Paracentesis#10: metastatic Breast cancer treatment side effects

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

Picasso’s Lady in a Hat

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:

ULTRASOUND-GUIDED PARACENTESIS
EXAM DATE: 2/26/2021 2:09 PM
COMPARISON: None

INDICATION: Signs/Symptoms: Metastatic breast cancer, needing therapeutic
paracentesis. Establishing care at UCD. Please send for cytology

PROCEDURE PERSONNEL:
Attending: Hsiu Jan Chen
Other: Supervising physician: MD.Vu

TECHNIQUE:
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..

FINDINGS/
IMPRESSION:
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
Nearly five liters removed each weighs 2.7 lbs

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.

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/