Tag: cancer and love

The Gracie Foundation

Everyone needs a little pampering, a surprise gift of love, and no one moreso than a person with metastatic breast Cancer. The Gracie Foundation provides all that and a deep feeling of warm love in a priority mail box to its recipients. I received mine on Monday and not a moment too soon, either. You can nominate yourself or be  nominated by someone else to receive the amazingly beautiful and incredibly useful, high quality priducts to make breast cancer treatments just a little easier to bear. In my box: a large bottle, with pump, of body lotion; a scented soy candle; a cooling eye mask; a bath scrunchie; a gray knit cap; pink warm socks; an awesome mug for a big cup of tea; delicious scented soap; a pen and todo pad for chemo brain days; face cleansing wipes; and a book explaining the origins of the idea and the woman who founded this wellspring of love to carry on her legacy through giving even beyond her physical lifetime.

Gracie’s husband, who she married just a week before her fight with cancer ended, carries on her legacy and so he and volunteers ship off a little of Gracie’s beauty to others who need a bit of that special thing that made her a much loved woman of substantial giving.

Thank you, Gracie. Your spirit and soul fill my heart with beauty and joy, and I think that’s just what you had in mind. ♥️

One Fresh Hell, Hold the Tomatoes

Last week found me a visitor to a mental health facility, leaving each evening alone and downcast. The place just a few miles from our home, in the foothills south of the city, in an unremarkable single story building where I chose to allow supposed professional responsible human beings to rescue my ailing partner from the shackles of long term anxiety and depression. Leaving without him broke my heart and provided not a whit of relief as a few close friends hoped a “break” in the action might provide. His pained eyes looking upon my sadness as yet another judgement to come down upon me. Another multi-year term added to the #lifer tag around my neck, another blow to my remnants of hope.

All the while I possess the knowledge that I likely won’t live to see our future through to a plausibly happy conclusion. Even though this love 10 years in the making, its melodramatic script changed and the film itself in the can, spliced together and the story arc mangled under the cruel editor’s blade. The final reels go to the studio with my scenes cut and lying on the editing room floor.

I hoped for relief at the end of a long week spent alone over the course of treatment, yet no sparkle reappears in his eyes yet and his life not yet resuscitated. It takes the Zoloft about four weeks to help much. But I’m mostly alone these days. Yearning for my partner’s support and the kind of tender and caring love many of which many metastatic sisters write and blog about, I now look over at him, home in bed, and find one whose dark, inky emotions remain locked away inside his heart, like the stars behind clouds in a dark night sky. He lays there disengaged, thinking to himself about things that cause long bouts of sighing, and the simmering anger of so many men who find themselves bitten by such disorders.

Sometimes, my difficulty lies in hiding my visible outrage for being his care giver for over three years, of which this past 18 months one of the most heart wrenching trials of my life. My god – this and cancer, too? Fuck. What more can one do but look up and ask the ceiling over our bed long and winding questions about the treacherous nature of spiritual meaning, self-worth, and the relative value of a life. I then break from the sum of my existential questioning of cogito ergo… to find an email in my inbox from someone who reaches out to me to thank me. Grateful for my honest approach to my blog posts they type out a note that reminds me of why it’s worth it to know that it’s my responsibility as a wife to make a decision to help alleviate my partner’s suffering and try to revive him. To ask that his soul be returned his body.

He, too, wants only the same for me and indicates we may not stay together. For fuck’s sake — why now and you have got to be joking (the only sentences I can form without punching him in the face.) These trivialities came to him exactly how? And in what universe does he believe he lives in where this would even be okay by a substandard unintelligent alien culture of unfeeling assholes? And with that he passes wind and falls asleep and I’m left to wonder alone, naturally, what fresh hell might await me tomorrow?

Hopefully a new sandwich called “fresh hell” from the deli and no more than that.

Eventide

Riding passenger side snapping right,
I’m down in front stealing long exposures.
From the back seat our youth sits
Mocking us with instant polaroids.
Destroyed pictures of minutes and memory
Precious and precarious slip a stone
At once here and at once gone.
Right under the driver breaks hard and higher
Up another mile, silently stealing all we pass.
As if it meant nothing, had no value.
Yet we never stop to salute the flowers –
All wilds and yellows and purples.
The foothills’ shoulders grow peonies
Upon sunshine golden with military ranks.

How jagged time?
We spend ours climbing again as
Eventide approaches us.
Stealing the light
Squinting and teasing Every photographer’s eye.
The lens escapes the fight as fists fly
Above us rung the first punch
Headliners: the over-real versus the unbelievable.
Then we drop down tearing around
The Summit dragging the day with us.
With us flat then right over on the side.
Buckshot sprays whitetail from
Underneath the wheels,
My skin and bones chill fast underneath
Blankets just a quarter mile thin –
Count the microclimates in a 14 mile exposure.
My imagined assignment, anyway.

Inertia now driving our ascension
Finally dousing my focus.
Yet I am pacified by
Deep coastal royal blue velvet,
And by the courtly cape
Of dense silver fog.
Trees, reach in and take my attention
Lost in the sky and yet at home.
Away with the little brick foxes
Already started by the drooling hounds,
Running in distant golden broken lines
Shrinking to a pointed index
Finger of bent redwood lumber.
Penciled between the knotted trees
Escaping our eyes
They write letters to us
To one another, to anyone.
I imagine the trees alone love themselves.
Writing in dead languages those
Modern towers of Babylon
Without oral tradition
No monks or followers to take dictation
The mighty ones tie rings around
Paper and papyrus of their own making.
They, like me, can write their own stories.

Distant deamons dance to the music of the eventide,
Whose eardrums thump and pop from slight descents.
Mercies clear the stares and the macabre glances.
And up ahead the night hides just around
The voluptuous Earth’s curves.
Yet she shakes off the road upon her hip
Langushing and lounging
Laughing at all the forsaken highways.

You snap me awake.
My hypnotic state undone
By our quick duel and I, only me –
I roll one window down
With enough sense to know
The party orange of evening presents
A moment for exposure
Showing the night undone
By the simplest flash
As we find a space and stall the motor,
King and queen of the hills
Announced by snare drums and trumpets.
Goodbye, twisted bruised skin of eventide.
Eventide, goodbye.

Lessons from the Present

In my darkest hours collapsing under the weight of my own perceived adversity, I wonder how to find the energy to bring happiness to myself and others while in this life. One relatively recent shift that’s come via studying the practice of presence and living in the “now.” I search for strength from within myself, hoping to find an ore of clarity in a vast cave of stone and archeological discovery. To focus on the present seems implausible on a dry infertile landscape littered with anxiety about my past actions or insidious worry about events or emotional fallout that may never transpire in any of the potential future scenarios that lay stretched out before me.

Whew. Yet all these realizations happen despite the complexity of my given task at hand. An unexpected benefit of my focus in the now: I’m defocussing away from the heaviness, the sadness, the darkness of life with metastatic cancer, throwing away and cross shredding my membership card to Club Cancer. I learn to find clarity here where the present moment provides me with strength cooking at the stove or sitting behind the wheel of my car. Instead of the usual sigh at a routine task, I smile and do what I used to perceive as mundane chores with flawless efficiency and with joy.

The results become a happier self and a much better outcome. Even a moment of silence can bring about deeper meaning in these everyday tasks. The boring becomes the beautiful, the Wonderbread(TM) becomes the wedding cake. Finding beauty in everything I take into my senses for example while stopped at a traffic light on a peaceful Sunday evening. A routine drive becomes magical, sparkling with blue, red, green, purple, pink, gold, and white lights and holiday decorations on houses and buildings. Or while preparing soup from scratch, an activity that certainly brings the past into the present through kitchen skills learned over a lifetime to create a fresh bowl of soul-warming bisque.

The increased value of the ingredient of my presence requires relatively zero investment. It’s really a divestiture of an investment of negativity, rumination, hostility, or even aesthetic snobbery. Instead of focusing on getting to the destination, the journey instead uplifts my heart with more joy than I expect; I float above the paved roads just for a while with the ease of an untethered spirit. Similarly, if I become present in a moment with my pet I find happiness and peace through a relationship to the natural world and with this animal. He consciously plays with me, which sets a good example for me to follow.

Strength, too, I realized comes from human courage exhibited through people’s stories. Our personal narratives bring us to the present with our past experiences. Everyone’s present self must therefore contain and be informed by our past and none are more important or less fortunate than any others – it’s simply a matter of scale and influence: from a great leader of human kind to a single person overcoming a physical handicap.

Ridiculously, compared to how much work I produced in the 11-hour days of my career, I find it difficult some days to write and post a blog piece. My comparably easy tasks sometimes require more strength than I can illicit from my tired and chemically-thrashed body. If I live in my past or concern myself with the future of what might happen I’d never write a word. In other words if I don’t exist in the present, I only focus on the perceived value of the words I write. How insane to think I know the worth to any reader of my discourse? If my expenditure of energy brings any return on investment it must only be for the present situation of this moment for me and in that same line of reasoning, for you in reading my words.

Perhaps my essays or poetry bring you a smile. Maybe they give you a bit more strength in knowing you’re not crazy or you’re not the only one who feels the way you do. I believe then in this moment, in the here and now where our individual thinking intersects, we become friends. Whether you’re a new friend or a friend come to read a while for a visit, I’m so glad you came to share your presence with me – I treasure your gift.

Some might arrive as a short respite from of a world severed from it’s once well mapped out future, now thrust into the cancer culture where we’ve a lot to share with each other. Here, either a love giver to one with a disease or a cancer survivor, we can walk hand and hand. We step to a rhythm of head nods of recognition as we see of ourselves in one another like mirrors. Our circle contains everyone who continues to prove that we can live on as a reluctant card carrying member of Club Cancer. Including those who love us.

And to those who pop in for a visit without your identification card – newsflash – you don’t need a card. We welcome your visits and love and time, so stop by often. Please, just don’t remark when you hear one if us has cancer, “well you could get hit by a bus.” We throw people out for saying ignorant, insulting crap or regaling us with some vaguely fictional cancer story about your aunt’s neighbor’s ex boyfriends third cousin’s adopted brother. Stories couched in empathy but only meant to alleviate your own guilt and the inability to not make another’s pain about yourself.

I welcome anyone who cares enough to visit: now is always the best time.

Home Ode

Stop and go in snow, in traffic, mother
Of course it’s the weather, noneother.
Midwestern December seasonal jokes –
As many as there’s names for Snow in Alaska,
Outcries and inside laughter.

Generously long routes, craning to savor day’s last light,
Good behavior rewarded, we finally turn right —
Towards the porch lit arms.
They wear glowing, wicks smoking, closed farms.
White, blue, red halos dripping, wax tendrils
Waning slowly, gasping on card crowded mantles.
But for one home, at once a sudden single
Moment and no more.
Staring, sending messages,
Minding the change. Her sharp, shrill voice calls:
I’m fine, no really fine, go worry about the environment.

Gulf side store-bought guilty cinnamon sweetness,
She’s now explaining,
(No patience anymore, as though you appreciated it?)
I change. I lay my gloves, toss my driving wet scarf
In the canyon eroded onto the old twin beds.
Returning, in a few moments all slippers and robes,
Old reruns of TV, family, historical arguments
Hidden in revisions and mistakes.
Taciturn remarks about topless cars,
About wild Mustangs and scorching scars.
Carbon, dating with all four on the floor.
Eternal dark hands latch white storm doors,
Snow pushed up on lawnless grounds.
Signs, wired ice knives — shattering, creaking, pointing down
Augers the night of Damocles, whose sword flashes
Screaming in the dark: stop, go, stop and go.

Spring brings black pitch tar steaming fill and rising streams.
He’s certain of the weather, again, I know.
When Minnesota blood runs south via the mouth
Of the Mississippi River byways and embankments,
The answer spits out as ice and precipitation.
The coin fed arcade witch or gypsy — your good fortune in hand.
Our God instructs with tiny gifts of anticipation,
And I, the torch of pain as a paper angel holds her wand
I sing of shame, tuning forks, and rabbit ears.
Why it’s so plainly true, your grin widens coldly, I suppose.
As a frightening hand clocks to and back a metronome,
Heavenly-made answer saves the wost worn.
How wrong, again, or all along, again.

Weather and evening corralled the horses inside.
Our engines idled, cooled, then died.
Suddenly yet expectantly (as ice or apple pie)
Boring holes in us with collapsible eyes —
Like summer left us in an awful rush,
So the bent boys gasped
As tall awkward girls cried.

The Second Line

Not the first, nor ever last,
The Second Line dances ecstatically past.
Behind the mourners, they’re not the saints,
All uplifted, marching in crowded street’s restraints.
Wheeling, turning, lift and fall with porch swings,
All souls rise upon the polls and upon night’s owl’s wings.

Arriving I walked through stranded streets,
Leaving, I grasp a heart (as my own skipped a beat.)
Coming to hear my disease my diagnosis,
Going to feel your hands opening my prognosis.
“I believe you understood I needed nothing!”
Somehow I left the sand untracked, forgetting every something,
And now I remember to choose without no judgement (or cups or wands)—
The images I neatly packed tumbled and eroded into sand.
When I lost my vision I cannot recall, but you held me in your light,
Though I came to find my courage, I dance away with second sight.

My Loves Electric (Not Anymore)


Our “Friends” Electric Gary Neumann

There’s a knock on the door/ and just for a second I thought I remembered you.
So now I’m alone / and I thought I could fend for myself.
(From Our Friends Electric by Gary Neumann)

I’m in a terrible dream from which awakening may prove worse. My house in a state of disrepair, crumbling down around me. I try to run as the floorboards warp and break behind me with each step, I scream moving towards a closing door my hand grips inches from the handle as it shuts and locks me inside our home’s sweet wreckage. My good dreams of the future simply exist as memories never made. Each new day wakes me with only the potential of a kind morning. And still alone, my mind races back to that door slamming in my dream single lingering question: I face myself and ask – where do I go from here?

My partner of 10 years decided in his state of untreated general anxiety disorder and depression to quit the miraculous rTMS treatments that incrementally could save him from a life in darkness. The magnetic woodpecker that sat over his head for 40 minutes and gave me five memorably glorious and wonderful days with him. Days and nights when his eyes returned to their beautiful sparkling turquoise with flecks of gold from cold, grey, and dead.

We want to sell our townhome. Simon our cat and me probably, for my longer term mortality, must move away from him should he remain embodied in anxiety’s bouts of rage and pain. Because metastatic breast cancer should take poll position over his anxiety, my life simply cannot continue in the same manner. The last hellish three years of watching the love of my life deteriorate from the vibrant and wonderful man into a nasty and cold asshole. My own coming months and years cannot be spent writing behind bars of someone else’s prison, a prison I handed him the keys to but he refuses to leave.

The keys to my prison do not exist, there’s no cure, and there’s no future with happiness together as a team, the team I really counted on – but Einstein said not all things that can get counted, should be counted.

Many women must experience similarly traumatic stress events with cancer ravaging their bodies. My life’s spirits’ exhaustion shows. I burn hot on fuel called cortisol down unpaved roads, climbing hills to where I believe waits my husband only to drop 10,000 feet until I can stop myself from falling. In the uglier more humiliating moments, I feel useless and unrepentantly inferior to able bodied non-disabled women. People say, “just move out!”

If it were only so easy.

The energy, money, and help (none of which I have by the way) moving takes and the emotional toll of the move itself and consider just the breakup – could shave years from my already shortened life. Yes, I do need to reconsider my options. Unfortunately, I’m unable to work much ouutside of my home and if I have any of my own money I don’t qualify for Medicare. In our great country, one must live far below the poverty line to become eligible to receive medical insurance to cover the incredibly high costs of living in a body full of metastatic breast cancer.

I’m watching my life expire, while my love lives imprisoned by something preventable and completely unwarranted since the keys lay in his reach. I imagine what the feelings of excitement of embarking on a new future, unladened by the heaviness of a partner with depression would feel like. However, given the genuine sadness, memories of pain and ugliness and tears combined with my MBC, and my heart and soul feel nothing even close to free. It’s so unfortunate my new direction will bring only lonely, empty, impoverished days and sleepless nights.

It’s as though his depression, rather then a hug and an apology, will be my runner up prize when it comes time to hit the road. I don’t want this new life, but I cannot stay in this one either. For three years I fought to try to help him. And now I cannot help him any longer. If you’d known us before you’d know why I struggled for so long to try and take care of him at the risk and loss in years of my own health.

What the fuck is life without love? What is life without purpose? What does it feel like to truly live alone with pain? How do I go forth into a life without anyone’s name to put on my advance directive? There’s no one left I can trust to see out my end wishes. No one who I can trust to speak for me when I cannot. Everyone’s gone – dead or left when cancer entered my bloodstream. Never did it occur to me that I’d become this lost so late in the game, but My Love is gone. He is not going to come back to me. I mourne him as he was and don’t know this person who says ugly horrible things and teases me with hope of his wellness and then maligns his state of mental health like a monster from an old movie in front of me.

It’s torture. He believes I am having him go to these treatments to have his brain scrambled like eggs. Yet rTMS was incrementally helping him. Now in his refusal to continue he’s just cruel and it makes me wonder what I did to deserve this horrible life. You’d think – why would anyone do this and choose to hurt someone and himself? How egotistical can one be?

You’ll have to ask him. He may indeed become my last love and now my lost life. Indeed, the friend was electric, but he chose to leave its tapping on his door unanswered and thus, unbeneficial. If life as I hoped truly is over, where to from here?

Plan 9 From Inner Space or The Week from the Black Lagoon

Hell is empty and all the devils are here.
The Tempest by W. Shakespeare

Some weeks just suck out loud. Seven days when you swerve from lane to lane avoiding wrecks. Alone in your car, you sing along to a song you love, of your own aural detriment and the unlucky winner who pulled up next to you at the long light lottery. This week’s highlights, with a stressed set of vocal cords, included both Homeward Bound by Simon and Garfunkel and Somebody to Love by Queen. Tonight brought on an earthworm of West End Girls by the Pet Shop Boys. Perhaps once I return to the century we find ourselves led through by accidentally drawing a trump card, I may find music worth my ears and my brain time.

Yeah, the kind of week when you wish for humanity to take a piss up a rope. Then magically, someone comes along and makes your heart warmly humble. Gives you a case of the humilities. A roaring, hair blowing, house flooding giant tsunami of love in your heart. For anyone who wants some. And some folks, too, who don’t seem to want any of your kind of love at all. Screw them, not literally of course unless you really want to, they’re getting loved by you irrespective of attitudinal tapeworms.

There’s people in our midst who quietly and with a dignified grace sweep beautifully and lovingly for no apparent reason into your world. They may stay for a week, a month or maybe a few months or a year. They cannot remain a permanent fixture physically in your life, but change you spiritually and create space for you to accept ideas and postulations that contemplation in the past would bring up your lunch.

Imagine with me of a time when cancer finds you and you find it eventually at any stage – doesn’t really matter. Just as the people who come in and out of your life during your cancer journey: they find you and you find them. Two specific people came into my life recently, each of them so different yet perhaps not so different if you didn’t know what they looked like or what either of them do or did for a living. We measure people by what they do in our culture, rather than the quality of the spirit they bring to our physical world – with a voice that roars quietly in your ears, almost miraculously, when they’re not in your presence. No discussions about why it’s so fucking miraculous that we’re even reading and writing to one another or having heated or gentle discussions together and how unbelievably unlikely it is that we’re here at all…they embody why it’s just so cool to be human.

The first person to find me lost on my own verbose path and take my and pull me gently in a healthier direction, began as a business relationship and grew into a friendship. I am 52 she is a damned fine looking woman in her early 70s with the most piercing green apple eyes I’ve ever seen. I love her as a friend can love a friend when you know how unlikely the friendship but how likely once you dig a layer under the other persons skin and vice versa. She’s gotten me to my current psychologist. My psychologist has had breast cancer, and I’ve met with her twice in seven days and again Monday next week. She along with my green apple wise woman gave me a gift of female co-thinkers to help me through the tunnel I am currently in and not letting me drift into the walls of the tunnel as I find the other side with my speedometer going just a tad slower. No wrecks.

The other signs his email this way:
Peace in peculiar times.
And with this quote:
“While waiting for the other shoe to drop, hop around on the one you’re wearing.”

I find along side the road I’m currently on in my life with cancer, not waste and detritus, but people. Not hitchhikers, but people waving to me and telling me to keep going and not to stop since its rather unnecessary.

The second person has a plan in this life of mine but more on him later. Just know that he’s a cat of many lives and doesn’t stop to lick any wounds. He simply stretches and stretches on with life leaving behind the ugly, the illness, the angry, the negative, and the weight of the past. He’s lighter than air. I hope when I meet him in person I can breath a bit easier knowing that we are not in this journey of ours alone and that other humans in this consciousness came before us to allow free passage of our own loves and lives from one to another and that’s what it’s all about.

Peace out.
Next week should provide for better spiritual happiness and music to tap my foot to the beat of in order to move ahead one more space on the board.

I hear Closer to the Heart by Rush and leave you with this song for by which you may contemplate your navel lint.

Closer to the Heart

Maps and Legends

My epic signed by blue,
Pencils edited, erased.
Pages loosened and flew,
White winged birds sung,
Tightened claws bound to lines,
Snap and fly to inner space.

Shortened pagination,
Politely taken wayward
A palace ‘tross seaward.
My imagination skips,
Hissing gently, a light kiss,
Skip the lights aquatic,
Swan dive into the record.
Hole round against,
Metal and rusted center,
End over a feather,
A light in a jet stream.

Dripping ink and rain,
The last page set,
Down in a spring,
Slowly changing everything.
My books marked still,
On page one. Your laughter,
Soaked and heavy with disaster,
Sitting in the oak’s shade,
You kiss my nose and mark,
With cooled breasts. Wonderful
Of you. A park and your hand,
Reaches to shade your face,
As we read from the book
Of the dead and avoided,
The looks of their eyes,
Ashsmed and exploited.
Slaves and a haurcut.

You forgot.
Cash piles stashes,
Ashtrays and snug graves.
We all fall down.
The ground grows smaller,
As I pass the tree line,
Bangs on the Earth,
Becoming her daughter.
Funny to stand today,
Eclipsing the sun,
Looking down?
Avoiding blind faith,
Pin hole in a box,
Gentle and round.
Protect the last epoch,
Hidden in a rainstorm.
Injustice of ghost town.
What substance, space
She left us, just as wraith.

Why I Love Vintage

https://www.etsy.com/listing/500887842/vintage-rhinestone-encrusted-button-with

Buttons – it started with buttons. Vintage and old buttons to be precise. Hundreds became thousands. My theory: button mitosis. The rhinestone 1950s button you see above, one of the latest acquisitions, stands alone as a thought prototype come true by a nameless, faceless designer. I look at them as though I can save enough to button up my life. Like Eliot used coffee spoons, I measure my time in buttons.