Metastatic Breast Cancer: A Day in the Life with COVID19

Yesterday morning at 1:00 am I departed the ER after 12 hours. While I entered and was admitted to the hospital because of metastatic breast cancer I was discharged and departed of my own demand for release from the hospital because of metastatic breast cancer. This, the great irony of terminal illnesses, brings me to the frustration of the story I’m about to tell you. So sit back, pour yourself some green tea, and prepare to get anxious.

I belonged upstairs on the oncology unit where my beaten and battered immune system would be looked after by professionally trained oncology nurses and doctors, and there’s not one Covid 19 positive patient with symptoms. I sat, laid, fidgeted and cajoled for 11 hours in my own somewhat safe space in the emergency room. I breathed quietly and with a sense of rather false security: a HUGE HEPA filter next to my head and the maximum oxygen allowed pumped into the room.

The 11th hour.

After 11 hours, the staff determined it best to keep me overnight in “observation.” Observation filled with Covid 19 patients. They put me in the back corner by the door supposedly away from other sick people. Rarely do tears pop out of my eyes. Not in frustration or from sadness. Unless the frustration and or sadness pulls them down my cheeks.

The physicians refused to fully admit me and allow me onto the oncology floor after quite some time. It was obvious I’d get no relief from the discomfort of fluid pushing out from my inside. My ribs feel like they may crack open. My back and hips are as sore as if I’d spent the day practicing to be on Dancin’ with the Stars.

This situation brought me to tears: two nurses led me from the clean, quiet room I’d spent the last 10 hours inside equipped with plenty a preventing apparatus into a filthy dusty room across from the janitors area. The janitors spoke as though they discussed an American football call of holding on their home team of which they disagreed. The janitorial staff constantly banged and swooshed and chattered about buckets and rags of materials used to clean rooms. I couldn’t imagine getting out without Covid, a belly full of Ascites fluid and cellulitis.

Plenty of Fluids

Ascites and cellulitis brought me in after I’d already received sub par care from a UC Davis receptionist and nurse on Tuesday of the same week. The one hour drive each way exhausted me. I slept most of Wednesday.

Thursday I debated with myself until it became clear the afternoon hours when the ER became busiest arrived. I determined it best to arise from sleep as early as possible on Friday and go to the ER then. My palliative oncologist and I agreed on the ER as the best bet to achieve some relief of the 20 lbs of fluid my in my body.

Is it really worth it?

I really broke down when the ER observation doctors told me they couldn’t guarantee I’d be seen until Monday. Nor could or would they move me or check me in, even for respite care, to the oncology wing where no one suffered from the pandemic virus. The physicians who both hadn’t read my chart yet said I’d be fine. They assured me that my 2.7 white blood cell count would protect me. Normal is 4-11.

As I didn’t want to cut off my nose to spite my face I calmly said, I’m sorry but isn’t Neutropenia below 4? Apparently 2.7 seemed good enough to this particular observation physician, which is why I have cellulitis to begin with. Can someone please just say fuck you? At least I can handle straight forward, but not “umm” and “uhhh” and the inconceivable conclusion of two seasoned physicians to not keep me away from the added danger of contracting Covid.

The nurse in ER only came to tend to me as I was threatening to leave – I’d hit my boiling point. He said, sarcastically, “oh I’m sorry I was taking care of sick people.” I said, “really? What are the chances of any of the people you’re seeing right now are dying from whatever ails them tonight?” He said, “none”. I replied, “ wrong – you’re seeing one – ME.”

Then he stopped as he started to move in a positive direction only to tell me, “sorry but the physician who does the paracenteses left for the night and we will have to page him in the morning.” The doctor who’d seen me earlier told him to inform me I’d be better off staying. I’d already been prepped for both the CT scan and the drain, had my blood and urine tested, and tested negative for Covid. By then I had an ultrasound on both legs to check for clotting.

Good news there. The ultrasound showed no clotting but it was a painful procedure given the way my legs felt with any pressure at all on them. It sounded very creepy, too. I could hear my inside sounds over the stereo in the ER room where I laid, with pre warmed KY jelly coating my legs from groin to toe. Have you ever heard your own circulation on a stereo? It’s exceedingly weird.

Dye, dye my lovely

My blood was drawn via needle to my vein and I peed in a cup with my name in block typed letters. Both fluids were sent off for tests and no one reported their results to me. I also was to have a CT scan with contrast. Mind you I’ve had a CT scan and a PET scan at the very same hospital in which I laid waiting. BOTH times the radiology department used my port for injecting the radioactive contrast dye.

Yet they required proof by x-ray to show the letters etched into my port revealing that my three pronged apparatus indeed was a power port. It can take a certain amount of pressure per square inch so that I might get the contrast via my port. They could not, however, take my blood work from the same port because they said the blood could be infected even though they do a flush prior to any use. Clearly I was not in a hospital where they deal with much metastatic cancer.

Well, how did I get here?

I asked again if indeed I would be getting both the CT scan and paracentesis in the morning. He assured me that yes, this would occur. We will page him first thing. I said, “but he knows I’m here right?” He didn’t know. I almost lost my mind but quietly, so not to piss off the keeper of the keys to the kingdom. This kingdom I entered that day for sepsis potentially ravaging my already weakened body and compromised immune system:

  • which is why I have been prescribed the third antibiotic in as many weeks
  • which is why I went to the hospital to insure I was not septic
  • which I may wind up admitted to another hospital because I have:
    • muscle aches
    • very painful puffiness/ fluid retention in my feet and legs
    • a well defined red ring about 1/3 the way up my shin
    • nausea and lack of appetite
    • very strangely dry skin on my legs
    • hard lumps under the skin on my inner thighs
    • 20 lbs of fluid weight gain in about three weeks.

Statistics on Cancer and Covid

  • The COVID-19 pandemic may cause additional (excess) deaths due to both the direct effects of infection and the indirect effects that result from the repurposing of health services designed to address the pandemic. People with cancer are at increased risk of contracting and dying from SARS-CoV-2 infection.
  • Optimal cancer care must balance protecting patients from SARS-CoV-2 infection with the need for continued access to early diagnosis and delivery of optimal treatment.
  • Professional cancer associations internationally have recommended reducing systemic anticancer treatment, surgery and risk-adapted radiotherapy
  • According to EPIC, a popular electronic health record system, there has been a drop of between 86% and 94% in preventive cancer screenings in 2020 for cervical, colon and breast cancer across the United States, presumably due to access disruptions caused by COVID-19. These numbers looked at averages each week in 2020 and compared them to equivalent weeks from 2017–19.
  • In June 2020, the National Health Service (NHS) released statistics for April 2020, indicating that referrals to a consultant for urgent diagnosis of cancer had fallen by 60%. Some cancer surgical procedures have been postponed and cancer screening programmes paused.
  • Short-term (30 days) death in people with cancer and COVID-19 is importantly driven by (treatable) comorbidities such as hypertension and cardiovascular disease. Public Health England (PHE) has identified patients with these and a wide range of other non-malignant conditions at greater risk of developing severe illness from SARS-CoV-2 exposure, while multimorbidity in cancer is an increasing clinical concern.

Safety first.

What to do?

Be careful out there my friends. It’s a dangerous world right now with a reported 4% of United States citizens only having had the vaccine. But not cancer patients under 65 years old. It might be April before me and others in my situation can get the vaccines.

So if you ever wondered how Covid 19 effected people with cancer and you felt uncertain, mine represents one way in which it can. And the pandemic, the lockdown, the isolation, the access to care and our worries and fears continue to steal our healthier days prior to the time when the imminence of death comes to seek us out.

As those days add up behind us, we hope and pray there are more ahead than have already passed.

Yet in the 40 or so pages of hospital release paperwork I found a list of populations who were at risk for Covid19. I’ll be darned that the first mentioned group of people are those with cancer – on a list of about 30 at risk populations.

Irony and cancer make strange bedfellows. Irony doesn’t cure what ails me, it won’t make me stronger, and I cannot find the humor in the situation at this moment in time. I feel the fear as though I’m looking down a cliff on one side of me and a herd of rabid zebras coming at me on the cliff. Do I jump or get ravaged by the foaming zebras?

Dense Breasts

Recondite illnesses of fateful obscurity

A snowball in a snow globe seen yet difficult to see

Unusually dense I failed each test

Winter settled in leaving flurries in my chest.

Scratched and scarred and moored by a port

I laid there waiting in pain and contorted.

“Go home get your affairs together.”

But there’s too much to tend to, my nest still to feather.

A future unknown with three tumors unseen

Cut my life down the center right in between

My eyes through the site of a two barreled gun.

The results signed by a doctor reads, “yes my PET, life’s over and done.”

But I raced away until I could no longer breathe

And decided that my life was too valuable to concede.

But when density was a meaningless number

Nothing to report no information for the owner

Secrets and lies and then one day a surprise

When the ultrasound found what the snow had disguised.

So here I sit nearing six years later

Among my affairs and hoards of paper

I decided that day I wasn’t through living.

And not doctors or nurses but I who needs forgiving.

It’s no ones fault when their born to possess

Two ticking time bombs planted in their chest.

There’s a gene a mutation that no one can find

So my kindred spirits in body and mind

Please look at me, doing well enough I hope

It’s cancer – not God’s punchline to a killing joke.

/https://onedailyprompt.wordpress.com/2020/10/19/your-daily-word-prompt-Recondite-ydwordprompt-October-19-2020/

Soul Drunk

“Don’t wait” the first 
Invitation*, states.
Subject and verb meant
What I heard: it’s my turn.
These wasted times,
My healthy days numbered
Counting crows in a line.
Life and death married
And birthed you together
So don’t wait for
Tonight or for daylight
When winds kick up a mess
Of better yesterdays.
Sour mash in a dirty glass
Ice diluting the burning
Hoarse throats from thirst
So deserted, beyond quenching.
Straddling my legs up to the bar
And wild wet eyes find
You outside of the frames
pictures -you took them, too.
Stored in musty boxes
In basements and attics
All dressed up, obnoxious
When glasses obscured by
Bottle blondes divorced and lonely.
Time in the mind only reminds
Us of what no longer stabs at
Our hearts. Funny things:
Gene’s helixes and a pine’s cones
All the sacred plans for galaxies
Spun Nautilus shells and
The ringing bells in my ears.
Yet some refuse any sound
Like the dying refuse food.

Outside nature awaits and what sings
Of life alone in the flutter.
Nudging the willow tree’s long locks
A hummingbird wings create unrest.
Crying tiny drops of firelight
Candles leave wax rings
Worn into wood, married by ownership
And warning our bodies
in the dusk’s lazy sun adrift the sea
Winking goodbye as it hides for the night.
At home we take the complaints of stuttering billy goats
Where clamorous hens kick
At the roosters who forgot a nest
Or two. What about me?

It’s the way we all feel
Have they no idea
our children fled the nest -
Leaving their rooms full
Of their trophies
While we wait to sleep
In fitted sheets
Dug in graveyards with
Names like Star of David.
Smoothed over blue grass grown
Watching the dead proves
Equally as boring.
It doesn’t mean a thing
I mean that nothing was meant by it:
To say that at birth
We become life and death, as one
Intertwined together.
Growing taller, spinning
Until we grow dizzy and
Giggling in the know
Of moment we will fall
Carefully goes the innocence
Spiraling, radiating out
Of our mouths the
breath of love itself.
Rejoiced in our screams and cries.

A call to our guilty conscience
That wears heavy on our bones
Asking again to what ever we’ve
Said no. Must we unpack and
Put their guilt in the pantry
Set the table with the China
The sheets hang out in the
Golden dusty fields
Collecting the scent of
Late sunlight in baskets
After hanging up on the lines
With the rest of the whites
Faded and drying we remain
Dying in the sky tidally locked
Like the moon to the earth
And never once asking
For more than a simple goodbye
“One day we will meet again”
Though I never have
Known you in your own skin
Only under layered pelts
Like laundry hanging from your deserted bones.

Dare we share the bond
That darkness cannot control?
Isn’t that a woman’s fate:
to allow men to drink
Until they drain our souls?

*from Frank Ostaseski’s The Five Invitations, highly recommended on audio book as read by the Author.
“Don’t wait,” is the first invitation. One cannot live their entire life or tell all those they love how they feel, or forgive even yourself of any pain; it’s never too late, however.