New Scan Results: My World has Flipped

Friends and Family,

Genevieve and I flew to San Diego for the day yesterday to meet with my oncologist, and to get the results of my latest CT scan. This is roughly our twenty-fifth time around this block, and this one was the weirdest of them all.

It started a few days before the trip. Several people knew I was flying to see my oncologist. Each one told me to have a safe trip. Have a safe trip??? I’m meeting with my oncologist to find out if my cancer has grown, and possibly how long I might live, and they’re worried about the plane ride???

Next came the CT scan. Since I outlasted my clinical trial, I no longer have to have the scans with contrast. That means I no longer have to have radioactive dye flushing through my bloodstream when I get tested. Each time that dye shot through my veins, it would instantly cause the part of the body it reached next to turn hot, like a geyser’s steam with no release valve. Oddly, the first place it always zeroed in on was my groin. (Better blood supply?) From there it gushed throughout each different part of my body, having the same effect, eventually leaving a metallic taste in my mouth. It felt like something verrrry important must be happening.

That sense of something monstrously important happening is gone now. All I do is lie down on the table and follow the instructions that have been burned into my psyche by repetition: “Breathe deep. Hold your breath.” This lasts for about fifteen seconds, and gets repeated about three times. Now it feels like nothing is happening, and this scan is no big deal.

Things have even changed at home. Genevieve looked at me and said, “I’m not worried this time. Are you?” I told her I wasn’t worried based on any symptoms, but that I was still kind of anxious because there is so much at stake. She admitted that part was true for her, too.

Even the flight down has gotten easier. The flight leaves later in the morning now, which means we get most of a night’s sleep before getting up to go to the airport, instead of getting half a night’s sleep. Where’s the sacrifice in that?

I called the doctor’s office on our way from the airport to let him know our plane had been delayed, and we would be a half-hour late. When we arrived, the nurse told us, “Dr. Patel said your being late was no biggie, because you would be easy.” And this was before he saw my scan results.

So even my doctor thinks this is no big deal anymore?

And then he popped in the room and told us the results of the scan:  NO CHANGE! WOOHOO!

Except it wasn’t “woohoo.” It was more like “whew.”

And that’s the weird part.

We’ve gone from a time when getting the latest “verdict” was the biggest possible thing in our world, to getting the news and not even being able to muster anything more than relief.

It’s sad in a way, because there is nothing more exhilarating than finding out your life has been extended. Until it happens with such regularity that it becomes the new normal.

I try to keep this in perspective. Just lately, lung cancer friends of mine from all over the country that have been stable for years, have had progression of their cancer. Several of them are going through some pretty harsh chemo for the first time, and the span of time that they can trust that they will still be alive is more immediate. Matt, a friend that has been important to me for many years, passed away a few months ago. I have constant reminders of how fortunate I am, and yet getting the best possible news results only in a big exhale.

I’ve had to question myself. Have I become ungrateful? Nope, that’s not it.

Have I forgotten what it’s like to find out my cancer is growing again? Nah, that’s way too easy to conjure up again.

So what is it?

Let’s look at an example: If you were to bungee jump off a cliff for the first time, you would probably see your life flash before your eyes, and your heart would pound out of your chest. Not much else would go on in your brain, since the big thing you’re thinking about is if you’re going to die.

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So what would happen if you bungee jumped 25 times?

As more and more jumps went by, you would probably start thinking about how comfortable the harness was, and what you thought of the guide, and what the weather was like this time. The fear of death isn’t so great anymore.

What happens that makes this so different with repetition?

This reminds me of a study I read about in college. The subjects were given visors to wear during every waking hour. These visors turned their world upside down. At first it was hard to even walk, but after a while the subjects got the hang of it. However, after a couple of weeks, something surprising happened. These subjects’ visual world flipped. Now, everything looked right side up again while they were wearing the visors. When they took the visors off, the world looked upside down.

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So what’s the takeaway?

Given enough time, our brains adapt to any new “normal” we can throw at it. If your life is constantly threatened, getting scan results stops seeming so threatening.  

I’m a little sad that I don’t get that same exhilaration anymore when we get scan results, but I’ve decided I’m OK with that.

Why?

Because I may be setting records for length of time being on Tagrisso, but this also means that I have been doing so well, for so long, that my world has “flipped” right-side up again. This is the new normal.

I’ll take that any day. Wouldn’t you?

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

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

Love,

Dann

Thriving With Cancer Minute: Love

Friends and Family,

Not everybody feels like sitting down to read a book, especially in the holiday season. Here’s the next best thing: I’m starting a series of very short (roughly one minute) videos based on my book. I call the series your Thriving With Cancer Minute. This week’s video is about LOVE. Here’s the link:

https://youtu.be/ij3VZPPPpe4

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Love,

Dann

Politics can get Very Uncomfortable

Friends and Family,

 Sometimes, you have to take a stand. It happened for me when I learned that the Oregon Health Plan (the states’ affordable care/Medicaid program) was holding a public hearing to consider banning payment for cancer genetic testing. How could they do such a thing? To deny testing meant to deny access to any targeted therapies. Why should those with limited means be limited to the same treatment options that have been around for decades? This is not acceptable!

 I coordinated with LUNGevity and Caring Ambassadors, skipped work last Thursday, and showed up to testify. I’m so very glad I did.

 The review committee started with their own discussion, where it became clear that the chairman thought such testing was a waste of resources. He also clarified that this proposal would ban payment for most, but not all, genetic testing. Representatives from drug companies, testing companies, advocacy groups, and health care systems all testified in strong support of testing. The committee chair was not impressed.  

When all the professionals were done talking, I was the final speaker. First, I read the testimony of Jacque, a 32 year-old survivor friend who couldn’t be there. I could barely hold it together – actually, I didn’t – while I read of her six-year battle, and how she wouldn’t be alive without the genetic testing that has opened the door for her to have had two separate treatments with targeted therapies.

 Next, I shared a brief version of my own twelve-year story. I shared the highs, the lows, the fears… and a lot of my own tears. I told them that, without genetic testing and then targeted therapy, they would have been talking to my widow. I am alive today because of two separate targeted therapies, which were only available after genetic testing.

 Three of the four committee members were clearly moved, but the committee chair wouldn’t (couldn’t?) make eye contact with me. One member had flash cards to warn speakers when their time was running out, but he never lifted a card, even after I continued telling my story after my time had expired.

 When I finished, there was an awkward silence. The chair didn’t say another negative word about testing. The committee fumbled around for a bit, unwilling to vote to ban payment. Finally, they passed a resolution to table the topic until they had more data. I’m calling this a victory! It would have been next to impossible to overturn a rule once it is in place.

 When they were finished with the vote, all the people who had spoken, and a few others who hadn’t, gathered outside the committee room. Most of them came up to me, one by one, to tell me that they thought that the ban would have passed if I hadn’t shared Jacque’s and my stories. Science is one thing: putting a human face on the discussion was entirely another matter.

 I have seen the same responsiveness when lobbying in Washington, DC. Our elected representatives are far more receptive when you share your story than if you only offer statistics.

 If your passion is lung cancer, I hope you share your story with anyone who will listen. And if your passion is some other cause, share the personal side of that, too. This has been a great reminder for me that  in the end, we’re all human, and humanity is what we respond to. That is why I continue to share so much of myself with you, no matter how uncomfortable it is. It still brings us closer together.

 Hoping your life is uncomfortable… in a good way.

 Love,

 Dann

Kicking the Bucket (List) and a Big Milestone

Dear Friends and Family,

It doesn’t get much better than this! Everything I have to tell you is more than I could hope for!

Let’s keep priorities straight and start with the biggie. Genevieve and I went to San Diego last week, and got the results of my latest CT scan. My cancer is still stable! It’s now been on Tagrisso for an incredible 47 months! While Genevieve and I get more and more excited every time, my oncologist and the clinical trial coordinator are looking increasingly bored by my visits. I count that as a major victory. If there were interesting things to see after this much time, it wouldn’t be the kind that we are looking for. I’m hoping that I’ll win the race to see whether my oncologist will die of boredom before I die of old age.


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Next, my big milestone. You probably already know how important I believe that exercise is to staying healthy. Along with going to the gym six days a week, I climb the seven flights of stairs to my office twice a day. When my company moved to the top floor of our building over seven years ago, one of the guys started the Flight Club as a motivator. In this club, we track how many (flights of) stairs we climb. I am proud to say that since that time, I have now climbed more than a third of a million steps. Yes, more than 333,333 steps! (I’m so excited that I had to repeat it.) 

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I know a large number of people from all over the world with lung cancer. Some I only know from online forums, but I have gotten to know quite a few in person between conferences, lobbying, and a local support group. Out of all the people that I know, there isn’t a single one that seems to consider exercise as important to beating cancer as I do.

So why do I consider exercise so important? Here are my top reasons:

·         It’s almost impossible not to feel better. Maybe if you haven’t exercised in years, and you overdo it the first time out, it won’t feel great. But regular exercise helps your mood and your general sense of well-being.

·         It’s not complicated. There aren’t certain things that you need to do. You just need to do SOMETHING that gets your heart going for at least 15-20 minutes, as often as you can.

·         It bolsters your immune system.

·         Some research even indicates that exercise may make chemo more effective.

·         You will recover from any illness, surgery, or treatment a lot faster if you are in shape, and most likely even more so if you exercise appropriately during your recovery.

·         I believe that a lot of people with cancer die because they aren’t in good enough shape to handle the next treatment. Exercise puts you in a better position to fight the next battle.

·         While having cancer can feel very out-of-control, this is something that you have control over. For control freaks like me, this is a biggie!

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Did you notice that most of what I said above applies, whether you have cancer or not? And if you are already exercising and you THEN you get a disease or need surgery, you’re in a much better position to handle it. So what do you think? Is this a good time to get started?

The next thing I wanted to share with you is my Bucket List. For the past several years, I have had just one item on my bucket list. I decided that the next car I would buy would be all-electric. Two and a half years ago, I went from what was more of a wish list, to taking an action step. On the first day of a Hawaiian vacation, Genevieve and I got up at 4:30 in the morning to drive across Oahu to get at the front of the Tesla Model 3 waiting list. At the time, Tesla hadn’t even released a picture of the car. Still, we plunked down our deposit and waited. And, of course, saved our pennies. Three weeks ago, we got our car! I’m still like a ten year-old at Christmas! It’s beautiful, it’s powerful, and it has so much technology that I’m still learning about it. It’s the best toy I’ve ever had!

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But why was this car so important to me? I’m not even a car guy. While most of the commercial real estate brokers in the city have BMW’s, luxury SUV’s, or similar, I have been driving a Prius for 13 years. A bucket list with a car on it, and nothing else, hardly makes sense, does it?

I’ll explain. It’s all about values for me. Electric cars are far more fuel-efficient (rated as equivalent to 120 miles per gallon), and burn cleaner fuel, which will help reduce pollution. This is the first electric car with mass-market pricing and appeal, with a waiting list of 400,000. I feel like we are doing our part for the environment, and leading the way for others to do the same. Indirectly, this is going to make it easier on people’s lungs, among other things.

So that’s my news for now. Everything good!

Hoping everything is going well for you, too.

Love,

Dann

The 5K Walk that Took Us 2,400 Miles Away

Friends and Family,

A month ago, we had the fourth annual Lung Love Run/Walk in Portland. Our group did us proud on this beautiful day, and we were one of the top fund-raising teams. For all of you who donated to help lobby for lung cancer research, thank you! This year’s event raised $50,000, the most ever! Here’s this year’s amazing group, Team Live Lung and Prosper:

Biggie, Jai Dev, Rebbecca, Dann, Genevieve, Jaidy, Steve, Violet, and Cody*

Biggie, Jai Dev, Rebbecca, Dann, Genevieve, Jaidy, Steve, Violet, and Cody*

Coincidentally, the funds raised went to almost immediate use when we had the National Advocacy Summit a couple weeks ago. 120 survivors, caregivers, and health care professionals “stormed the hill” to lobby Congress. Our friends Dawn and Greg were with us, representing the State of Washington.

Dann, Genevieve, Dawn, Greg

Dann, Genevieve, Dawn, Greg

Before we got started, Rep. Rick Nolan from Minnesota, who has been a co-chair of the Lung Cancer Caucus for many years, kicked off the day of lobbying with a sobering thought. “If you don’t show up in Washington, they think one of two things. One: You don’t exist. Far worse is number two: They know you exist, but think you don’t care.”

Rep. Rick Nolan

Rep. Rick Nolan

Yowza. This is why we need to keep showing up in Washington. They have to know how critical this is.

One of my favorite parts was meeting with the congresswoman from our district, Rep. Suzanne Bonamici. This is the third time I have lobbied in DC (second time for Genevieve), and each time both she and her health care policy staff person have met with us. Each time she has been gracious and welcoming, asking if there is anything else that she can do. You can understand why she is more engaged than most: Her mother, at almost ninety years old, and is a lung cancer survivor. But there’s more. Last fall,  her stepfather was diagnosed with lung cancer, and died just months later. You can read more about her story HERE.

On our last trip, I gave her one of my books to give to her mother. This time, she thanked me for the book, and told me that her mother is reading it. This time I asked Rep. Bonamici if she would consider a leadership role in the Lung Cancer Caucus, since both co-chairs are resigning after this year. Just a couple of minutes after asking her, Laurie Ambrose-Felton, the Lung Cancer Alliance CEO and President, crashed our meeting and asked her the same thing!

Greg, Dawn, Genevieve, Dann, Rep. Bonamici

Greg, Dawn, Genevieve, Dann, Rep. Bonamici

Other than Rep. Bonamici, we met with staff with health care portfolios for our Oregon senators and congressmen/women. You may be surprised to learn that Washington is being run not just by the elder statesmen/women that we elect, but mostly by energetic twenty-somethings that do all the research for them. It’s a little scary, until you see how smart and committed they are. Some wouldn’t let us take their pictures because “I’m not the face of this office,” but all were extraordinarily receptive and compassionate. Here are the ones we could snap:

Alexa Damis-Wulff of Sen. Jeff Merkley's office with Dann and Genevieve

Alexa Damis-Wulff of Sen. Jeff Merkley's office with Dann and Genevieve

Rina Wulfing showing us the great view from Rep. Peter DeFazio's office! 

Rina Wulfing showing us the great view from Rep. Peter DeFazio's office! 

Nolan Ahern: Every day is Bring Your Dog to Work Day in Rep. Greg Walden's Office!

Nolan Ahern: Every day is Bring Your Dog to Work Day in Rep. Greg Walden's Office!

While having direct impact on our national government is heady stuff, there were also a few things I wasn’t thrilled about. First, we weren’t asking for enough! Asking for $6 million is NOTHING in the national budget! That is less than two pennies for every American, and yet 160,000 people a year die of lung cancer! Twice as many women die from lung cancer as breast cancer. Lung cancer kills more people than the next three leading cancers COMBINED. People are up in arms about the Opiate Epidemic, yet two and a half times as many people die every year from lung cancer. Why is lung cancer not considered an epidemic? Why are we asking so little, when the need is so great?

I’m also not happy that LCA doesn’t ask survivors what LCA’s agenda should be. While they claim to represent survivors, they don’t ask us what we think they should be doing. The short answer: MORE.

Finally, it’s not easy to make this trip for many people, and not just those with health challenges. LCA covered half of my flight, none of Genevieve’s, and only two of the three nights at the hotel. Most survivors have extraordinary health care expenses, and almost all have had to curtail work or stop working all together. LCA is asking people with financial hardships to foot their own bill. It’s no wonder the Western US was drastically underrepresented compared to the states within driving distance.

While I strongly believe in the process of getting involved with our national leaders, I’ll have to think a bit longer about whether I want to continue working with this group that is having far less impact than I think they should have.

The next Summit will be next March, right after a new Congress is sworn in. I’ll keep you posted about whether I'll be attending. If you have any thoughts about this, please share them with me.

Love,

Dann

Not That I'm Trying to Milk This Topic, But My Scan Results are In

Friends and Family,

It’s another beautiful day to be alive!

Genevieve and I went to San Diego yesterday to meet with my oncologist, and get the latest CT scan results. I had new, contradictory reasons to both excitedly hope for some shrinkage of the cancer, and to fear that it would start growing again.

After announcing two weeks ago that I had eliminated dairy from my diet, based on cancer research, a friend (Laura Greco, whom I wrote about HERE) sent me a link to a research article that shows that casein, the major protein in milk, suppresses lung cancer tumor growth. This left me completely confused. Now I had contradictory evidence that drinking milk would either stop any tumors from growing – or maybe even shrink them – or it could be feeding the cancer.  

I immediately emailed my oncologist, who emailed back that “it’s probably fine to continue drinking milk.”

WHAT? I’m betting my life on this decision, and I get a weak answer like this? It sounded like he didn’t want to bother looking at the article. What do you do with THAT response, when your life may depend on it?

Without any real answers, I decided that I should start drinking milk again, since what I have been doing has been working for me for the past twelve years (YEAH!). Of course, THEN I worried that maybe the cancer might have started growing again, since I had been off milk for a month.

At the same time, I was excited to see if being off milk for a month might have caused the cancer to SHRINK.

Finally, our San Diego day came, and we got the big results. Drumroll please……

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No change! The cancer is still not growing!

Now that I had my oncologist in person, I pressed him much harder. He said that he had just been in meetings with other oncologists about this very topic, and the consensus was… that there is no consensus. “There is a lot of information out there, but a lot of it doesn’t rise to a scientific standard. The “signal to noise ratio’ is out of whack.”

In short, there’s too much wheat, and not enough chaff, to know what’s scientifically true. I don’t know if that’s true, but that’s what he believes. So what do I do now???

I can’t draw any conclusions from my own one-month experiment, so until I get a more definitive answer, I’m not going to change what is working. Hello, mochas and ice cream! It’s great to see you again!

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I’m going to put this question out to my online lung cancer groups, and see if anyone else has a more solid base for decision-making. Passions run deep on this issue, so my suspicion is that it will be a hot debate, which will produce a lot of heat, but very little light. 

I’ll keep you posted. Meanwhile, I hope you are making the most of every moment you have on this earth. It’s a gift worth treasuring.

Love,

Dann

NOTE: It's not too late to join the Lung Love Run/Walk! It's coming up this Saturday, June 23rd at Laurelhurst Park in Portland. We are raising awareness, and funding for lung cancer research.

Click here to join my team, Live Lung and Prosper.

I See Grief Counseling in my Future

Friends and Family,

One advantage to being a long-term survivor besides the obvious – I’m alive – is that it gives me more time to find new ways to help me stay alive even longer. I stumbled on this one when I was getting ready to start writing my next book. The plan was to talk with as many long-term survivors as I could find, and see if there were common factors in what they were doing to stay alive. I thought that if I coupled that with all the research I could find on the subject, it would be something that every survivor would want to read.

It turns out the book is already written! It’s called Radical Remission. It covers the nine factors that almost every long term survivor has in common. The first chapter is about diet. I have already made some pretty radical changes to my diet by going vegetarian even before I had cancer, reducing sugar and processed foods, and increasing fruits, vegetables and whole grains. But there was one more piece of my diet I wasn’t prepared to give up. What could possibly convince me to give up dairy?

It turns out that there is some older research that shows that in both a petri dish and in lab rats, feeding them a specific protein in milk can make cancer cells grow. In fact, in the rats, they could turn a rat’s cancer on or off by either feeding it this protein, or denying it the protein.

That got my attention. Sitting at an outdoor café table at a Starbucks and drinking my mocha, I started squirming in my seat. I was thinking about giving up anything that has this protein, called casein, in it. I started wondering what I was going to do for breakfast. Would I have to give up my morning bowl of cereal, and my protein shake?

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I’m reading about the potential cancer-feeding ingredient in milk… while drinking a mocha. It wasn’t going down so smoothly any more.

As I packed up and headed to my car with the cup still in my hand, I started thinking about the cup of ice cream that I eat most nights before bed. NOW we’re talking about a serious loss. I may need grief counseling after this.

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By the time I got back to my house, I was ruminating about that tasty cheese still sitting in the refrigerator. As I threw away my mocha cup under the kitchen sink, I was brooding about the gaping hole this was going to create in my diet.

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This all started about three weeks ago. There have been a few bumps along the way, like when I forgot that quiche is made mostly of milk and cheese, until I was halfway through eating it. (Yes, I finished it!) Then I tried my favorite salad bar near my office, only this time with just  a little cheese and something other than blue cheese dressing. By the next time I came back, I was off cheese altogether.

I had to keep reminding myself of how much this could mean to me. Could this change reverse my cancer? At the very least, could it mean that I could stay on the same treatment for even longer than I would otherwise, without any cancer growth? Maybe I would feel the loss, but I would need to find enough advantages to avoid needing grief counseling.

Three weeks out, I may be imagining it, but it feels like I’m breathing a little easier. I may also be imagining that I have a little more energy in the evenings. I’m kind-of-almost-eager to get my next CT scan to see if there is any shrinkage of the cancer, while also checking to see if my cholesterol is going down.

I have always thought that vegans may be healthy, but they would probably die of boredom. This is a challenge for me, since I have zero creativity with food. Fortunately for me, Genevieve didn’t skip a beat.

What an amazing woman! I don’t know if there has ever been another cancer survivor who has had the kind of support that I have had from Genevieve. Not a word of complaint. She just cooked up something that didn’t have any dairy in it. I bought almond milk to put in my cereal and protein shakes (the protein powder has whey protein, but no casein), and we moved on. We had a few meal-planning discussions, and within a few days we made a trip to Powell’s Books to get a few vegan cookbooks.

I can’t say that this is going to be easy, and I’m not going to be perfect. For instance, I’m not going to give up baked goods because there is some butter or milk in them. But that will be a trace amount of dairy compared to a gallon of milk and at least a half-gallon of ice cream every week, which add up to 52 gallons of milk and 26 gallons of ice cream a year. Now, if my CT scan shows that the cancer is shrinking, I would be willing to get that radical.

In the meantime, if you see me walking around looking lustfully at somebody’s hot mocha or Frappuccino, try to cut me a little slack. I’m still in mourning.

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Love,

Dann

NOTE: The Lung Love Run/Walk coming up on Saturday, June 23rd at Laurelhurst Park in Portland. We are raising awareness, and funding for lung cancer research.

Click here to join my team, Live Lung and Prosper.

If you would like to donate, click here.

And, even better, if you would like to form your own team, click here.