Eroding Layers of My Body: exhausted and radiated

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

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

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

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

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

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

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

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

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

A day and a Night

My layers upon layers of sleeping, dreaming, eating,

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

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

All of our layers come as a surprise

A few recognized

Many in disguise.

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

Yet there’s nothing even about anything

As one layer thickens as some erode away.

Some the color of iron warp

To swaddle to blanket the others

Waiting for a turn to bathe in the sunshine

When we haven’t got time.

Those colorful striations of existence

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

Beneath the drifting snows of sanity.

Yet without becoming buried in blank acceptance

For whatever was seemingly so pressing on me before

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

Yet my words find a heart

And mind to translate context

And in this virtual morass of tongue and text,

I can hear myself scream in a vacuum

Where my verse finds a way to meet the next

Pair of opened ears and piqued senses.

Hearing the perception of other voices

But through clearer eyes understating

This page read from multiple choices, and yet,

There’s never any fear of rejection.

Not here not now. My team pulls the weight

Beside me – attached to some antiquated carriage

Inside, the cargo more precious than we –

We who fear the shame of awareness

When we pull the quill away from the page

And the blinders fall away revealing our periphery

After the shock of daylight, clamping

Down on the bit, metal fit into our mouths

So not to release the screams

As the whips tear at our backs

Leaving open cut and scars at our seams.

The team free from the sentimentality

Loosed from the harness of our own intent

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

Where the words speak free.

Put the verse out to pasture without our consent

Those invisible hands hold tight the reigns

l become bridled by imaginary disaster.

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

One who doesn’t beat out the beauty

Or strike me with cruel force.

Instead please feed the verses apples and sugar cubes.

For today anyway, let the carrots and sticks wait.

Lessons from Lockdown – Julia Barnickle’s eBook for Summer 2020 What if life were meant to be easy?

Julia Barnickle the Easy Life

As Julia Barnickle puts together her second eBook, Lessons from Lockdown, she called upon me and 12 other writers to join her and contribute an essay. I sweated about my timeline, not wanting to disappoint a good friend, loving human being, and all around supportive soul. She, like I, has metastatic breast cancer. Unlike me she’s a polyglot, an introvert, a Brit, and has a fabulous voice. Check out her YouTube channel

Julia writes:

“Anyone who knows me well, knows that I’m always saying I’ve had an “easy” life – even though I’ve been living with Stage IV (“terminal”) breast cancer since 2014. I wanted to write a book to expand on the topic of an “easy life” (or a life of ease / flow) because I believed people would want answers to such an important question. But I was stuck with the feeling that I’d said all I had to say. In 2019, I realised that a book about creating a life of ease needs a multiplicity of viewpoints. One solitary voice and perspective just isn’t enough. So I decided to turn it into a community project and gather inspiration from a variety of sources – and I asked a bunch of my friends to write an essay each, expressing how Ease or Flow has manifested itself in their lives.”

We’ve been friends for some time now, although virtual, developing a loving supportive relationship from miles, an ocean, and countries away. There’s proof when you share a terminal illness one cannot always find friends around every corner. We know what one another experiences and how we can turn those experiences into a community of people like ourselves. Based in commonality, out of what seems a sad and unfertile ground, instead grows and blossoms deep, meaningful friendships. As I’ve argued before, we commit to telling our stories, which are very intimate, and therein lies the foundation for our relationships. We hold one another up in hard times and cheer each other on when there’s a win to celebrate.

She knows my writing style well enough. So much so that in writing an introduction to my essay for her 2020 summer’s ebook “Lessons from Lockdown,” she’d prepared the audience for my straight forward, yet poetically-infused prose. I’m grateful to be in the company of writers whose gifts for encompassing difficult subjects with grace, wit, import , and creativity. Each helped to vary the ideas and topics we tackled differently, but with a similar conclusion: use the space in your life during the COVID-19 pandemic to create self-satisfying outcomes without wasting the opportunity to do so.

You’ll get much out of the time you invest in reading each of the essays. I urge you to go and click on the link above and take a read of the other lessons from lockdown. Here’s my contribution to Julia’s “variety of perspectives.”

My Relationship with MBC and Time

There’s only one single impossible to ignore facet of living, other than death, and that is change. For we cannot escape change any more than death – life itself is a terminal disease – we are born to die but were also born to live. We can take joy in the changes that time presents to us moment by moment, rather than failing to see the wonder of life’s ebbs and flows. I can hit my head against a brick wall trying to avoid the inevitable, but why feel pain when it’s absolutely unnecessary?

There’s a hard truth to that brick wall in relation to the detrimental alterations of ourselves caused by cancer. Out of our own control, cancer and Covid19 both share the same negative circle of life’s huge Venn diagram of positive and negative emotions. However, there is room in the overlap with the positive emotions. Believe it or not, the major transformation takes place in emotions that are highly negatively connoted: uncertainty and isolation. Covid and cancer both place a handcuff upon each of us and can transform our lives without a doubt. For metastatic cancer and the Covid epidemic, these are the top two psychosocial complaints.

To describe uncertainty and isolation as negative isn’t necessarily the correct approach to the situation. Indeed if you replace “uncertainty” with “change” and “isolation” with “time,” we now have shifted to the positive side of the Venn diagram. Perspective keeps those of us with metastatic breast cancer alive with hope. And change and time factor into hope in an enormous way.

Let me explain. Uncertainty and isolation can both be viewed as negative outcomes of metastatic cancer and the Covid virus, but do they have to be completely negative? Neither has to bring us down to our knees with misery. In fact, our relationship to time itself can take on variations and permutations we may not have known existed.

More time, more moments of quiet and peace, although perhaps imposed rather than chosen, give us more space to think, learn, create, deepen, fine tune and ultimately develop new skills and experiences.

In fact it’s not necessarily even a lack of time, but aspects our personalities exhibit as adults, that keep us from experiencing the wonderment of learning for example to draw, to paint, to write poetry, to ride a horse, or even something as personal as to meditate. All of these new skills require time and a turning down of the fear of failure.

But let’s be honest with ourselves. It’s not time or fear but our egos that get in the way of not having a perfected set of skills to immediately present to the world. Et voilà! Here is my born of a virgin masterwork of art, as I am an adult prodigy of painting like the Dutch masters! An operatic singer lived inside me all these 55 years and here I am at Carnegie Hall! Laughter is good medicine for the ego – as it is for cancer.

Yet as we understand it, time marches on regardless of hope or change. Time shifts, in some strange way, came along as a bonus with my metastatic breast cancer diagnosis. My relationship to time changed my relationship to my entire world view – both internally and externally.

The internal transformation manifested itself in ways both obvious and undetectable to how people view me – both before and after the diagnosis five years and four months ago. Surprisingly to me, the actual dispersed mutations stage 4 cancer has inside somehow became eclipsed by the vicissitudes my diagnosis made on my relationship with the external world. This shift includes: my friends and family; my financial status and my ended 30 year long career; and my comfort with my own body in that it’s turned against me somehow; and coming to terms with all the shifting changes of my life. Oddly the same shifts that Covid seems to have upon the rest of the world, minus the approximately 155,000 of us with MBC [in the USA] who already know.

I had a friend, who I think was going through menopause at the time, say I was not being respectful of her time although she knew I wasn’t able to get to her place sometimes due to traffic, and others due to over time oncology appointments. Once she even offered to get in line early for a huge rummage sale and asked that I simply be there before 8:30 am, and I was – she reassessed her POV and said I was terribly selfish for taking advantage of her. Between time and money I seem to not have enough of either for her. She understands now, however and said she really finally got what I meant about losing myself in a project, a long meditation, a great view of a sunset. Whatever the next beautiful moment might bring me.

I think Covid is the first occasion where it’s come full circle since I once had all those responsibilities. And the responsibility I have is to my body and my mind now. The health of those allows me time to be with people I love, to write, to learn to draw, and to help others with my 5 plus years of knowledge I earned the hard way through experiences, now to become a true patient advocate.

I’m so happy to feel something of import can come from all this. And I’m trying to see my way to giving myself the permission to do so. To me if you’re getting your work done who cares when you do.

You’ll thank yourself for the time you’ve spent and ask yourself what you’ve always wanted to ask yourself with the advance of time and the gifts that change brings us – medically and emotionally. And to be given such gifts allows us to enjoy what we’ve always wanted – whether through MBC or Covid.

As the late Gilda Radner said: “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”

Delicious indeed.

I’m a poet. I am a writer. I am a woman with metastatic breast cancer. Like me prior to March of 2015: Incurable and alive. My life prior to diagnosis at stage IV consisted of the wobbly first steps of my life’s spiritual journey.

I do not believe cancer is a “gift” or a “war.” It is not a choice I made nor a karmic wheel pinning me down. It’s an epidemic and I am 1:3 women who have or will become diagnosed with this shit.

It’s incumbent on me to share of myself with anyone who cares to take a peek at the moments in my life by modality of essay, poem, rant, and above all love. I give gratitude and positive stadium waves to you for your support, including those who remain strangers and those who become friends.

Currently I live in the Bay Area of Northern California with my partner of 10 years and my cat-son, Simon.
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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