Alice in Chemoland

by Kim Bockus

“We are but older children, dear,
Who fret to find our bedtime near.”
~ Lewis Carroll, Through the Looking Glass

Dear, dear! How queer everything is today! And yesterday things went on as usual. I wonder if I’ve been changed in the night? Let me think: Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, “Who in the world am I?”  
– Alice

Two months into chemotherapy I begin to think about Alice and her Adventures, triggered by the toxic cocktail coursing through my veins and permeating my brain. Today I feel huge, towering, a giant who might crush the world around her with the slightest misstep, thanks to the powerful, pain-blocking steroids prescribed to get me through the first day after treatment. On days like today I can really get things done and feel invulnerable in a desperate sort of way, knowing the illusion of strength and energy soon turns into its polar opposite.

“What a curious feeling!” said Alice. “I must be shutting up like a telescope!” … she was now only ten inches high…she felt a little nervous about this; “for it might end, you know,” said Alice to herself, “in my going out altogether, like a candle.”

After the steroids wear off I shrink down to the size and shape of a rancid walnut withered and moldy with nothing but poisonous meat rattling around inside. As I search for the key to release me from my chemical prison I find comfort in Carroll’s fairy tale. His characters become my acolytes, my familiars, my friends and enemies — entities who peep through the fatigue and helplessness, lurching and plunging, appearing and disappearing with carousel abandon through my chemical-laden consciousness. Clearly psychotropic yet somehow reassuring visions that join me on my surreal journey.

The White Rabbit, chimera of a “cure,” is always elusive and just out of sight. He leads me down dark holes I’m not sure I can find my way out of. The Caterpillar is the doctor, inscrutable and grinning, who beckons me to partake of the mushroom that forms his very throne. The Cheshire Cat is a mystical being, an omniscient presence, able to show up at crucial moments to guide Alice on her path. The imperious Queen of Hearts is western medicine, wielding power over life and death with the constant threat of beheadings.

“Who are you?” said the Caterpillar…Alice replied, rather shyly, “I—I hardly know, Sir, just at present—at least I know who I was when I got up this morning, but I think I must have been changed several times since then.” “What do you mean by that?” said the Caterpillar, sternly. “Explain yourself!” “I can’t explain myself, I’m afraid, Sir,” said Alice, “because I am not myself, you see.”

I find myself mentally explaining to people how chemotherapy feels. My explanations become more and more elaborate and begin to resemble a Dr. Seussian world of plates piled high on camels who balance on tiny footstools and teeter on top of elephants. My true feelings are almost impossible to describe, and so many people lack the empathy to understand what I can’t express. Some of my feelings I never voice and the ones that I do never elicit the kind of response I am expecting. Are they unwilling to put themselves into my shoes, maybe worried they’ll have to get involved — or is it just too painful to contemplate their own mortality? The colorful Seussian pages fade to black.

“How fine you look when dressed in rage. Your enemies are fortunate your condition is not permanent. You’re lucky, too. Red eyes suit so few.”
– Cheshire Cat

The worst thing is when someone asks, “Aren’t you scared?” Who would blurt that out while I stand on the gallows with the hangman’s noose around my neck, or the guillotine platform with Madame Defarge knitting in the background? Or shout it from behind the greasy glass when I’m strapped to the electric chair waiting for the switch to be pulled? I’m mystified by the lack of awareness that prompts such a question. My vengeful side wishes they’d experience it for themselves and see what it feels like to have death standing on their shoulder sharpening his scythe day in and day out.

It was all very well to say “Drink me,” but the wise little Alice was not going to do that in a hurry. “No, I’ll look first,” she said, “and see whether it’s marked ‘poison’ or not,” ..she had never forgotten that, if you drink much from a bottle marked “poison,” it is almost certain to disagree with you, sooner or later.

During the year of chemo my default position is on my bed watching virtually anything on TV — Hallmark Channel or fine art films, it makes no difference. It’s the escape I need, the complete and utter erasure of the present. I’m flat on my back unless I need to drag myself to the car to drive to the clinic. I ask myself why am I not using this time to make art, write a book, do a project, do anything? The answer — receiving chemo is a constant 24/7 grinding malaise so intense it’s like being tumbled head-over-heels by a massive, malevolent wave in a toxic ocean. I’m desperately trying to breathe, to get that sweet, pure air into my lungs, but all I can do is choke down foul, viscous, poisonous water. Hanging on minute to minute is an effort. I identify with the horror stories of tsunami victims who were tossed and submerged in chemical-laden waters for hours on end before their rescue.

On the outside I look the same, and if I drag myself to a chair or the car I appear to be a normal person going about life as usual. This is cruel and misleading because people forget that you’re in a constant state of pain. Chemo is the closest one can come to being tortured without being trapped in a serial killer’s lair.

“If there’s no meaning in it,” said the King, “that saves a world of trouble, you know, as we needn’t try to find any.”

The medical profession calls chemotherapy an “infusion.” This has to be one of the most deceitful euphemisms of all time. The word infusion conjures up images of scented flowers from the Isle of Zanzibar gently suffusing the air as recipients bathe in a benevolent, relaxing mist. The reality is that it’s poison and it can kill you. The pharmacists who make up my chemo cocktail are “chemo bartenders.” It’s a harrowing job with lethal stakes for both parties if a mistake is made. The nurses who hook me up weekly wear masks and hazmat gowns to protect them from the chemicals. When I sign the waivers before treatment, the fine print makes it clear that these chemicals can give me more and different cancers in addition to the one I already have.

“Cheshire-Puss,” she began..” Would you tell me, please, which way I ought to go from here?” “That depends a good deal on where you want to get to,” said the Cat. “I don’t much care where – said Alice. “Then it doesn’t matter which way you go,” said the Cat. “—so long as I get somewhere,” Alice added as an explanation. “Oh, you’re sure to do that,” said the Cat, “if you only walk long enough.”

So a year of chemo has gone by apparently this is enough of the “first line” treatment that I can try something else. The doctors have covered their asses so to speak by following AMA protocols. At least I no longer have to undergo the vicious chemo cycle: two days of anticipatory dread before the treatment, one day of steroid-induced high, three days of misery after that (I call this “chemo shock” and yes I’m down for the count barely able to move) and at the end of the week one day of semi-normal life overshadowed by the fact that I have no energy to do anything but lie in bed knowing another treatment lurks just around the corner. At least the chemo seems to have worked and stopped the tumor growth.

The doctors tell me the next phase is another treatment with fewer side effects — an estrogen-blocking pill.  If this works, I gratefully (down on my knees grateful) bid farewell to a litany of chemo side effects…bile, belching, burping, barfing, bloating, bloody stool, blood tests, blood transfusions, constipation, constant peeing, diarrhea, dread, fainting, fatigue, gas, gagging, hair loss, heart palpitations, heartburn, icky laxatives, incontinence, nausea, platelet transfusions, runs, shitting a brick, and all the time sick and feeling like shit. Oh and don’t forget — everything tastes and smells funky, I haven’t enjoyed a single meal in a year.

Imagination is the only weapon in the war with reality.” – Cheshire Cat

So is it worth it? My overriding thought for this entire year has been that I don’t want to be here in this room with chemicals flowing into my arm, the syringe pinning me to reality like a butterfly to the baize backing. I want to be where I can see, feel and hear beauty — a frosting of snow on top of Stonehenge in the early morning light, a peach-colored moonrise over Joshua Tree, the joyful voice of my father calling out in greeting when I visited during his final years. 

Alice laughed…One can’t believe impossible things. I daresay you haven’t had much practice, said the Queen…Why, sometimes I’ve believed as many as six impossible things before breakfast.”

Last night I found out that I still dance in my dreams. In the most recent one, I’m at an art show. I walk among the rooms which are filled with colorful dimensional art and hanging sculptures, video projections and exquisite creations on all sides. I suddenly begin to dance, and I dance for hours. When I wake up, I lie in bed and re-live the sense of freedom and movement.  It’s the middle of the night when I reach for my phone and send a message to myself with Dance Dream in the subject line and three words in the text – “madly, bravely, wantonly.”  Sometimes all you need is a beginning.

_______________________________

My family and friends who got me through my chemo year are legion, and spread all over the world. Their support was, and is, like a thousand hands holding me and soothing me. The nurses who gave me the treatments were compassionate and caring beyond belief. Cancer is ultimately a near-death experience if you’re lucky enough to survive it. It makes you stop and think — who is this complicated, fragile, mysterious me? Even with old age coming on fast I remain a curiosity to myself, at least never completely understood. I’m constantly changing, mutating, unfolding and awakening anew to the possibilities of life. The quest for self is never-ending — in that sense we’re all heroes facing the unknown in the dark. One thing I do know about myself is that I have nine lives. Twice I’ve had close calls with death by water, twice by motorcycle, once by airplane, once by knife (not self-inflicted), once by infection and this time by cancer. I figure I have at least one life left so I’m doing my best to avoid getting the Covid-19 virus. Wish me luck, as I do you.

Kim Bockus

What is the significance of this work to you?

This work allowed me to distance from my wrestling match with death to a place of clarity and acceptance. It was a welcome distraction from the physical symptoms that pressed in on me from all sides. As a document of the most difficult year of my life, a year of intense reflection and self-examination, it prompted me to look inside myself in a way I may never have done without it. An unexpected reward has been the few advance readers who say it helped them empathize with family and friends they were assisting through chemo.

What is the significance of the form you chose for this work?

In the same way a song can take you back to a certain place and time, Lewis Carroll's books take me to a childhood place of curiosity, innocence and dreams. During chemo they were the perfect antidote to a grueling present, my refuge and escape. And Carroll has a way of explaining the big life issues, identity and direction, as if he were a Zen master. The whimsical, simple and sometimes inscrutable voices of his characters reached out and spoke to me, becoming the scaffolding of my story in the process.

What was your process for creating this work?

I wrote this piece as a series of emails to myself. Waking up alone in the middle of the night, filled with dread and plagued by insomnia, I channeled my fear into Gmail messages and found my way back to myself by the light of the cellphone. The story was originally a collection of disjointed musings on life, death and poison; when I realized their power and significance I overcame my initial urge to secrecy and decided to tell my chemo story.  

Kim Bockus is a lifelong photographer following in the footsteps of her father Bill Bockus — painter, printmaker and teacher. During a career that spanned the heyday of studio music her images of rock, punk and world bands were published in magazines and newspapers throughout the country. Her fine art photographs have been exhibited in the U.S. and England. Her approach to art is based on an understanding of life as symbolic, exalted, trivial and mundane, all at the same time, with an emphasis on the relevance of unabstracted, individual experience. Writing is her avocation and it’s led to the publication of numerous exhibition reviews and several poems.