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Six Lessons from Chemotherapy

February 23, 2007     

Starts with a cold; doc notices elevated white blood cell count, swollen lymph nodes.  Then biopsy confirms diagnosis: chronic lymphocytic leukemia.  Doc says the cancer is indolent.  Recommends watchful waiting.   

 

     

A New Kind of Weather

 

And so it comes to this:

a gray-white cirrus

trapped in the bowl of the Yuba’s

canyon green forest

and I stare down

into an impenetrable soup of air,

waiting.

It’s clear enough

the weather is changing.

The wind chimes go almost raucous

in their pentatonic scale,

as doe-brown, newly leafed limbs of oak

bend backwards in a sudden gale,

and three new words dance strangely

in a strained assonance

indolent lymphocytic leukemia.

They rattle about in my brain

while I stand still

before the coming storm.

 

 

Watchful Waiting, One Year Later, September 16, 2008.  

PET scan detects hot spot on 7th rib.  Lymphoma has come up through the bone.   Radiation treatment successful.

 

Watchful Waiting, April 16, 2009.

Scan reveals new aggressive mass behind and above lungs, transformation of CLL into diffuse large B-cell lymphoma.  Time is of the essence; it came up fast.

 

  What It’s Like

                        for Dr.Bill Newsom

 

The shock of being struck,

blindsided, as they say,

in the middle of an ordinary day

in the middle of a discussion

about wakefulness

with my son and his wife

when the Asian girl runs a red light,

hits us at speed just

as we are making a left turn

for the freeway home,

changes everything.

 

That’s what it’s like,

that piece of bad news,

that word coming at me out of nowhere,

the kind doctor’s lips still moving,

lymphoma,

the surprise of it

knocking me off course.

 

I get out of the car,

see the girl is in shock,

want to put my arms around her.

“Where did I come from?”  she stammers.

“My name is Shi Yi Lin.”

There are no easy answers.

She keeps touching her knee.

She’s a pretty girl,

with a lovely name.

 

 

No More Watchful Waiting

 

April 22, 2009.

Chemo begins a few weeks after removal of swollen lymph node in my chest.  Surgeon goes in through my back with camera, scalpel, and tongs. Deflates right lung, moves it out of the way; severs, then removes the lymph node.  Says afterwards that he got all of it.

 

 

Three-day recovery.

Day one:  Drugged.  Slept.  Helped out of bed to pee.  A hard stick in my back.

 

Day two:  Vacuum tube sucks air from lung cavity; with effort, lung expands.  Get up, take one step at a time; slowly walk down hospital hallway wearing white gown and blue slippers, hold onto silvery I.V. pole, jar and attachments clank against pole, metallic, cold.  Turn around.  Breathe.  Walk back. Collapse.  Take more pain meds.  Sleep. 

 

Day three:  Morning: practice taking deep, difficult breaths, inflating lung.  Afternoon: removal of tube; sitting on the edge of bed, nurse easing it out of my back; trying to relax; breaking out in a cold sweat; gripping the covers with both hands.     

 

 

I.  Chemo

 

May 7, 2009.

First day of “R-CHOP” infusion.  Bad reaction.  Chills and itchy rash.  It’s the drug, Rituxan, the “R” in “R-Chop,” the new one, the one that can kill you.  They stop.  Start over. Slow the intake; 800 milligrams looks like a quart jar of it; mixed and coded just for me; hangs upside down by my bedside; drop by drop, it enters me.     

 

Watching the slow drip, drip, drip of the drugs.  Puts me in a meditative state, understanding surrendering.  Nurse asks again my birth date, and I am reminded of the carpenter’s code:  measure twice, cut once.   

 

Total infusion time: 8 hours.

 

May 10, 2009.

Almost normal for two days; on third day, it hits, hard; eyes dry, sclera red; bright light impossible to bear. 

 

Start a sentence, lose the thread.  Doesn’t seem to matter.  I walk outside, eyes closed.  Feel the sunshine.  Carry my mind before me, hold my body steady, carefully, each is somehow now separate from the other.  I listen, but the world seems far away, out there, distant, like I’ve fallen into a gravity well, a black hole.  Sensations arrive like messages interrupted in transit, bound for elsewhere, clumsily translated.

 

May 12, 2009.

White blood cell count low, blood pressure very low.  Lost seven pounds.  Restricted to house.  No guests.  Immune system compromised.

 

Asleep.  I am asleep, yet I am awake.  Like the Mars explorer, Spirit, I’m hibernating, all systems down, on drift, watching: cold fog swirling around, on a distant planet, waiting for the return of the sun.   

 

May 20, 2009.

Walk fifteen steps, twenty, uphill, to front yard fence, mailbox.  Breeze brushes against my cheeks, my hairless head.  Stop.  Two cheerful notes, a bird’s song, a robin; stiff legged, he hops twice, alert, in the grass.  A squirrel crashes above us, leaps limb to limb in the treetops.  I close my eyes.  Listen.  Hum of insects.  Bees.  Big black bumble bee.

 

Mind somehow distant from my body, sounds filter through, the day an untouched pond, quiescent.     

 

 

After Chemo

 

It is what it is,

the facts

cannot be denied.

I am alive,

and I am witness

to the green sheen

of tree moss

in winter rain,

more green

than a lizard’s hide,

and soft and furry,

and growing outside

my bedroom window.

Because it can.

Because it’s the same

neither more nor less

than me.

 

 

II.  Second infusion. 

 

May 21, 2009

This time we are prepared.  Acutely passive.  Unresisting.  It takes seven hours. 

 

My body adjusts.  Gail, my wife, my advocate, is by my side with warm blankets; Gail reading from a novel, THE BOOK THIEF, a story told by an omniscient author, Death, who always does what needs to be done and explains why things happen the way they do. The dice are rolling.  I have no say so.  I go on drift.

 

Night.  No sleep.  Feel poisoned.  Everything hurts—arms, legs, chest, lungs.  At 2:00 a.m. I give up; take the pain meds; sleep. 

 

May 22, 2009

 

Drugged.  Slept late.  Functional, but harsh pain, sticks in my eyes. 

 

Lunch brings a sudden onset of hiccups. Food tastes terrible; will not stay down.  Everything hurts.  Throat aches.  Ceaseless bouts of hiccups. 

 

May 25, 2009

I begin to wonder:  how much does my body know?  Is it dying?  How much do I, apart from my body, know? 

 

Two sessions and I am discovering what the nurses refer to as a period of “nadiring,”  the bottom of the curve, when the killing is at its peak.  I imagine the drugs are killing all the rogue cells that my immune system couldn’t or wouldn’t kill.  The fight rages on within, and I can imagine all the dead and dying cells piling up, cellular waste, clogging the system, the waste of the war inside me, like trench warfare, a war of attrition.  All the dead and dying bodies. Is there a tipping point?

  

Gail shaves her head.  Her beautiful red hair, gone.  She places her life inside mine, comforts me.  Naked nurse by my bedside.  Two bald babies, we sail on. 

 

May 29, 2009

Feel breakable.  But Gail is also becoming fragile.  We must be careful with one another.  Her hair gone, she seems apprehensive, distrustful of attention.  We say we haven’t changed, that we are still the people we used to be, but we are each other’s mirror, reflecting fears.  How bad is it?  The telltale signs of just how we are losing ground.  Even as we struggle to be normal, the costs are visibly with us.  I fear some of our wounds will not heal.

 

 

Listen

(A Conversation with Myself)

 

If I told you, you have cancer,

would you separate out, body of mine,

from me, this self, this mind

that listens and argues for wakefulness

in all things? 

Take that orange flame of a rose

for instance, the one on our doorstep with a perfume

redolent of sex just before orgasm

when merging is the only possibility

before you have to separate. 

I think the mind is the flower of the plant

inside us.

If I told you, you have cancer?  You do.

You know it too.  You’re suffering.

But we are still whole.  Here,

let me comfort you: something happened,

a damaged cell, unrepaired, not your fault. 

Someday we will have to separate,

but not now.  Today we start to take this walk together,

you and I, a trek across the desert, carrying a back pack

of chemical poisons.  They are assaulting you.

I accept it, you must too. 

On a good day, our flower is open. 

Listen, I can spread my words on the wind,

for the passing stranger,

for the ones I love the most.

 

 

III.  Third infusion.

 

June 18, 2009.

Open a vein, get the drip going, watch the flowers droop, fall down in the weeds, wait for the hallucination; it doesn’t come; the doors of perception do not open.

 

June 27, 2009

Gail and I visit Berkeley’s botanical garden to see a blooming corpse flower from Sumatra.  Blooms once every four years.  Blood-red blooms.  Prehistoric. Smells like rotting meat.

 

 

Cancer

 

            Safe in our Sierra Nevada

cool mountain breeze, listening to the

hot tub bubbling around us, we lie back

pink in the last of the daylight,

watch a pale green praying mantis

strike a tai-chi pose, become a twig

an uninvolved stick,

a part of a leaf on the deck,

            and then as I’m about to speak

it happens:

the mantis, nature’s ninja,

blurs like a film in fast forward,

snags a black bumblebee from flight,

drags it to a sudden stop.

            But then the counter movement of life

swirls before the death bite,

and I watch the diaphanous wings

pull free.

            And as the black bee takes the air,

something inside me sees

a second chance,

the life I have not yet lived.

 

 

IV.  Fourth Infusion.

 

July 9, 2009

      Waking with a bad feeling.  Indigestion, nausea.  No sleep.

      Weak, wobbly.  Eyes hurt, bright light impossible to bear. 

 

July 12, 2009

Attempted to go to the movies with Gail, son Nate, and two grandkids, Nick and Clay.  On entering the darkened theatre, I suddenly can not see anything.  I stop.  Wait.  After a few minutes Nate returns, takes my hand, and leads me to a seat.  But then, as the movie starts, I can see again.  The movie, “UP,” a kid’s movie that seems to be about dreams: the ones you think you have that you can share, the ones you brought with you from childhood, the ones imposed on you from the outside, and the ones you actually get to have because you are who you are. 

 

I’m wandering about in a Berkeley fog, at night under reflected street lights, by Spats on Shattuck Avenue, and then later at People’s Park.  No one’s there.  And then at Cody’s book store after a poetry reading.  Empty.  Everyone’s gone.  Telegraph Avenue is also empty.  A lost location dream.

 

 

Promises To Keep

 

Fog falls over the coastal range.

Heat heaves off the ground.

At the end of the day, in waves,

cold, ocean-gray mists

drift down damp

over my green yard.

My eyes dim as 

I stand at the window

witness the blue shift

from sunshine to shade,

to impenetrable gray.

At the end, my grandmother was blind.

She shuffled through her house, her fine

gray-brown hair wound tight in a bun.

I slip into the life of this moment,

lose distance, perspective.  My sense of time

disappears.  Inside, in the quiet,

I wait for a word I cannot say.

I have gone on drift,

afloat in changing weather.  Today

the burdened old apple tree lost a limb.

Outside, a hawk cries out for its mate.

 

 

V.  Fifth Infusion.

 

 July 30, 2009

Drugs suppress my body’s reactions to the pain, the nausea, the vomiting, but leave me elsewhere.  Not here. 

 

August, 5, 2009

Have fallen into invisible gravity well, a black hole that no one can see, only witness the last event horizon, things that happen outside me.  Voices drift in toward me, but no one knows where I am, unseen.  All my normal habits have collapsed. 

 

 

Losing the Light

 

As if you’ve been thrown

like a stone,

skipping across moments

by touching

the surface tension,

the rings circling outwards

from where you have been,

leaving you behind

in the here and now.

 

Sinking, 

as if you are being pulled under,

beneath the surface of a lake.

 

But you are not drowning.

 

Only a seamlessly closing down

and the world is still outside

in the growing distance.

 

And while there is no pain,

there remains the ordinary day

all around you,

and so you ask your wife,

What happened to the light?

 

 

8/15/2009

Though dead and unhappy with his end, my father comes to lie down beside me to listen to my worries.  He’s put away his stand-offishness and become congenial, a friend, who’s willing to be understanding about my cutting classes and being unprepared for the final exam.  We lie together in our bare feet, unwilling to get out from under the warm covers.

 

Just who is this father figure?  I guess I invent what I need, forgiveness for being unprepared for the test before me.  My father, because I never pleased him.  A poet, I could not be the football star he wanted.  We fought until he died.  Now, 15 weeks into my chemo therapy, he visits me in my dreams. 

 

 

January in August

 

This is no time to be struggling

in sand.  Seasons are mere smudges.

Erased like ashes on one’s forehead.

Dreams fall through these empty nets.

There is no reason to wait

for reasons to become clearer.

The moon will have its way.

Whenever I choose to think, drifting

deeper, that I can give in,

or purchase a peach,

or not see or be

willing to understand,

I come back, and I almost remember

the way lizards and skinks sleep

and wait to lie in the sun

above ground,

and I tell myself    nothing is wasted,

forgive everything.

 

 

VI.  Sixth Infusion. 

8/26/2009

Day 7 of my last infusion.  I lie down.  I stand up.  I lie down again.  I wait.  I don’t feel like this is end game.  Not yet.  But I do feel as if I’ve been yanked out of my life, like a fish pulled out of water, trying to find my way back into the stream.  So one more week, and then my PET scan, and we will see what we will see.

 

How I feel:  like water turning, just beginning to spread out, running uphill, no wind, but running uphill, beginning to flatten out, pebbles glistening under a flat surface, yes, steadily rising from an upwelling pressure, from increasing volume, seeping upwards, percolating, yes, new cells rising up, yes, from my bone marrow.

 

 

Grace

Appearing in the sky, a great

gray-blue heron, size of a small child,

drops down out of the wild, lowering

feet, knobby knees, and he swings

in a backwash of wings to a stop

on my rooftop.

Next to the chimney, on stilts,

he flaps once, then smoothes

his near-black feathers

into a tight-fitting coat

all around him.

            I sit and stare.  I am not alone. 

The oncologist has phoned.

My scans are clean.