Eroding Layers of My Body: exhausted and radiated

Some weeks are just hard. Enduring the beatings of treatments with side effects that hurt now and may have permanently harmed my insides. The invisible me – the parts no one can see but me and my oncologist and a radiology department I’ll never meet but whose hands sign off on the findings of my PET and CT scans. My oncologist may agree or disagree – he knows my beautiful bones and organs on site. He has seen more of me than I myself have.

Think about having someone you don’t know very much about personally know so much about your life – your physical and emotional makeup and yet maybe you know they have a daughter, they’re married, how long they’ve practiced and the clinical trials in which they’re involved. That’s about all you can know. Why is that? It’s something I’ll never understand – it seems rather unfair.

I’m a patient advocate for Living Beyond Breast Cancer and I want to give people who may need a more than just tweet service or blog posts. Not that I’m less than brutally honest here. Rest assured you are deep diving into my life, swimming in far more water than the kiddie pool.

I sincerely hope my blog posts help as a better form of communication for me since I have a crazy sleep schedule and I’m on pacific time. Between my night 🦉 husband and cancer appointments, treatments, advocacy, my blog, social advocacy and attempting to live with this shit disease I’m way more available with asynchronous communication. Twitter, blog posts, and text communication work to interact with my virtual support friends. But I’m feeling the love of all my support sisters and brothers. God knows if I lost another one of them my heart would break wide open.

But I can’t shut dow and say, “oh, that sucks and it hurts,” just as much as if I had met them in person. With MBC it’s so different and incredibly difficult to travel anywhere requiring a flight especially with COVID19.

I have an open house policy for anyone of my friends who make it out here or want to get away. Im so lucky to have moved out to the Sierra foothills of Northern California last year and we have a beautiful home with an awesome hot tub overlooking mountains and trees and lakes and birds, and deer, and foxes and my skunk Mr. Waddles, who lives with us on the property we share together. He comes up to my kitchen door and waits for his veggies and fruits every week. Little stinker – and he’s not afraid of me. I often wonder if the animals all know when there’s a sanctuary without fences or any kind of buffer to keep them out. I even love our flock of iridescent blue-headed wild turkeys though I wish they were a little less sloppy about kicking the crap out of my rosemary and lavender. We don’t even kill spiders. It’s not fair.

But I digress… when this Covid bullshit and tRump nightmare is over I hope people will start to come visit- it’s so very peaceful except if my mad scientist is busy with one of his projects. But it could be worse.

Radiation is worse. It’s the worst therapy I’ve endured thus far. It’s caused pain, not relieved it. It’s going to hurt more than help so after I get a green light to take no more, i am through with this evil of all treatments. The dead exhaustion is worse than I’ve ever known. And I feel it ruining my abdominal organs. The L4 vertebrae gets radiated via your front not your back – my Achilles stomach. Every time there’s a cancer flare up my tummy is the first responder. It takes on all the risks. And I’m no longer willing to give it anything that will hurt it anymore than it’s already taken on for the team.

Here’s a poem to wrap up my shit week – the one I posted before this is based on a true story – it happened in 2016 a little more than a year after my diagnosis and when I started this blog. I just got my congratulations you’ve been on WordPress for four years. It seems like much longer…

A day and a Night

My layers upon layers of sleeping, dreaming, eating,

The pedantic must do’s of paying bills and taxes,

Especially the rate of relationships some more expensive yet all dearly priceless.

All of our layers come as a surprise

A few recognized

Many in disguise.

Adding up the hours, the days to equate to life:

Yet there’s nothing even about anything

As one layer thickens as some erode away.

Some the color of iron warp

To swaddle to blanket the others

Waiting for a turn to bathe in the sunshine

When we haven’t got time.

Those colorful striations of existence

Don’t we know they’ll just have to keep for now

Beneath the drifting snows of sanity.

Yet without becoming buried in blank acceptance

For whatever was seemingly so pressing on me before

I tell myself “it’ll keep” or suffocate under my own duress.

Yet my words find a heart

And mind to translate context

And in this virtual morass of tongue and text,

I can hear myself scream in a vacuum

Where my verse finds a way to meet the next

Pair of opened ears and piqued senses.

Hearing the perception of other voices

But through clearer eyes understating

This page read from multiple choices, and yet,

There’s never any fear of rejection.

Not here not now. My team pulls the weight

Beside me – attached to some antiquated carriage

Inside, the cargo more precious than we –

We who fear the shame of awareness

When we pull the quill away from the page

And the blinders fall away revealing our periphery

After the shock of daylight, clamping

Down on the bit, metal fit into our mouths

So not to release the screams

As the whips tear at our backs

Leaving open cut and scars at our seams.

The team free from the sentimentality

Loosed from the harness of our own intent

While our words run wild out of the pen and gallop into the daybreak

Where the words speak free.

Put the verse out to pasture without our consent

Those invisible hands hold tight the reigns

l become bridled by imaginary disaster.

Will I find a gentle rider to settle down my wild woes?

One who doesn’t beat out the beauty

Or strike me with cruel force.

Instead please feed the verses apples and sugar cubes.

For today anyway, let the carrots and sticks wait.

The True Story

His polished apple green eyes shone beneath his hat brim

The color of a clear blue sky.

A white shirt covered his chest up to his chin. Queued in line that day

And to tell you now the truth of what I found

While I stood impatient and late

In a restaurant now burned to the ground.

Instead of the usual hello or how you’s

I heard the voices of my ancestors all in harmony

In his message undisguised, I heeded the lifelong call.

From the back he He smiled at me and said, “you’re blessed.”

And then he turned around

Where he looked from the front back to me

And he said these words without speaking.

He looked at me and I thought I’ve seen him

Some familiar faces come calling

Some voices the echoes of all time

And I never saw him again in a crowd

Or alone in my dreams at night.

He stood ahead of me and whispered as

He smiled at me, “you’re blessed.”

“Keep talking and writing. Never come to an end. We are watching over you, we hear your every breath.”

“We know you and you’re blessed by god,”

And I said thank you after he said god blessed you to me

And I repeated his last few words.

“Next!” cried out the counter man

Startling my mind from a state

I felt neither here nor now

He ordered a sweet tea and paid

Then took number 81 and he moved left to wait to be called.

I nod to him he nodded as well, he’d already done his calling.

Ordering now paying for my number 82, racing to wash my hands and back

Yet no time had elapsed: when I returned he was gone.

The man behind the counter called out, “81!”

A family of five all hurried to take their grease stained brown bags.

And I looked for him

A sky blue man

But my memory’s all I own.

His skin was the color of every race

His face was ageless and clean

His clothing impeccable

No creases or wrinkles

In his body or his clothes

His hat sat atop his presence

Like a halo or something above his flawless essence.

He may as well have been carved into marble

By the hand that moves the stars

And he disappeared into the sunlight

Before I could ask what right I have

Why me and not someone else?

I felt undeserving of this day

The Beginning my lifelong gift

To lose every fear I’d known of

The pain of my terminal illness

But the ache in my heart vanished

Along with the smile I saw on his face

He brightly shone

Like the mid day sun

And no one heard his name.

When an angel speaks

A message

To you and you alone

Listen and let doubt melt from Your mind

If someone helps carry you home.

Don’t laugh in the face of the messenger

In a moment I understood

That life on multiple dimensions

Can be known but can’t be seen

And god steps with us in the path we take

Be kind and be loved and give what you know

To the world and receive every dream.

The day will come before we leave

The ones in our lives bereft.

No one is spared who’s born

Of pain or of illness or death

From the moment our minds open

Our eyes begin to close again.

Never waste a messengers gifts

Doubting only brings us to our knees

Not bent in prayer or meditation

But in the to the heartache of our own empty grave.

The Color of Cancer

For this the beginning of Breast Cancer Awareness month, we the stage four terminally ill are allotted one whole day, October 13th. I was diagnosed de novo (from the beginning), as my genetics, dense breasts, and missed diagnoses led me to my prison cell on death row on March 25th, 2015 at 4:30 am. I remember that moment like a mother remembers the time she gave birth to her child. And the moment we’re born our life begins ticking away – life is terminal. Yet I know what it feels like to know I’m going to die and from what. It’s no abstraction like it is to someone who has said to me, “well, we’re all going to die someday.”

You’re right. But the truth is you can make long-term plans, can envision your future, can see a purpose to your life. I’m jealous of you. Don’t talk to me about your unhappiness over your wrinkles or getting old or having a breast reduction. I don’t want to hear about it – be happy with your beauty. Beauty lies inside all of us. Accept the joys of aging with grace, just as I’ve accepted my death sentence. I may have a week or a year or seven. Who knows. But don’t steal my #hope. Don’t take away #love. Don’t leave me in #isolation. Look deeply into my eyes, where beyond how good I look you’ll really see my #pain.

So in honor of this “pinktober” I leave you with my poetry. My writing defines me now as does my stage four cancer. I hope it’s a poem that stays with you because I’ve laid it out without much metaphor to hide what’s inside and hurts with pain so deep it’s beyond the soul. Peace peace, beloved body heal thyself I pray each night… as a dear woman I knew would say while holding my tear soaked face. She dedicate her life to healing those with terminal cancer and we lost her two years ago – she’s with the other angels who love us along with those we’ve lost. And one more is one too many.

My ugly secrets hide beneath my thin skin. Am I disdainful, dreadful? I must die from my sins.

Infinitely fighting in my lonely final tour, I miss the cut by a late stage four.

A survivor staring into the eyes of the dead, guilty for it’s them and not me instead.

Now home I’m stitched together a drain in my gut, my heart beats in inside the death of a thousand cuts.

Side by side in an endless parade, seeing you lockstep the line shorter each day.

Fading away in the testbeds of science, fitted with armor in a dangerous alliance.

Open up our uniforms – we’re memorialized by pink scars that magic potions materialize.

I return home to live like a bird in a cage, with an open door I won’t fly…too afraid.

Try to coax my mind from this prison by tying pink ribbons. Those around my trunks – drawn scars from incisions.

Please just turn tearfully away from my door. It’s your fear of emptiness, leaving burnt offerings a taste I deplore .

I found a card you’d attached to the devils food cake. The note simply said: “with love, please keep the plate.”

In the suburban foliage I am incinerated, by the needle of agent orange my body’s obliterated.

With unsteady eyes I scan the papers for new a strategic position. Yet hiring the dying requires expensive supervision.

I find work as a suicide bomber and spend my days toiling in my pajamas.

I want to wear my cancer on my head, and I turn up my collar, so you won’t notice the scars I wear medals of honor.

My arms decorated by kisses of needles and iris colored bruises that came with my freedom.

Yet I cover myself in an empresses’ new clothes, embroidered with test results and dyed the color of roses.

I’m too ugly for a bouquet of flowers that I’m too pretty to receive in the 11th hour.

And ‘neath all this painted on beauty for which you judge me: Looking too good you begrudge instead what you can see.

My lies hide inside tunnels, only discovered in pink undertones, which light up and contrast with my beautiful bones.

Your eyes downcast rolling inside your shaking head in disbelief, stealing the last of my pride like a thief.

To you I’m just another junkie begging for a day without rain, without any pills that ease my pain.

You find me anonymously in an infusion chair , sitting and sweating and praying you only stare.

I am the Marine who comes home in a body bag without any glory, no pink procession, no honorable discharge, no war stories.

How you turn and march away, goose-stepping in formation waving goodbye to my face with your dollar donation.

I bravely smile at you searching blindly for another word for death as you back away, guilty.

Looking down my rifle’s sight, I find myself in the mirror, knowing I may not find tomorrow.

Don’t wonder where I’ve gone and don’t answer my cries, instead live on in my legacy and say, “goodbye.”