Scanxiety is Alive and Well

November 14, 2019 Dann Wonser

Friends and Family,

Scanxiety has been alive and well for Genevieve and me. First, we turned our trip to San Diego into a three-legged trip that started in Hawaii. That was wonderful, but it meant I had to get my CT scan in Portland two and a half weeks before I met with the oncologist in San Diego to get the results. That’s a loooooong time to wait to find out if cancer is growing!

To complicate it, my friend Shelley, who had No Evidence of Disease (NED) for over two years, asked her doctor to do a brain MRI, because it’s protocol to do them every two years. While the rest of her was cancer-free, the MRI showed three brain tumors. They took care of the tumors, but it left me concerned, since I hadn’t had a brain MRI in over SIX YEARS. I appreciate Shelly telling me about her experience. That cancer could be poking Swiss cheese holes in my brain, and I might be the last to know. I asked my doctor to order an MRI for me, so we were waiting for THAT news for two and a half weeks as well.

It seems there’s always something that can add to the worry. This time, I had been coughing more for a couple of months. So far coughing has been a terrible predictor of when the cancer is progressing for me, but it’s a well-known symptom that’s hard to ignore. Add to that some stress with a neighbor that has been going on for months, and there was a lot on our minds before we got to San Diego.

But the trip to San Diego didn’t go as planned. A mechanical problem delayed our takeoff, which put us past the flight arrival curfew in San Diego. Because of that, they re-routed our plane to LA, and then bussed us down to San Diego from there. We finally arrived at our hotel at 5:30 in the morning, with just enough time to take a two-hour nap at our hotel before getting up and going to my appointment.

A little worse for wear, we showed up and tried to be prepared for anything.

The results couldn’t have been better. No changes in the CT scan results. We were thrilled!

The brain MRI results were “unremarkable,” so you can take that however you want. I’m choosing not to take it as an insult. Really.

With all the good news in hand, we waited in a sunny outdoor courtyard until my new supply of the medication was ready for pick-up. I launched into work on my computer and was carrying on like it was just another day.

But then Genevieve burst into tears, and couldn’t stop sobbing. She said she didn’t realize that she had been holding her breath for so long. Even though we tell ourselves that everything is going well, every scan results in a yes/no, cancer growth/no growth verdict. That makes it feel like there is a 50/50 chance that the cancer has started progressing again.

It feels even more impossible that things are going so well, because on average this drug works for 13 months without progression. It’s now been five years for me!

Does that mean I’m overdue? Or that the standards just don’t apply to me?

What Genevieve and I believe about that depends on when you ask us. If it’s now: I’m the exception, and that’s all there is to it. If you ask during that time between the scan and seeing the doctor, well...

Don’t ask.

Love,

Dann

Get a Free Copy of My Book - Today Only

November 3, 2019 Dann Wonser

Friends and Family,

In honor of November being Lung Cancer Awareness Month, I am giving away FREE digital copies of my book on Amazon. OFFER IS GOOD TODAY ONLY.

Here’s the link: https://amzn.to/2PJ4lsN

And just to give you a few eye-opening facts about lung cancer while you are here:

Lung cancer kills more people than breast cancer, colon cancer, and prostate cancer COMBINED.
60-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers.
10-15% of lung cancer cases are never-smokers.
Lung cancer kills 1.5 times as many women as breast cancer.
Breast cancer receives almost seven times as much federal funding per life lost as lung cancer.

Love,

Dann

Lung Cancer's Other Silent Killer

August 7, 2019 Dann Wonser

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.

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

July 11, 2019 Dann Wonser

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.

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.

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?

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.

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 # 28: Being Your Own Advocate

July 8, 2019 Dann Wonser

Friends and Family,

I wouldn't be alive today if I hadn't done this one thing: Being my own advocate. Here's the story.

Love,

Dann

Thriving With Cancer Minute #27: Being a Cancer Bad Boy Feels Good!

June 26, 2019 Dann Wonser

Friends and Family,

I know the right things to do to help my body fight cancer. Sometimes I break all the rules, and I feel good about it! It’s great to be a Bad Boy sometimes! How does this make any sense? Here’s how:

Love,

Dann

Thriving With Cancer Minute #26: Say Yes More Often

June 19, 2019 Dann Wonser

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.

Let’s kick some cancer booty!

Love,

Dann

Thriving With Cancer Minute #15: Cancer is a Team Sport

March 20, 2019 Dann Wonser

Friends and Family,

If you have cancer, it's not just you that is affected. It's everyone you know and care about, and the impact goes both ways. Here's something to think about:

Love,

Dann

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