Lung Cancer's Other Silent Killer

Friends and Family,

I volunteered to participate in a research project to find out what works and what doesn’t with clinical trials. While I normally focus on how Genevieve and I are facing our challenges through this eventful cancer journey, these clinical trial questions lit a fire under me about an area that almost never gets talked about. It’s the cost of treatment, even in a “free” clinical trial, where the drug itself is free. It’s time to make some noise, because this impacts almost every one of us.

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Through my own trial I’ve learned about how costs of care during a trial get distributed. While the trial sponsor covers the cost of expenses that are specific to the trial, insurance companies pay for any treatment that is considered Standard of Care. But what is Standard of Care? It doesn’t seem to me that it would be Standard of Care to get a CT scan every six weeks, or have an echocardiogram, which I had never had before. Regardless, my insurance company footed the bill. Not all of it, of course. I have a co-pay. In the past five years of trial participation, these co-pays have totaled over $25,000. While medical providers will work with people based on ability to pay, most end up on payment plans that will extend beyond their lifetime.

And then there is the cost of travel to the trial. My trial is in San Diego, a thousand miles from my Portland home. Fortunately, travel schedules line up so that we can fly out at 6:30 AM, and return on a 6:30 PM flight. It was a very tight squeeze to get all the testing done in one day, until I proposed that I get my CT scans in Portland, before coming to San Diego. We are fortunate that this has worked, or we would have had to add hotel expenses for the last 38 flights. As it is, air fare, ground transportation, parking, and meals have totaled over $22,000. Imagine if I had to travel further from home, like two of my friends who live nearby in Vancouver, Washington, who were both in a trial at MD Anderson in Texas. Each trip required a day to get there, one to three days at the trial center, and a day to fly home. I imagine that their total cost was many times what Genevieve and I have paid.

By the way, I advocated to have my travel expenses paid for by the trial (the clinic), my insurance company, and the trial sponsor (drug company), and none would cover any of the costs.

Combined, we have spent almost $10,000 per year to participate in a “free” clinical trial. We are extremely fortunate that we are able to afford these expenses. If not, I would no longer be alive.

To put this in perspective, there was a recent USA Today article about a survey that showed that 40% of Americans couldn’t afford to cover a $400 unexpected expense. How would a cancer survivor, who most often has had to unexpectedly stop working due to their health, pay $10,000 per year?

Ignoring the clinical trial for a moment, the cost of cancer treatment is an extraordinary financial burden, even with insurance.

Last Summer, Genevieve and I went to the LUNGevity HOPE Summit. (This is an awe-inspiring event for any survivor or caregiver, by the way. Learn more HERE.) During the Summit, I led some small-group sessions discussing the biggest non-health challenges to dealing with cancer. Finances were the number one concern, and by a wide margin. Several had declared bankruptcy, or were close to it, including a friend of mine who had never talked about it.

In short, we have another silent killer on the loose besides lung cancer – one that even people with lung cancer, who are used to dealing with stigma every day, won’t even say out loud. It’s the cost of treatment. And the cost of travel to get to treatment. And the lost wages due to the illness. I have no doubt that there are people who refuse treatment, simply because they do not want to place that financial burden on their families. This breaks my heart.

While we need to solve this problem, I couldn’t very well gnash my teeth and whine about this without being accountable in some way. My response was to search the web for every form of financial assistance for people with lung cancer. As a result, I have added a new page to my blog. Click on the tab that says “Financial Resources” to see what is available.

And now it’s your turn. Make some noise about the high cost of treatment for cancer survivors, any way you can. If we are successful, more people will live longer, and have more to live for.

Love,

Dann

From Fear Factor to the Heimlich Maneuver to My 13th Cancerversary, this Trip Had Everything

Friends and Family,

If you want to add more drama to your life, you just can’t beat lung cancer. It makes the old Disneyland Tower of Terror ride seem more like riding the teacups in comparison.

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First, there was the new  cough. It started two months ago. Genevieve and I had endless discussions about it. Was it getting worse? Better? Is there something else it could be? When you are healthy, a cough like that might be annoying, but you do your best to ignore it and wait for it to go away. When you have cancer, a headache two days in a row makes you wonder if the cancer has spread to your brain. There is no random symptom too small to raise the question: “Does this mean my cancer is growing?”

When that symptom is in the same place as the cancer, well, it’s hard not to go there. As a result, Genevieve and I have been snapping at each other for weeks leading up to this latest CT scan, and our subsequent trip from Portland to San Diego to get the results. I was nearly certain we would find out that my extraordinary ride of four years and nine months without progression, on a drug that normally leads to progression within thirteen months, was over. The Fear Factor had taken over.

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However.

I have been extraordinarily bad at knowing when my cancer is growing. I had no symptoms before I was diagnosed the first time, when it was Stage III. I had no symptoms five years later when I was diagnosed the second time, when it was Stage IV. The cancer has progressed twice since then, and I didn’t know it was happening either time. To confuse things even more, there have been many times when I thought it had grown, but I was wrong. I like to think I’m a good judge of character, but I have to admit that I’m a horrible judge of the character of my cancer.

This time, we thrilled that my cancer judgement was so bad! We got the results, and there has been no growth again! UN-FREAKING BELIEVABLE!

And to top it off, we just celebrated my thirteenth cancerversary! Not bad for a guy with Stage IV lung cancer, eh?

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We were almost giddy as we sat down for lunch. But right after we started, Genevieve started gagging and choking. We stopped thinking about my survival over the coming months, and started thinking about Genevieve’s survival in the next few minutes. She could breathe just enough to ask me to do the Heimlich maneuver, which I did unsuccessfully. A small crowd gathered, including a man who had just passed his CPR certification. He thumped Genevieve on the back several times, which was also unsuccessful. While this man,  several others and I problem-solved, Genevieve continued to wheeze and gag. We were all terrified.

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It became clearer as time went on that, while Genevieve was still gagging, she was able to breathe… just enough. She thought it was a pill lodged in her throat. A good half-hour of continued gagging later, the pill dissolved enough for the episode to mostly pass.

Our celebration flipped on its head and instead reminded us of the fragility of life for everyone. It was also a vivid reminder of how much Genevieve means to me, and how grateful I am to have her. The thought of losing her terrified me, and made my concerns about my own CT scan seem trivial. It’s true what Genevieve tells me: It’s much harder when your partner’s life is at stake.

The end result could not be better. Genevieve is back to breathing normally, and there is still no end in sight to my extraordinary good fortune with my Tagrisso clinical trial. And to top it all off, we BOTH have a greater appreciation for each other.

All in all, that’s a pretty great trip, don’t you think? Now, we have four more months to think about it.

I hope all is well for you, too, my friend.

Love,

Dann

Thriving With Cancer Minute #26: Say Yes More Often

Friends and Family,

It can be easy to let your world shrink and get in a rut, especially if you have cancer. Here’s an idea for spicing things up.

Also, you can help fight lung cancer by joining the Lung Love Run/Walk Portland this Saturday, June 22nd, or by donating to support lung cancer research. Here’s the link:  https://lungloverunwalkportland.yournextstepisthecure.org/

My team is Live Lung and Prosper.

Love,

Dann

Thriving With Cancer Minute #25: Secret Weapon for Kicking Cancer in the Keister

Friends and Family,

Survivors like us will try every trick in the book to kick cancer in the keister. Here is one of the most powerful tools I know:

It’s almost that time! The Lung Love Run/Walk will be on Saturday, June 22nd in Laurelhurst Park in Portland. If you would like to join our team (Live Lung and Prosper) or donate to support lung cancer research, go to https://lungloverunwalkportland.yournextstepisthecure.org/.

Love,

Dann

Thriving With Cancer Minute #24: Loving Yourself

Friends and Family,

 

Giving and receiving love are the most healing things we can do for ourselves. The real challenge is in loving yourself.

 

Here are some thoughts.

Also, you can help fight lung cancer by joining the Lung Love Run/Walk Portland on June 22nd, or by donating to support lung cancer research.

Here’s the page to join my team, Live Lung and Prosper:: https://lungloverunwalkportland.yournextstepisthecure.org/

Here’s the page to donate: https://lungloverunwalkportland.yournextstepisthecure.org/Dann?tab=MyPage&fbclid=IwAR2SILQAlxxumko_3ZV47l9Usk25rqjwnVexCPwCcFtq5EO58LrEhvcDdw0

Love,

Dann

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