Layers of Acceptance

losing our lives and the cost of indifferent behavior leadership on the individual

How do you feel these days? Anxious? Nervous? Depressed? Incarcerated? On house arrest? Disrespected? Cheated? Angry? Depleted ? Bewildered? Mistreated?

Do you feel a complete lack of deference to the administration in power in the United States?

Deference (also called submission or passivity) is the condition of submitting to the espoused, legitimate influence of one’s superior or superiors. Deference implies a yielding or submitting to the judgment of a recognized superior, out of respect or reverence.

Wikipedia.com

Lately the windows seem like walls. The walls seem like prison bars. The front door like a vault passage with an unrepentant encryption lock. From the last fateful weeks of February 2020, I’ve been in lockdown and need to climb up Mount Kilimanjaro past the cloud layer, light headed from a lack of oxygen(kind of like if wearing a mask and breathing in my own CO2) to gain another level of acceptance. The insight into what life truly could look like when someone says, “well, could be worse.” I think the current situation with COVID19 maybe the “worse” case referenced in that vague statement of what could happen. And it’s so frustrating. We had several opportunities to stop the spread.

Now, consider this: the CDC is saying the situation will probably last until early 2022.

I feel cheated of my time remaining on this conscious plane in this terminally-ill body. There’s a mockery of global leadership just idling by in the Oval Office. He and his cronies couldn’t care less about people’s lives and what their lack of planning has done to our country. If you watched the second and final presidential debate for the 2020 election. You listened and heard the leader, of what I’ll now call our post democratic society, lie. And lie and lie and lie without putting forward answers to simple and valid questions that effect me and everyone else with a terminal illness.

In cheating their way into what is considered the singly most powerful position in global leadership they cheated us from our precious time with people we love. Cheated us from traveling to visit one another.

Thanksgiving cannot take place over a zoom call. The lifesaving hugs so integral to healing by releasing endorphins into our bloodstreams cannot become real — I had a virtual dance party during a Living Beyond Breast Cancer (LBBC.org) that at first provided some fun. But it’s hard to dance to the beat if there’s an elephant in the room stepping on my feet.

At least with – all the universes willingness – Biden in the Oval Office and Senator Kamala Harris up the hallway as Vice President, I won’t have the stress that I’ll lose my health insurance and my stage IV cancer will be treated as a preexisting condition.

Being forced into retirement at 49 and on disability for the rest of my life, their decisions significantly effect me and others in my situation. Some already have to a pretty large degree. Now we have less access to our physicians. The life sparing clinical trials have all but slowed to a halt because people who are needed to participate cannot travel – this past four year period of time will have lasting impact on so many people. The worst of that impact is our very mortality. It scares me to think the entire metastatic cancer population will be completely wiped out for reasons I cannot reconcile in my heart.

So I think having a metaphysical and mystical experience will help to decrease my anger and anxiety. There was enough to reconcile before this tragic era. Now the tragedy will take decades to right itself if it ever even does. There’s no new normal. We will all be feeling a shift in our lives from now and through the end of days. Talk about the butterfly effect – this is more aligned with a swarm of locusts effect.

So please vote. Please peacefully protest should some outrageous stunt a la Pizzagate and the disintegration of the dream of having the first woman president ripped to shreds. Let’s not forget that when Sen. Harris debated Mike Pence it was a historical event worth celebrating.

Instead a fly that for over six minutes flew around the white head of an ill-elected Vice President became the news story of the day. Proving we are in a time of lies and the bullshit that took our lives and left us to die like carrion on the side of a lonely road. But no one will be by to pick up the bodies. The vultures are already picking at our bones.

Irreverent hospital signage. No shit, that’s how I wash my hands? Thanks Stanford! A university education can only go so far

With that I’ll leave you with a few recommendations of cancer stuff. Listening instead of talking, opening up rather than shutting out brave voices and kinder hearts unafraid to discuss things as they are. Reminding me to live in the moment rather than putting my anger into the world. There’s enough of that going around these days and I’d rather hear some people I have come to know and care about personally. Listen and watch these wonderfully brave people – they’ve gone yards ahead of the written words you read here and it helps me to grapple when the silence is deafening:

Our MBC Life one podcast totally focused on metastatic breast cancer, thank you ladies. Let’s support them as they get their feet under them.

Thanks, Cancer! Leanne and Mimi discuss politics and cancer in their latest podcast

https://www.youtube.com/c/BrainCancerDiaries Rudy is absolutely honest and irreverent and has inoperable brain cancer

Masked Avengers

Cleaved cleft chins, white teeth, braces, pink watermelon lipgloss, and beards all seem ridiculous these days. Behind a mask there’s no way to shine a smile of gratitude to a shop clerk or for someone’s kindness in holding open a door. We look plastic in polarized soundless shock. The cranes fly overhead in t-formations migrating from and to places I never studied and to think about it those birds I knew, birds where I’ve been basking in year and outside tome. We live in the same warmth that those millions of million year old northerners calved their ill suited families to drag suitcases behind them. Straining and scraping down all the front porch stairs while waiving goodbye wearing dry dirt colored corduroys and flag striped mock tops. Masking the sounds of the dead floorboards as winter draws nearer, I cracked my knuckles on hands divided by savage time.

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 lbbc.org 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.