New CT Results, and Requesting a Little Hope

Friends and Family,

My latest CT scan results are in, and things remain spectacularly unchanged. Can you see my smile from there? :-) I feel increasing gratitude after every scan, because I can’t count on this lasting forever.

I know this because the New England Journal of Medicine just published the Phase I trial results for AZD9291 (http://www.nejm.org/doi/full/10.1056/NEJMoa1411817). The average time people stayed on the drug before their cancer started growing again was 9.6 months. If my results are average, I have a couple of months before things change. I don’t plan to be average. I’m treating the stats like you would a pole vaulting competition. Somebody has to set the record. 

Ever since I ran into a guy at the LUNGevity Hope Summit who had been on Tarceva for eight years (roughly seven years longer than average – and still going), it has raised my level of hope.

How much difference can hope make? How much difference can love and support make? This is where I’m asking for your help.

Two things. First, I’m asking if you will send me your images of hope. In my last blog entry (below) I posted a couple of images of "Hope" that I found in Washington DC. I’m hoping you will help me expand that list by emailing more images to me. It makes more difference than you can imagine. As proof, those images you sent to me of light zapping the cancer and healing light a few months ago kept me (and many others) flying for months!

Second, I’m inviting you to join me for the Lung Love Run/Walk on Saturday, June 20th. My very own team, “Live Lung and Prosper,” welcomes new members and/or donations at http://bit.ly/1Kj9tbk. If you join by this Friday, June 29th, they can still guarantee you a tee shirt. After that it’s a gamble. (Sorry, it’s the real estate agent in me. Gotta create a sense of urgency.)

OK, I held back the best part of my CT scan results. It showed that my Swiss cheese hip bones and spine are turning solid again. Was this improvement caused by the AZD9291? Was it caused by the bone strengthening (Zgeva) injections combined with calcium supplements? Was it the healing light sent by y’all???

Hoping everything is going well for you, too.

Love,

Dann

Footnote: If you don’t have my email address, go to the Contact tab at the top of the page and give me your email address. I’ll reply with mine.

Love and Trash

Friends and Family,

Things are pretty spectacular right now, and only partly because of trash.

I know that isn't what you would expect me to say when I'm telling you about a trip to Hawaii. You might be expecting me to tell you about the sunny, breezy, tropical weather, or the warm water that has been perfect for body surfing and boogie boarding. Maybe you're thinking I'll tell you more about the five mile sunrise walks on the beach with Genevieve, where we have the beach almost to ourselves.

You would be right to guess all of those things. But the trip gets much better.

The stars aligned so that my son Mike and his wife Victoria were able to join us. Since Mike hasn't lived with us since he was a troubled teen, and since he hasn't even lived in the same state as we have for the second half of his life, this time has been special.

It's pretty obvious from this picture where Mike gets his muscular build.

It's pretty obvious from this picture where Mike gets his muscular build.

We've had a chance to hear about Mike's and Victoria's accomplishments and challenges as missionaries for the past four years in the Philippines. Making a dad even more proud, it would be hard not to see the love in his relationships with his wife, Victoria, with his children (unfortunately not with us), and with everyone around him. It's been a special time, a chance to reconnect. This time of love and sharing has been a father's dream.

This time with Mike and Victoria has been the richest part of our trip, but it isn't the only thing we did that left us feeling full of love. We also picked up trash.

Even with their "aloha spirit" ("love"), the Hawaiian people are still learning how to treasure their environment. We've been collecting trash on our morning walks for years, hoping that when the beaches look beautiful, everyone will want to keep it that way. It's our gift of aloha.

This is where the healing comes in. Love heals. It heals our cells, and I believe this includes cancer. It heals our soul. It holds true whether it's the love of family, the love of everyone, or the love of the world. Even if we're collecting trash, it feels good to leave the world a better place than we found it. It's all love.

So what gives you the aloha spirit? I can't wait to hear your ideas. You know why? Because your sharing will be healing for you, and for me, and for everyone else who reads this. Please share your stories or thoughts about healing love, whether it is two words or two pages.

Aloha,

Dann

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"

                                                                          "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

 

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

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