Blue Skies, White Ribbons, and Red Roses

Friends and Family,

It may be too early for the fourth of July, but all the right colors are there. I feel like some fireworks:

BLUE SKIES because I’m feeling great this far out from surgery, I have no physical limitations (freedom!), chemo has been incredibly easy for me, and there are no new scans to tell me things aren’t as good as I think. Yahhhhhh!

WHITE RIBBONS because last weekend our friend and fellow survivor Dawn Horner (below) got our local support group together, along some with amazing family and friends. We spent a few hours making white ribbons to help spread lung cancer awareness. I’ll spare you the gushiness, but the spirit of the project and the togetherness seemed to leave all of us feeling warm and fuzzy.

People are putting these white ribbons on their houses, in their windows, in their clinics and doctor’s offices, and having their pictures taken in all sorts of interesting places, then posting the pics on social media with the hashtag #thewhiteribbonproject, like this:

 If you want to know more, see https://www.facebook.com/TheWhiteRibbonProject. If you live near me and want a ribbon, let me know and I’ll get you as many as you want.

 Finally, I wanted to post about RED ROSES. These are in gratitude to my wife Genevieve for all that she has been through with me in the past year. Genevieve, thank you for being there for me when I dropped down to 138 pounds and you had to wheel me around the hospital because I couldn’t breathe enough to walk. And also for the endless days you spent sleeping on the sofa near me while I slept in a chair using oxygen, because there was too much fluid in my lungs to breathe lying down in bed. For patiently repeating things over and over when I was too stoned on pain meds to remember what you were saying. For (almost) never snapping back at me when I snapped at you out of frustration. And for surviving the trauma of watching your husband come so close to death. Most of all, thank you for giving me a reason to fight like hell to stay alive.

For all of this, and the countless other things you have done for me, I will always be grateful. Thank you, Genevieve!

Love,

Dann

On the Rebound

Friends and Family,

Genevieve and I have certainly had our hands full or the past few weeks. Rather than take you through each step, I’ll summarize:

• A one-shot blast of radiation to a good portion of my spine to dampen the pain in my back, and perhaps knock down some of the cancer growing in my bone marrow.

• A biopsy to my liver while we were simultaneously draining the fluid from my right lung.

• A second procedure to drain the fluid from my left lung. We found out after the first lung that they won’t do both at one time due to the risk of having a collapsed lung on both sides at the same time.

• I started chemo two and a half weeks ago, and received a full dose of Alimta and 80% of the usual dose for carboplatin. We did this and crossed our fingers that my platelet count wouldn’t crash.

• Two days later I had a procedure to add two semi-permanent drains to my chest, one for each lung. These are designed for Genevieve and me to drain my lungs at home every other day for as long as my lungs keep producing extra fluid.

• I now have oxygen at home to use as needed. I occasionally use it at night when I’m struggling for air.

Despite all those hits to my body, I’m feeling better than I expected. This is me on the upswing!

The first big hit was the radiation, which left me nauseous within minutes of getting zapped, and along with fatigue, stayed with me for another 10-11 days. This surprised the radiologist, who acknowledged that it was probably because the radiation also zapped my intestines. A couple of days after the worst of those effects passed, I started chemo and fell back into fatigue and nausea. The first week after chemo, my platelet count remained low but relatively stable, so we had passed the first big hurdle.

Last week is when we got the good news. My platelet count shot back up to over 100,000, back to the normal “safe” range for giving the standard dose of chemo. Dr. Sanborn is confident now that the radiation is what was zapping my platelet count, and we are out of the woods (for platelet counts) from here.

The biggest remaining issues are that it is still hard to breathe, and while the fluid buildup in my lungs isn’t getting worse since we keep draining it, the fluid buildup isn’t slowing down, either. We’re hoping the next round of chemo this Wednesday will attack both of those problems, now that the rest of my body is cooperating better. If it doesn’t work, I’m not sure what options we might still have.

I’m doing my best to give my body all the help I can. Last week I started taking walks whenever possible. But these are not the hour-long hill walks that Genevieve and I have done daily since the pandemic began. These are flat ground, slow motion affairs. If we go up a very slight incline, Genevieve leaves me in the dust before she realizes it’s even happening. Breathing is that challenging for me at the moment. To compensate, and to stay out of the cold (I’ve lost what little meat I had on the bone, so I chill quickly), we have begun mall-walking in a nearby mall that is on its last legs. It’s not wonderful that the poor mall is struggling, but in the meantime it’s perfect for our purposes.

I’m still taking Tagrisso, and that has been approved by my insurance company for at least the next year, so it looks like we are attacking this cancer with everything we can for right now. There’s no new treatment on the horizon – just the hope that what we have already started works better when my body is doing everything it can to help out.

Thank you for all of your ongoing support – the cards, the meals, the texts and emails, the FB comments I confess I haven’t looked at in weeks. It all brings tears to our eyes, and lets us know that we are in this together. You are helping us get through the hardest parts I have experienced since this cancer journey began in 2006.

Love,

Dann

A Love Story

Friends and Family,

Every now and then an opportunity comes along to do something special. This time, Cancer Health decided to do a cover story about Genevieve and me. I got choked up reading it. The writer, Kate Ferguson, spent a lot of time with us (by Zoom), so when she was done, we had no idea what direction she would take the story. It turned out great.

What made this special for me is that there is more focus on Genevieve, and on us as a couple. Care supporters rarely get acknowledged, let alone featured. Yet Genevieve is a central part of why I’m still alive, and the journey is just as much hers as it is mine.  

Stigma is an incredible barrier for getting support lung cancer research, so I it’s perfect that this is a love story, not a story about disease. Imagine – a story about someone with lung cancer where smoking isn’t even mentioned! Are we finally being seen as human beings in the press?

The only thing I wish could have been different was to make the credit more prominent for a beautiful photo of Genevieve and me in front of a set of stairs. Credit goes to Heidi Von Tagen of Uncommon Muse Photography https://www.uncommonmuse.com/. And I don’t see the credit for Jay Fram https://www.jayfram.com/, who took the cover photo. Jay was kind enough to allow us personal use of the photos, so our holiday photo card this year is one of our favorites ever.

I hope you enjoy the story. Here’s the link: https://www.cancerhealth.com/article/cancer-health-winter-2021. Scroll down to flip through the magazine using a flipbook.

Love,

Dann

What's in Your Smoothie?

Friends and Family,

The question I get most often these days from other survivors is about my diet, and it’s not because I’m a master chef. My cooking is a little less Wolfgang Puck, and a little more Bizarre Foods with Andrew Zimmern. But when you are still alive with Stage IV lung cancer fourteen years after being diagnosed, people want to know why.

Most survivors are convinced it must be what I eat. I think that’s partly true, but there is much more to it. There are many other factors that are at least as important for all of us, like having loving relationships, and a great attitude. And removing the “cancers” from our lives. Having a purpose greater than ourselves. Exercise. Being your own advocate. Spirituality. There are so many things that I think are part of what works that I could write a book about it. Oh, wait! I did that already! You can find it on Amazon by clicking here.        

But let’s get to what you asked for. Here is my smoothie recipe:

·         8-10 ounces of milk or water (Discussion below.)

·         1 dollop of yogurt (*May be counterproductive if you are on immunotherapy. See below.)

·         1 splash of olive oil (Carries the goodies across the blood-brain barrier.)

·         1 scoop protein powder (I find chocolate hides the taste – of everything – better.)

·         2+ tablespoons turmeric (Laboratory studies have shown curcumin has anti-cancer effects on cancer cells.)

·         1 rounded tablespoon cinnamon (Reduces cell inflammation and lowers blood sugar.)

·         1 heaping tablespoon golden flax seed (Multiple benefits – see below.)

·         1 tablespoon reishi mushroom extract: (May have direct lung cancer-fighting as well as immune-supporting effects.)

·         1 tablespoon cordyceps mushroom extract (May have direct lung cancer-fighting as well as immune-supporting effects.)

·         1 handful of spinach, celery, or other greens (Easy way to get in another serving of greens.)

·         About 12-ish fresh ground peppercorns (High in antioxidants, anti-inflammatory, helps with blood sugar, may make chemo more effective, direct cancer-fighting, boosts absorption of nutrients like calcium and curcumin.)

Drink quickly to avoid settling, and to make it easier on your taste buds. You may also want a water chaser nearby.

Whether you can handle all of this in one drink may depend on your blender. If you have a super-blender like a Vitamix or a Blendtec, life gets easier. Our Blendtec pulverizes everything into a creamy smooth drink with no gross lumps. If your blender doesn’t do this, you may want to skip the greens. You will also need to blend the peppercorns and flaxseed in a coffee grinder separately. Grinding the pepper is what releases the piperine, which is the active ingredient in pepper. The flax seeds can pass right through your system whole if it isn’t ground.

Here is the semi-happy end result:

HERE IS WHY I USE THESE INGREDIENTS:

Dairy is a controversial topic in the lung cancer community, and I have yet to find any definitive answer. I gave up all dairy for a while, until my friend Laura Greco sent me a research article about the BENEFITS of milk. Benefits! You had me at ice cream. I couldn’t find that article for this story, but I did find an updated research article here. Without a consensus on the topic, I finally decided that if it ain’t broke, don’t fix it. I was stable, so I was going to have my dairy.

The yogurt adds probiotics to promote immune health. NOTE: THIS IS POSSIBLY COUNTER-PRODUCTIVE IF YOU ARE ON IMMUNOTHERAPY. Here’s an article on the subject. You may want to do our own research on this.

I use protein powder because as a vegetarian, it can be hard to get enough protein in my meals. Note that even though the protein powder is made with a milk derivative, whey isolates, there is a negligible amount of casein in it. Casein is the suspect culprit in milk, for those concerned about its effects on lung cancer. Research your particular brand to be sure.

Here is just one of the many articles on the cancer-fighting benefits of turmeric (curcumin).

Cinnamon is showing up more and more as a direct anti-lung cancer agent. See just a couple of the articles here and here. It is also anti-oxidant, anti-inflammatory, and lowers blood sugar levels. See here for just one more article about this.

Flaxseed has been shown to reduce tumor growth in breast and colon cancer. It also has omega-3  fatty acids, which reduce cancer-causing inflammation and makes it easier to tolerate heart-related side effects of radiation and chemo. Here’s a short article on the subject. It has fiber, which helps regulate blood sugar, which also helps fight cancer. There are other heart, blood pressure, cholesterol, and even eye benefits. Some people have to build up to their maximum amount because of possible bloating, gas, and diarrhea. Here are other possible risks and benefits.  I choose golden flaxseed because I like the taste better than brown.

Mushroom extract is coming more into awareness in the lung cancer community. I found a meta-study, meaning a study that summarizes all the other credible studies, on the use of mushroom extracts in fighting cancer. The results were favorable for both reishi and cordyceps mushroom extracts. Here it is. While I was trying to dig up this article, I found plenty of others about different mushroom extracts such as this one and this one. As a result of this research, I found one other mushroom extract, turkey tail, that I am adding to my smoothie. It’s because of articles like this.

Peppercorns (black pepper) contain the active ingredient piperine. Piperine is released when the pepper is ground, so grind it fresh each time to get the full benefit. Here is a nice article that describes those benefits. However, piperine can interact with medications, may have anti-platelet effects, and possibly other issues. See this caution if you have concerns.  

Now that I’ve shown you mine, how about if you show me yours?

What ingredients do you add to your smoothie that aren’t listed above? Why? Bonus points for a link to the research. Just click “Comment” at the bottom of this post. PLEASE POST HERE RATHER THAN FACEBOOK if possible, so I can keep all the ideas in one place.

Love,

Dann

Thriving With Cancer Minute #4: Living With Fear

Friends and Family,

If you are living with cancer, fear is part of your life. Here are some tips for dealing with this fear:

https://youtu.be/euwplkj-UrU

Love,

Dann

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. 

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

Love,

Dann

Thriving With Cancer Minute #2: Not Knowing How Long You Might Live

Friends and Family,

My series of short videos is up at running! I hope to put out one a week. Here’s #2:

https://youtu.be/JavCWaaJKHE

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!

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.

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.)

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.

If You are Looking for Hope, You Will Find It

My buddy Todd loves sailing, along with just about every other kind of watercraft. So where would Todd find Hope? - A ship, of course. Thank you, Todd!

Steve's Sunrise Brings Hope

Steve sent this photo he took of Sunrise at the Oregon coast. What brings more hope than the promise of a new day?

Thank you, Steve!

Hope is in the Eye of the Beholder

Keith reminded me that hope comes in many forms. Perfect! Thanks, Keith!

Violet's Flowers Bringing Hope

Violet sent these images of hope. "If this flower can bloom on a sand dune, you can beat the record!"

“She also sent this one: “Buds in Spring - A sure sign of hope.”

Thank you, Violet!”

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. 

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

My Future's so Bright...

 In my last entry I told you it felt like my future's so bright, I gotta wear shades. Thanks to Marika for "brightening" my day with another image that makes the picture complete.  :-)

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