I have endured 14 or 15 MRIs in these past 15 or 16 months. That is quite a few. I worry about side effects of prolonged exposure to the contrast agent gadolinium, which is injected by IV at each MRI. For that matter, I worry about my IV blowing a vein when the gadolinium is “pushed”! I worry that I’ve forgotten a metal artifact in my pants or shirt pocket that will be ripped from my clothing and ricochet around the tube like an errant bullet. (I think there was an episode of House about that.) I worry that I’ll nod off 30 minutes into the scan, jolt awake, and have to restart the sequence of images for failure to hold still enough. (There was also that one functional MRI scan that required motor and language tasks to be performed while the images were captured, and I felt very nearly brainwashed, but I only say that for dramatics.)

But most of all, I worry that this will be the scan to reveal new tumor growth or recurrence. Everything you read about glioblastoma includes some version of the description, “aggressive, deadly, poor prognosis, incurable.” My neuro-oncologist told me, “it is very unlikely that you will not have recurrence.” Another doctor (whose name and title remain nameless) took the breaking of bad news a step further when he told me and my wife during an office visit, “you know you’re going to die from this, don’t you?”

This week I had an MRI scan on Monday, my every-eight-week immersion into the tube, and today, I want to spend a little time writing about the process of undergoing monitoring for chronic and advanced illnesses. People often say to persons with chronic illness to, “keep a positive attitude,” and it turns out this is excellent advice, but our loved ones who speak these words have little in mind of the experience the person with illness is enduring. I hope to offer insight into the obstacles for keeping up a positive attitude.

The term “scanxiety” is fairly well known around the cancer community. The term speaks to the feelings of anxiety, depression, fear, and stress surrounding an upcoming scan or test to monitor disease progression. Scanxiety may set in days before a scan and may stick around for a few days following. What is problematic about this feeling is its seeming contradictory nature in the face of the general public’s attitude toward disease. Diseases are to be “beat,” we are “cancer warriors,” we will take on our disease and, “kick it’s ass,” because, “you got this.” Our friends, family, coworkers, sometimes medical team, and many other acquaintances want to cheer us on like we’re marching off to war–hell, President Nixon declared it a “War on Cancer” when he authorized expanded budget and autonomy for the National Cancer Institute (NCI) in 1970.

In an MRI machine a patient lay motionless, often in scrubs, under the oppressive sounds of the giant magnet, if a head MRI you’ll be latched into an immobilization mask, and typically an IV is placed in one of your arms. You take deep breaths. You feel very much out of control of the circumstance, of your own body, and of the disease that grips you. This is scanxiety. Yet, when you checked into the imaging facility on Facebook your friends all said, “you got this!”

I feel anxiety, and its origin is not only the scan itself, but it is my deep sense of fear and sadness juxtaposed against people’s calling on me to fight, to battle, to kick its ass, to be brave, and don’t worry, because “prayers up.” In an effort to be encouraging to our loved ones we launch a barrage of empty platitudes and weak analogies.

This is scanxiety.

The eight week countdown to the scan is wait enough, but there is plenty more waiting to be found. Because of health care restrictions my imaging facility and neuro oncologist are affiliated with separate institutions. Following my scan I submit for a disc to be created, which can be picked up 24 hours following my scan. I then take the disc to my oncologist’s office, and wait either for a call or for my office visit the following week. My only glance at results following the scan is the radiology report you see pictured above, which is typically posted three to four days after the MRI.

Standard language appears on this report, including the imaging techniques and “signals,” e.g. T1, T2, FLAIR, etc., and you’ll also notice standard diagnosis language, “malignant neoplasm of parietal lobe,” and procedural terms, “resection,” and anatomical identifiers, “posterior right parietal lobe.” Each of these are vitally important for the language of medicine in our fee for service, reimbursement-driven culture of American healthcare. See, my diagnosis is coded with a unique identifier from the International Classification of Diseases, in its 10th edition (ICD-10), and this code allows for certain procedures, also coded with unique identifiers from, for example, the Current Procedural Terminology (CPT) code set. My healthcare providers are only reimbursed for CPT codes allowed under certain rules associated with my ICD-10 code.

I share this with you to help folks understand how deeply entrenched our coding and classification systems are to report on the experience of a patient living with illness within our current healthcare system. Because my medical team resides within different institutions, I know that when a specialist writes an order for me  that will cross these institutional boundaries, I need to check for accuracy in my name, date of birth, insurance details, maybe my medical record number, usually my diagnosis code, and so on. Each of these logistical details are also held in mind when showing up for a scan. My MRIs run about $5,000 each, every two months, so it’s the best interest of my family that we’ve crossed our t’s with insurance.

What is not standard in this report is the language used by the radiologist who reads the scan and prepares the radiology report. I was motivated to write this blog post today because of the particularly nuanced language appearing in the “Impression” of the report: “…without convincing evidence of progression.” When reporting these results to a friend I said, “[this conclusion] is a respectfully conservative claim I like as a philosopher, but not necessarily the certainty I’d like as a person with brain cancer.”

We tell our loved ones living with chronic and advanced illness to keep a positive attitude. This advice is good for us all, yes? Life is that much better when we approach it day to day with light heartedness, care and concern for others, a sense of humor, and yes, above all, “a positive attitude.” As you help friends and family navigate the challenges of illness, especially advanced or chronic illness, remember that often the symptoms of disease are second-place to our worry, anxiety, stress, and depression. My best news this week is not that my cancer has not grown any more, but it’s that there is no convincing evidence to conclude that it had. This is humbling and worrisome, but it is also liberating to free myself from the pursuit of certainty I may never attain, and so I have learned to be happy with evidence that is at best only indicative.