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.