Fall in the Foothills by Paula Holmes-Rodman

by Paula Holmes-Rodman

The first chills arrived as summer drew to a close. It was just a bit of dizziness, a few headaches… Oh, it was probably nothing. The first creaks, the first unusual movements and sounds, darting shadows out of the corner of your eye… Just stress, or panic attacks, or well, she’s autistic you know. Never mind. My sister, Lindsey was prescribed yoga, meditation, muscle relaxants – the wrong cure for the wrong demon.

Recurrence tends to be a devil you know, and we had expected her ovarian cancer to show up in its usual favourite haunts of the abdomen, liver, or lymph nodes. But Lindsey’s cancer chose a sequel with a 5.5 cm brain metastasis as its poster child. It brought with it increasing tremors and slamming head pain that knocked her off her feet and radically altered everything that came after. “It’s very rare! Like maybe 1-2% chance!” Her oncologist rattled off doom statistics, as if we should taunt fate and purchase a lottery ticket as well. Rare, unlucky, abnormal or just cursed, it didn’t matter. The doctor looked right through Lindsey — writing her off as collateral damage to a blazing cancer, or maybe writing her up as an interesting conference paper. I wanted to beg, but I wasn’t sure to whom. She’s worth fighting for, she is more than an unusual tumour, a shrugged dreadful statistic, don’t let her fall, don’t let her fall…

A scant two months had passed since we sat in a cramped exam room in the dingy basement warren of the Tom Baker Cancer Centre at Foothills Hospital and heard that most magical incantation: “no evidence of disease.” I had hurried her up the elevator and into the summer brightness. I sensed but promptly banished the wispiest echoes of “lucky,” “for now,” and “be vigilant.” I smelled the caution in the air, but the thrall of “normal” tempted us both and I drove away with her, trusting health and favour.

***

Labour Day weekend blanketed Alberta in an eerie orange smoke. Even the hermetically sealed hospital was not immune to the ominous threat of wildfires that burned our eyes and caught in our throats. The sky was the same sickly glow all day long. The sun seemed neither to rise nor set, and the mountains were hidden from our 11th floor hospital window view. We were back at the Foothills — Lindsey in the acute neurosurgery ward, me in a malfunctioning reclining bed-side chair for weeks on end.

The tremors shook her violently as we waited for what seemed like an ever-delayed surgery. I raced to get ice packs, rubbed her shaking legs, crawled into Lindsey’s narrow bed with her and pressed the call bell repeatedly — such weak weapons against a demon so strong it had yet to reveal its terrible face in full. The nurse brought pain meds and sorrowful eyes. She told me privately in the hall outside to get Lindsey’s affairs in order, that this story would move fast. I watched the oversize clock in her room with its overloud ticking, all the time cursing and cherishing every tiny fraction of time. Surgery would be revelatory. We believed in this shaman.

In the sterile waiting room outside the surgical unit, I remembered to eat – a healthy salad, too much chocolate, a triple espresso. The tv on the wall softly chanted inane promises of exciting romance, clean kitchen floors, dry armpits, clever back to school lunch ideas… She was dragged through a hole in the world that was closed off to me the moment she passed through. I stared at the blank space. Whatever salvatory magic was happening was happening now. I had only to wait, eat, wonder, dread.

And then, just as suddenly, the door swung open and Lindsey was back, talking — talking! — and being rolled out of surgery. I quickly texted family and friends, faithfully repeating the surgeon’s pinched statement, “We think we got it all.” I didn’t have time to parse or pray apart the words. Walking the hallway back to her room, I held tight to her warm hand as I trotted to keep up with Lindsey’s stretcher, tugging on my heavy bag. I dodged out of the way of other stretchers, hospital staff, and visitors, and her hand briefly pulled from mine, then I quickened my pace to catch up again. “I’m right here, hon. Right behind you now. Surgery is over.” I praised the exorcist, damned the tumour, bid it gone.

A day or so later, back on the unit, the whole hospital appeared to vibrate, whether from doubt, exhaustion or effect of inhaling smoke through window vents, something unspoken crept in and hovered at the edges of certainty. Her bed slowly churned to prevent bedsores. I followed useless fearsome time on the clock in her room. The smart watch on my wrist traced minutes, my heartbeat, and lack of exercise. Its frequent admonishment to “move!” seemed less like encouragement and more like instruction to flee. I circled the halls under cover of night while Lindsey blessedly slept. I came to know other darkened rooms — their outlines and shadows. I silently witnessed family members, heads laid on bed-sheets, slumped over in partially reclined chairs. I didn’t need to see faces to know features were clouded, dried, hollowed out like mine. I retreated from the religious privacy of each bedroom’s tableau but when I washed in the sink of the public bathroom, I saw them all in my own reflection. I changed into the underwear and shirt stored in my backpack, tried a little makeup, ended up smeared, shadowed and even more ghoulish from rubbing mascara into eyes puffed up with lack of sleep and unshed tears.

Every day, I balanced brownies and cappuccinos with kale salad and thousands of steps up and down eleven flights of uneven dirty brown speckled stairs to Lindsey’s unit and back. On the main floor I haunted hallways in the predawn, water bottle in hand, filled with tap water and greens powder I carried in travel size packets as portable potions to ward off latest Covid variant, opportunistic seasonal viruses and all the other misfortunes which occupy hospitals in the wee hours. My smart-watch enthusiastically tracked and logged steps that went nowhere in this germy ghostly liminal world — a world I could leave at any time but felt tightly bound and bonded to. I paced back and forth to the cancer center, ICU, café and gift store; caught whiffs of smoky air from sliding front doors where cigarette butts and car exhausts smothered the no- smoking sign painted years before into the cracked concrete of the idling-pad.

As I circled the unit in pre-dawn’s stillness, I passed racks of neatly folded pamphlets and laminated colourful posters — all filled with promise, support and hope. Brain Tumour caught my eye. I ignored the stroke pamphlets and posters, the paraphernalia for those terrors I didn’t have to google, words my voice recognition would not need to learn, ribbons I wouldn’t have to wear. Four years into Lindsey’s cancer story, I was an expert in Walks, Hope, resources and ribbons, but the thought of brain tumour’s depressing grey ribbon, dull and dispirited against the massive stain of impending death threw me headlong into silent rage, followed quickly by barely contained panic. I didn’t want more ribbons or causes. I was a shell, no flesh left on which to pin one more rag of hope, no matter the colour. I haunted the halls in the early hours, rattling my silent chains, crying “unfair,” “why her,” and “what now,” bumping into all the unpronounceable and unspeakable demons also making their rounds, peering into unlit rooms, quietly taking up residence near the heartbreak of other families.

One more round, past low grey plasticky couches near the fridge where the packs were kept alongside technicolour popsicles and tiny cartons of milk no one ever seemed to drink. The couches near the sealed unit-doors, which required code or card to pass through, marked the beginning of lingering smells – coconut pie, abandoned coffee, homemade curry, all mixed in with pungent disinfectant. These couches are the 11th floor’s crossroads, where tradition, expectation and destination pause then flow into one. Stories would surface in the witching hour. A woman with a portable blender revealed her organic recipe for naturally healing her middle-aged son’s third round of glioblastoma; she also warned me against the evils of sugar. A man with braided sweetgrass in his hand headed down to the parking lot, after praying for his eighteen-year-old son, to sleep in the family’s truck. He was from a small farming town I knew: his family was missing the harvest. A woman in a sari, newly greying at the temples caught my eye and simply nodded. She was on the phone all night arranging transport back to India for her brother: she hoped he would make it home. They all raised their eyebrows kindly, cautiously, “and you?” My sister. Brain tumour. Ovarian cancer. My staccato answers could only whisper of the dark symphony inside me.

A sign over the longest couch said “Patient families do not sleep here.” So, we did everything but sleep there. We called our families and ate greasy takeout. We answered work emails and entertained children. We trauma-bonded and traded practical advice about where to stay, where to park, where to eat, where to bury our soon-to-be ancestors. We shared sweets, offered hugs, made dark jokes, gifted each other gentle silences when tears and blankness took over. But no, we didn’t sleep there.

I circled back to Lindsey’s room around five am, large English Breakfast tea in hand, fingers burning where the boiling water had slopped over as I walked upstairs. “Oh, you’re up! Bathroom? Sure. Ok, let’s get your slippers. And your walker. Glasses on. Now watch your feet.” The tumour had robbed her of half her vision, left permanent tremors, clawed disability across body and brain. “What is she doing here?” Lindsey asked, as I held her shaking hands and guided them to the sink. “Soap first,” I said, and washed mine too. “Who’s here?” I asked. “Mom,” she said, “Mom’s here. I keep seeing her in the mirror, stuck close to my ribs just here.” “Oh yes, I see her too,” and joined in our easy sisterly folly. It wasn’t difficult. We both saw our dead mother reflected in the badly lit, overly disinfected mirror in the patient bathroom, saw the folds and creases in her face become our own. And why not? Maybe the neurosurgery unit was the rightful home for ghosts of past selves and eviscerated legacies. Maybe the drilling, suturing and reassembling that occurred on that unholy ground produce nothing less than spectral flashes, mirrors of old histories and trailers of snatched-away futures. I dried Lindsey’s hands with crude uncomfortable paper towels. “Well, of course she’s here with us, where else would she be?” I added this to my stock of impotent spells that ward fear and future and failure away.

Each morning as the unit reanimated, I began my advocacy incantation, using the simplest of tools: a fading green marker and smudged white patient-board. I wrote: “Lindsey is autistic! Allow extra time! Check understanding! Support sensory needs!” Every person who leaned against that stained white board blurred the words and got green ink on their clothes, and every day, once again, I faithfully re-traced those letters and my out-of-town cell phone number. I grew hoarse telling each nurse about Lindsey’s sensory issues, her processing-time and her underrepresentation of pain. But they only saw tumour cavities, comorbidities, loss and impending doom. Lindsey called it autistic hell. She cringed in aural pain under constant assault from bells and alarms. Night gave no relief as the lively buzz from the nearby nurses’ station pierced any pretense of rest.

As the days passed, the drumbeat of continual checks and challenges wore Lindsey down; she retreated deeper into her private shell. There were glimpses of her old self still, as if tumour and personhood were battling it out for possession somewhere deep inside her. We watched every sunrise through the crackled film on her solitary window, blessed the fact that she was on the window side, and day by day watched the smoke disappear, the leaves start to change, and the foothills gradually accept the fall.

She improved enough to leave the unit and turned next to the promise of radiation. We escaped to the comfort of our aunt’s country home, closer to the mountains where a brief interlude of “normal” awaited us in the shape of an energetic black lab, three tabby cats, an end of season garden, and a combination of high dose steroids with triple ginger chocolate cookies. It was now October; the wind blew colder but some leaves still clung to the trees.

We placed our faith in a new shaman, a kindly radiation tech who gently handed Lindsey back to us at the end of each session. “One more down!” Lindsey brightly announced each time, “it’s really very easy you know. You get a warm blanket and just lie there while they do their thing then voila it’s over.” (It’s the Ativan, honey, I thought, as I blessed the tiny pills for whatever pittance of peace they brought her). But each time she was a little less steady, slightly more hollowed, and her forehead bore deep red marks from the tight-fitting mask.

Radiation vowed to cast the remains of the devil out, or so we hoped, but the tremors returned violently after a third round of radio-therapy. Lindsey was devouring homemade pizza and salad at our aunt’s dining room table. “I’m hungry, I’m eating!” she chirped. The dexamethasone made her ravenous, but steroids were the most powerful of the futile weapons we had to keep the swelling at bay in the space where the tumour held out as we waited for the radiation to scatter its magic. Then, suddenly strange words seized her tongue and uncontrollable shudders shook her arms and shoulders. And again. And again. “What, hon?” “Oh, I don’t know, just nervy” she said, but her eyes were wild with fear. This was a devil we knew, and once again it possessed her body in brief violent waves, then stilled her, leaving her just as quickly as it came.

The tremors remained – sporadic and terrifying – she would become suddenly unstable as they overtook her. Stairs were the riskiest. “Sit! Bum down.” My voice was firmer than I intended. She wobbled. I grabbed her hands harder but my grasp alone couldn’t save her. “Sit. Please. You’re fine,” more gently. “Grab my shoulders. I’m stable, you won’t hurt me.” But I was half out of my slippers and cursing my stupid decision for wearing slides at a time when I was almost always walking backwards. We walked like this through the weeks of October, a silly slow seventh grade dance – her smiling at me trustingly and swaying just a little bit out of time with the music. I held her hands and guided her down the stairs one at a time, step together, step together, “it doesn’t matter how long it takes, let’s do it safely and carefully.” As if coaching alone could ward off falls, injury, ravages and further damages.

Hopeful words tasted sour and powerless in my mouth, but I said them anyway when I knew she needed to hear them. Sometimes it felt more like seeding something poisonous. I had always been a terrible liar, and I couldn’t look directly at her with this caustic lemon hope-speak puckering my tongue. Run up the stairs or out the door to escape the horror at this point? Impossible acrid hope. We were trapped, linked, locked, sitting side by side, two steps from the bottom.

As October drew close to Halloween, I scared her with the most frightening words, repeating her oncologists’ and surgeons’ incantations: “terminal, palliative, no cure, goals of care have changed. It’s time to focus on quality of life.” These were the musty warnings at the beginning of every ovarian cancer movie, the ones everyone hears, and promptly ignores, choosing to believe that theirs will be a happily ever after, after all why not, it’s only a weekend away, a brief sojourn to the mountains…

But after radiation and repossession, more vision loss and disability, these were the words — palliative, terminal – that crinkled her face, turned down her mouth, and tilted her head with slight disbelief. I rattled on — “it doesn’t mean that you’re going to die, you know…” (shut up, Paula, just stop, I kept saying to myself, but I couldn’t). “Words aren’t that powerful (right?) It’s all about focussing on you, the patient, and what makes you happy…” “Oh, I like that!” she brightened. This was my only power – phone calls, disability funding applications, letters on her behalf, organizing (so much organizing), pleading, hand-holding, meal preparing, medication doling. I made lists of experts and agencies and supports and teams and plans and ideas and last-ditch efforts I knew would not be worth the paper they were scribbled on. I called on all the high gods, but ribbons would not be enough to save her. I tried to represent Lindsey’s story as one who was overlooked, ‘unlucky,’ over and over time and again, but the gods weren’t open for business. So, it fell to me: “Honey, I don’t know why. It’s the tumour. It’s the damn cancer. You did nothing wrong. It’s just really rare.”

During sleepless autumn nights I heard whispers of my mother’s ghost, taunting, challenging, comforting, empowering and enraging me, “Lindsey’s falling through the cracks, she’s falling through the cracks.” No, she’s just falling.

Those briefest of hours when I should have been sleeping were haunted anew by snarling dogs. Wiry untamed beasts of Capacity, Choice, Suffering, Ethics, Abandonment, Hope, Future, and Right growled and snapped at each other, trailing fur and fury in their messy wake. They nipped and threatened, revealed wild faces that swore to tear me limb from limb. I waited until they stilled and collapsed in a matted pile, and as the last October hours ticked by, I tried to separate one monstrous head from the other.

Early on the last day of October, Lindsey woke from a bad dream. Her groan shook me from my own scraps of sleep — “what’s up hon, you ok?” Her dream came in twists and mumbles. “I was a rare book, with the pages being torn out, one by one.” Her words momentarily froze me but I conjured some nonsensical chatter, lead her to the bathroom and tucked her back in with kisses and hugs. She soon fell back to sleep and I took up my post on the pullout bed six feet away.

That morning, I echoed her oncologists’ weak offerings of the balm of rare and damnable praise of hope. “Some people do better than others…” (What the heck is that supposed to mean?) No one wanted to give her a due date, a plan, a prognosis, as if they themselves didn’t want to speak the unholiest words of profound disability and death. As if metaphors and hope somehow protected the doctors themselves from the contagion of rarest and most unfortunate patients; as if shadowy warnings and vague whispers were enough to conjure a real escape for those patients already damned. I now knew how this story would go. All I saw were cracks, cavities, danger, dread, and a fall, a terrible fall. The trailer of a yet even more ghastly sequel looped in my mind as November rounded the bitter corner. 

***

But sometimes even the scariest of movies still snag on a cliffhanger. The heroine, still with us, stares beyond temptation of hopeful escape to an undecided ending. Lindsey’s story continued in hospice where gentler spirits abided; the wild dogs settled. The tamer beasts of Capacity and Choice stepped forward and faithfully rested their giant heads, taking up sentinel on either side of Lindsey, guarding personhood and peace. It was quieter in the hospice, less desperate, less haunted. It was darker, bone chilling cold, but Christmas was barely a month away. The sunrises through her large clear window were stunning, thrilling; her cheery room was warm and filled with family paintings, fresh flowers, soft comforters and home baking. Lindsey told me that she felt like she was starting a new best-last chapter. Fewer pages, fluttering a little faster maybe, but a story worth telling nonetheless, and one where the lost and diseased parts of ourselves were imprinted and tended to, not banished and embattled. A place where old demons and well-behaved ghosts were invited to take up residence, pull up a chair, stay a spell, and see the story through.


About the Author

Advanced Certificate learner Paula Holmes-Rodman is an ethnographer, writer, caregiver, and patient advocate. She uses her expertise in narrative-based medicine and personal caregiving experiences to support cancer patients and their families. Paula previously joined us for a conversation on an episode of NBM Talks.