Metastatic breast Cancer in the time of Covid: Where’s Our Map?

Not to belabor the fine points, but these may indeed top the charts for strangest days ever. Think about this moment in time. Think about everything facing you and your family and just widen your circle to include the entire world. Think about having metastatic breast cancer during this time. The number of days I’ll live probably numbers more behind me than ahead. I am afraid of a shorter less healthy future of travel, hugs, and seeing more of the people and places to commit to my memories.

There’s no maps nor a clear road in sight leading us away to that first day when we can freely go anywhere. There’s no route mapped out to where we can inhale the first breath of fresh air. When will we head outside the front door for the first safe time? Can you imagine feeling the all-safe air fill your lungs, or the rain cooling your cheeks?

What a week.

Close your eyes and breathe like a meditation – breathe in, notice the small millisecond between your exhale – and inhale. That’s the moment of true presence the one we own, the control and letting go of control. It all exist right there and release your breath slowly as you can. Open your eyes, and while you’re still home remember as I try to, this like life itself is temporary. It’s what we make of our time in captivity. It’s also how we preside over our attitudes towards this unimaginable historical reality. We human beings created this mess when we destroyed our environment. Ahhh.

Heading into year two of the pandemic trapped almost everyone with a terminal or chronic disease and compromised immune system. If the past four years creates an historical record of this stranger world , it won’t look pretty. This time when our children hide behind virtual reality and video games to escape the odd feelings of lacking socialization. Covid replaces schools with homes during the most influential periods of their lives. They’ve learned to live without friends and school mates, camp and playgrounds.

This generation who have not known what it’s like to fold and unfold a big paper map. Or to carefully fold the map to the right page so you can hand it to your dad. I got the front seat as the first born and lucky me. We would either use a map my dad pre-wrote in where we’d stop and the route. Or we used a Tripatik.

TripTiks

Sometimes I drove to AAA, the American Automobile Association with dad and got our TripTik for the summer road trip. We’d sit down at a desk with a real live human being, and no one wore masks. Then with a drawer full of single paper roughly 8” x 4” maps taking us from point a to point z all across the United States and I think Canada.

Say we were going from Brooklyn to Acadia National Park in Maine, which definitely happened in July of 1977. At the local AAA that real person, behind a real desk who probably smoked, created a cool booklet. After a discussion of our route requirements, she hand bound with a spiral spring at the top to mimic the road ahead. The booklet or “ticket” of our road trip contained highlighted page over page in a curving line. The line led us over streets, highways, bridges, tunnels, country roads, and through state parks.

Yet best of all the bathrooms and restaurants and rest stops became signs of relief for a parent of a 10 and seven year old. As I recall the real person always used an orange colored highlighter. Then she handed us the booklet with its highlighted bound pages and went page by page, explaining the trip and all the interesting places along the way. And it took time. Lots of time.

But that was okay for vacations, because you could call from a telephone stuck to a wall with a long stretched out spiral cord attached to a handle that used an ear and mouth receiver. You could hang up angrily on people back then. What a satisfying feeling that kids won’t ever know. Then you ordered it in advance if you were in a hurry. But time was different in 1976 and going to get the map held the exciting buildup of our yearly camping trip with my dad.

Now kids know GPS and any of the map programs and apps out there that take the place of a drawer full of lifetime TripTiks. But the personal interaction of the invaluable AAA TripTik – a paper map that came home with writing all over the pages of what we might do or see in a particular place on our way. Never taking the straight fast way there we took the scenic route. We had a playlist on my dads home made cassette tapes and into his blue Toyota Corolla we’d go, me in the front seat as the copilot.

“Oh,our hearts are thumping, you, my brown eyed girl, you’re my brown eyed girl…do you remember when we used to sing…shah la la la la la, tee dah.” Van Morrison filled the car from the stereo and the open windows filled our lungs with fresh air. The car’s equipment didn’t contain seatbelts so I freely grabbed drinks for us in the front from the sturdy cooler in back. I can see my fathers unruly beard flying in the windy car. After the requisite resentment period came to an end and I quit frowning and uncrossed my arms we rode along joking and smiling.

Goin’ mobile.

Now the TripTik comes via a cell phone. Our cell phones produce electromagnetic frequencies or EMFs that bombard the divorced fathers and his offspring while their mother her much needed break from “the brats.”

My mother never thought much about why overhearing these calls might be the cause of the anger and resentment that inevitably took up the first days of the vacation to places full of tears and fighting. Those calls cut my skin laying the deep scars of a foundation for this cancer that’s part of me that my own body produced. Scars must fade if I am to go on for four or more years with metastatic breast cancer and become a full fledged cancer unicorn or an exceptional responder – a person who lives 10+ years with metastatic cancer with no real reason why they’ve outlived all the odds.

That’s my next goal. Yet, given how I feel today, I don’t know if I even want another four more years of these side effucks. I feel terrible.

My dad, or daddy or daddio as I called him, died of a mitochondrial brain tumor in 2013. Inoperable. We passed his 80th birthday this year without him. It’s very unlikely I’ll live to see 80, either. I’ll be thrilled to see a relatively healthy 60. As my mother always said, “you’re just like your father,” her New York accent dropping the “r” at the end of each word. I doubt she meant dying from cancer.

Did I love well?

When I’m dying from metastatic breast cancer I’ll only want to know one thing, as Frank Ostaseski said in a recent interview about his book The Five Invitations. That is that people loved me and “I loved well.” Ostaseski should know. He knocked on deaths door several times with heart attacks and a bunch of strokes. What a way to prove you walk the talk.

In a one hour discussion he gave me more of a framework to hang my forgiveness on than anyone to date. I highly recommend you get the audio book if your vision is blurring like mine or you want to hear the voice of a soothing zen master. Plus he knew Ram Dass. I turned to him right after my diagnosis, looking for meaningful words in a meaningless time.

Trash Talkin’.

Which brings me to this weird point in the darkest days I’ve ever known – days of uncertainty, fear, and isolation. I assume these demotions ring true to a degree, not just for those of us with metastatic cancer. “Hundreds of hopeful recipients camped out at rumored distribution sites only to leave without jabs. Untold numbers of unused doses wound up in dumpsters… #vaccine targets nationwide fell millions short.” (The Nation, February 8 2021)

Aren’t we worth more than trash?

And immunity from Covid 19 isn’t the only thing I have daily worried about on a regular basis. My own body certainly doesn’t make matters any better. After recent radiation therapy of which I refused my final four prescribed only taking six of 10, the tumor on my Lumbar 4 vertebrae no longer showed up on my scans. Yeah.

Well, what we may not be forewarned about is the damage to the soft tissue under the skin of our abdomens. I was told by countless people that radiation is a breeze compared to chemotherapy. Not for this wuss.

Now, for the second time since having radiation, I’m walking, well hobbling about with feet swollen and painful and my shins a bright yet angry looking clown-nose red to a well demarcated line just 1/3 up the way from my puffy ankles. The generalized infection called Cellulitis happens in immune compromised individuals. Yet as I dug into the research, radiation also damages soft tissue as it slices through one’s body, killing off lymph nodes. Because there’s nowhere for the abdominal lymphatic drainage to go for removal from the body you can think of this as leg lymphedema if you will. This, it seems upon some level of self diagnosis backed up by my oncologist is my root cause of cellulitis.

A map of my illness.

That’s the TripTik of how I wound up here at home, stubborn husband pissed off over a seriously misunderstood comment of potentially having to go to the hospital alone if my stomach didn’t cease to be so sore I couldn’t eat or think straight. In light of this please excuse the re-routs of this blog post. Your AAA road mapper for metastatic breast cancer isn’t herself this week. Charming. This condition could go on indefinitely or land me in the hospital for an average of 4.5 days under observation and on IV antibiotics as well as steroids.

Oh and I am beginning the bloat in my belly of ascites. If you’ve been reading along with the bouncing ball riding the Cancer Bus long enough, you’ll know ascites and I have been well acquainted for six years as of March 20th.

With cellulitis, the lymphatic system cannot drain from farther points in the body, either. These lymph nodes have not been surgically removed as with a mastectomy. Conversely they’re accidentally burned to death by radiation therapy.

However to a degree we can also blame Covid. I can’t see my oncologist for an in person check up very often. Thus, we won’t catch these physical ramifications in advance of the becoming a bigger problem. Roughly a month after the radiation treatments I received for a tumor on the inner side of my L4 vertebrae, the first inkling of cellulitis appeared. The infection created a painful and ugly foot problem.

On a video call with my palliative oncologist he was able to diagnose and treat the cellulitis with a visual look at my legs and feet as well as our discussion of my symptoms. Clear cut case of cellulitis. It’s normally treated with penicillin and lucky me, I’m allergic to penicillin.

Angry Infections

Wow, I remember it was quite an allergic reaction, too. At six years old I landed in the ER of Mount Sinai hospital in New York City. My dad racing me there in his blue Corvair, deciding which lights to run as he would turn to look nervously at me . Anaphylactic and red like a bright beet my throat closing up frightened me. It only got worse and worse, and I tested positive for allergies to sulfa drugs, too.

And several weeks later there I sat on a gurney in a brightly lit hallway at the same hospital where I was born on June 21st, 1965 at 8:26 am eastern time. I cannot remember very much before I turned seven. 1972, the year of my first vivid memory.

I do remember screaming in preop about to have my red, angry tonsils and adenoids removed. And it would seem penicillin treats red and angry infections. My legs are red and angry now and it stops at a circle clearly demarcated 1/3 up my shin. I woke up from a nap last week worried my legs might get removed as if I suffered from gangrene. It’s just a daydream, I told myself. Just a bad dream. I wish all of this were a dream too. Including the likely unjustified anger for being last in line for the Covid vaccine and why the non profits aren’t speaking up for their constituents is enough to drive me insane.

Let us be unicorns.

Will I be a unicorn and when does a metastatic breast cancer unicorn earn her horn? Let’s hope I may have the pleasure of still writing lovingly to you and to my friends and family. But especially for you who I don’t hear from but I know want to hear from me. Yet one day my words won’t come. I’ll have no control over whether or not my wishes will be carried out, including my final post after which I shan’t return.

My heavenly TripTik I’d like to think has an Orange highlighter, leading me to any such place close to heaven and not the hell. The kind of hell our world could easily become if we cannot steer this blue and white ship of fools harder and faster.

Hope Shifts: COVID19 to Cancer

I begin and end with hope. Born, we hope to live a long life. We haven’t a clue as to the concept of “not being” yet. It’s hard not to think about the concept of no longer breathing: rising to the sweet smell of ion charged air after a spring rain. The concept of seasons hasn’t penetrated our small forms yet. Fascinating that the eyes never grow and at birth we grow around our big eyes. Can we see more as our unfettered brains not yet cluttered with fear, with not knowing how we may find another meal. We love our mothers. Maybe because she feeds us. Maybe our primordial love grants us the will to cry out in pain, in hunger, in loneliness. As we grow into full fledged human being do we also grow into beings of more fears?

The “fears that we may cease to be” as John Keats wrote so long ago in his poem of the same title at the ripe age of 24, he’d lived in a time when the average age wasn’t approaching 80 as today in 2021. Or perhaps we grow into our hope. Maybe we hope to find love come to dry our tears from our adult sized eyes. Maybe these eyes bring in the light of hope, like the leaves on a tree draw in the sunshine to grow the fruits and flowers. Our fruits and flowers as human beings, at least for most of us, deliver the nourishment of awareness of the good in the world. Some believe in using fear for gain. My world shrinks to nothing if I hurt even a spider. I cannot imagine the feeling of killing either by my own hand or through my power over the way others think. Like in war or in cults.

If it feels like a broad topic, and it may be, it’s personal, too. What’s eating the United States, and from what I’ve read and seen, the United Kingdom, from the inside? Those who we hired by vote to protect us continue to stand aside watching m violence to drip like sweat from the pores of rioters inside the capitol of the United States. My own eyes were struck with fear as I studied a photograph of a police officer whose hand sat on the back of a riotous angry white man. Outside of the picture, he then entered the speaker of the house’s office and sat with bravado and his feet upon her desk. Within 24 hours he was arrested and given a sentence of just one year. Yet, were a black man, I guarantee he’d be a dead man. Of this I’m quite certain.

Yet there’s too much fear to face the disease of racism in such audacious act of treason. A crime against the state. A crime punishable by death. I’m immoderately unsure he deserves such a dear punishment. The brainwashing and propaganda disseminated by the short lived current administration ramped up many without facts that support the arguments of an unfair, illegal vote count. There’s no evidence as such. My own eyes wept with frustration and fear.

The reality of the COVID19 virus and it’s newly transmuted much more transferable viral brother continues to plague the world – specifically the United States and the UK. The first world countries that quickly gave us the vaccines are also hotbeds of exhausted first defenders and maxed out hospitals. We live in counties, my own Nevada County included as of today, where beds in Intensive Care Units reached 100% capacity and makeshift tents hold the sick and ailing infected by the virus. It’s as though we’re living through a war on our defensible land. A land we never thought we’d need to defend on our own soil.

Breast cancer’s not preventable by a mask. Or by self isolation. Or by remaining alone dying the holidays for a year. But we do this in some cases not of our choosing but because we are treated as though we had COVID19 all along. Our concerns include isolation and uncertainty. The concerns people about of COVID19 too include isolation and uncertainty. Do we believe the lessons of the many will translate into the care of us, the few in comparison, with MBC no matter the cause, our skin color, of socioeconomic positions? No, I doubt it. So there’s a connection between Covid and cancer. We’re doubly afraid to become ill, to be ghosted by former friends and family, to be alone and uncertain as to when we will die? It’s not if but when although the incidence of MBC has shrunk by 1.8% according to the statistics.

This country, is the same in which my own cancer center cannot give me an approximate idea of when I will receive the vaccine. This country where as we watch, we become voyeurs of a kind of war I hope to never see again. I watch with the same eyes I saw my mother bring a spoon to my mouth full of bananas and apple sauce. Such a vast amount of time has passed since I came into being as the Vietnam war started to become a reality. One of my favorite writers probably described it better than anyone. Susan Sontag who wrote “On Photography” and “Illnesses as Metaphor” was

“…probably the most influential writer on the intersection of violence and photography, didn’t buy this argument. With forensic prose, she cut through complacent apologias for war photography and set photojournalistic images of violence squarely in the context of viewers’ voyeurism.”

Tejeau Cole, The New York Times Magazine, 24 May 2018

Have we become wide eyed onlookers, ready to lose hope and lives simultaneously as the country must be bribed with stimulus checks like pornography? Have we lost hope in our own ability to find the heavy sadness of mass graves holding the unidentifiable dead who were dropped off at hospitals and found themselves alone, miserable, and dying?

Such feelings of anger well up in my heart: if we had the ability to create vaccinations against a deadly pandemic virus so quickly, what about cancer? Why can’t we put the pharmaceutical community on notice right now and give them the ability to produce an injection against something we supposedly know so much more about? Cancer won’t cause an economic depression. In fact I argue we need cancer to prop up the economy as we require less outputs from the military industrial complex. Who needs to die now in order to inject money into a false economy of unknown and unseen wars? It’s not Iraq or Afghanistan. It’s in my bones. I’m one metastatic cancer patient is worth hundreds of thousands of dollars a year – I read one figure that a metastatic breast cancer patient brings the value of an oncologist to her organization upwards of $600,000 US per year. That’s insanity, statistically speaking. Take a few hours and read through gif following

American Cancer Society’s Facts and Figures 2020 ACS 2020 Fact Book – there’s an obvious problem from the outset. Cancer by definition is a pandemic not treats as such and in my estimation it’s because were worth so much to keep alive. If death is a protest I’d rather not participate. How will you protest our plight? Will our country be well enough to participate in the Die In this year? It do we stand by and watch as we die from what seems to be preventable except in 5-10% that are gene mutations from heredity – and even then is it possible to prevent those people from diagnosis? Here’s a nice neat list pulled together of facts in Breastcancer.org latest statistics:

  • About 1 in 8 U.S. women (about 12%) will develop invasive breast cancer over the course of her lifetime.
  • In 2020, an estimated 276,480 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 48,530 new cases of non-invasive (in situ) breast cancer.
  • About 2,620 new cases of invasive breast cancer are expected to be diagnosed in men in 2020. A man’s lifetime risk of breast cancer is about 1 in 883.
  • About 42,170 women in the U.S. are expected to die in 2020 from breast cancer. Death rates have been steady in women under 50 since 2007, but have continued to drop in women over 50. The overall death rate from breast cancer decreased by 1.3% per year from 2013 to 2017. These decreases are thought to be the result of treatment advances and earlier detection through screening.
  • For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.
  • As of January 2020, there are more than 3.5 million women with a history of breast cancer in the U.S. This includes women currently being treated and women who have finished treatment.
  • Besides skin cancer, breast cancer is the most commonly diagnosed cancer among American women. In 2020, it’s estimated that about 30% of newly diagnosed cancers in women will be breast cancers.
  • In women under 45, breast cancer is more common in Black women than white women. Overall, Black women are more likely to die of breast cancer. For Asian, Hispanic, and Native-American women, the risk of developing and dying from breast cancer is lower. Ashkenazi Jewish women have a higher risk of breast cancer because of a higher rate of BRCA mutations.
  • Breast cancer incidence rates in the U.S. began decreasing in the year 2000, after increasing for the previous two decades. They dropped by 7% from 2002 to 2003 alone. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk. In recent years, incidence rates have increased slightly by 0.3% per year.
  • A woman’s risk of breast cancer nearly doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. Less than 15% of women who get breast cancer have a family member diagnosed with it.
  • About 5-10% of breast cancers can be linked to known gene mutations inherited from one’s mother or father. Mutations in the BRCA1 and BRCA2 genes are the most common. On average, women with a BRCA1 mutation have up to a 72% lifetime risk of developing breast cancer. For women with a BRCA2 mutation, the risk is 69%. Breast cancer that is positive for the BRCA1 or BRCA2 mutations tends to develop more often in younger women. An increased ovarian cancer risk is also associated with these genetic mutations. In men, BRCA2 mutations are associated with a lifetime breast cancer risk of about 6.8%; BRCA1 mutations are a less frequent cause of breast cancer in men.
  • About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.
  • The most significant risk factors for breast cancer are sex (being a woman) and age (growing older).

In this I shift my hope again. I shift it to the general population and their eyes – the same eyes they’re born with and will die with to my and so many others bodies that have turned against us. Don’t look away. Don’t run when you become aware of a friend or a cousin with metastatic cancer. I leave you with a poem to describe my feelings in this matter.

Beaming with Hope

Hope Leaves on
Lemon trees fruits
Subject to yellow
So one tart section
Bites all the sun.
Drip juices ascetic
The most acidic of
The citrus
The gods gift to us
Coming forward to trust
The peel’s oil, metal rust
Can take the tin
Cans bring them all back
And then
Go hone a skill
And sip a little water from
My will.

I beam with a mess
Of healing light.
I received some, too
Today maybe the perfume
Left by a sweet
Mass, blood in a chalice
Quenched as
I dressed up like a goddess.
Secretly becoming
Scarred. Interested less
In hiding.
Can I remain in a nest
Like a red robed Robin
Born from blue
Shells that belie my lacking oxygen. On a beach
A great beam of
Might from
The lighthouse mirrors
Cut out a collage
Of media mixing
Flies and I file
Away the thinking
I can fix anything
Back anew.
Single file out into
A line we become one
Place where health walks heel to toe.
My place comes
Like everyone’s, eventually.
When can I conquer the enemies?
When does the line stop? What time Will it take up to heal the world?
We’re listening.
Without the next answer
Every green sings again
Every blue sleeps again
Every color clears again
Every hell
Finds its heaven again.
Open mouths breathe in to
Blow out the candle of our spirits.
Our lungs absorb – All the tears
Our hairless heads – All the rain
Our sore mouths – All the laughter
Our frail bones – All the power
Our thin skin – All the weakness
Our open hands – All the dealers
Our empty wallets – All the takers.
The gamblers and the monks
The grifters
The punks
And the lines of the me’s and the you’s
Lose all the freedom.
To know my soul
Existed before I boarded this train:
Crossing borderless countries
I am Aimless and unclothed
And I Break in my body.
There’s no optioning
No ownership
No forever
Not even a
Time share.
This time I cannot
Work to pay
All the rent.

As a spawn of the dead
A pawn of this life
For what I deplore
And who I defend
The punch
Line without any joke
Echoes in lustrous
love
And up in the
Attics unpacked
Into those dusty
rafters of hope.

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.