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.

The uncanny abyss: parallels of Covid19 and metastatic breast cancer

Hey, does anyone feel even busier than they normally do although we’re all supposedly so bored? I’m getting personally stir crazy. Marked by a masked run to my local craft shop to buy some wood flourishes for a cabinet I’m refurbishing and pens to continue with my #Zentangle meditative drawing practice.

On a more serious note: Unfortunately theres uncanny parallels between Covid19 and having metastatic cancer. The need for self-quarantine & social distancing leads to feeling isolated and alone, and comes with the both relatively uncharted territories.

Tangential to covid19 are the numbers of deaths associated with cancer. These most likely will not be counted in the sum total dead as a result of Covid19. Due to necessary precautions for immune suppressed populations such as my own – we will begin to see a long chain of deaths because clinical trials are postponed indefinitely and we have less access to healthcare and therapy that can only take place in the hospital. Furthermore, people who need to get checked when a mammogram isn’t considered a required procedure during this time, will have far reaching effects on our mortality – and I’m only speaking for breast cancer but do not ignore other cancer diagnostic exams.

Early detection can save lives. A few days ago the UK NHS stated that as many as 35,000 women will die as a result in the reduction of tests for breast cancer detection as well as the decline of in hospital medical oncology treatments over the course of the last four months.

Estimates haven’t gotten around to statistical analysis here in the US yet; they’ll be higher no doubt. I also cannot think the numbers will matter much, as the ostrich approach feels more comfortable than looking at people who are “anti maskers” and those who refuse to keep a safe distance or just stay put so we can all get back to life. But things do need to change, including a shift in our compassion and empathy as a society. Fighting seems to have replaced intelligent discourse and peaceful demonstrations shushed away by media covering the uglier, more newsworthy side of free speech.

However, not wearing a mask isn’t taking away anyone’s human rights but it does take the humanity out of the way we all live as a supposedly free country. I feel imprisoned due to my diagnosis and subsequent treatments, and it sucks.

I can’t speak for you, but the longer this goes on the less freedoms I have. We spiked to record numbers in Nevada and Placer counties, where I reside in California, this week. These new numbers of them diagnosed and the dead are the highest we’ve experienced and will only increase with the number of people who get tested.

Yet we aren’t testing nearly enough people. Must we continue through the next flu season and testing our country’s mettle even further as we sink deeper into this financial and mortality abyss? As a Stanford physician eloquently stated in a “Five Questions” interview on June 19th, “Wearing a mask doesn’t mean that you are weak or afraid or a coward. It’s a way to protect the vulnerable around you. It’s our duty to keep each other healthy.”

Going anywhere is a huge risk for me and others with immune suppressed systems. Stir crazy? Sure. Lonely. Very. But I’m more afraid that my five and a half years with metastatic breast cancer and all I and others like me have suffered to remain alive can be for nought if we don’t contain this virus with expeditious emphatic personal commitments to our neighbors.

#fuckcancer and #fuckcovud19

Turning Isolation into a Gift of Giving

Neither extrovert nor introvert, but ambivert, staying home rather than going out’s never been an issue. Yet I love learning from all kinds of interesting and vastly different people than myself. And socializing face to face is something I enjoy. My friends range from a 67 year old ex Hell’s Angel who’s one of my BFFs, to a 20 year old Hodgkin lymphoma survivor married to a sweetheart of a woman who is currently serving in Afghanistan. Clearly I don’t discriminate when it comes to friends. Variety in life seeds knowledge and patience. Learning to ask questions and listen – not quite my strongest personality trait prior to cancer is something I’m still working on – but I was admittedly insecure for a variety of reasons.

Where do you want to go today?

How does a social animal such as myself make it easy to say “Home!”

Be us ever so humble, there really is no place like our wonderful home. The grass is much greener from fewer chemicals, the skies bluer from low air pollution, the people friendlier from less personal stressors.

But then there’s the house – you’re a citizen of your community but you’re the president of your home. The keys get you in but it’s up to you to make it a home not just a house.

Our timing, as always, couldn’t have been more serendipitous and with decisions easier for two who complement one another but fail to see the same decor as fabulous. Then add a sprinkling of dysthymic depression and case of metastatic cancer, add a pinch of a viral pandemic and you might hear the click of a shotgun at four a.m. coming from our bedroom. Or two clicks should we get that sick of one another. (I’m joking of course.)

Since February of 2020, and roughly the same date I began my current course of metastatic breast cancer treatment protocol, my resistance is low. And not just to wild color choices.

Why does anything that seemingly brings joy or comfort feel like a luxury since my metastatic cancer diagnosis? I’m truly not one to just let opportunities for fun and friendship go by and there’s no depression happening either chemically in my brain or circumstantially. No one could blame me for feeling depressed either. But it doesn’t describe how I’m truly feeling nor how all this is affecting my emotional well-being.

My physicians have all at some point handed me access to prescriptions for antidepressants, which I warn them, simply put me to sleep. I humor them and take one pill of a 30 day supply and 29 or 28 pills remain in six prescription bottles.

The blues are only of the azure clear skies in the countryside blockaded from pollution by the Sierra foothills and Lake Tahoe to our East and the American River and several dams of water control to our west. Immanently upon popping a little pill I’m sleeping as quickly as counting backward from 100 when the anesthesiologist begins prepping someone for an operation. In goes the SSRI and there better be some things off there to catch my fall when I fall asleep.

So I’m not depressed. Not exactly. I do believe that this whole COVID routine is getting old and boring. I’m definitely not and individual who likes to be individual I like to be around other people. So there is that part. There’s also the fact that I don’t get to go to estate sales, garage see, and antique shops. That’s where I make many make new friends and get to do the things that I like to do on a pretty regular basis. That’s if my shop brings in enough to budget those activities so it’s not often but I do miss that part of my life. Parlaying it to others has been a joy and is helping someone else for which I spend hours researching and learning. So those things of been gone from my life since February.

Other people who I really enjoy being around like old things as much as I do. I’ve spent a lot of my housebound time organizing my old things and selling them on my Etsy shop. (Should you want to check it out http://www.etsy.com/shop/YeuxDeux/). I started the profit sharing business with some friends were out of work because of the COVID19 situation.

But things actually got easier. Life at home became a luxury for us and thus the ease of deciding to stay home versus go out became a non-starter. We moved into the house, whose name La Villa Strangiatto (the Home of Odd People) also the name of Craig’s favorite Rush album and a song he can play beautifully on the guitar, reflect in things like our color choices. We dealt the bulk of the decorating decisions to me, due to my husband’s infamous analysis/ paralysis syndrome, with the exception of his office and outdoor lighting. Yet my sanity was called into question with regards to the color palette – a magenta burgundy and gold for our downstairs Moroccan-themed den and offices, light dove gray for the majority of the living spaces, and an auspicious robins egg blue for my kitchen. This may sound like a mad house or a set of brave choices depending on where you fall in terms of house colors. Then add an aubergine front door and you may immediately question what you’re about to walk into. But fun can be had when you’re truly engaged with any project -in the grand scheme of life no matter the size of the tasks involved, when you engage your mind, body, and spirit, wondrous, interesting, and even life-changing results can emerge.

So if we look at the situation as being “stuck,” that’s exactly how the days feel. One rolls into the next and Monday feels like Saturday. At the end of any day you become what your mindset dictates. If we enjoy the opportunities, whether conjured by imagination or something like gardening for rolling colors of white, purple, pink and red as the summer progresses then it tells of growth. Internal and natural.

Where’s everyone?

Somehow for me there’s the company of friends I miss most. Generally people are taken over by all the sparking rhinestones, strands of semiprecious stones on the wall by my desk, the views from our back deck. All promote interesting conversation. Craig’s natural ability to make a very difficult mathematical or technological concept easy to understand align well with his wicked sense of humor. I cook and he entertains with stories, music, his talents are relatively endless compared to most mortal humans.

But we’ve been together going on 14 years. I’ve heard it all. Yet what’s to come – all the plans we made this year wrecked by my lack of an immune system. When I return to normal society is unpredictable.

I don’t know about you, but I go to the store to grab things that don’t occur to him to pick up like toiletries. Once a month I allow myself 45 minutes at the close of Target to gather the missing razor blade refills, shampoo, etc. and I’ll be damned if they didn’t pick now to re-shuffle the merchandise. But instead of frustrating myself, I take a breath and am just grateful I can pay for my cartload. My heart tugs hard knowing others cannot afford a thing beyond basic necessities. So it’s not guilt that I feed my soul on.

I put my heart and m my mind to a find a solution. While three good friends are the beneficiaries – that’s 300% more than zero. And it benefits me and helps offload some of my medical Financial burden and gave me back some of the social FaceTimed I so crave.

Every problem has a solution.

Instead of having a whole bunch of stuff that I can’t possibly ever get in my online shop in this lifetime, I’m doling out categories of merchandise to a couple of friends who lost their jobs or lost the bulk of their revenue due to cancelled outdoor events they’ve don’t mess each year. They benefit and I have gotten my house near clutter free. How much I’ve wanted to do this but had no time nor any real place to give these curated beautiful items a worthwhile home without losing all the time and the money investment. So it’s not completely unselfish of me but certainly it makes me feel good to be able to do something beneficial for someone else. I think helping other people in times of need, times like these, is the kind of thing where we all can benefit – and we benefit by giving of ourselves in a sincere way. The end result of giving is so much nicer than the feeling of getting.

First I determined that I could easily share in my vintage and antique business. There are certain sub genres of antiques I don’t have the time to learn enough about and I have inventory to spare. It was things that I had planned to sell overtime but I know in my heart that I don’t have the lifetime in which to undertake these offerings. Honestly, not knowing how much longer I’ll live is a large part of it and that’s just reality.

So I’ve given one set of friends some of those categories to start a second shop online. Then my other friends currently and successfully sell my antique and vintage hats along with their other handmade leather goods that are absolutely outstanding and artistically creative and well made.

My friend models the hats; her husband takes the pictures. She is so beautiful Both inside and out that her soul really shines through in these photos. It was once said that a photograph stole your soul. I don’t think that’s true at all. And in this case the pictures didn’t steal her soul, but share it.

To give truly is divine.

And I was never very good at receiving gifts. I hate surprises. I always like to know what’s coming. And that’s really unfair to the gift giver but that’s my personality I can’t stand surprises. It’s a confessional that’s embarrassing but what can I say.

In essence over the past four months there’s been a rearrangement in my personality. It’s happened before. A huge amount of physical and mental adjustment to a life with cancer is ongoing and into five long years. If I’m lucky enough to get in another five years, my adjustments will focus on how to rearrange myself to accept my lack of energy, my fatigue, and the pain that I feel when I try and do life without doing more medication.

The third friend overlapped with my resistance to binge watching an entire series of television. That silly fear of indulgence had to fade to the background to return the gift of laughter. He’s allowed over to the house since he too is suffering from a life of pain and I watched him start to teeter into a full blown depression, and I had to grab hold of his hand before he fell over a cliff into a dark ravine. I watch mostly British comedy when I do watch anything besides documentaries. By the way, should you want to laugh really hard Netflix has the British comedy, Man Down, written by and starring Greg Davies. This was the second helping of the show for me, which I consumed along side my friend. I had no idea what damage a stroke can do to someone’s memory. And since he suffered through several strokes six years ago he finds it difficult to remember when and how to laugh. How sad would life be without the gift of laughter. There’s a yoga in fact that is a laughter yoga. So that tells you something doesn’t it?

And I suppose it’s a kind of indulgence, and one that has gotten me through some really shitty chapters in my life. Each night after dinner over the course of about a month, we laughed to the point of tears.

Giving someone I truly care about the remembrance of how to laugh what was one of the best things I could ever give anyone. It’s certainly worth more than money and the most gratifying activity in which I’ve actively participated. There’s a few more personal stories I can share but I think you get the point.

We can choose loneliness, anger, resentment and pain. Or we can turn ourselves inside out and find our hearts exactly where they’ve always been. Right in the middle of our chest still beating while we are still here. So taking loneliness and isolation and upturning that negativity by actively reaching out to those who needed me most when they are in a time of the most need. This is a time when we can all turn inside ourselves or we can turn ourselves outwards and be of love, spirit, and of heart. That is what I am most grateful for for this entire COVID19 situation.

Cancer is difficult mind you and it certainly has its downsides during this whole thing because we can’t go out very much especially if I immune system‘s are compromised by chemotherapy. However We can still give of our personal gifts. And that is the best gift we can give to ourselves.