Cancer Diary
Scanxiety
Scanxiety definition: the intense, often debilitating fear and anxiety cancer patients feel before, during, and after imaging tests (scans). This common, sometimes “universal” experience can cause sleeplessness, racing thoughts, and physical symptoms like nausea. It stems from fear of recurrence or the results, with symptoms sometimes starting weeks prior.
Scanxiety is REAL!
I had my last scan on Friday the 13th of March. Not an auspicious date for good luck. If you’ve never had an MRI, let me enlighten you. First, NO METAL on your person - no jewelry, zippers, underwire bra, snaps, or buttons. Just trying to find the right clothes and shoes to wear to the scan (so you don’t have to strip down and wear a hospital gown) is stressful.
Then you are placed in a tube that closes over you, pillows are shoved between your head/body and the tube walls to keep you immobile. Then the fun begins. Forty-five minutes of random loud noise. Typically you are offered earplugs or headphones with music to try to mask the sounds, but nothing can diminish the drone, beeps, clangs, and changing patterns of noise. Halfway through the scan a dye is injected into an I.V. that was “hopefully” successfully placed in your arm before the scan started. Last scan it took five pokes and three nurses to successfully place the I.V.
Within a few hours of the scan a message pops up in your patient portal letting you know that you have new test results. Opening the results is useless, because I’m not a trained medical professional and have no idea what the thousands, yes thousands, of pictures of my brain mean. There is a summary written by a trained medical professional, but that doesn’t help. It is written in a medical jargon that the average person cannot understand. Although you can pick out a few words that you understand. Words like tumor, growth, abnormality. I have learned to send the report to my daughter (who is a “semi-trained” medical professional because she has seen every episode of the television show E.R.), who puts it into an AI program to decipher into layman’s terms. No matter what AI tells us, I still have to wait a few days for my oncologist’s appointment to really understand the ramifications of the report.
My Friday the 13th scan has been reviewed by my radiation oncologist, my main oncologist, and my clinical trial oncologist, Next week I will see the neurologist who consults with my brain surgeon. At this point the consensus is that there is a sesame seed size growth, we will do a short interval MRI in May, and then present to the tumor board for recommendation. So now I get to experience scanxiety awaiting the scan in May.
In the meantime, I start another round of chemo, travel to New York University Langone Hospital for another clinical trial injection, and wait. I try to pretend life is normal, but that is difficult. I’m grateful for being as healthy as I am, in spite of a terminal diagnosis. I walk 2-miles every day thanks to my friend Susan who won’t take no and just shows up and makes me do two laps at my local park. When she can’t take me, my husband Frank and dog Rocky take me to the park. I nap every afternoon, I eat well. I am thankful that I don’t have many side effects. Fatigue, a slight hand tremor, and vision loss are my biggest complaints. (Oh, and the whole losing my hair thing!) When I go to appointments at the cancer center and see other patients I realize just how fortunate I am and I do not take it for granted.
So, I wait. My next scan is May 12th. I’ll try not to freak out too much between now and then. Every little twinge, headache, or pain puts me into a scanxiey tailspin. Thank goodness my doctors had the foresight to put me on Prozac!
