Home » Posts tagged 'Scanxiety'
When basking in the wonders of volcanoes, rainforests, and oceans, I can focus on something other than cancer for a while.
When heading to a cancer center for brain and body scans, not so much.
Still, facing the possibility of progression is easier when I’ve been immersed in nature for a few days. I suspect most cancer patients might benefit from a “nature break” to combat scanxiety before a scan.
Image credit: Microsoft
Tomorrow morning I fly out for another Monday PET-CT scan at University of Colorado (CU) in Denver. Tuesday I start cycle 35 of Xalkori on my clinical trial (cycle = 4 weeks). If my Tuesday clinic visit reports a clean scan, I’ll be almost 30 months NED on this targeted therapy.
Because my injured left shoulder is so inflamed, I asked my oncologist if I should have a CT instead of the usual PET-CT this time (inflammation shows up hot on a PET scan), but he says he will just ignore that shoulder. Since I had a detailed MRI of that area a couple of weeks ago when diagnosing my shoulder problem, I’m not concerned a metatasis might be missed. I do wonder how my shoulder will feel after having my arms over my head in the scanner for over 20 minutes, but that’s not a big concern either.
While at University of Colorado, I’ll also be meeting with a CU communications staffer (to discuss cancer center public relations), a molecular pathologist (to discuss ways to explain benefits of genomic testing), and Lung Cancer SPORE members (to discuss a SPORE project). I’m really enjoying my work and friendships with all of them, and love getting to learn about cutting edge science from those who are doing the research. Alas, Dr. Camidge is away on travel, so I won’t get to work on any videos with him this trip.
Interesting projects are definitely worthwhile distractions at scan time. I’ve been so busy with lung cancer advocacy and travel (26 days out of the last two months) that I haven’t had time to feel any conscious scanxiety. However, I still haven’t packed, completed household pre-trip tasks, or written items with impending deadlines, and I’m moving slower than usual. I find myself having difficulty thinking beyond my next cup of coffee. It’s sunny and clear outside, but gray and fuzzy inside my head. So maybe I’m not yet entirely immune to scanxiety’s influence.
Then again, the brain fog could simply be lack of sleep due to Seasonal Affective Disorder (the sun is up 16 hours of the day right now in Seattle), time zone tango, and travel schedules. The source of the fog doesn’t really matter, I suppose, as long as I warn my family of its presence. Otherwise they may wonder why the dirty dishes are in the microwave instead of the dishwasher.
Photo credit: Flickr user Francesco (Creative Commons)
Today I’m again boarding a flight to Denver, Colorado, for my bi-monthly scan and clinical trial check-in. Packing and traveling for my clinical trial is pretty routine after 2+ years. Despite the best effort of my conscious mind and having No Evidence of Disease for 28 months, some small part of me still gets nervous as scan time approaches. Even seasoned cancer survivors can sometimes experience scanxiety.
Perhaps spending March dealing with pneumonia prompted this feeling. I caught an upper respiratory virus shortly after my husband did. Since I could see his symptoms were similar to mine, and my symptoms started only a few days after my last clean scan, I wasn’t worried the severe goopy cough might be lung cancer progression. However, the goop got caught in my radiation-scarred lower lobe of my left lung, and set up residence. It took me two Z-paks of antibiotics and a couple of extra weeks to knock it out.
I suppose that reminder that my lungs are vulnerable could be enough to explain my edginess and need for more hugs. It’s not overwhelming, it just slows me down a bit. I just wish my rational mind and faith had learned by now how to silence the vague unease.
Fortunately, a new science fiction story idea popped into my head yesterday and is vigorously trying to elbow out an article I’m struggling to finish this week. I’ll try to capture the concept on my flight to my Denver clinical trial today, before it fades in the chemobrain fog. My mind will be productively preoccupied during this trip. Maybe if they work together, the two writing projects can throttle this low-level scanxiety.
Distraction is the better part of valor.
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.
Tomorrow I’ll have a PET-CT scan plus a brain MRI to determine if my cancer has recurred. I’ve had around thirty scans of one type of another since my cancer journey began twenty-nine months ago. In my current clinical trial, I have a PET-CT every eight weeks and a brain MRI every six months.
You’d think scans would be old news to me by now. In some ways, they are. This past week was pretty normal in most respects, without undue anxiety or sleeping problems. My scanxiety’s been lessening as I accrue more months of NED (No Evidence of Disease) on Xalkori. Life continues to inch towards normalcy. At times I even forget that I have metastatic lung cancer.
I’m not totally immune to scanxiety, however. It finally hit me yesterday evening. When packing for my flight to my clinical trial in Denver, my brain seemed to fight me every step of the way. When hubby came home after working late, I couldn’t shift gears to get my packing prep out of his way. When I finally got to bed, I didn’t fall asleep for hours. When driving to the airport this morning, my mind kept wandering to somewhere other than the highway in front of me. When going through airport security with my oxygen concentrator, I couldn’t help remembering I was a lung cancer patient traveling for treatment.
Despite all that, I’m more hopeful than I’ve ever been going into a scan. I know I’ll likely have to deal with active lung cancer again eventually. Hopefully I’ve finally trained October not to bring me a recurrence (it has the past two years).
Early this week I traveled to Denver for my April trial check-in and scans. In addition to the bimonthly PET-CT scan, I was scheduled for my semi-annual brain MRI to see if my lung cancer had spread to the brain. I had been having more headaches and neurological issues over the preceeding month, and I left for Denver apprehensive about what the scans might find.
I had my scans Monday April 22 (read a summary of my scan day), but had to wait for my Tuesday appointment with the oncologist to learn the results of the scan. While I kept busy Monday evening visiting with my nephew and his wife, and helping my son via phone with his geology assignment, my scanxiety hovered quietly in the background. However, it made its presence known by waking me several times during the night, and ensuring my eyes flew open Tuesday at 4 AM Denver time (3 AM by my body clock). I gave up on the idea of sleep around 7 AM and rose early to find this awaiting me.
My rental car was under three inches of powder snow, and white stuff was still falling. Denver’s had a snowstorm every time I’ve visited it for the past four months. I checked the local weather on my iPad. Although Denver is well-prepared to handle snow, the roads weren’t cleared yet, and the freeways were gridlocked by accidents.
I skipped breakfast and headed into the belated winter chill. After brushing snow from the windows and doors, I started the car, turned the heat and defroster to max, and connected the GPS to its traffic cable. The suggested route avoided freeways, offering side streets for the 22-mile trek.
On the 90-minute crawl to the University of Colorado Cancer Center, my mind wandered to what ifs: What if they did find a brain tumor? Then the light would change, and the demands of the drive would yank me back to the present. At the next back-up, my thoughts wandered again: What if my cancer has spread elsewhere? What if I have to leave the trial? What if I have to go elsewhere for the next trial?
It was indeed a long drive.
I arrived at UCCC with just enough time to grab a quick breakfast at the cafe and hustle up to my appointment. I was on time, but other patients delayed by the snowy streets created a 45-minute wait for the oncologist. I was shuffling back and forth between the lab results on my UCCC iPhone app and previous months’ lab results on my iPad when the doctor walked in.
His big smile said it all. “I’m so glad to be able to give good news.”
Both my scans were clean. I was still dancing with NED (No Evidence of Disease).
By the time I left the clinic, the streets were bare and dry, and the sun blazed bright. The snow had simply evaporated, along with all my fears. I plugged my phone into the car’s stereo and sang along with the Eagles all the way to my nephew’s house.
Even when mind storms make the road look bleak, there’s eventually sunshine to be found.
On the flight home the next day, I looked out the window into the unusually clear skies over Washington and saw the bright side of snow.
Yep, the scanxiety is cured.
Gray Connections 