Last Monday and Tuesday, September 8-9, I was in Denver for my clinical trial at University of Colorado Hospital (UCH). I had my once-every-eight-weeks PET-CT scan along with a once-every-six-months brain MRI.

I’m happy to report that both scans were clean. I’m now twenty months with No Evidence of Disease of metastatic lung cancer.  That Xalkori is great stuff for those of us with ROS1 NSCLC!

I’ve been in my clinical trial for 22 months, and the trial has been running for over three years. The medical journal article summarizing trial results is due out sometime in the next two weeks.  Judging from the response to Xalkori of several ROS1ers I’ve met online, I expect the news will be positive.  Can’t wait to read it–I’ll probably hustle to the University of Washington Library and download it first chance I get.  Yes, besides being a science geek, I’m an INTENSE science geek.  One of those “complete response” lines on the waterfall plot will be ME!

The scanxiety for this visit was different than my previous visits to Denver. It’s been a very busy summer for me.  As I posted previously, before flying to Denver I attended the Stanford Medicine X conference in Palo Alto September 4-7.  I gave my speech on lung cancer stigma on the main stage Sunday morning, left the conference a couple of hours early to fly to Denver Sunday night, and had my clinical trial labs and scans Monday.  I was so focused on the conference and my speech that I barely noticed any scanxiety –it was difficult to distinguish from the intensity that precedes my speaking publicly.  The only real indication of any anxiety was my increasing inability to focus during the conference and three hours of lost sleep the first night in Palo Alto (although my husband might have a different perspective about my intensity in the days before I flew to Palo Alto).

A few other things were different about this clinic visit:

  • On the day of my visit, I spent an hour talking with the American Lung Association of Colorado’s office about LUNG FORCE.
  • A pleasant UCH oncology Fellow conducted my clinic visit. My primary oncologist Dr. Camidge came in to chat with us both for a few minutes afterwards–he knows I always have a list of questions for him. We talked about an exciting new clinical trial design at UCH for FGFR-positive NSCLC (more on that in a future post).
  • UCH had recently installed new software for their MRI machine, so the report of my brain MRI was not available at the time of my clinic visit. However, Dr. Camidge and the Fellow both reviewed the scan itself and reassured me it was normal.
  • After Dr. Camidge completed his clinic hours on Tuesday, he joined me, Dora (an online friend of mine who is also his lung cancer patient), and Dora’s husband Bill for a chat at a restaurant near UCH. How many world-renown lung cancer doctors do that? Well, yes, I did bribe him with a cup of coffee and a pastry. Here’s a selfie we took:

selfie with Camidge

Something else was also new to me after this clinic visit. I had a headache after I arrived home.  Since I’d just had a clean brain scan two days before, I knew the cause could not possibly be a brain met.  Somehow this reinforced the feeling that I was more a normal person than a cancer patient at this point.  Sometimes a headache is just a headache.

The brain MRI report appeared in our mail yesterday. It didn’t say much except “normal,” but a few terms were new to me.  I was Googling the new terms when an infolinks box popped up with this message:

“Searching for T2 hyperintensities in white matter? Try Kelley Blue Book!”

Maybe Kelley Blue Book can tell me how my hyperintensities affect the resale value of my brain.

My Scanxiety Won’t Listen to Reason

To promote the value of blogging transparency, I must make a confession.  I have a PET-CT scan on Monday to check the status of my cancer.  For the past several months, I’ve been pretty relaxed about scans.

Right now, however, I have a raging case of scanxiety.

There is no logical reason for this.  My scans for the past 11 months have been clean, and I have no symptoms that would indicate this scan should be any different.  Even if I do show a recurrence on this scan, I know I have treatment options.  Even if I didn’t have treatment options, I am not afraid of dying.

Decades ago, someone taught me my emotions can be influenced by how I choose to view a situation.  If I hear a rude remark, I choose to think “They’re having a tough day” and I don’t get angry.  If I screw up on something important, I choose to think “I’ll do better next time” and I don’t feel frustrated with myself.  This technique allows me to sidestep most negative emotions and continue moving forward instead of getting stuck. It even works with scanxiety. Usually.

So why the heck doesn’t my scanxiety respond this time?

I suppose recent events as well as past history have something to do with it.  A neighbor who was diagnosed with lung cancer after me died from metastatic tumors in her brain covering a few weeks ago.  A friend in my lung cancer support group who had been doing well on a targeted therapy developed brain tumors in early October.  A friend in my online support group, and who is in my ROS1 lung cancer clinical trial, may have progressed (I blogged about that here). The clinical trial in which my onocologist planned to enroll me if my cancer recurred just stopped accepting new participants, which means I don’t know for certain what my options are when my cancer recurs. And in December of each of the past two years, I was coping with a recurrence of my cancer.

I guess my subconscious processing of all these events trumps the thoughts I choose to think in my conscious mind.

So here I am, preparing to fly to Denver for yet another scan.  Inside, I feel like my entire body is about to explode from pent-up tension.  Outside, I’m strung so taut that I erupt at a single misstatement from a family member.  My scanxiety hasn’t been this bad since my first recurrence blossomed into a very visible tumor on my collarbone.

All I can do is eat healthy, try to get a good night’s sleep, listen to lots of Mozart while I pack, and keep to myself until Monday afternoon so I don’t bite anybody.

Still Dancing — OK, Walking — with NED

My August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now go to Denver at 8-week instead of 4-week intervals for my ROS1 clinical trial, and have labs drawn at my home clinic between Denver visits.

I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is “wimpy.” If I walk one city block here at sea level at a moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate rises to 140! I have to use an oxygen compressor to walk in Denver without gasping or stopping after 500 feet. The persistent Xalkori-induced edema isn’t helping.

The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I’m SO good at taking things slow.

I’ve developed something called “trigger finger” in my hands, and the oncologist says he doesn’t think it’s related to taking Xalkori (although edema might play a role). Because of this and some other issues, I’ve scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know — why stop now?) I’ll hear what my PC doc thinks.

So, here I am, just taking life slow, glad I’m around to enjoy the magnificent Pacific Northwest summer. I’ll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.

Wait …

Wouldn’t it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or …