I’m Finally Vaccinated, Let’s Go Out Today!

You’re diagnosed with a terminal illness and you must ask yourself the following question: what would you do differently in your life or change about your life so If any week might be your last you’d be happy with it or at the very least okay with that week?

I asked my husband this very question. To which he reacted with a sense of injustice. “That’s not a fair question.”

I don’t agree. No, every day isn’t a great day…that much is true.

Here’s a snippet of an argument:

Unappreciative ass

Harsh realities too bad

I’m having a lot of trouble with this, hon, can’t we just talk?

You’re in no position to just talk. You’re not supporting us.

He needs to be on stronger depression medications just to simply be around me

I’m getting worse to be around

But I am great to be away from yet he wouldn’t be with me if I weren’t sick.

He can’t stand to be around me, lately.

And has no idea why I’m even with him.

But…We get along. Seriously.

Foundations

However, built upon the foundation of modern western culture insure to that. Due to no fault of our own all of us were born into a time of rampant materialism. Noting we buy delivers on its promise of satisfaction. There’s the cliché small print that spells out a guarantee of no satisfaction. What it does guarantee: you’ll never see any money back should anything go awry. A broken warranty means simply using the product breaks the rules.

I’m broken. He cannot return me to a store, although I suppose he could leave me. But what a mess. And I still take care it so much for him, he cries occasionally: what will I do without you! Meaning -my cooking, my housekeeping, my all embracing hugs, my laundry prowess.

A manufacturer’s guarantee is akin to cancer in some ways. By living in our bodies with the environment at a time of great threat to its mere existence, we are swimming in chemicals and stress and we’ve not evolved to handle it nor should we.Read this article from Commonweal regarding reduction of chemicals in our environment.

Susceptible to Infections

The point I’m trying to get across is that by merely living in a physical body we are very highly susceptible to illness and specifically cancer. The warranty on our physical body while living in the post industrial, sedentary, sugar infused world with melting ice caps and chemicals in our air, water, and food there’s no guarantee of any kind.

With that in mind, ask yourself what would you do differently if anything given your own personal special circumstances even if you’re not hiding “a cancer” if you were to be diagnosed with a terminal illness? By the way, I deplore that phrase – the article in front of cancer removes it from our body’s boundaries giving it a life of sorts.

But hey, don’t worry.
Be happy. The year now 2021 – and now we’ve come so far as to have lived through a pandemic that’s still the bane of many an MBC enduerer’s existence (not to leave out anyone who’s also got a terminal illness but we tend to swim with our own kind when we are diagnosed for the shorthand we develop for quick understanding like chemo brain, and well, I forget the rest but you get my point).

Caught in a trap…suspicious minds

Trapped at home, through no fault of our own, due to our battered immune systems we wait out our turns for a vaccine. A shot or two developed so quickly it makes one think about our diseases. What the hell is taking so long to develop drugs to keep us chronic and alive a la AIDS, rather than becoming terminally ill upon diagnosis. Kept further apart from humanity again because of an incurable, rather painful disease.

As March roars for its wintery last puffs of snow coming this week, I recover from my recent covid19 vaccine. In hindsight I hope my appreciation for the life that cancer helped me find enough foresight to live in this moment in a way that’s just right for me. And I got the vaccine knowing it could have demanding physical repercussions.

I dodged that bullet. I’m fact having a break from my daily Verzenio – and my red blood cells began repopulating my bloodstream giving me back some of my energy. But I can’t overdo it. My tummy began filling up with ascites (see a few posts in this blog by searching up Ascites in the search tool right here.)

Stuck in the middle with you

So this will suck again. My pants are tight, I’m feeling uncomfortable and my feet are swelling. If you have ever been blown up like a waterbed, the draining process is exactly like it. But of course I’ll keep you posted – PET Scan next week – oh joy, head to toe and the anxiety It will bring over potential brain Mets.

Isn’t that what we all worry about when we get a head to toe scan? Those horrible metastases that could possibly go to our brains? The ones that we fear the most? Although medical science has come quite far and the cyber knife as well as other ablative mechanisms take care of them quite well. In fact better than mets that travel to most of the other organs are bodies. So nothing to worry about.

Right?

Maskers Ball

Genetic alterations like cleft chins and widows peaks

Clean white teeth and braces,

Blush and pink watermelon lipgloss,

Handlebar mustaches and biker beards

All for nothing now and how ridiculous.

Behind a mask there’s no way

to flash a smile of gratitude to a shop clerk

or for someone’s kindness in holding

open a door.

We look plastic.

Polarized in soundless shock.

The cranes fly overhead in t-formations

migration from and to places I never visited

And now probably won’t either

Come to think about it,

those birds I knew,

birds

where I’ve been basking in year and year outside

Without the warmth in those million year old spaced.

As sounds of the floorboards let us know

Our short winter days draw nearer

The knuckles crack in my hands

Open and closed alone

I am divided by savage time.

For Celia

A metastatic incurable romantic: am I wasting my precious time writing poems?

If you’re old enough you’ll remember the ABC Wide World of Sports voiceover while Slovenian skier Vinko Bogataj, whose immortalized crash off a ski-jump, came to epitomize defeat. While he falls down a mountain off a ski jump now over 50 years ago, the recognizable voiceover emotionally says, “the thrill of victory and the agony of defeat.”

As with metastatic breast cancer, the imminence of death does not a loser make. It’s the lack of medications and research needed to fund those discoveries that failed to keep us alive. A mere 6-7% of your donations to breast cancer support MBC. As such, some of us may lose the fears we towed packed in our emotional baggage. Primarily the fear of death psince death, a fear just under speaking in front of large crowds, has already demoted itself on the lists of the terminally ill. It’s not in the “if’s” but the “when’s” column along with failure, love, isolation, support, and rejection. Part of poetry involves, like speaking to a crowded ballroom, boos and hisses of rejection by readers and if one chooses to try to become published by a journal or magazine. That’s if you can get past the selection criteria and the subjective taste of journal editor(s). Your writing might go to the publication using Submittable or other online tools that take the guesswork out of formatting and also take your money if there’s a fee associated with handing over your brilliant poesy for scrutiny.

However, not too many of us will get the trill of victory and wind up with a slew of letters or emails that will read something like:

Dear person of limited talents, 
Our publication receives thousands of submissions a year. Unfortunately, your poems do not fit within our very prestigious blah blah blah yadda yadda. Please feel free to send us another $20 per garbage we’ll likely continue to tear out your guts with by making you feel like a complete loser. Be well and stay safe.
Fuck you very much,
The Editor’s Form Letters

- Concocted example of a rejection letter

Loss and Pain

Writing poetry doesn’t differ much from masochism. Reading it feels much the same to some: as painful as fresh raw wounds inflicted via a sadistic whipping by a cat o’ nine tails. Line by line, verse after verse, sonnet or haiku, it’s a risk to spatter your page with blood from your open chest revealing your heart to the surgical public: only to hear through an anesthetic haze the comment that someone hates poetry. I’m sure in the population of readers more would rather a cancer diagnosis than read poetry for the rest of their lives. Should you fall into that side of the population, trust me, take the poetry, just as in The Godfather it’s best to leave the guns and take the cannoli rather than approach the screeching wife at home awaiting that night’s just deserts.

Joking aside, “Loss is not the same thing as defeat,” Stephen Colbert stated before an interview with Joe Biden in 2015 who lost his son. Biden’s son, Beau died of brain cancer at the age of 46 two years after diagnosis. Joe Biden, president elect, was head of the Obama administration’s cancer moonshot. But as 2020 comes quickly, and with relief to many of us, to a close, we all feel the defeat of the moonshot as it was. However, all’s not lost.

But in some sense we’ve all felt the loss of our selves as who we were to “bravely” become who we are now – as though we have another choice. We can refuse treatment and exercise our right to choose risking dying a quick and painful death.

We mourn our lost sisters and brothers. Immediately I can see on my mind the smiles of just a few of our friends who have died this year including lovely Katie lumps, Emily Garnett, and most recently Nancy Siebel, who died without warning and without a hint of sickness died a few weeks ago. While I mourn them, I mourn myself, too. Reminders of the unknowable future I’ve waiting for me. Sooner than later.

What does my fear have to do with writing? It’s my smoke signal that I’m still alive to my virtual network of friends. We hope to continue seeing writing come forth in our very personal blogs, our Twitter accounts, photos on Instagram, and even through the evil annals of Facebook, of which I’m vocally about not being a fan. I choose WordPress as my platform because I’m free to say what I want. You don’t have to like it or read it.

We all display different variants of expression. Annieasksyou writes similarly to my style of blogging, combining both personal essay and poetry. Others use different media altogether like The Brain Cancer Diaries by Rudy Fischman. Still others use their voices on a rising number of podcasts like the newer Our MBC Life podcast . And some blogs stick strictly to the topic like Nancy’spoint or Abigail Johnson’s NoHalfMeasures, and the lovely Marie Ennis-O’Connor’s Journeying Beyond Breast Cancer. Still more like Gogs Gagnon and Julia Barnickle who reflect so wisely in books published for the sake of us all.

Egotistical Self-publishers

In a sense bloggers are all self publishers. There’s a colossal difference in the way poetry is written, who reads it, what anyone takes with them from our drawings in words. It’s frightening hitting the publish button. Knowing a few people will read it, fewer still will “like” it, and fewer still may understand my illegible thoughts enough to comment. And I read a lot of blogs because the conversations exist between us – either stated or unspoken. Sometimes I find myself answering a question someone poses in their blog or that came up in a conversation by way of commenting.

If you read my blog you’ll notice I’ve been publishing more poetry recently. First, I plan to self publish a chap book. For those both uninterested in poetry and who really just don’t like reading it, a chap book is a small volume usually about 40 pages of poetry.

You might find reading topic specific poetry in bite sized chunks more palatable. But the chapbook has more historical importance than you might know:

Chapbook is first attested in English in 1824, and seems to derive from the word for the itinerant salesmen who would sell such books: chapman. (The surname of the man who some say under the control of the CIA murdered one of our great modern musical poets, John Lennon) The first element of chapman comes in turn from Old English cēap (‘barter, business, dealing’) from which the modern adjective cheap was subsequently derived.

https://en.wikipedia.org/wiki/Chapbook

Historically Speaking

Though cheap, modern writers and readers owe a huge debt of gratitude to Gutenberg and his 17th century printing press, to John Locke’s and Jean-Jacques Rousseau’s influence on the 18th century age of enlightenment, and the rise of the library loaning books for free to a general population.

With a literacy rates growing for both men and women (Locke viewed education, not women, as inferior, hoorah for John Locke.) The thirst for reading materials seemed unquenchable but it also presented some expense most everyone except the elite 1% of the population could afford. Sound familiar – have music and the arts kept their place in a good public education? Money can’t buy love of painting or dance. Or poetry.

In the 17th through 19th and early 20th centuries, poetry presented a well-liked, digestible medium. Popular poets were like modern film and recording stars both in the United States and in Europe. How sexy Lord Byron and Joh Keats really were is certainly debatable but they had their way with the fairer sex of the time. I suggest If you’re interested, pick up the bawdy Boswells London Journal, which provides an excellent portrait of 17th century’s rise of literacy. James Boswell journals his experiences in acquiring the interviews with Samuel Johnson, the first lexicographer and the man who penned the first English dictionary.

The book also portrays the attitude towards women’s literacy and of women becoming writers in their own right. Negative to say the least, but times change, and Kamala Harris although a late entrant into the hammering of the glass over our heads will remain an historical bookmark in the pages of modern American history.

Here’s a quick poem in light of my ever present concern over the entirety of what’s expected. Can we ever release ourselves through verse, through guilt, or anything for that matter? There can be many reasons why poetry can’t heal certain psychological scars. I think the last four years may be one of them:

A Moon shot through 
My heart: I fell out of favor
Beside the children in cages
On the border between
US and those
Who pick our fruit.
Or you weren’t aware
Covered in blood
From a million little pricks
Of ridiculous idolatry
Worship or die to
Learn the fate of
The incoming.
Dignified and individually
Wrapped, ready
From a long run
To pick up a lighter
Set the fuse on fire
And liftoff.
Watch that long tail
Don’t you notice the red glare —
The truth? Pull us out of the dark
Age of carcinogenic
Hairline breaks and
Open the crates.
Release us from our fate
On the broken backs
And the bloody hands
Of our future makers.
The strawberries and oranges
(Does nothing rhyme anymore?)
I can again rot in the
Cold bin of the fridge
Leave the rest grounded
Feeding only worms,
Like I will
Someday.

Sometimes Silence is Golden, Sometimes

Sometimes there’s acts requiring virtual silence to absorb whatever is said, and for poets, what’s unsaid: how we choose the breaks between stanzas and lines; rhyme schemes versus free verse; trapping ourselves in a structure like a Westin’s or sonnet; how we begin a verse; and how we choose our timing – slow versus fast beats, short or long lines. I know for myself my process starts with a flow – I let whatever my mind must let loose to the page – in the majority cases these days, an electronic page. Now there’s no going back to earlier drafts and I am not sure if I’m better off for it or worse off…but that’s my chosen path. Otherwise I could spend years in revision. I’ve learnt to cut and slice out what I hope makes sense to the reader and to me.

The last six years allowed me the time for a huge period of maturing in my writing; it’s also concurrent to when I started the blog five years ago.

I often wonder why my readership ebbs and flows. And what’s really interesting is that the more popular posts tend also to be the most personal.

Having an MBC makes ones life a train wreck. I think it’s probably anyone’s guess as to when the train will hit us and there will be no more words published – I publish once a week for this reason. If I stop – you can bet something has gone terribly wrong with my health. When I do finally succumb to my terminal illness, I have a last post written that a friend I trust is instructed to publish on my blog. It will flow to all my social media accounts and that will be the end.

But it’s not the end. The whispering of words will continue to speak for our lives beyond our deaths. Our names and our writings will linger on, as long as MBC is a big deal and it is. And as long as we keep dying from cancer, and we will.

I suppose the tragedy, my own illness, the crowned prince of all viruses, coronavirus 19, the deaths to come, are really portrayed by my own mortality reflected in the eyes of the frightened and the ignorant. It’s extraordinary to see the amount of people afraid and alone. I live my life, isolated with uncertainty underlining my own careful steps to remain with the living and the people I chose as my family. Those who share my blood do not even check in to see if I’m still pumping my own red cellsp through my veins. Fuck ‘em. Believe what they want since I’ve not found my way home since 2006.

Musical palate cleansing

Steve Windwood – Can’t Find My Way Home

Come down off your throne leave your money at home…And I’m wasted and I can’t find my way home.

A fabulous one-man acoustic version of a song my honey doesn’t particularly like for some reason, but brings tears to my eyes.

Here’s my last poem of 2020, a year to remain in hindsight where it belongs. I wrote to end this tragic year – perhaps as always, I turn to poetry when the sourness of reality impinges on this sweet life in a body I borrowed in 1965 to use this brain and these hands to communicate something to anyone who cares to read or to listen. Be safe. Be well. We’ve a long way ahead of us; magical fairy dust cannot cure the ill or the ailing and divided union. But it certainly can begin to give us hope. And as the women we lost to metastatic breast cancer this past year, let’s hope their lives hadn’t passed us by without teaching us all something. Something about grace. I hope they feel no pain. I hope for all our lives. Every last one of us.

A year of tragic proportions
full of lies and propaganda
Yet too, of truth and love.
How does anyone now doubt my disease:
Like my love
you may not see what flows
in me. Yet my blurry
Eyes set you
in a rifle site.
I shoot Scattershot
right into the crowds of cows.
Once up all night with
Dreams of toilet paper,
Of asses cleaned
By dirty hands
And shit created
With growth hormones
pasting together
small squares to
wipe away the false flavor
of what was once a berry.
How far have we sunk
like Atlantis that once beautiful city with streets live with the hustle and flow of
coming and going
replaced with the fast footprints of people running from the tide
of the laws of nature
the cops of the righteous
washing away our sins.
Women grabbed unwillingly
by the hands of moonlight.Future
Archaeologists may dig
shuttered small shops and the bones of
the dead lines in a Target.
Will we again communally eat at celebration meals?
Long tables of false bounty hunted
by the loners and the lonely,
whose social distance is much more than six feet,
it could be six feet deep under the earth,
where epitaphs will not read
Rest In Peace —
but of life stolen
in a looting of family photos by a violence so incredible we no longer can breathe under
The hard knees of insanity
As our necks crush
Under the weight of the onlookers
Who died inside
But left the rest of us
For live. But we died that night, too
It’s said hindsight’s 2020 and
By all accounts
The book’s written.
The authorities found the writer
And his unnatural wife
On a course in Florida
Where the tides came to wash away
The sins and the sinister.