and there's not enough room in there for me and the doctor both. We should have met long before this if we were going to be that intimate.

It turns out that they scan me, then insert a needle into my lung, usually through the chest but sometimes through the back. They then scan me again and see how close they are to the tumor. They go back and forth, scanning and adjusting, until they get their biopsy.

I'll be under conscious sedation and feeling no pain. The real danger here is that I'm told that you lose your inhibitions, but have no memory of it afterwards. The staff think this is sometimes hilarious. I'm just hoping that Genevieve isn't in the room, and that there are no hot nurses assisting. Genevieve thinks this comment is sexist, but hey, I'm a guy.

There are still two big forks in the road. The first is to see if I have the T790 mutation, which I will come back to.

The second is which tumor they biopsy, the big one or the little one. If it's the little one, no problem. If it's the big one, and I have T790, they will delay treatment for 24 days so that the tumor has time to "heal" for research purposes. Those will be nerve-racking days, since the cancer will be growing during that time.

If I have the T790 mutation, I'm in the study. If I don't, that's the end of it. I need to find a different treatment option.

This makes now a very good time to visualize:

<<<<<<<<<<<<<<<<<<<<<<<<< T790 >>>>>>>>>>>>>>>>>>>>>>>>>>>>

Speaking of visualizing T790, I have to tell you about our fantastic neighbors! Thursday night we got back from San Diego around midnight, tired and tense from all the treatment/no treatment stress. Friday morning when I went into the kitchen, I looked out the window and saw a giant sign that said, "DANN... T790.... Love Violet and Steve" in their windows!

After seeing that sign, I had tears streaming down my cheeks! With THAT kind of support, how can you NOT believe that everything is going to work out? You talk about team work? THAT is MY kind of team!

Such wonderful support has come from so many of you. It comes in your words, your emails, your blog comments, and your thoughts and prayers. It makes much more difference than you can imagine!

We all think we are so much more alone in this world than we really are. It's just that it usually takes a pretty big nudge for most of us to let each other know. There's much more "Team" around all of us than we know, until a great big opportunity pops up.

So do yourself and someone you love a favor. Create your own great big opportunity. Show them in some way that you love them, especially when they aren't expecting it. That's when it will hit home the most. You'll feel it too. I guarantee it.

That's what I call living the dream.

Love,

Dann

Getting Help Visualizing T790

We got back from San Diego about Midnight Thursday night. Friday morning I had breakfast and then looked out my kitchen window. This is what I saw!

Steve and Violet have these signs in their windows! It put a lump in my throat and tears in my eyes!

What amazing neighbors/friends to have!

Thank you, Violet and Steve! You're the best!

Course Correction September 4, 2014

Friends and Family,

Before Genevieve and I met with Dr. Cetnar today to get my CT scan results, I had the usual paperwork to fill out. The first question on the sheet is, “What are your concerns today?” I wrote, “Making sure that my excellent health continues.” I have felt so confident lately that it has gotten easier to fill in that blank with positive affirmations. Last month I wrote “World Peace,” since I had almost no concerns about my own health.

All that changed today. When a doctor’s opening line is, “I have good news and bad news,” you know what is coming next. In this case the good news is that there has been no increase in the number of little cancer mini-tumors throughout my lungs. The bad news is that a couple of the biggest ones have doubled in size.

If that was the end of the story it would be no biggie, since the biggest tumor is only 2 cm (3/4”), but what it means is that the cancer is learning to work around the Tarceva. It will only escalate from here.

So now we are left with a decision about what to do next. Here are the options Dr. Cetnar suggested:

1. Continue with the Tarceva, and use radiation when the little tumors get too big. This sounds like a crappy option to me, since I have hundreds of the little suckers, and I just can’t imagine that the radiology team can accurately zap a bunch of little spots and hit the targets.

2. Go through chemo again. He doesn’t like this idea, since chemo didn’t shrink the cancer at all last time around. However, it did stop the cancer from growing for some time. Not only that, but he was surprised to hear that my previous oncologist hadn’t used the same chemo cocktail that had been effective in shrinking the tumor that I had eight years ago. That gives hope that it might work again this time. The side effects aren’t fun, and the outcome statistics show a pretty short-term gain for most people, but it beats a poke in the eye with a sharp stick, at least by a little.

3. There is a clinical trial on a new treatment (AZD9291) that targets my cancer’s genetic mutation, but only if the cancer has further mutated in just the right way. My chances of having the right new cancer mutant are 60%. To add a little more challenge to this, there are only two places in the country that are running this clinical trial right now. The closest is at UC San Diego. He doesn’t know if they are accepting new patients.

4. I could start on afatinib, which is similar to Tarceva. About 11% of the people who switched when Tarceva stopped working had shrinkage of their cancer. However, what we didn’t find out is what percentage were able to stop their cancer from growing. It would be great to get rid of it, but I would be happy with a drug that stops it in its tracks for any length of time.

There are other options, all of which Dr. Cetnar thinks would be chasing rainbows.

The upside to all of this is that the growth has been so minor that we don’t have to race around in panic mode to come up with the next step. If the cancer was growing faster we would have to make a quick choice, maybe more out of desperation. Instead, we have time to evaluate the options.

This is a lot to absorb in the last three hours, but we worked out an initial plan. Dr. Cetnar and I will both call UCSD and see whether they are admitting new patients (since sometimes they listen more to the doctor, and sometimes they listen more to the patients advocating for themselves), and what it would take to get me in the trial. Meanwhile, I will also try to get a consult at MD Anderson in Houston, which Dr. Cetnar says is consistently rated one of the top two cancer centers in the country.

I am extremely fortunate in how this is turning out. I have a buddy in San Diego that has been on a remarkably parallel path to mine. He is close to my age, has the same type of non-smoker’s lung cancer, started Tarceva about the same time as me, had radiation to his hips at almost the same time as I did, and just started on this AZD9291 clinical trial two months ago. He is the one who told me about this trial. Long ago my oncologist met the AZD9291 pharmaceutical rep at a conference and asked to be part of the first wave of clinical trials, but he never heard back from the rep, so he didn’t know that clinical trials were actually underway. Hearing about it from Craig may end up saving my life, or at least extending it for a healthy interval.

All your positive energy and prayers are very much appreciated right now, and I do mean POSITIVE energy! Leave your pity behind! Bring on the cheerleaders!

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