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?

Clinical Trials

Characteristics measure weather 
And driving risk factors.
It's late now to turn back.
And where your next paycheck comes from or where
you’re going to get the food you need to eat?
The luxury of wanting to explore the world
Comes as a consequence
Of knowing there’s more
Out there than just us.
The injustice of beginning to know:
We residents of history
Never addressed or linked together and in the end
we realized that we could actually
Find just the characteristics of right now in this moment
As they say, it’s all we have anyway,
That, and our breath. Yet
I don’t know if it’s enough of an argument fit for
Transcending this place
By simple meditation.
A plane perhaps but by breath.
I’m beginning to wonder
If it’s a hoax or if it’s enough.
With so many factors what did you decide to notice?
To hug chemicals regardless of history’s exposures
Or enter into a race so to predict the risk early on by
The depth of pockets of children picked to share characteristics
Just like the ones who are real that’s one reason why I,
The individual, I, the impossibility of me
Having been exposed to intervene or change the outcome
Yet I know my kind of density.
People often talk about it as if it’s what changes as
A response to differences in stress.
Do you remember how many we saw yesterday
wondering whether we have enough information
Oh, we think we do of
The particular and of the extreme
Yet it’s not like we had to ask.
Questions like who is significantly greater our daughters or
Our grandmothers?
Yet I think this example of the injustice of abandonment or
A response to parental death.
What demonstrates that this is a really
Deep investigation
A lot more exploration to understand where are the places we can actually intervene,
Places to create need out of want?
Yet it might give us some real information about
From historical vantage points
Those of time past and
In the end under our control, Our personality changing:
The way we
The why we
The where we
The what we
The how we and the science
Of the who we are now -
Acceptable or whether to bet
All of us on the risk of results.
Telling out to the world
What we hope from exposure?
Our right, this night
in these hard days to argue against
Conversations, extreme and uncertainty.
When the web of social networks of
women, spinning stark as anything with dreams of
Growing up to be the silver bullet
And to provide important priorities of what we might do to stop this right now
and to be sure,
Done.

Video: Add a Face to My Words

This is one of the videos I have been asked to do this year to talk about life with metastatic breast cancer. They’re difficult to get out – sometimes by voicing these emotions, I feel like I’m separating the cream from the milk if you know what I mean, and afterwards comes the “clouds in my coffee” – and it’s not vanity but tears that fall. When verbal expressions of deep seated feelings surface the sadness fills up and over the brim of a cup I hold delicately in my hands.

I also thought you might like to see me, although it may send some of you to the unsubscribe button I hold out hope that instead you’ll see more of me and the effects of my disease on my life. Please enjoy and excuse the raw, unedited quality or lack thereof. Just life at the dining room table – no fake news, all fumbles and stutters, without subtitles or captions. The real me.