Feeling BLU is a Good Thing!

Friends and Family,

Just when it seemed like all of my treatment options were either a) nasty & not very promising, or b) even nastier and not very promising, things are looking up!

My two oncologists couldn’t agree on what to combine with chemo (Tagrisso vs. immunotherapy + Avastin). Trying to prepare myself in advance, I started fattening up a little and bought some Ensure-type drinks to keep the weight on during chemo. However, before meeting with the “tiebreaker” oncologist, I did my own search for clinical trials, and then went to my go-to crowdsourcing resource, a Facebook group called EGFR Resisters. I keep saying that you have to be your own advocate if you want to stay alive.

Armed to the teeth, Genevieve and I met with oncologist #3. She preferred her own band-new clinical trial rather than either of the chemo options, told me that one of my clinical trials had just filled up, and wouldn’t offer an opinion on the other. We had an appointment right after that with Dr. Patel, who was excited about the trial I found through EGFR Resisters. That option, BLU-945, is supposed to be the next-generation EGFR targeted therapy that covers the most common ways lung cancer mutates around treatment. If it works, I’ll be feeling BLU, just like these guys – though maybe a tad less athletic.

I have already made the cut, so I don’t need to wait for another biopsy to see if I qualify. Our first appointment is this coming Friday. Based on my last clinical trial, it could take a couple more weeks to jump through the hoops before starting. This is another pill, just like Tagrisso, and should have minimal side effects. We’ll see.  

The trial is at Cedars Sinai in L.A, which is 800+ miles away. It could be worse. In fact, it almost was. When I first looked up the trial, the closest location was in Houston. That’s a thousand miles and two time zones further away, not to mention having triple the COVID rate – a huge consideration, given my health. By the time we talked to Dr. Patel, L.A. had magically been added to the list!

This has a familiar feel to it. I got into the Tagrisso clinical trial three days before it closed, and it has worked for me for seven years! Timing is everything!

We welcome your thoughts and prayers, or just wish us luck!

Love,

Dann

PS for anyone wanting to find clinical trials: Try https://clinicaltrials.gov/, or use a clinical trial finder, which searches clinicaltrials.gov based on your criteria. This one is through LUNGevity, and also has the option of getting help from a human being: https://app.emergingmed.com/lcctal/home

Dodging a Bullet

Friends and Family,

It looks like we dodged another bullet. The fun never stops, does it?

Last Tuesday, when we met with my radiologist before radiation treatment wrapped up, I asked one more time why I was having such difficulty breathing. He did everything he could to ignore the question, and even tried to blame it on anxiety, but this was a tug-of-war we weren’t’ going to lose. Finally, he said I should get a CT to see if I had a pulmonary embolism.

I had the CT last Friday. An hour after the scan I got a call from the resident who had been with the radiologist. He sounded rattled when he told me that I did have a pulmonary embolism, and that I should go straight to the ER to get started on blood thinners.

Of course it’s more complicated than that. Because of my cancer history and advanced age (slightly insulting), The ER doc wanted me to spend the night to get stabilized. After eight hours in the ER, I had my bed. Genevieve finally left the hospital at 2 AM.

We did learn a few ER tricks, however. Bring food, a cell phone charger, meds, and if you think you might spend the night, a change of clothes and a toothbrush. Lesson learned. We live close enough that Genevieve went home and got those things while we were waiting for the bed.

Because I had very minor pain in my calf they did an ultrasound on my legs, and discovered more blood clots. The treatment is the same, so it was just proof that I was in more of a mess than we thought.

The extremely fortunate part of all of this is that without getting the CT scan, we would have been sitting on a plane for six hours, which could have been fatal with blood clots. Of course, it’s not just good luck. If we had not demanded that the radiologist figure out what was wrong, we would have been on that plane, and Genevieve might have been writing the next blog.

The best explanation for why I got the blood clots came from my oncologist, Dr. Patel. I already knew that people with lung cancer (and it turns out cancers in general) get blood clots easily. But why now? Dr. Patel said that the steroids I have been taking since the onset of radiation may have been one last “blood thickener” that tipped me over the edge. Four days after starting steroids, the shortness of breath started.

It’s remarkable I could get blood clots anyway, since every day I take a low dose aspirin plus mega-doses of turmeric and cinnamon, which are all blood thinners. It’s a wonder I didn’t spring a leak like geyser if my skin was pricked. The combination probably kept me from getting a clot before now, but I’ve had to stop all of them while I take this medication.

There was a wonderful bonus to the CT scan. While they were poking around for blood clots they also looked at the cancer. The cancer in my lymph nodes has shrunk a little, and all of the nodes in my lungs are the same or slightly smaller! How can this cancer be shrinking, when it has been growing for the last few months? I give credit to all of you, and of course Genevieve, for your love, thoughts and prayers. Thank you so much! This doesn’t change what we need to do next, but it makes the waiting far easier when we know the cancer isn’t running rampant while we wait for the biopsy results. We should know more in a couple weeks.

Love,

Dann

Free Book, Panting, Patience, and Glowing in the Dark

Friends and Family,

I’ll try to be brief, but there’s a lot to tell you.

Four weeks after the decision to do tissue and blood biopsies was made, today my tissue sample made it to the Tempus lab for diagnostics. Bureaucracy and dropping the ball are the only explanations. Without my terrier self-advocacy, the sample would still be at the hospital. Teeth may have been bared once or twice, but I kept the growl low.

The question is always how far I can push before it becomes counterproductive. I think I toed right up to the line. In ten to fourteen days we’ll get the results, I’ll learn what mutations I have, and we can make a treatment plan. In short, the waiting coupled with frustration has not been easy, but at least there’s light at the end of the tunnel.

 Yesterday I finished my tenth and final radiation treatment to my spine. This stuff fascinates me. The piece above my head shoots radiation through a template targeted to my spine. The template was aligned by lasers to my tattoos. I got zapped for about thirty seconds, and then there were three more short bursts. Each burst was a more narrowly focused beam designed to get through thicker parts so there are no “cold spots” in the radiation pattern. See how the machine is mounted on the wall? After the first part is done, the entire machine rotated under me, and then I was zapped from underneath just the same. Didn’t feel a thing. After the last session, I was invited to celebrate by ringing the gong.

I didn’t expect the gong to mean much to me, but I got choked up. It’s a rite of passage. We just made it through one more step in this incredible journey, and I’m still standing. In fact, at this point I’m positively glowing.

The radiation keeps killing cancer cells for a couple weeks after finishing treatment, so I’m hoping for more complete pain relief by then. If not, I’ll have to wait three months to try again.   

 There’s also the heavy breathing – and don’t go there– I’m only talking about shortness of breath. It takes a couple of minutes to stop breathing hard after taking ten steps from the bathroom to my bed at night, so something has to change. It began around when radiation started, but the radiologist doesn’t think radiation is the cause because they avoided 95% of my lungs and no other symptoms line up. Unless the insurance company has their way, I’ll have a CT tomorrow to see if a blood clot in my lungs (embolism) is the cause. We don’t have a Plan B yet.

 Let’s move on to the happy stuff! In recognition of World Lung Cancer Day this Sunday, August 1st, I will be giving away FREE digital copies of my book. I can remind you that lung cancer kills more people than the next three leading cancers (breast, ovarian, and prostate) combined, that 60-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers, and that lung cancer receives just one-fifth of the research funding of breast cancer, but there’s a better story to tell. Chris Draft, the most extraordinary lung cancer advocate the world has ever seen, met with our local survivor group in Portland last month for the #WhiteRibbonProject. He was passionate in saying that the best thing we can do is let people realize that people with lung cancer are just like them. So that’s what I want to do, and I’m asking for your help. Send me a picture of YOU, my cancer survivor friend, living your life of joy. Include friends, family, and pets if you like. I’ll post every one of them, so people can see the faces of lung cancer look just like they do. Just include your first name, cancer stage, and year diagnosed. Send your pics to dannthrives@gmail.com.

Back to the free book. Follow this link on August 1st and the book is yours: Second Wind: Thriving With Cancer  I hope the book speaks to you, regardless of cancer.

 Love,

Dann

Think Treatable Mutation

Friends and Family,

Things have evolved pretty quickly. First, the non-existent pain in my cancerous rib went from zero to sixty in the middle of a game of golf. I made it through the game, but pain has been a problem for the past week. I activated the referral that I delayed two months ago for radiation. The radiologist told me that the T-4 vertebrae is also involved, and apparently the cancer is pushing on a nerve. I’m now on steroids to shrink the swelling to take pressure off the nerve, and hoping it kicks in soon. I can’t tilt my head to look down at my phone or read a magazine, or bend over to reach into a shelf, and I can’t do a thing to help around the house.

This is bringing flashbacks to both Genevieve and me of when I was in chemo (both times) and she had to do everything. I’m appreciating just how much work is involved now that she has to do everything again, and she is appreciating how much of the work I’ve taken on around the house since I semi-retired last year. We each found a little gratitude. But that’s enough of this lesson, thank you. We’d both rather go back to our normal give and take as soon as possible.

I had my pre-radiation appointment, which is called a “simulation.” They had me lie on a bean bag on the CT table, then vacuumed the air out of the bean bag so that it retains my body shape. They set it aside for me, so that every time I come in I will lie down and be in almost exactly the same position. After they scanned me, the tech gave me five tiny tattoos. Along with the two from my first time having radiation eight years ago, I now have seven tats. Does that qualify me to be a Millennial, or is it just proof I’m from Oregon? There is one on each side of my rib cage, and three down my chest. They will use these to line up the lasers, so that when they zap me it will be in exactly the right spot each time. We’re hoping to hit close enough to the spine to kill the pain, but since a vertebrae is involved, and the spinal chord is in the middle of the vertebrae, there is a “less than one percent chance” of neurological damage. The radiologist considered that insignificant. Us, not so much. But the alternative of waiting until a new treatment kicks in and hopefully killing off the cancer in the right spot is even less desirable.

So far, this has not been as entertaining - or embarrassing - as when I had radiation to my hips. Click HERE to read that story. Meanwhile, between bulging ‘roid-fueled muscles and the tattoos, this cancer is apparently intent on turning me into a badass.

Representative image only. Actual results may vary. Considerably.

It took daily MyChart messages of increasing forcefulness for a week just to get the biopsies ordered, but yesterday (finally!) I had both the tissue and the liquid biopsies. Since the lymph nodes are close to the surface, they were able to guide the needle with ultrasound in real time rather than CT-guided. The lymph nodes were between my carotid artery and jugular vein. I tried to get Genevieve to take pictures, but once they had a needle near my neck she was looking the other way. I felt fortunate that I had to turn my neck toward the video screen, so I got to watch the whole procedure close-up. The radiologist was surprised I looked. Why would I not want to watch? It was fascinating, and gave me a lot of reassurance that they took good samples. Not only that, but this is one of those ultra-intense experiences in life. Why would I not want to be fully present and aware? I’m making the most of this.

Here’s as much as Genevieve would capture in a picture:

Once that was done, we went to the outpatient lab to get the liquid biopsy done. One of the perks of doing them in the same day was that the locations were a tram ride apart. You’ve got to stop and smell the roses along the way, right? Living life to the fullest! This was our view:

Now we’re at the point where the rubber meets the road. We should get liquid biopsy results back in about a week. Tissue samples may take 2-3 weeks. If you were thinking of sending thoughts and/or prayers our way, this would be a very good time. The outcome we are hoping for is a treatable mutation. Ideally one with a treatment that has already been approved. If not, we’re definitely open to a clinical trial.

Think treatable mutation.

Love,

Dann

The Party's Over

Friends and Family,

We knew it wouldn’t last forever, but we got a really good run out of it, didn’t we? I have been incredibly fortunate to be on Tagrisso for six years and nine months with no growth until recently.

We just got the latest CT scan results and learned that the cancer has grown a tiny bit again (1mm, the thickness of a credit card) in one of the spots in my lungs, a change so small that many oncologists consider that within the margin of error. Except this time lymph nodes near my abdomen and clavicle grew ten times that much, and the cancer in the rib in my back is now involving surrounding soft tissue and more of the bone. In short, it’s time to do something. It may be that I stay on the Tagrisso, since it still seems to be doing a lot of good, and add a second med.

The next step is to get a biopsy of the lymph nodes to see how the cancer has mutated, because if the cancer is growing again, there’s a new mutation. They will have me lie down in a CT scan machine, insert a needle, scan me again, adjust the needle and push it in a little more, then rinse and repeat until they hit the target and get the sample. I’m told I won’t even need sedation for this one, so it’s a pretty minor procedure.

I’ve also asked for a liquid biopsy, which is when they take a blood sample and look for the cancer’s DNA circulating in the bloodstream. That way we will know if there is any new mutation elsewhere that isn’t showing up in the lymph nodes. We want no surprises!

We’re hoping to get this done next week. It will take 2-3 more weeks to get the results. At that point we will see what approved medications or clinical trials are promising for my mutation(s). Meanwhile, one oncologist is urging me to get radiation treatment for the cancerous rib, while the other is suggesting I wait until I can’t manage the pain with Tylenol. The hope is that in time, the new medication will attack the cancer in my rib. Since I’ve been golfing and doing some pretty physical yardwork with no significant pain, I’m going to avoid radiation as long as possible.

Genevieve and I have made one other decision. We’re going to take it one step at a time, and not worry about what might or might not work until we get to that point. No need to worry about the future until we get there, is there?  

Love,

Dann

The Streak is Back On!

Friends and Family,

My six and a half year streak on Tagrisso is not over! Genevieve and I have never been more grateful for Dr. Patel, my UCSD oncologist, and for his expertise. If we had listened to my general oncologist, we would have abandoned ship and been ready to start a new one-size-fits-all treatment, plus get radiation. Instead, no changes are needed for now. We’re doing the happy dance!

When we met online today Dr. Patel looked at the same diagnostic images and the same radiologist report that made it seem like my entire body was being taken over by cancer, and said it looked encouraging to him. What is going on here???

The area of most concern to us was the lymph nodes. Dr. Patel thinks there is a strong chance that the lymph node “hot spots” are my body’s immune response to the COVID vaccine, and not cancer at all. This is important info for all women and all of my cancer friends to know: He sees a lot of inflamed lymph nodes in PET scans and mammograms after COVID vaccination, so he is giving anyone with inflamed lymph nodes a “Mulligan” (a do-over). If your oncologist wants to make treatment changes based on enlarged lymph nodes, it might be worth reconsidering. Dr. Patel expects it to take four to six months after vaccination for anyone’s body to adapt and the lymph nodes to settle down to normal.  

He noted that the tumors in my lungs hadn’t grown at all, even if they looked “hot.” In fact, one of my tumors had shrunk! I’m still scratching my head over that one. How does that happen, six and a half years after starting a treatment?

That only leaves the “hot spot” at the break in my rib. He didn’t address cause, though Genevieve and I wonder if inflammation in a healing bone is typical. He said we should avoid radiation unless I need it for pain relief, which I don’t.

This is a reminder about slowing things down and getting help from a lung cancer specialist. All doctors are not good at all things. If we had not gotten the second opinion, I would have given up on the most successful, easy-to-tolerate treatment options I could hope for long before I needed to, which likely would have shortened my life. 

I often tell people this, but all of the ultra-long-term survivors I know that are still in active treatment are strong advocates for themselves, and all have been in at least one clinical trial.

Thank you to every one of you who has reached out to Genevieve and me to offer your love and support. I am grateful beyond words. Doing the advocacy part is important, but without you I wouldn’t still be here. Love matters.

Genevieve and I are beside ourselves with excitement at this turn of events. My head is spinning and I’m exhausted. What a ride this has been.

Love,

Dann

Denial Will Only Take You So Far

Friends and Family,

Okay, so the party is over. I tried to convince myself that six years and four months after starting Tagrisso, maybe the first sign of “growth” in one of my tumors was actually not growth at all. I hoped it was a measurement error caused by using a different (new) CT scan machine this time, but the PET scan told me I’m not fooling anyone.

The scan revealed suspected progression in a few places. My lung spots are looking active for cancer activity, but they haven’t grown in two months, so we don’t have to run around like our hair is on fire looking for an emergency fix.

Strings of lymph nodes were also suspicious. The last trouble spot explains why my back has been sore for the past three months: I have a broken rib. Go figure. As a bonus, it looks like there is cancer at the break. We’re not sure if the cancer caused the break, or if the break opened the opportunity for the cancer to invade.

Now that we know what is happening, we don’t know what to do about it. Protocol dictated that we see my local oncologist first, since that’s where I got the scan. He wasn’t sure what to do next, so we will be seeing (via Zoom) Dr. Patel, my UCSD clinical trial oncologist, on Tuesday to discuss a plan. He’s very sharp, so we’re feeling good about meeting with him. Now at least we have a plan to make a plan.

My guess is that I will have some radiation and a biopsy, since the only way to pick the right treatment is to know what you are treating. My mantra for everyone with cancer is that when there is new growth, get re-tested, because the growth means that there is a new mutation.   

It always takes a few days after big news to process it before I can write about it. Genevieve and I finished our telemed appointment Friday confused and frustrated with the lack of answers. Now that we’ve had time to think about it, we’re in a better place. We’re seeing this as an opportunity to create the best path forward. As unsure as he was, this oncologist was ready to set me up with a one-size-fits-all treatment approach, but we are not passive. We’ll make the decision when we have all the facts. If we’re still not sure after talking with Dr. Patel, we’ll get another opinion. It’s one of the important lessons we have learned in the almost fifteen years we have been living with cancer: You have to be your own advocate.

Thank you again for your love and support. Today I’m telling you about the practical side of this experience, but what you do, and particularly Genevieve, gives me the passion to push for answers.

Love,

Dann

Latest CT Results: My Streak is Over

Friends and Family,

After six years and four months on Tagrisso, there has been a small amount of growth in one of the spots in my lungs. The change is small, but packs a wallop. This oblong tumor is now just a millimeter longer than four months ago.  For comparison, a millimeter is about the thickness of a credit card.

That small change isn’t even noticeable in my breathing, so the only issue is what it means for the future. The drug will still work to some degree for a while, but now there is an end in sight. Before this, Genevieve and I could dream about how much longer this good luck streak could hold out.

The plan from here is to get a PET scan in another 6-8 weeks. For this type of scan, radioactive sugar molecules will be injected into my veins. Those molecules congregate where there is cell hyperactivity … meaning where there is active cancer. They “light up” the cancer, so the radiologist can see if it has spread to other spots in my lungs, or other parts of the body.

The best case scenario would be if the scan shows that just the one spot, or even a few spots, are growing. If that happens, I’ll get radiation only to those spots, and we’ll kick the can down the road a little further.

If there are too many spots for radiation, I will be pressing my oncologist for a new biopsy. This is because the only way to know how the cancer is mutating, and what treatments may work, is with a new biopsy.

It’s slightly comforting to know that usually when the cancer starts growing again for people on Tagrisso, it grows slowly. This takes some of the panic out of figuring out what the next treatment will be. It also gives more time to look into clinical trials and get a second opinion if there isn’t a clear course of action after the biopsy.

I’ve been extremely fortunate to go more than five years longer than the average time on Tagrisso before having progression. The goal is always to buy more time, and make each treatment last as long as possible, so the next treatment will be developed by the time I need it. New lung cancer treatments are coming out so fast that I just need some luck and some time to keep outrunning the monster. So far, this has worked incredibly well. Here we are, almost fifteen years after I was first diagnosed. At that time, my life expectancy was months.  

This has been hard news for us to take, but not completely devastating. Each time cancer starts growing again, it’s like a mini-grief episode, combined with fear of what will happen next. That’s why it has taken me a week to write to you. I’ve needed time to process it. But I think I’m getting there. The word that keeps coming up for me these past few days has been “grateful.” I’ve had so much more time and quality of life than most with this diagnosis, and I’m not done yet.

So that’s my word for the day: Grateful.

Feel free to make it yours.

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

Free Book

Friends and Family,

My contribution to Lung Cancer Awareness Month is to give away FREE COPIES of my book Second Wind: Thriving With Cancer. The giveaway runs through Friday.

This book is for anyone living with cancer, either directly or through a loved one. It is full of hope, inspiration, and coping strategies for the extraordinary issues of survival and day-to-day living that are unique to people living with a life-threatening illness. It is based on my own experiences since I was first diagnosed in 2006.

Here is the link: https://amzn.to/36MhtEC

Love,

Dann

Post-CT Scan Crash!

Friends and Family,

I won’t bury the lead to this story: My latest scan results were again stable. It’s been six years since I started in the clinical trial for Tagrisso, a drug that has now been approved, and which normally is effective for thirteen months. This should be cause for over-the-moon celebration, shouldn’t it?

This time when Genevieve and I got the news, we couldn’t even muster a “whoopee.” It was like someone let the air out of us. We both walked around the house moody, and barely mentioned it again. This felt so wrong!

What about this whole “happy-cancer-survivor-who-is-grateful-for-everything” we are all supposed to buy into? It’s a great goal, but sometimes it just ain’t there.

 I have so many friends who would be popping the champagne corks and dancing in the streets if their scan results were stable, so why weren’t we?

I think the answer is an overdose... of STRESS. To paraphrase Shakespeare: How do I stress thee? Let me count the ways.

And so I did:

·         Political upheaval. There is more uncertainty, fear, and mistrust – many times over - than at any time in my lifetime. For comparison, I’m ancient enough to include the Vietnam War, and even the Cuban Missile Crisis .

·         There’s this thing called a pandemic. You may have heard about it.

·         Now that we’re thinking about what it will be like after the pandemic, we’re learning that it may take years to get back to “normal.” It’s probably going to be gradual.

·         Here in Portland, smoke from forest fires blew into the city and left us with the worst air quality in the world (no exaggeration – it was on airnow.gov) for more than a week. It was so thick we hermetically sealed ourselves into our house, and couldn’t see past our neighbors’ house due to smoke that looked like a dense fog.

·         Add all this to the “normal” scanxiety that drives our stress levels up to somewhere past... oh, let’s say Saturn, for about two weeks each time leading up to getting the results.

Together, these triggered a cocktail of stress hormones, including the two you hear most about, adrenaline and cortisol. Those hormones are useful in a fight-or-flight emergency, but when the stress is prolonged, these system superchargers drain your reserves. They suck the life out of you.

And just in time for Halloween!

So how do we get past this being drained business, and get back to finding the joy in life? Genevieve and I kept up our daily walks and yoga, and socializing with family and friends. We also took a trip to our place in the high desert in central Oregon, where the sun shines most of the time. Keeping up exercise, social connections, and structure in your day all help, but it still took time to get it all back.

Back to grateful! Back to celebrating good health! Back to appreciating everything that is going right in the world!

However.

We still have an election coming up in a few days. That is going to produce stress for EVERYONE, no matter what your political beliefs, for weeks. If your candidates and measures lose, it could be tough. If they win, you may still end up deflated. And if there is post-election upheaval, well, that’s going to be one more layer on the stress cake.

At least when you know it’s coming, you can take steps to make it a little easier. It doesn’t matter whether that stress is the next scan, or the next election. I plan on doing these to help in the coming week(s):

·         Brace for impact! If you expect to be happy but you’re not, it’s a big letdown, and easy to think there’s something wrong with you.  There isn’t.

·         Keep up your structure: It’s easy to skip your daily routines when you’re feeling stressed, but these are the very things that help you get through it.

·         Eat healthy: Who doesn’t want to resort to eating really tasty crap under stress? If it only didn’t make you feel worse after, it would be a winner.

·         Exercise! It’s easy to skip under stress, but it’s a stress antidote.

·         Get lots of sleep: NOBODY functions well without reserves.

·         Connect with the people you love and care about. ‘Nuff said.

·         Reduce your busy schedule until the worst of the stress has passed.

·         Be kind to yourself. For example, I won’t do everything on this list perfectly, but I plan on giving myself lots of credit for making my best effort. It’s part of loving yourself. I hope you can do the same.

This was a long post, considering it took two weeks to realize there was anything I wanted to say. I guess those are the times we need to dig the deepest.

                Love,

                Dann

P.S. – VOTE!!!

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

Frozen in Time

Friends and Family,

Frozen in time. Those are the words my oncologist used to describe my latest CT scan yesterday. As in, “You’re CT scan looks exactly like it did the last time. It’s as if it was frozen in time.” And while Genevieve and I couldn’t be happier getting the best news imaginable, the words struck me as off the mark.

It’s because although my scan may look frozen in time, I feel anything but that way. Over these past three months, while most people have been talking about being stuck in neutral while they stay at home, this feels like a time of real growth. Between YouTube yoga and hour-long hill-climbing walks with Genevieve every day, as well as YouTube workout videos every other day, I feel like we are both in the best shape we have ever been (relative to our age, of course!)

I’ve also been refining my smoothies to kick cancer in the keister (has a nice ring to it) even better. Getting projects done. Taking a writing workshop. Transitioning into semi-retirement. Does that sound like being “frozen in time?”

And then I realize that, while these growth-oriented changes may all be helping me to fight cancer, there is one critical part that has never changed since I was first diagnosed almost fourteen years ago. The number one reason I believe I am still alive is because of the constant love and support you all have given me, and which I am trying to give right back to you.

I hope that part stays “frozen in time.”

Love,

Dann

PS:  ONLY THREE MORE DAYS BEFORE THE GO2 Foundation Summer Jam Virtual '5K Your Way!' Help raise awareness and fight lung cancer by joining my virtual team and/or donating. Just CLICK HERE.

Virtually Awesome 5K Walk is Almost Here!

Friends and Family,

For the past many years my teammates and I have participated in the Lung Love Run/Walk, a benefit for what is now  called the GO2 Foundation Summer Jam Virtual '5K Your Way.' The 2020 event is only 10 days away! Because I am passionate about the cause, I am inviting you to join my team or donate. Just CLICK HERE.

The Go2 Foundation is involved in advocacy and support for lung cancer survivors. I have made a few trips to DC with this group lobbying Congress, such as this trip below with our friends Dawn and Greg:

On the event day, you can follow the activities on YouTube Live, walk on your own, do an alternative activity to walking, or even sit on the sofa.

As always, I am grateful for your support.

Love,

Dann

How to Cope with COVID Beyond Watching YouTube Cat Videos

Friends and Family,

Not everyone is handling social distancing in the same way, and it seems like we’re all getting extra-antsy right now. Finances are certainly a piece of it for most of us, but why are we so restless now, after two months of living this way?

Maybe it’s the spring weather. Maybe it’s cabin fever. Maybe we’re running out of new shows to watch on TV. And I don’t know about others with cancer, but Genevieve and I expect to remain in quarantine until there is a vaccine – roughly another 12-18 months. How could we do otherwise when between us, we check almost every high-risk box for COVID-19? While the chances of getting it may be low if we’re careful, the chances of having extreme health problems if we do is off the charts. Still, 12-18 months would be a long time to spend watching funny cat videos on YouTube.

Sorry - this is not a link. You’ll have to find your own funny cat videos.

If you’re handling this confinement with no problems, by all means ignore this. But if you’re wondering if there might be new things you want to try for however long you stay home, here are a few tips:

ADD A LITTLE STRUCTURE TO YOUR DAY: Having structure gives your days an anchor so it doesn’t feel like you’re drifting from one day into the next. For Genevieve and me, this means plopping down our mats and turning on a YouTube yoga video every morning. Every afternoon we go for an hour-long walk, rain or shine. Every other day I do a fitness video after yoga. Genevieve has a regular schedule for Zoom meetings for the different groups she belongs to (women’s group, astrology, investment club, coffee group and more... it’s a long list).

EXERCISE: Between the walks, the yoga, and the fitness videos, Genevieve and I both feel like we’re in better shape now than when we were going to the gym every day. I may not have Buns of Steel, but they might have gone from Jell-O to Silly Putty. And for people with cancer, I strongly believe that EXERCISE IS THE MOST UNDERRATED KEY TO LIVING LONGER.

GET YOUR SOCIAL CONTACT: Phone calls, texts, emails and video calls, of course. You may need to initiate contact more than you normally would. Not everyone has the same social needs, so adjust to suit yours. I wouldn’t do well having as much social contact as Genevieve, but I make sure to get as much as I need.

MAKE A CONTRIBUTION TO OTHERS: It feels good to get out of yourself, make a difference in someone else’s life, and get out of that “poor me” state of mind that can come with being stuck. Three different neighbors have offered to do our grocery shopping for us. Genevieve is making COVID cards for people in need, while I’m involved with several lung cancer projects. Genevieve’s sister Christine is making masks for first responders. You might want to reach out to your peeps that you think are more likely to become isolated. There are tons of things you can do if you take a moment to think about it. Try one option this week and see how it feels.

TAKE ON PROJECTS: It can feel good to have a goal in front of you, and to accomplish something where you get concrete results. I’ve been pulling ivy and blackberry bushes out of our nearly-unreachable backyard for weeks. I researched modems and routers, and bought one of each so we can stop getting a monthly rental charge for the one the cable company provides. I’ll be doing touch-up paint inside the house next. If/when I have time, I plan to sort my photos.

EAT HEALTHY: Processed food and alcohol sales are up since the pandemic hit, as people gravitate towards comfort. The irony is that your body feels crappy after eating most comfort food. On the other hand, fresh produce sales are up. What about at your house? Garlic, mushrooms, and cruciferous vegetables (broccoli, cauliflower, cabbage, kale etc.) are particularly good for fighting both the virus and cancer.

Think about trying a few of these ideas and see if maybe they make you feel a little more like this tough guy below.

Love,

Dann

PS: Here’s your first opportunity to make a contribution to others: Join me in the very first VIRTUAL Summer Jam 5K Your Way! You can join Live Lung and Prosper (my team), donate, or both. CLICK HERE TO JOIN OR DONATE.

My goal this year is to have people from AS MANY STATES AS POSSIBLE join my team! I’m on the planning committee for this event, and I advocated to focus more on involvement than donations, since this is a tough year for so many people financially. As a result, there is a contest for whose team has people from the most states.

If you join my team, you’ll have the option of walking on your own, participating in one of the real-time exercise videos in lieu of walking (hence the “5K Your Way”), or sitting on your sofa, And of course, since your donations go to lung cancer research and advocacy, I would greatly appreciate any donation you choose to make. Again, if money is scarce this year, that’s perfectly fine.

~ Dann

Best Info I've Seen on COVID-19 Whether you have Cancer or Not

Friends and Family,

While we’re surrounded by news about the COVID-19 virus, it’s been hard to find one good summary. After some searching, these two that are the best summaries that I have seen.

This one is specific to lung cancer, though it covers any kind of cancer very well. It’s a brief FAQ from LUNGevity:

Click HERE for LUNGevity FAQs

I heard about the video below from a doctor yesterday, and then by coincidence my sister-in-law Jean sent it to me an hour later. For me, it took away much of the fear and replaced it with easy and practical steps.

Dr. David Price of Weill Cornell Medical Center in New York City shares information in a Mar. 22 Zoom call with family and friends on empowering and protecting families during the COVID-19 pandemic. Here it is:

Click HERE for Dr. David Price video

Use them in good health!

Thank you for all who have been asking how we’re doing. We are sheltering in place and avoiding all social contact. Our neighbors have generously offered to do our grocery shopping for us, and for items we can’t get from those trips, we order online and do a grocery store pick-up. We’re doing daily yoga videos on YouTube, and I’m doing an exercise video every other day. We’re taking daily long walks in our neighborhood, where everyone has been great about taking turns stepping out into the street or crossing the street to maintain distance.

I feel grateful that it is all working out so smoothly for us, since I know that isn’t the case for everyone. I hope it is going well for you.

Love,

Dann

Making Your Own Hand Sanitizer

Worried about COVID-19 but can't find hand sanitizer? Here's an easy recipe with ingredients that you might already have:

Use it in good health!

Love,

Dann

Scan Results and the One Question Nobody Asks

Friends and Family,

We have fantastic news to share! Genevieve and I met with my oncologist to get my scan results, and once again, there has been no change! This may sound predictable to you, but we are stunned every time it happens. We are extraordinarily grateful! If I could do a “Stayin Alive” happy dance, this is what it would look like:

Maybe I better practice a bit first.

Here is something that strikes me as odd. Sometimes I comment in a lung cancer Facebook group about one topic or another. If I mention how long I have been on Tagrisso (five and a half years, while the average is thirteen months), or I say that I am a Stage IV survivor for over thirteen years, people want to know what I have been doing to stay alive. What still surprises me is that there is only one question that they ask! Here it is:

What is my diet, and what supplements do I take?

OK, that’s two questions, but they’re really the same topic, aren’t they? The question is, what am I taking?

This is what is crazy to me: If your life depends on it, wouldn’t you want to know EVERYTHING that might help?

Perhaps they don’t ask, because it never crosses their minds that there are other things. So to help them out, I’m going to ask MYSELF these questions. Here goes:

Dann: Say Dann, why do you think you’re still alive?

DANN: I’m glad you asked, Dann! The answer is dumb luck! Lots of it!

Dann: But surely there’s more to it!

DANN: Right you are, you charming devil! There’s a BUNCH of things! Here’s a partial list of what I think helps:

• Genevieve (Love!)

• Loving relationships of all kinds

• Support from all of my family and friends

• Removing the “cancers” from your life

• Lots of sleep

• More dumb luck

• Exercise!!!

• Having a purpose and meaning in your life

• Finding time to de-stress (meditation, exercise, a place of calm)

• Diet

• Dumb luck

• Supplements and re-purposed drugs for other conditions that help fight cancer

• Spirituality

• Being a strong advocate for yourself

• Attitude

• Loving myself

• Dumb luck

Dann: That’s a great list, Dann! Where can I read more about this?

DANN: Excellent question, Dann! There’s a great book I can highly recommend that covers all this and more! It’s called Second Wind: Thriving with Cancer. There’s a link to the book right here on this blog page. It’s well worth a look!

Dann: Anything else you’d like to add while we’re on the topic?

DANN: Once again, I’m glad you asked! I think excercise is one of the most incredible forces of nature for beating cancer! That’s why I go to the gym about 28 days a month. Get your heart rate up for at least 15-20 minutes and build up over time. Everything else is a bonus. it’s a good idea to talk with your doc first.

~

All playfulness aside, thank you all for your continued support. I remain eternally grateful.

Love,

Dann

What's in YOUR Medicine Cabinet?

Friends and Family,

Every now and then something happens, and it’s like a slap in the face. This time, I can thank my medicine cabinet.

I’ve made it a habit of using those little pill minder weekly containers to keep my pills straight, with a separate container for each time of day. With the number of pills I take, this improves the chances I won’t be walking into walls or making surprise trips to the ER. While I knew there were a lot of pills, I’ll tell you about my wake-up call.

Genevieve and I recently had a trip that was just over two weeks. That meant filling the pill containers for three weeks. Using an Excel spreadsheet, a slide rule and an abacus, and after making sure I was well nourished, I set about filling these containers. When I was done, this is what I had:

This was stunning enough for me, even though I’m the one taking them. But it really hit home when I was talking with Brett and Greg, a couple of friends at work. One was saying that a relative had to start taking two pills a day instead of one. To put that into perspective, I showed them my picture.

Have you ever HEARD a jaw drop? I’m still not sure if I did, but this is the reaction I saw:

Both my own shock and theirs had me questioning what I’m doing. It was enough to make me want to do the math. Thirty-two pills a day! Seventeen different kinds of meds! Am I NUTS?

I had to take a closer look. I was pretty certain that my examination would either: 1)  prove that I am insane; or 2) prove that I don’t realize that I am insane.

Here is what I found:

• Four of the meds are completely unrelated to cancer, including baby aspirin, fish oil and a multivitamin.

• Two are for damage caused by the cancer.

• Three are to increase my red blood cells, which are low because of a cancer med.

• Two are to boost my immune system, which is puny because of the cancer.

• Four are non-cancer meds that I take because there is some research for each of them that says that they might help fight cancer.

• One is for side effects of another med.

• And out of all of those pills, exactly one is designated as a cancer med.

After completing this review, it looks like I’ve chosen Door Number Two, which means I’m still delusional enough to believe I’m sane. While the number of pills seems ridiculous, there’s nothing on the list that I believe I should stop taking. In fact, I’m pretty sure that once I post this, a friend or five with cancer is going to suggest something else I should take.

The point is that those of us with an uncertain future will try anything remotely plausible to help us stay alive. I can understand now how those snake oil salesmen from the frontier days were so successful. If there isn’t a cure, is there something that MIGHT help? A maybe is better than a no, isn’t it?

Here’s a good example. There is a growing number of lung cancer survivors that are fighting cancer by taking dog de-wormer. By sharing this with you I know I’m going to get two reactions. Those without cancer are going to be thinking, “That’s a good one Dann! Haha! A little far-fetched, don’t you think?” (So sorry for the pun 😉.)

Meanwhile, those with cancer if they don’t already know about it, are going to be thinking, “How does it work? Has it worked with lung cancer? How much do I take?”

I will admit that I have done my homework to see if there is any research to support dog de-wormer. So far, it’s only case studies, so I’m not going there. However, I may change my mind if better research comes out.

I do have a personal “bottom” line, however. I always consult with my oncologist before taking anything, and I always consider the possibility that something could do more harm than good.

So what’s the moral of the story? For me, all this tells me that at least until we have a complete cure for lung cancer, we’re all going to the dogs, sooner or later.

So where would you draw the line?

Love,

Dann

Lung Cancer Research Funding

Friends and Family,

It’s Lung Cancer Awareness Month, so I wanted to highlight the eye-popping discrepancy in how our federal research dollars are allocated for lung cancer compared to other cancers. Why does this imbalance continue year after year?

I made this video a year ago, and used statistics gathered from the Lung Cancer Alliance website, which is now the Go2 Foundation.

Love,

Dann