alive

A journal of our survival. Fighting Cancer, Lonliness and Hunger...

Wednesday, May 19, 2004

Pretty in Eyebrows

So in retrospect it could have been in any of those countless of deep summer days, spent in the tall park grasses, looking at the crazy people between sessions of engrossment into depthless pages of Foucault, Diderot, or even Vonnegut. I could have recalled any of them with vague and pointless detail, but instead I chose this one to dwell upon and further drive into the conscious bastions of thought. It was this piercing summer day in the park that held on like a regret shaped icicle.

This was the park with the pitted pavement, where I learned to ride my training wheeled bicycle. It was this crab grass knotted knoll where I sat with big sis and tried to read; to the tune of red fish, blue fish. It was the sandy paths and littered tree bottoms that my mother and I first walked when her dear husband passed away; and my father fragmented into a mantelpiece ornament, scattered photographs of faux human poses, and the toothbrush that took damn near a year to find its forgetful way out of our bathroom cup.

It was the same set of three swings. They sat next to the gate, mere feet from the lazy afternoon street, slick thick rubber seats, shined for little asses, and chains laminated to protect little fingers from biting rust. I sat here too when my legs were short enough to swing, when I would flail my little feet hard enough to get some momentum to see over the fence and into the world it protected me from.

But today, here on some warm rock in a city park, I feel like the glowing capitalist Buddha. Full lotus with soft drink names wrestling on my tongue, their citrus twists eloquated by a Proustian like nirvana. How can I come to enlightenment when my proudest memories are cut from associations like park swings and popular children’s literature of the era? Has the great Theodore Giselle hijacked my family recollections with his wacky doodles and witty pronouncements, leaving me with only catchy phrases and sitcom tunes to show for growing up?

I need to stop and somehow grope for something real, an anchor to my identity. I’ll write a bit about modern romance (there is none), and I might sketch out an adventurous story about how a man chases a wounded metaphor all over a dirty little city trying to save her from herself and in turn drawing the precocious entity into his own being.

This is like drinking… I need a subject…

Panning left I catch wind of a middle aged dog walker, rubber mitten on to catch a stray pitch that seems all too inevitable as the mutt throttles at its haunches nearest to the rhododendron side of the shrubbery. I could write a book about dog crapping, little bits of scat-poetry or fun euphemisms for puppy dumps. I could sell it to this woman for sure; maybe add the cost to her subscription to Dog Fancy or some other irrelevant niche advertising haven.

Turn to the cute girls in the water, in their new bathing suits and dryer sheet reeking towels laid out on the sand with their wet butt prints holding them down. They giggle and gossip, rub on some sun lotion, arch their legs gracefully when reclining and make kissy faces when the lip gloss is applied unevenly. I could write a book about their friendship and how it transpires five, twenty five, eighty years down the road. They would buy it, but it might just be too late for me to make enough of a cut to get my kidneys dialysized.

Everyone is just such an actor here. Maybe even me, sitting on the hill and scrutinizing everything below me, playing the role of a disheveled depressive writer who puts on a brave front like he knows what the hell is going on in the world. It a façade of control that the performer tries to exude as he stays the stage in the event of major catastrophe, or in this case a tragedy of perspective. Everyone here just an eyeshot away from being figured out and analyzed down to their very particular and predictable parts. Everyone just players in the grand scheme of… wait…

There she was; her hair, like some fluid cacti, aggressed by the hot breeze of some arid-temperate sandstorm. It held for a moment and was back to brown strands across neck, to the brim of a nape. It reacted like an inverted mug of coco, wild with non-dairy creamer, highlights of softer brown in unstirred drape.

From my hill, she was made of a top of a head, a right arm unsheathed to the elbow, fingers cradling the latest paperback thriller, or a witty coming of age novel, of the autobiography of Jesus.

No! It’s Dharma Bums instead, yet rightfully from this distance I can barely tell if she is merely smelling the Kerouac or reading the frayed edges of the flowers surrounding her. I’m imagining fragmented sonnets under the magnifying glass, chapter-ettes scribbled out in .5 pt Times New Roman font; it would shimmy down crocus cilia and wrap its way up the woody stems of tulips. Rosy red stamen, erect to casual sunshine; Camus printed lengthwise, in sonnet like explosions of flower sex glands and glorious French surrealisms.

Turning over each petal, each plump frond; sucking in the prose like nectar from her palms. It was split columns of Ellis spread out in a five mile line, replete with simplified punctuation, wrapped like a gooey decal around the trunk of the old Dogwood, spiraling literature to the warm heavens.

Her eyes flitted over my dog walker, my bathing girls, and even a stooped man that I had somehow missed, tucked in the lilied gazebo with Walt Whitman at his hip. His eyes were sharp and green, and even with his hands tucked between gnarled knees, his humble look did little to disguise that at any moment he could toss out a quip and wrestle you down with his great expanse of poetical notion.

That is when the rain starts, and in cuing that weather was a brooding haze of summer sky. It was rife with blown dogwood blossoms, sand gritted grins; born of a thundering humidity tipped to its side to begin seeping its mixture of ripe dewy rain.

The Dandelions tiptoed as their faces were pattered with that drenching summer stuff. Leaflets hopping like tight drawn leather drums to the falling drops whose pace now quickened to a meaty downpour.

All my people scattered with papers over their heads and purses and laptops under their arms; rain biting their tidy faces and manicured moments and picnics. It challenged their love of the outdoors, forcing them again into flight and alienation in slick mobile homes and furniture cramped saltbox houses.

We are finally alone; me on a damn hill in a stunted city park, cataloging a girl with her shoulders drawn, warming from the rain and keeping her dog-eared tome from the pressing weather.

Is she realistically this beautiful? Is it a crude variation of psychosoma that draws her character to me, like some transposed mirage of what I need in my life?

Can she sit in the cold pissing rain with a wet book under her thigh and wipe snot from her eyes and be so beautiful?

Rain blots entire words from my notebook, but I’m so taken, I want more than just breathy contemplations on my yellow paper. I want to watch as she ties those little brown shoes in the morning, or when she takes them of and curls her toes with a big yawn.

It’s an anticipation that broods for me, like a quiet room filled wall to wall with trepidation, something needing to vocalize out of midair to keep the world moving and to keep the walls from dissipating out of non belief.

-

Then, seeing her just weeks later, outside of a coffee shop window, walking contemplative steps; over a berm, across a sidewalk and out of my life. It was me knowing all too well that I have shared more with her than anyone in my life, in just that simple glimpse that seemed to say good bye/ do I know you.

How would it have been if I had instead taken that wet wooden seat next to her, the one that sat barren in the park. I could have told her this stuff, given her my notebook, something, extolled my passionate speech about the shallowness of humanity and how I knew by the way she watched the flowers that she felt the same way, and that when I saw her I knew that she needed to be in that moment of my life to make me real and awake.

Would she have cuddled with me in that sonorous rain storm, sitting next to one another with our papers in one pile, her “On the Road” in a wet stack with my “Slaughterhouse Five”?

I couldn’t tell her then if we would travel Europe on motorbikes, living in abandoned castles, or holding hands in ivy trussed villas. Whether we would just meet again and again in the little knoll in the park and read poetry to one another, backs to the dogwood, and me getting up enough courage to ask her if it was cancer that took her eyebrows away from her.

I would say, that either way, it’s nice not having something distracting me from your eyes.

Sunday, May 09, 2004

Everybody's got cancer

Everybody's got cancer, so what's the big deal? Some just deserve it more than others, I know I do.

I deserved to get my life together, to stop throwing up after every meal, to stop filling my insides with processed garbage that looks like it was regurgitated by a fairy penguin, to stop being lost and lonely, let down and hanging around. I deserved to find my soul mate, to have him clean puke out of my hair, to tuck me in and read me Senor Lorca in his sensual Spanish or to look into my eyes as he finished Rilke in a harsh German accent.

I think I even deserved the packages, the presents, the cards, the concerned looks and... secret gifts that I don't think I would have ever understood if it wasn't for the mutated cells still slinging around my lymph nodes. And... What if they're gone (?) What if this was my fifteen minutes of fame (?) What if this was my future (?) and it is slowly coming to a halt.

- Do not unfasten your safety belt until the ride has come to a complete stop -

I'll wake up tomorrow, swollen throat, tried eyes, restless soul. But will my life? Will it be gone? maybe evaporated like a can of milk that is only fit for the runt of the kittens. The impermanence of life is abound, yet my footfalls are no longer heavy and weighted with the frame of a middle-aged soccer mom, permed hair and cellulite.

And she thought - Avocado green dresses on a budget, any Jew would know that's enough to live for, even if he did miss his own circumcision.

There is magic everywhere, in the heart, in the mind, in the body. Chamomile candles and lavender oil, afternoon naps, and forgotten fights, macaroni and cheese with a hint of garlic, and piano love songs muddled with spicy chinese. (Where was the ring?)

This kids got heart, and she isn't afraid to use it.

Wednesday, March 31, 2004

Cancer Group

So the idea was that we try out this new cancer group; it was all about mindfulness and alternative approaches to self care. We got to sit down and hear about aromas and glorified foot massages and how flowers vibrate and heal the blackening monsters within you. Ya, it’s true, we donned our chairs, smelled scented oils passed out on our palms, let big brass bowls vibrate on our bellies.

We started by each chanting our own mantra’s of disease and treatment, of loneliness. Maybe that part was indirect, maybe nobody talked about loneliness right out straight, but I see right through. It’s why we are here right? Caregivers, you feel like something is slipping away and you want to hold the hell on. Survivors, remissioned and currently treated, your isolated, I can taste it in the room. People treat you with a different side of their face now, now that cancer has planted it root. They treat you with pity perhaps, afraid to know the real person who might just fade away at any moment. Maybe it’s the public’s way of defending their fragile psyche, and undoubtedly it works as a wonderful short term excuse.

The problem remains that cancer affects us, and lives with some of us for the rest of our lives. It’s strange to know that even though this silent crawling menace has let me be for the meantime, has not spurted its sap nor bloomed its varicose buds in my glands or organs, it has still touched me; truly it will sit with me forever.

Hand me some bottled water, throat gets tight with so much doom in the room. Ms. G has but one breast, Ms. B, but a mere fragment of her large intestine/colon. Ms. K you just found out what’s new and happening with your body, what that lump was.

I just want to hold everybody, caretakers and coordinators, bowl brushers and oil pourers. I want to tell you something wonderful and dramatic, something that can teach you to put down being sick and disenchanted. I want do something more than “Caregive”. I want to sob into my sleeve until all this pretension to disease fades into a speckled history and to heave tears into my shirts musty cotton cuffs until cancer gets sad enough to leave the room too.

Maybe that’s just what support groups are all about…

Monday, March 15, 2004

mad march

Wheelchairs and air tanks,
Johnnies and gurneys,
Patient lifting belts,
Bedpans and IV’s
These are a few most commonplace things…

Chirping of nurses,
Chiming heart monitors,
Buzz of an x-ray,
Whir of a centrifuge,
These are a batch of most ominous things…

Bone scans, and spinal taps,
Probabilities and PSA graphs,
Limb reconstructions,
Letters and epitaphs,
These are the thoughts of the most morose of things…




A beat can consume you. It can play in your mind, out of muscle memory and a tracer of fired synapse. Maybe it would go to a healthy 2/2 rhythm, one and two and, one and two and, one and two and… It can eat up a whole day before you know it.

Now syllables. Can – cer, one and two and, can – cer, one and two and. It’s like the downbeat of a drummer’s anticlimactic ending, cymbals a clashing. Bang, boom, one and two and, can – cer, one and two and.

So now it’s a real song your head, and it’s your own song about everything. It’s your life now.

“Conductor! Conductor? Yes, it’s just that I’ve broken another string on my tired instrument, and I’m having a difficult time continuing this piece with only half my stings now and…”

- SILENCE-

“Conductor??”


And the band played on and maybe faster than ever. You sit fingering your instrument, making up for those missing strands by playing from the heart. All this just to catch up, to walk along side of the rest of the world. No time to practice, no time to step out of the circle. Mom and Dad are watching, so get the hell to it!

One and two and, one leg – two leg, Can - cer, one and two and…

Suddenly you realize they were playing your song all along. Tuba tap… The mortality section, pipe in and shoot us a fitting piece, a jazzy little riff.

Doo – Wap,
One and two and,
Can – cer,
Woop – e – doo

Now its in a 4/4 beat, can you keep your sheet straight? Hot damn… The girls do the Boogy Woogy on the corner of the street, legs are getting you beat, but you keep dancing. Legs raw with tapping your rhyme, and keeping time.

The music stops, and it hasn’t done a damn thing to the monster under your skin.

I feel helpless watching. Yet you march so intently. But remember you don’t have to do it all alone, who loves ya baby.

“Conductor!? I’ve done it again, another string, I’m hoping all over this one goddamn string, jumping frets like leaping stones.”

AND THE BAND PLAYED ON…

Saturday, March 06, 2004

Overachievers Anonymous

I met a young woman at our support group a few days ago. She seemed approachable though quiet. Something about her made me think she was stronger than someone her age should be. I placed myself in the circle so that we could be partners. This is her story. Her name is Ella.

When Ella was 7 she went to her brother’s last homecoming football game. She stood frozen and shivering, nursing a 25cent hot chocolate, watching 17 year- old girls be escorted out of beautiful cars, one adorned with a sparkling crown. She started referring to them sarcastically as “put together” girls, though she secretly wanted to be one when she grew up.

Ten years later, Ella stepped out of a car on that same football field. This time she stood frozen with anticipation and shock as they placed the crown on her dyed purple hair. As they drove her off the field she saw a young girl waving and she wanted to say ‘run away. Run far, far away’. She thought to herself, maybe I will be put together tomorrow.

Ella decided that she would go away to college. She thought a football queen needs a football town, so she packed up her room and moved away from home. Skepticism was abound - what was a small town girl going to do at a big school with 40, 000 people? Ella said I will be number one when I graduate, and left doubt behind.

She studied far more than she ever partied, but was somehow known among many circles of friends. She always had a relationship that appeared to be doing well, and heard many times that she was the cutest half of everyone’s favorite intellectual couple. She worked with kids in the summer and volunteered in the winter. The awards and scholarships started rolling in and everything seemed to be in place.

Ella graduated number one, walked first across that stage with tears in her eyes. Everyone thought it was because she was happy, but Ella knew the truth. She had failed. She wasn’t anymore put together than that 7 year- old girl with pig- tails and crooked teeth. (Her therapist later in life would tell her it was because she lacked the ability to believe external recognition and needed to internalize her success.)

After graduation Ella moved further away, off to pursue some new age concept, tired of stuffy academic circles. I wonder if she did it to run away, so no one could figure out that she didn’t have it together. Either way she once again excelled. Instead of feeling proud of her success, she joined our support group.

Ella was articulate and told her story like she read it off the back of a blockbuster video. I wondered why she didn’t like attention or love the chaotic drama that she always seemed to come out on top of; so I asked as we put on our coats and they turned off the sterile fluorescent lights.

She looked at me and without the natural warmth and empathic tone in her voice said “do not go into the streets, emotions are a communicable disease.” I stood confused as she walked out the door and crossed the dirty street.

Two days later, early in the day, I saw her at the hospital, laughing on her cell phone in the parking lot. She looked confident and self -assured, and wore a shirt that said STRANGE across the chest. I smiled and thought it must be nice to be young.

Later that day, I saw that shirt again in the radiation wing of the cancer center on a delicate girl named Libby. As I wheeled her out of the treatment room she was crying softly. I asked her what she was thinking and she said she might never be able to have children. I asked what she would name a child if she had one and she looked at me without flinching and said “Ella”.

Thursday, March 04, 2004

That roller coaster ain’t got nothing on me.

I felt overwhelmed and lonely, perhaps depressed and inadequate, maybe giddy and overcompensating. I offered him a drink of my water. He gently declined. And I said with a smirk “Baby, you can’t get cancer from a straw.”

Let’s face it, I was pretending.

I felt anxious and awkward, perhaps irritable and self- conscious, maybe frozen and numb. He said “what is wrong?” And I said “I have cancer baby” loudly enough for the whole café to raise their eyebrows and dismiss me as a drama queen.

Let’s face it, I was a bitch.

let your hair down

At the bathroom mirror, running a few damp fingers through her dark brown hair. It volumizes and groups together, like wet fronds of ferns. Only gentle fingertips kneading her hair into shape, into full form. The perfect haircut everyday, no split ends or even a lost hair in the sink. No shampoo bill at the end of the month, threatening to shut off your supply.

The muffled beat of a Ani Difranco song, played somewhere in the background, behind a half open door. Linoleum and toothpaste marks, booming the song in vibrato. A toe tapping weakly every second or third measure, like the cymbals in leisurely marching band. She takes another look in the mirror. All seems rather normal...

...
It would be ideal if healthcare professionals could treat only the areas where the cancer is present. Unfortunately, that's not always possible. Because healthy tissues also may be damaged during chemotherapy, treatment can cause some unpleasant side effects. Such side effects vary from person to person, and may be different from one treatment to the next. The good news is that most side effects are treatable.
...

And the good news is...

You have to wonder if life choices are somehow just a way to chase side effects. The hunger of the belly, loneliness without a partner and the purge of the loins, all a dance of withdrawal; of habit causing substances.

Yet somehow, you have come all this way. Somehow you can smile every morning at me. You still find the strength to help plan a future. You continue to love with warm blue grey eyes.

...
Pain is your body's way of telling you that something is wrong — so don't ignore it. Tell your doctor how often you are experiencing pain and how severe it is. To help you talk about your pain, remember these terms that describe the different types of pain:

• Dull ache
• Sharp stab
• Burning
• Throbbing

...

And the good news is...

There are a few things missing off your list Doc. You left out Helplessness, fatigue oriented Disassociation, Disorientation... I could name a few more emotions that don't yet have a pharmaceutical cure, just so you don’t forget. Let’s talk about human costs, and human effects.

In the hushed dark of a emptied operating room, ill gather with you in the white jackets and alabaster scrubs, and listen as you metamorphose into human piloted bodies. You’re out of your masks, and leaning into each other like amazed children. Your playground song;

Allouette, frele Allouette,
Alouette je te plumerai,
Je te plumerai la systeme lymphatique...


Among it all, you shake your linen covered faces and say she is a fighter. "The kids got heart; the kids got heart"...