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

Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.