Chapter 7. It is Extremely Unlikely You Will Not Have a Recurrence

Glioblastology, the Book

I have exciting news to share: You have helped Glioblastology become an official Substack Bestseller! I can’t thank you all enough for joining me through highs, lows, laughs, and tears. It’s an honor to share my experience with you, and it is rewarding beyond belief that we have all transformed a life altering diagnosis into a space that serves others. Sincere thanks to everyone who’s reading, and to those who have generously supported financially, your investment in me is no small thing. With love, thank you. xx. <3 -a.

---

Welcome to chapter release Thursday! Last we left off, I had an encounter with a neuro-psychologist in the brain trauma unit—there’s a sentence for you! In chapter 7, we’re still in that locked unit. I wrestle with disability and its norms

“It is Extremely Unlikely You Will Not Have a Recurrence”

Imagine this scene: You arrive at a community rehabilitation hospital. Sliding automatic doors open and you enter the atrium of a hospital entrance. Patients and families may be visiting in the large, comfortable lobby, steps away from the top notch therapy gym that services the majority of inpatients, but not the person you’re here to visit.

The brain trauma unit includes its own therapy gym, secluded on the second floor, within the locked unit. Nurses sit behind the information desk, behind clipboards and hand sanitizer pumps. You are directed to the elevator to the second floor, where you meet large double doors; locked. You press a button to ring the nurse’s station, and you must be buzzed onto the unit, mindful not to allow others to enter behind and certainly not to allow any residents of the locked floor to leave.

While entering the unit, you take a call and strike up casual conversation like we all do. Kids, errands to run, whether you can meet for coffee later, or trouble on the job, and then you wonder why your quads are sore, and you think, Oh yes, leg day!

My trainer worked me so hard

you say loudly, entering the cafeteria

I thought I may never walk again!

You laugh on your end of the call. You’re making a joke, and I overhear it. I’m seated in front of a pink cafeteria tray, surrounded by fellow inpatients in the brain injury unit, many of us in wheelchairs or seated next to our walkers. Visitors are allowed to join patients in the cafeteria, and you must be here to visit with someone. I glance around the room to see my fellow inpatients with a range of physical impairments. I look at my lap, at my own legs, and the belly fat and steroid weight hugged by the cloth gait belt and metal buckle. I see these baggy, off-brand basketball shorts. I glance up to track you pacing around the room, stepping through the awkward gaps between power wheelchairs, walkers, and rollators. I grab my journal to scribble, “Never walk again.” Only a couple of short weeks since my surgery, the words mean something to me, “Never walk again.” I am not laughing. Or if I am, it’s with a hint of madness.

It did not take long for me to learn what life in public would be like with a disability. We either draw unwanted attention from onlookers or pass by unnoticed and ignored. This dichotomy—invisible or highly seen, how will I appear to others today?—is a contrast that plays out over time. It always goes either one of these two ways.

Years later, queuing to pre-board for a flight, Whitney lugging our bags along, I precariously approach the ledge of near certain seizure, held captive by the overwhelming stimulation of a busy airport and the fatigue of travel; we are nudged, squeezed, cut off, and overlooked by fellow travelers anxious to get to their complimentary beverage—invisible. Or walking the tightrope of balance and body control, careful not to bump into someone’s chair, or knock into a server spilling their tray, I hold the gaze of restaurant patrons—laid bare; highly seen. These are my public modes: specter or spectacle.

In the story of the cell phone conversation in the cafeteria in the locked brain trauma unit, I’m surrounded by people with neurological disorders, stroke, aneurysms, significant cognitive deficits, and permanent sensory-motor impairment. To this visitor on the phone, we are a sea of invisible bodies. Not even an afterthought. There is no shudder, no flinch, no apologetic shrug realizing she has poorly chosen her words when joking about mobility.

In that moment, I do not hold disdain for her ability to dance, if even with a little soreness, around the room. Instead, I regret her inability to recognize us—me and my fellow patients—for who we are. Who we are as people, not as bodies. The person I am, sitting in that wheelchair, wrestling with this very thought, but without sarcasm:

I.

May never.

Walk.

Again.

It is funny to say, “I may never walk again,” because it shows how difficult it is to confront a body that is weak.

The joke masks fear.

Wading into the sea of disabled bodies, this sarcastic joke spoken to a friend on the phone may be just the reassurance this visitor needs to shore up security in a setting that raises the specter of disability. The function of the joke is to double down on a sense of self, world, and body that is whole, complete, able, and mitigates the fear of becoming one of these invisible bodies whose identity is fractured; to make the disabled bodies she encounters invisible because her own is showing its fragility.

***

June 10, 2016, my therapy schedule was cleared. Daily meal selections are penciled onto a slip of paper delivered with dinner the prior day. Pencils are poorly sharpened, some of them shortened like a caddy’s, and pens are missing caps. Craving control, I pored over the menu throughout dinner. The food was cafeteria grade fare from Cisco or some other nondescript food services contractor that met weak evidence-based USDA nutritional guidelines and packaged to flow through profits toward the bottom line.

Dressed in clothes that didn’t feel like me, bound by someone else’s schedule, adherent to assisted toilet transfers, and negotiating strange relationships with my fellow inpatients, it wasn’t until the day after my ultimate discharge from this facility that the depth of role performance became clear. My breakfast was routine: two pieces of yellowish bacon, home fries, rubbery scrambled eggs, a small pouch of Hunt’s ketchup. Waking up in my own home for the first time in nearly a month, in the first week after discharge, I prepared exactly this meal morning after morning. As far as breakfasts go, this one isn’t remarkable, but years after these strange days, this combination of foods, sometimes with a tear-off, disposable bowl of Raisin Bran when I’m offered a continental breakfast at a hotel while traveling or a cup of Yoplait yogurt at a conference coffee hour, both a la carte choices from the rehabilitation hospital, these mornings in the cafeteria are close at hand.

That Friday morning, June 10, I ate my breakfast with a spirit of levity. The day would put me and Whitney face-to-face with our oncologist and, by extension, with brain cancer, but with a nod toward the strangely oppressive invisible shackles of a locked hospital unit, the prospect of a “pass out” to leave the unit overcame concerns, at least momentarily.

I told the neuropsychologist two weeks before this Friday that, “I’m excited to see what we’re up against.”

Today, we would find out.

Whitney brought a collared shirt, and I would dress in jeans, not the oversized workout shorts that had become my daily wear. I tucked in my shirt, and I laced up the gray Chuck Taylor’s that were the only shoes I had on hand that I thought suggested that I gave a damn—not the generic trainers that a friend of my brother’s endearingly called “Dad New Bals.” The rehab hospital felt like home, and I was proud of my ability to turn my own wheels to move around the unit. We rounded the corner of the large square. I waved at the therapists in the gym, nodded to the aids in the cafeteria feeding those who could not feed themselves. We rolld past the stairwell where my physical therapist had taken me two floors of hard concrete steps that I’d struggle to plant my weak foot and wobbly knee, up and down, to prepare for ultimate discharge to our second floor condominium, and we’d park near the station where nurse’s buzzed people in and out.

Here, Whitney snapped a camera phone picture of me, flashing two thumbs up and a large grin. What lay on the other side of those locked double doors was a diagnosis. This was the last photo ever taken of the Adam left behind.

These two weeks after surgery were a slow shedding of my skin, a maturation, a developmental cycle, and I would emerge from my chrysalis as a terminal species.

A white transport van waited in the circle drive. Exiting through the main lobby entrance of the hospital was surreal. The energy here was illuminated by sunlight and smiling faces. Those with impairments here were in the deep well of their lives being thrown a rope to buoy them back to the surface. Many of us in the brain trauma unit hoped at best to achieve some mitigated independence, and for many of us, we would never know life without an aid, home health, or involved caregiver. Our lives would be punctuated by exams, evaluations, office visits, and pharmacy copays.

We may become unable to recognize the faces of our loved ones. We may never recover our personalities. Our memories were archived in the file cabinets of our brains with lost keys that would occasionally pry open to give those who loved us hope, only for the folders to slip from our fingers and scatter onto the floor with confusion and anger. We may be downgraded to facilities with more intensive care and profound loneliness.

It was hard not to resent happiness and hope.

A ramp extended from the back of the minivan, and my wheelchair rolled in on tracks. I reached two metal blocks inside, and locks fit around the wheels. Whitney entered a side door and sat in the drop seat next to me. We drove from the facility on the north side of the city toward the downtown Neuroscience Center, where we would meet my oncologist. He had visited once while I was in the hospital after surgery, but the details of that meeting are too far out of reach.

I searched the horizon in an effort to identify city landmarks. Like the window-seat passenger in an airplane on approach, I stared out the window to orient myself in the geography, as though pinpointing my location would ground my experience in something tangible.

We’re 5,000 feet up at 300 miles an hour, and the oxygen masks could drop at any moment. Whitney snapped another photo—our only from this excursion from the brain trauma unit. My poorly lit silhouette is in the foreground, with blurry gray buildings streaking in the back.

One by one: the high rise where I worked. The hospital where I had surgery. The Starbucks and lunch spots. The oceans of parking lots. Everything that everyone did all the time and that defines the normal that I’d never again achieve. Or who knows? We didn’t.

The driver carried on banter throughout our trip, and my wheelchair pressing against the locks, and what happens at a “neuroscience center,” and I flash back, “You’ll be groggy at the beginning and end of the procedure,” my anesthesiologist explained, and the landmarks that my eyes seek to identify on the drive are like the crests of waves in the operating room: Megan’s hand, and the monitor, and a firm grasp on my shoulder, and relaying a message to Whitney, and my surgeon’s hands gently cradling and wrapping my skull, and here I was, groggy, undergoing the next medical milestone, then naming the city streets as we approached the building, and the closer we approach this episode in my mind—as I type today, the wounded storyteller—I am groggy again, and we pull up to another circle drive, and another entrance, and another grand atrium with pictures of old white men and plaques beside their portraits.

Blank.

Nothingness.

My memories flash in and out of view.

Trauma, my therapist explains today.

She is not surprised that these memories are inaccessible. This is the body’s response: to shift the brain into automatic pilot.

We are in a small exam room. An exam table with the rolled-out paper. Chairs are brought from other rooms and squeezed in near the table to accommodate the larger party: me, Whitney, our doctor, and his nurse. The maze-like hallways were prohibitive to easy navigation, given my wheelchair. Whitney recalls that she was bumping into door frames while negotiating the path to the office.

I close my eyes now to recall the scene. With repeated telling, my therapist thinks, more memories emerge. My eyes now are damp, and my breathing is heavy through my nostrils, air flowing past mild congestion, and wetness bubbles, and I need a tissue.

My head aches at the temples.

I am in the room with my doctor.

The nurse, she reaches from her chair, and she grasps my hand and Whitney’s hand in each of hers, and she squeezes.

“You have many positive prognostic indicators.”

If you have delivered an important speech in your life, you may find that months, even years later, there is at least one line from that speech that you could deliver again with proper pacing, cadence, and emphasis at any time. This line hangs there as a closet light in the archives, able to be found with motor memory alone, searching in the emptiness that is this encounter.

“You have many positive prognostic indicators.”

I hear it again.

These are new words that each hold meaning in isolation but mean something completely new and different when strung together.

Something foreign.

“It is extremely unlikely that you will not have a recurrence.”

It is a double negative. It is a sentence constructed to confuse, not with malice, but to layer grammar and mechanics on top of simple statements to soften the blow.

“It is extremely unlikely that you will not have a recurrence.”

We are four days shy of four weeks after the STAT MRI ordered by my general practitioner.

“I regret to inform you that you have a brain tumor,” she said.

Now we know it is the aggressive and incurable brain cancer, glioblastoma.

“It is extremely unlikely that you will not have a recurrence.”

We load back into the van. We called family members.

The responsibility that we have to share what we’ve learned from illness begins with being the rock to others who are poorly equipped to handle someone who they know is now faced with a life-threatening disease.

We return to the rehab hospital, where everything is completely different, yet everything is exactly the same.