Glioblastology

Count me among the people who love hoodies.

I wear hoodies with no undershirt on hot days.

I layer hoodies under denim trucker jackets on cool days.

I go straight hoodie when pink and purple streak the clouds, and the sun is lazy, drifting below the horizon, slinking, ushering in the evening, towing the heavy yoke of season’s change, making pale its warm glow to invite Autumn colors of rust and gold.

Falling leaves give way to frigid January. A hoodie lines my waxed canvas bomber.

Snowy February picks up two more layers: a thermal beneath, lined pleather moto jacket on top.

My winter beany is slouchy.

My chukkas are worn.

March and April, still hoodies, but layers are shed. It was May 13, 2016 that the cold outpatient floor chilled my bare feet, shuffling in oversized scrubs to the MRI bed, wishing I had a hoodie to pull tight, hood up, YKK inscribed on the zipper.

I breathed deeply in that tunnel, meditatively. A cheaper machine than what I visit a couple weeks later at the IU Neuroscience building for the more-involved functional version of the scan I first received. At the IU Health Methodist Medical Plaza South visitors smoke cigarettes in the parking lot while overworked technicians draw blood, and push IV saline. “Okay. Here comes the contrast,” the low fidelity narrator would buzz through my earphones, “We’re almost finished.”

The machine bangs and rattles, beeps and blurts. Me, with thumb pad softly stroking the emergency call button, wondering what type of emergency I could have in this claustrophobic closet, and fearing the lead from my elementary school pencil accident, would dislodge violently from my arm by the magnetic field and ricochet around my dimly-lit coffin.

The radio techs saw my tumor lit up on the computer screens. I mean, surely they saw it, right? It was baseball-sized. It is not their job to read the results, and anyway, the call was already underway between the doctor writing the radiology report and my primary care provider. The telephone call summoning me back to her office would be placed within minutes. But the techs at least had to see this is not a normal brain. I often wonder what the tech was thinking as he walked me back to the changing room.

Chilly feet. Sagging waistband. Boxers exposed. Dead man walking.

I get my routine labs drawn at this Plaza, and I often want to stop by the imaging department and let everybody know I am fine. Not great, you know, I have brain cancer. It will kill me at some point. Day to day, though, I am fine. I have dark chocolate, coffee, and a blog.

It is November: layered hoodies, a change of season. These days feel like my diagnosis all over again. I completed radiation therapy, I soon start cycle three of a twelve-month, high-dose chemo cycle, and I am adjusting to a new rhythm of life without the ability to drive (seizure risk), no working (long-term disability), waning social life (headaches, avoiding alcohol, wearing a cumbersome medical device), struggling to maintain a healthy relationship with my wife (living with my parents for physical and financial assistance), strict caloric and protein restriction (restricted calorie ketogenic diet (RKD)) and most poignantly, anxiety from recurring MRI scans to check for tumor growth.

Imagine the last big decision you waited on: hopeful for a job offer after a second interview; a mortgage decision for the home that perfectly fits your family; the results of a blood test after experiencing chronic fatigue; an expectant telephone call back from your estranged child; a college acceptance letter; an update from the attending physician after your spouse was rushed to the hospital after acute ischemic stroke?

Waiting is the hardest part, sings Tom Petty.

Every eight weeks I crawl into the dimly lit coffin and lie still to await my fate.
I played with my kids outside yesterday, chilled to my core, shivering, limping from my left-sided motor deficits: weak, awkward gait, and off-balance. I often forget I have cancer, and generally that is a very good thing, I think. I call it coping, not denial. Some days, though, “I do have cancer, after all,” I remind myself.

Or maybe I just need to zip up.