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.

Dog with Biscuit.jpg

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

Distortions of Space, Time, and Sound

Friends and Family,

Genevieve and I have had our sense of reality severely tested. Time, space, and sound have all been distorted. 

Let's start with sound. Genevieve and I went to the same appointment together with Dr. Patel two weeks ago, and we both heard something very different. 

Here's what I heard Dr. Patel say: "The good news is that your scan results look great and everything seems stable. However, OHSU compared these results to the ones you had nine months ago, so we really can't tell if there's any change."

Here's what Genevieve heard Dr. Patel say: "The good news is that you're still in remission." End of story.

How could I hear, "We really can't tell," while Genevieve hears, "You're in remission?" 

I haven't heard the word "remission" from anybody except Genevieve for the last four years. When people ask her how I'm doing, she says, "He's doing great. He's in remission." I always took this as her affirmation, her imposing her intentions on the situation, her creating the reality that she wants to happen. Now, my doctor is teaming up with her to do this? 

I don't know what to call it, or what he actually said. All I know is that I'm feeling great, my scans haven't changed, and we're going to keep celebrating. 

OHSU had compared results from my CT scan, done two weeks ago in Portland, with ones done nine months earlier, also in Portland. The time in between, when I was having scans in San Diego, ceased to exist. The space/time continuum was then burst, as our UCSD (San Diego) radiologist said he would compare the last Portland scans with the most recent San Diego scans.  

Next (I think), time moved backwards, as we waited for the results. Eventually time started creeping forward again, and we received Dr. Patel's email: "No results back from the radiologists yet, but I eyeballed your scan and it looks great." He eyeballed it? Did I just slip and fall into the rabbit hole? Since when do oncologists trust their eyeballs to compare scans, when they don't even have another scan to compare it to? How do we know he's not in some kind of spacial distortion?   

Months later, in an email dated only three days later (proof of the time distortion), Dr. Patel emailed again: "CT of head and chest have been evaluated, and there's no change. Still looking great. However, we can't find the scan of your pelvis and abdomen to compare. Can you have OHSU burn another disc for you?" But before I even got to this email, time sped up and he sent a second email. "Never mind, we found it on the same disc. Won't be long now." Except it was. Very long. Weeeeeks  (possibly hours) later, he emailed again. "CT of pelvis and abdomen have been evaluated. No change!" 

Of course, with this great news, Genevieve and I went into a time loop and celebrated the CT results all over again. NO CHANGE! WOO HOO! TIME IS STANDING STILL FOR MY LUNGS!

Maybe we'll even celebrate by watching some 4th of July fireworks next week. :-)

Love,

Dann