Another Trip to San Diego, but Things are Changing

Friends and Family, 

Since Genevieve and I first started going to San Diego for my clinical trial, a lot has changed. UCSD has built three new buildings and a parking structure on the campus. The city has widened the roads on two sides of the campus, and the bones of a new elevated trolley have appeared. We have been through three different nurses assigned to work with Dr. Patel, and this is our sixth clinical trial coordinator. In fact, the only people that have remained constant have been Dr. Patel, and the woman at the Budget rental car window that we see every trip.

There is one other thing that hasn’t changed, and that is my scan results. 50 months after starting this trial, we are still overwhelmed every time we make the 1,000 mile flight and hear the words, “there is no change.” This gift of 40 “bonus” months beyond the average  (and counting!) means that there is more time for the next new treatment that could extend my life to be developed. I may just outrun this cancer yet!

There is one other change, and it’s a good one. I outlasted my clinical trial! While I will still keep going to San Diego for my care, and my daily Tagrisso pill will remain free for as long as it works for me, they are no longer collecting data. So, starting with this last trip, there are no more echocardiograms and EKGs every three months, and I no longer have to get radioactive contrast die injected in my veins every time I get a CT scan. HUGE relief on that one. Things couldn’t get much easier! We have an unbelievable amount to be grateful for.

I also wanted to tell you about my book giveaway. In honor of Lung Cancer Awareness Month, I gave away the digital version of my book to anyone who ordered one on Amazon in the last three days of November. That random number of books given away turned out to be 433. And while I was quite happy to give away that many, the significance of the number didn’t hit me until I shared it with some blogger friends. They immediately asked me if I gave away that number on purpose, since 433 is the number of people that die every day of lung cancer. You will find a lot of social media posts with #433 or #433aday. Amazing! 

One more thing to share, and that’s my next new Thriving With Cancer Minute on You Tube.  Here’s the link: https://youtu.be/3_TmzkflEBs

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Hoping all is going well with you, and you find much to be grateful for.

Love,

Dann

Handling the Pressure

Friends and Family,

I was part of an online lung cancer forum last week, where a woman said that she was just about to start taking Tagrisso (my drug), and wanted to know how long it usually works. Someone offered the statistical answer, which is ten months. Another person said that it had worked for him for five months before the cancer started growing again. This was a shocker to me, given the success I am having. My own comment? I told her I had been on Tagrisso for 39 months without growth so far, that I know people that have been on similar drugs for five to seven years, and that she is not a statistic. Don’t let anybody tell you how long this is going to work for you!

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The randomness of how long this drug works for different people was on my mind when Genevieve and I flew down to San Diego this Tuesday to see my oncologist, and get my latest scan results. I told myself I was confident this time, but my blood pressure said I was lying. Even though objectively I feel good and have no symptoms, my emotions and my body apparently don’t care about being objective when the stakes are so high.

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The worry turned out to be unfounded. Dr. Patel popped his head in the door and said, “You’re scan is fine! No growth!”

It’s incredible how Genevieve’s and my world can shift in five seconds. Relief! Excitement! More relief! It’s not a new lease on life, but a three-month extension on the old one is pretty good! (Sorry, I work in commercial real estate, so this is what you get.)

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Usually after we get the CT results, the same question runs through my head: Why am I doing so well, and for so long, when most others do not? I frequently think about all the ways you helped me grasp this. See Your Thoughts on Why I am Still Alive for the full list. Spoiler alert: There are a lot of reasons!

One of the items from that list stuck out more than usual this time. It was having a purpose, a meaning in life. Often something will come up, and I’ll think, “That’s it. I just can’t leave Genevieve by herself. I absolutely have to stay alive.” It’s amazing how often this is in my thoughts.

But this time, I was thinking broader. I have a purpose in life beyond Genevieve that isn’t complete.

That purpose is to help others going through cancer, and hopefully, to provide plenty to think about even for others who are not living with cancer. I do it in little ways, like comments on online forums, where I am attempting to bring hope to those following after me. I also try to accomplish this goal with my blog. And the big one, which is on my plate right now, is getting my book out. I want other people to benefit, and maybe be able to take shortcuts to lessons I had to learn by trial and error over the past eleven and a half years. I can’t drop off the planet when there is still so much to do!  

Right after seeing Dr. Patel, Genevieve and I had another appointment. Of course, they took my blood pressure again.

It dropped 28 points.

I guess the pressure was off. :-)

Love,

Dann

Lung Force Expo is Coming to Oregon!

Friends, this is the event where I will be leading a session called "Being Your Own Advocate," and Genevieve will be sharing her story as a caregiver. There is much more going on. I love the agenda for this year's event. Here's the official presser: Find resources, information and support at the LUNG FORCE Expo. This one-day, educational event at the Monarch Hotel and Conference Center on 11/4/16 is designed for lung cancer survivors and their caregivers to learn more about the latest resources, research and developments related to lung cancer. To learn more check out: http://LUNGFORCE.org/Expo.

Hope is Human

These are images of hope that never crossed my mind without your help. Steve and Violet sent this photo of their new grandson, Luke. What says hope better than new life?

Proving that you don't have to be a baby to be the embodiment of hope, Marje sent this photo of her grandson, Zan, "who is all about hope." 

Finally, this living taste of hope has been on my refrigerator for months. Meet my niece Melissa and her fiance Pete. Can you see the hope (and love) in their eyes?

Before I could even post this, Steve and Violet came through again. Meet their newest granddaughter Katelyn. And yes, she really was born yesterday.

Thank you to all for sending these images of hope. They're doing the trick! I'm feeling more hopeful with each new image. I hope this is doing the same for each of you as well.

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:

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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. 

                                                            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. 

More Healing Sunlight

In early January I asked people to  "Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters." I've been overwhelmed by the inspiring pictures that people have sent. While some of the photos have focused on "frying the little critters," many others have been awe-inspiring healing light. So which is more healing? Killing the cancer, or having healing light? You decide.

These two beautiful photos were taken by my cousin Kevin.

This photo was taken on the fall equinox at Stonehenge. No, not that one. This one is in Maryhill, Washington. The Stonehenge may not be the real thing, but the sunrise definitely is.

This photo was taken on the fall equinox at Stonehenge. No, not that one. This one is in Maryhill, Washington. The Stonehenge may not be the real thing, but the sunrise definitely is.

This sunset photo was taken in Santa Cruz. If this doesn't inspire you to heal, what does it for you?

This sunset photo was taken in Santa Cruz. If this doesn't inspire you to heal, what does it for you?

Things are going to H@%%

Friends and Family,

That four-letter “H” word is back on my mind again lately, and it’s not the one that would have gotten me in trouble in grade school.

About three and a half years ago, my company had new pictures taken of all of the brokers. Since I was just about to start chemo, the timing for a picture wasn’t the best. Should I have my picture taken with a full head of hair? If I did, then people who first saw my picture on our website wouldn’t recognize me when they met me and my shiny, pale, bald, head in person.

So should I shave my head bald? That would be confusing later, after I finished chemo, and my hair grew back.

So which H-word is the real me? Hairy or hairless? And why is this so important? Sorting this out was giving me a bad hair day.

I decided to compromise. I gradually cut my hair shorter over a few weeks, so that everyone – including me – could get used to it. Just before I had my picture taken, and before chemo kicked in, I had my final haircut. This cut left little to the imagination.

After chemo was finished and my hair grew back, Greg, one of the partners, asked me if I wanted to have my picture taken again. “No,” I said, “I like the picture. Let’s leave it as it is.” Greg kept asking over the next three years. Although my answer didn’t change, Greg was right to wonder.

I worried that I’d soon be back in chemo, and once again bald. And if that happened… well, before long  they may not need any picture of me on the website. See where I’m going with this? There’s more meaning to hair than hair. I had more doubts about my future than I would care to admit. It was a lot like  a couple of years ago, when I thought that there was no point in buying new underwear if I didn’t think I’d be around long enough to use it.

So why did I finally ask to have my picture retaken? It’s because of that H word. No, I’m not talking about H@%%. I’m also not talking hair. I’m talking hope.

Running laps around your life expectancy a few times can do that for you. So can having great success on a new clinical trial. Having amazing doctors that have creative ideas about how to deal with lung cancer can give you hope too , even if no cutting-edge treatments would be a fit in the near future. My future’s so bright, I gotta wear shades. Maybe it’s so bright because of all those images of rays of light zapping the cancer cells that all of you have sent me.  

Here’s more reason for hope: I have been on three treatments that didn’t even exist for lung cancer patients the first time I went through cancer. Tarceva, Avastin, and AZD9291 are all new. How can that not make you more optimistic?

You can probably even see it in my picture. You know, the new, permanent one.

Maybe I can even relax a little. You know, let my hair down. Not take things so seriously.

I hope there’s reason for hope in your life, too.

Love,

Dann