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!!!

Scanxiety is Alive and Well

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

September Scare

Friends and Family,

It's that scary time of the year again. No, I don't mean it's time to go back to school. It's the scary anniversary time.

Nine years ago, close to this time of year, I went in for an X-ray of a sore back. The X-ray was photo-bombed by a tumor in my lungs, so I started chemo, and had the offending tumor and the lobe around it removed.

Five years ago, close to this time of year, we were happily enjoying almost five years of my being cancer-free, when a routine scan showed that the culprit had returned - in spades. The inside of my lungs looked like fireworks had gone off everywhere. There was too much to remove, but with multiple treatments, we kept it at bay, and even shrunk it.

Last year, at about this time of year, Tarceva stopped working, and the cancer started growing again. My own oncologist could see no good treatment options. I will say this: He should never play poker. It's a good thing I found the AZD9291 clinical trial without his help.

So, after getting bad news in three different years at the same time of year, Genevieve and I were having one of the worst cases of scanxiety we've had since almost the very beginning of this ride. Compounding the fears, results are now being published about how long AZD9291 typically works, and it's usually just about as long as I have now been on it.

Throwing me further off balance, my buddy Craig Blower https://craigblower.wordpress.com has had continued slow growth of his cancer while on the same drug as I am. I'm still on the edge of my seat waiting to find out how his last scans turned out. Meanwhile, Kim, a fellow Portland lung cancer blogger http://aquariusvscancer.com/author/kimmywink/ that I met at the HOPE Summit in May, is going through brain radiation. Compassion is not serving me well as I worry about these two, and my concern for them hits a little too close to the bone. 

Yes, we panicked a little. Rather, Genevieve panicked a little, while I was ping-ponging wildly between confidently believing that I'm going to be around until I'm 90, and worrying that I will be in hospice within a year. 

That makes the results from last week's scan all the sweeter. Yes, there has been no growth in the cancer! Now I'm SURE I'm going to live until I'm 90!

...at least until the next scan. 

So what have I learned from this? There are limits to what living in the present can do. Realistic fears are still going to creep in from time to time, and maybe that's not such a bad thing. Sharing our fears has brought Genevieve and me even closer, which helps me to not feel so alone dealing with this. Sharing with you helps in the same way. It also puts me in touch with my own humanity. All my hopes and fears bubble to the surface and remind me that I am alive, and how much I value this life that I have. 

I hope you are in touch with the treasures in your own life. Maybe you can pull it off without a heaping dose of fear.

That would be pretty great, wouldn't it?

Love,

Dann

If Your Fate was in an Envelope, Would You Open It?

Friends and Family,

I had it right there in my hands. Should I open the CT scan report now to find out if the cancer has grown, or wait until tomorrow, when I see my oncologist in San Diego?

That’s what I was asking myself on Monday. I had my CT scan at OHSU (Portland) in the morning, and then came back in the afternoon to pick up the digital images (too big to email) along with the report from the radiologist. This is S.O.P., now that I am having my CT scans in Portland the day before we go to San Diego for the clinical trial.

What would you do, if you had your fate written down in an envelope? Would you open it? Burn it?

This wasn’t a question that would go away. Genevieve and I slept with the report five feet from our bed. We left for the airport at 3:30 in the morning, and the report was in my backpack, calling me. Flying down, I could hear a little voice from the overhead bin. “You don’t have to wait.”

I grabbed my backpack off the plane, and it was in my hands again. I didn’t let go until we rented a car and dropped it off at the hospital for my doctor, three hours before my appointment.

Then we waited.

I’m entering the time window when AZD9291 stops working for some people. This time window stays open roughly as long as Tarceva, but it varies a lot from person to person. For example, I met people at the HOPE Summit in DC this May that had been on Tarceva for seven years.

Since there is no clear treatment path after this, I don’t know what will happen if/when this stops working. The longer I stay on it, the more time we have to find the next miracle treatment.

At long-long last, we met with my oncologist. He told us the spectacular news we were waiting to hear. The cancer hasn’t changed a bit. We have six more sweet weeks of life to be grateful for!

OK, be honest. Up until now you’ve been thinking, “Dann, are you NUTS? Why didn’t you open the envelope?!!!” Although there may be a little (little?) madness, there’s some method in it. I’ve learned this lesson the hard way.

Nine years ago, when I was first diagnosed, I had chemo and surgery, and became cancer free. However, I was a lot more on edge about the whole death-around-the-next-corner thing than I am now. A year later, I got a call from my primary care doctor. He said my new CT scan had shown a “hyper-dense nodule,” and wanted me to come in for an ultrasound to confirm if it was cancer. Genevieve and I both went into shock. I can still remember where we sat when we discussed it, and feel the pit in my stomach. Fortunately, my appointment with my oncologist was only a few hours later. He told me that the report had been misread by my primary care doc (who has never butted in to my cancer treatment before or since). There was no cancer, and as it turned out, there wouldn’t be, for another four years.

THAT is why I don’t want to see the reports before I talk to my oncologist. A little bit of knowledge is a dangerous thing. Dr. Patel was complimenting me for my “will power” (won’t power?), but this was really about not setting myself up for unnecessary drama.

I have enough of that already, don’t you think?

Here’s hoping that all of your surprises are good ones.  

Love,

Dann