“Let go of your ego.
Send it up up and away!
For a while, anyway.”
Opening my each
Of my eyes I wonder
Did anyone even notice
I’d gone up
Ascending into the clouds
Like a bird or a plane.
I’m looking down
At unmapped topography.
Memories of me:
Images of a wolf running
Through unknown forests
Below the tree canopy;
A blue heron
Flying from the pine tops
Without much energy.
Alone I melt
Like ice cream
In a root beer float.
Red polkadot swim suit,
Yellow rubber bathing cap
Careful eyes look out
Upon blue pools.
Back in the days
When the evening news
Was on paper and
When a date meant
Sipping from the same
Soda with two straws
Across a white and
Gold booth table.
As our eyes lock over the
Last sip, how the
At the tips of your
Tongue and fingers.
I search for my
Self in the daily mirror
But the image is
Backwards and not
Of me. So I peek behind
The frame for a part
Of myself I’d left for dead.
Forgetting to write up
The homework of my experience
Innocence in ink,
Double spaced on lined paper:
My interview and questions.
I won’t forget to
Acknowledge and thank
you in my notes.
But the postcards sit
Unstamped and unposted
I’m at home, heart forever
Elevated above my head.
Today marks my 10th Paracentesis aka periocentesis. Now my abdominal organs can get properly seated after six weeks of fluid build up.
There’s several narratives in the emergency room. The ER patient’s story, and the stories of minimally 12 people whose aim should look through a scope to find the best possible outcome for the patient.
Our history gets passed on like a game of telephone from doctor to doctor to doctor. Entropy, or a lack of predictably. Entropy increases as the narrative of our illness gets passed from physician to physician because no one remembers every little thing about your case.
That is, everyone with the exception of me – the patient. Even in the hospital during periodic stays, nurses changing shifts play a short game for about seven hours. We tell and retell our stories three to four sometimes more a day.
But, we live in our bodies 24/7/365. Our caregivers – all of them – spend very little time undertaking the spectrum of information to paint a completed picture of our health situation. I’ve always wondered why, especially in the context of a terminal illness the new physician, the former physician and the patients don’t have a transition meeting or appointment.
Communictions of this kind certainly would create a better handoff, files and all. Scary I’m shocked to have only found out that my heretofore missing genetic mutation test that had indeed found a broken wrung in the twisted ladder of my DNA. The genetic counselors missed it, my beloved Stanford oncologist missed it, the second troupe of genetics testers at Stanford missed the entire reply from Foundation one.
My new UC Davis Oncologist asked the question about mutation three that caused my former oncologist but still engaging in colleges to look back at the report and found the mutation. This opens up several new treatment protocols to me and I was happy that she asked about it. It is a good start to a good relationship. I hope.
The Poetics of a Patient
We retell our narratives from our own perspectives to tamp down the amount of somewhat predictable chaos. Missing and misread tests and our own views of our symptoms and side effects may not carry forward. We become an incomplete picture. Kind of like looking at a Cubist or Fauvist painting. The details lost in our faces and bodies. We become impressions of our once whole selves. Just as Impressionism gave rise to Picasso and Braque. More stripping away of the face, the expressions of the subjects they painted.
In art that’s up to the viewer to interpret. Yet none of the paintings themselves had any say so in what they look like in the end. They also didn’t receive radiation treatments or chemotherapy.
Painting a picture of health
The side effects of the paintings were in the faces of the viewers. The side effects of the patient are in the patient. It’s up to us to give the doctors a good enough description or narrative to go along with what ails us and from what we believe those painful effects arise.
It’s up to our doctor to interpret our narrative – They combine our words with facts they learned in medical school and from their experience as doctors. They’ve seen cases like ours before. But no two people are alike, just as no two paintings are alike. Even a copy of a painting is not an exact replica of the original.
Oncologists become like the viewers of a painting. We are like the painting. But who then is the artist? We’re not the artist unless of course we lie about our conditions. The artist stands somewhere in between our selves and everyone involved in treating our conditions and side effects. I’m not sure if that artist is what some people would call “god” or some people might say is the “soul.”
But in the end it really doesn’t matter. What matters to the patient is that we recover as best as we are capable.
No one sees the artist at the museum. In fact who even knows if we’re looking at the real Mona Lisa. She could be a copy. That tricky La Jocond.
Yet we become words in a computer system and films of pictures inside our bodies. We get there by taking treatments or curatives. Our curators as doctors relate our tales from one to the next. Somethings go missing in the retelling of our stories. The mind doesn’t lie. It can play tricks on us. We might not remember everything exactly as it transpired.
Other opinions find themselves showing up in the story of our illness. It’s important as good self advocates to not fear reading. Reading the broad overview beginning to now to preserve the integrity and scan for evtropy. The chaos finds its way into our stories. It’s up to us to keep as much chaos out of the systems as possible.
By now, after six years, three main oncologists – doctors not including the emergency room where my husband rushed my pained and dehydrated body one night in March of 2015. The resulting diagnosis: hormone receptor positive, lobular invasive carcinoma with sporadic metastases to the bones.
In other words, metastatic breast cancer. No language can describe the emotional state of which a terminal prognosis leaves a patient. Some practitioners of various specialities conclude that post traumatic stress disorder results from a diagnosis of a death sentence. It’s no wonder many with MBC reject the “war” metaphors to describe our lives post-diagnosis. Presumably in any war there’s a winner and a loser. Losers don’t die. Everyone dies.
Only terminally ill people know from what they will die. There’s no abstraction of death anymore although we live side by side with it from the day we’re born. Some choose to silence death among the way to meet it at the end of our road taken. Still others face it and learn from it that as this is the moment that matters most. And only this breath we take is what we control.
Between life and death
The visceral and immediate awareness coats those of us with a terminal prognosis with a frightening mirror like substance. Everyone can see themselves reflected in your soul, but few stick around. Fear of their own demise shines in your eyes. Deep within us the fire of life slowly extinguishes. Some sniffed out faster than others
Not so coincidentally in the days and weeks when we feel terrible, we think more about dying. The very normalcy of our lives vanishes. It disappears with friends and people we thought wouldn’t leave us in hard times. The hardest times of our lives in the acceptance of our own mortality. Some of us cut short. Some sat before our time.
I believe in the soul. Perhaps not in the same way others do; we all seek redemption of sorts. Yet, there’s atheists, non spiritualists who believe when we die that’s it. But the energy we produced when we lived cannot be destroyed according to the first law of thermodynamics.
That law of physics, or the conservation of energy, claims it cannot be created nor destroyed. If energy is the ability to do work – at the cellular level in humans – our mitochondria turning fuel into gas to run all of our physical systems. The brain included.
Our energy, our entropy
Entropy takes over when death removes the mind from the body.In my mind anyway, energy is transferred from one form to another, some is lost as heat. And as the energy decreases, the disorder increases.
Perhaps we dissipate – dissolve like dust into the infinite vastness of space. Perhaps we recombine to become the reincarnated souls in newly born beings.
We just can’t know now, dear death, the secret of life and our great democratizor. No one can know what’s to become of us once we die. Do we even get to tell our own versions of our lives or do we live without control of our fate. We won’t know here in this reality.
I think about such things at 3:03 am as in the moment before I’ll publish this post. It’s where my control remains for the time being. In this voice, in my own narrative. I can say what I choose.
Narrative of the patient vs the nurse practitioners
This next narrative reads vastly more dry than my own: a patient with an appointment in a teaching hospital. In this scenario four or five constituents aim for and find the best possible outcome for my ailments.
Because of a coordinated effort beginning with an oncologist meeting and listening to the physical and sometimes emotional challenges faced by a woman with six years of history. A woman only as interesting as the narrative by the attentive and skillful nurse practitioner and her intern:
EXAM DATE: 2/26/2021 2:09 PM
INDICATION: Signs/Symptoms: Metastatic breast cancer, needing therapeutic
paracentesis. Establishing care at UCD. Please send for cytology
Attending: Hsiu Jan Chen
Other: Supervising physician: MD.Vu
Informed consent was obtained from the patient.
Prior to the start of the procedure, all Universal Protocol steps,
including a pre-procedure verification process, verification of the
procedure site, and a time-out were performed with all relevant personnel
in the room. All elements of maximal sterile barrier technique were used,
including hand hygiene and cutaneous antisepsis.
A large amount of fluid was identified by ultrasound in the right upper
quadrant. The proposed needle tract was interrogated with Doppler and no
significant blood vessels were identified. The patient was then marked,
prepped, and draped in usual sterile fashion.
Under ultrasound guidance, the area was infiltrated with 1% lidocaine for
local anaesthesia and a 4-French Yueh catheter was advanced into the fluid
collection. Upon completion, the catheter was withdrawn, the patient's skin
was cleansed, and a sterile dressing was placed.
The patient tolerated the procedure well.
COMPLICATIONS: None immediate..
1. Successful ultrasound-guided therapeutic and diagnostic paracentesis
with removal of 4.7L of dark serosanguineous fluid.
2. Fluid labelled and sent to lab for diagnostic studies.
Final Report Electronically Signed By: Hsiu Jan Chen on 2/26/2021 3:57 PM
Radiation Therapy, Trauma or Both?
This story begins back in October of 2020 with radiation treatments. A tumor on my internal L4 vertebrae lit up like a star on the films from a CT scan with radioactive contrast. Radiation damages soft tissue including lymph nodes in its path to reach its intended target.
During these six “easy” sessions I felt incredibly fatigued and in six uneasy pieces. My side effucks seemed far worse than I understood as normal. Friends who underwent much greater rads described far greater relief and less fatigue. Immediately the neuropathy I’d worked so hard to alleviate reawakened with a vengeance in both hands.
I let my oncologist know enough was enough. So I stopped after six of the prescribed 10 sessions. My gut told me both physically and emotionally that six shots killed the tumor. I madd the right choice given the destruction continued to cause side effucks even now, half a year later.
Hospitality and Hospital: same prefix, different meanings
I stood letting the intake nurse on duty at Sutter ER in Roseville, California in on my diagnosis with MBC and that I’m neutropenic meaning my white blood cell count falls short of the low end of 4 (normal = 4 through 11). 2.7 equated for my wbc count on that day.
Instead of letting the the physician who performs the hour or so long, low impact procedure I sat waiting for some blood work results, he went home. The nurse Informed me that he would be paged the next morning but possibly not be coming in until Monday. This was after five hours of prep, being ignored, more prep including having my power port x-rated and then tapped to intake the radioactive contrast for a CT Scan. That was when they told me that I would be transferred over to observation not to the oncology floor. A place presumably full of Covid sufferers.
That was when I lost my mind.
In a recent post from December of 2020, Hearts and Bones, Hope and Stones tells of paracentesesis number nine. That story ends after four hours and a successful draining of 5.5 liters of Ascites at the same hospital.
Yet I self aborted my attempt at finding some relief of an uncomfortable and painful belly – I hadn’t eaten, couldn’t skipped, my feet began to swell like “two balloons.” I wasn’t “comfortably numb” I felt as angry as my insides tried to get outsid.
Paracentesis number 10
Yet instead of leaving 17 lbs lighter, a kind nurse ushered me out to my car at 11 pm at the hospital that professionally drained me back in December.
She just been to visit her 80-year-old father. He has cancer too. She went to hug him before she left to get your plane home and he put on his arm and said no honey you can’t hug me. You’re a nurse and I have cancer. He had me at his vaccinations and she wasn’t sure why. She told me she cried all that night on the way home.
She told me that was no place for me and that there were people with Covid. She told me I would most certainly wind up contracting the disease if I ever spent another moment there. Kindly and quickly took out the plug into my chest wall power port. This certainly won’t become a part of the hospital narrative.
Relief never felt so bad
I found relief this Friday afternoon. A full week after my hospital ordeal. As the liter jugs filled up with a brownish fluid, I felt gurgles and swishes inside and could breathe as my diaphragm found room to inhale deeply and my oxygen levels rose from 93 to 100. My weight dropped off of my 6’ frame from 168 to 151 pounds.
My friend waited for me in my car to drive me home. Gratefulness washed over me like love. The sunshine hit my cheeks.
That morning for no reason at all I awoke from a deep sleep at 6 am. I found the full moon setting on the left side of me and the sun rising on right. I stood between both. I smiled knowing equilibrium would soon be introduced into my chaotic system.
And I smiled.
Pulling from the highest shelf
(Hoping no one noticed)
A book labeled too provocative to leave behind:
“Dead & Pretty”
How they once sipped water through stems
From beneath the clean garden soil.
I sit on oak old chairs at Along library table with hearts carved by keys
Holding initials of what love leaves
Turning pages of pressed flowers
Bowing their heads in prayer hour after hour.
Weak petals dry as ice
Lining page after page with the names
Of the dead typed carefully
To let me not forget:
Poppy, Lily, Daisy, Cassia, Aster
Carefully as though stepping through a grave yard - faster and faster
I close the tomb of wild things
With Short lives. I sit remembering
Trying to sweep away my cobwebs
I find dust and mold instead
My skin the color of smooth stones
My body’s brittle bones
Now the color of magnolias.
Water in those years
Turned ore to rust everywhere. Torrential winter snows
Opened up on sleepy
Flower beds. Springing now
Surprising early yellow tulips Yawning their petals open
Waiting to hear the breezes beat to begin dancing -
Bent and swaying
In their cradle and their grave.
Marigolds in my grandma’s garden
Weeds to her - once graced
Me with my tomorrow’s and memories and yesterday’s.
Can you recall when “I love you”
Was enough to buy more time?
Now that I’m expiring, do you still consider
That money well spent?
You bent me towards the light. Then let me go to cry alone.
I know the dawn - I tell you
Dusk I know, too, time lies.
We’ve come for shoveling
Our rough callous hands holding
A bouquet of ill gotten gains.
Some say we’re born of women
Some only children of men
Yet it’s in the heat of my own body
Where I am born again.
My own flowers are planted in clay pots
Held in by iron fences waiting
For chances at their time in the garden.
If you could do it over again
Would you mind not knowing why?
The fall’s done showing off,
Yet Women’s work is never done
Even once we have succumbed to the worst of it.
I set my timer for high tide
Boarding early. Late as ever
You stumbled as you rolled with the waves.
Why you insisted to save
Yourself yet let your legs give way breaking your stride
Now drowning in tears and years of regret
(told you so I told you so)
“Make memories like books of pressed flowers
Let the beauty lie for you
Make the memories last longer.”
Too busy to listen now listless and deaf
Now throwing yourself to a tear soaked ocean
Right along with my steamer trunk
Filled with your pasts
With all the photographs.
All the pressed flowers now floating like dead fish
Along side my face pressed
Against yours in a kiss.
Now Walking the house end yo end like an old pirate
You won’t sleep until you can’t stay awake.
Once you dreamed of drowning
Yet found a floating plank instead
Freed from a boat that crashed long ago
Its bounty sunk down down on a coral reef.
You never learned, yet I swam
Without taking a breath until I found the
Flowers of the sea at
Depths that mean only one things.
And now with the ahead and forwards alone
How easy to forget how love feels.
Rolling your shoulders back
And now put the book on the shelf where it belongs.
(You knew I was no thief)
I meant to return it at least you choose to believe it.