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.

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.

Cancer: It’s all in your head

This third week of January 2021 brought about change. The one we’ve sat in our homes waiting with a national- dare I say global – collective held breath for Joe Biden and Kamala Harris to take the reigns out of the hands of a thief. After four ugly years of a petty loose cannon, from whom I hope never to see on the public’s big screen again. But hope is a fickle funny emotion. Still…

My small world, too, experienced a very strange week full of let downs and lift ups, full of mourning, and as a victim of public gaslighting in which the context did not distinguish itself until it took on a life of its own as the person exhibited classic narcissistic behaviors.I must have repressed response triggers dating from my childhood via my mother who herself had low level narcissistic personality disorder, mostly jealousy and selfishness mixed in with a sprinkle of well-hidden immaturity. We’d have celebrated her 80th birthday on the 31st had she not succumbed to Alzheimer’s.

Thick as a fog the sabotage took over the sunny afternoons in a healing circle I belonged to for the last four months. And healing happened in a very loving and kind, warm and receptive environment using Zoom. Zoom, the latest video group call application works fairly well as you can be a part of the Brady Bunch, yet with the ability to speak and with far better clothing choices. There’s no maid named Alice in a healing circle, but there’s the parallel of a kinder and gentler less misogynistic mom and dad roles in the Host and Guardian. All of this in the name of full transparency of course is available publicly through commonweal.org or Healing Circles Global. Nothing should have alerted us either since confidentiality outside of the circle is tantamount to its ability to achieve what it sets out to do.

A deluge of emails alerted me and all involved to the escalating circumstance that grew in dramatic undercurrents until I drowned in a tidal wave of someone’s need for recognition and to become the host. I was asked my preferred role – my email cc’ing everyone as requested of us basically said – either is fine, let’s see if it can keep its momentum and if not we can revisit in a few weeks. In a healing circle, each person enters a circle to be held in the loving arms of all participants. The roles of host and guardian no more and no less than having decent intuition, sharing of themselves as they choose as they’re there first and foremost for the same reason we’re all there. They also are adept in using prompts and asking questions, the guardian keeps time, and both insure there’s no cross talking or interrupting. It’s an intuitive role in that we use silence as a healing tool and to know when to call for a short one is up to everyone and anyone but that’s it. You really need to be sensitive and have a good gut for these things, I don’t purport to have either but I enjoy it and have had the fortune of some very wise women to bring out the emotional stuff that our strange days created a big bullhorn for all of our souls with Covid and being in lockdown, we need one another more than ever.

What really shook me and finally got a rise out of my emotional equanimity: she used my metastatic breast cancer against me. And of course this weighs heavy on my heart and of course comes up in my sharing. But I shall never speak for anyone’s decision to talk about what they will or whether it has a place in a healing circle or not. If I understand them correctly wherever there is healing there is a healing circle. It can be between one person and another it can be between 234 or 12. Certainly there’s a limit because time is short usually they run about 90 minutes. There’s no power plays. Everyone leads everyone helps themselves but does not try to help anybody else. We come to circle to fix only ourselves. Sadly our circle couldn’t hold as a result, and I won’t forget any of the lessons of the circle or the collapse.

It is in our heads, afterall

As the subject of this post indicates I believe cancer of all kinds – brain, breast, metastatic, inoperable, terminal – has roots in our heads. The psychosocial influences of stress on our bodies. Childhood traumas that cause fight or flight responses. The feelings of insecurity and basic need inadequacies that lead to less than fairy tale adulthood’s.

The fact is, reality of course is all in our heads. In many ways cancer is our personal reality. Cancer we know from long term studies, can be agitated from our cells into real tumors by psychological pain and suffering inflicted in childhood. In fact, listening to Breast Cancer Action’s most recent podcast, there are some incredible statistics on adverse childhood events, or ACEs and the incidence in fact is very much connected, enough to become concerned with my own health and its roots in my childhood abandonment by my father and later my mother.

In this recent January ‘21 episode, the guest, Dr. Barbara Cohn, found in her research some very compelling and statistically significant connections between emotional and environmental stressors during formative years on a woman’s propensity for breast cancer. Maybe it’s not as much in our genes but in our minds we should do a deeper analysis to find the root causes for what she found by way of looking at, for instance, women who lost both parents before the age of 21. I pulled my car over to take notes I was so dumbstruck by the evidence. Evidence that at a gut level I knew from the day of my diagnosis that my past had come full circle to try to take me down with it. Wherever my parents are now, I was surely headed too soon, but based in my reality I also felt it has as much to do with the other autoimmune physical problems that beleaguered my health from my first ulcer at 12.

In fact during my respites at the Cancer Help Program through Commonweal, through which I came to find out about Healing Circles (talk about circling the square this week!), healing our childhood psychological wounds to get to the bottom of not just the potential root causes of cancers but healing our souls to heal our bodies. This very concept is a focus of the week long cancer help program. It’s central to our life extensions as I find peace with and forgive both my parents and myself. The women who lost their parents to death I think likely mirror my own abandonment by both my parents before I turned 14. And here’s what the study found:

  • A 4 1/2 fold increase in breast density
  • A 24.5 fold increase in HER2 positive types
  • An 8.5 fold increase in de novo metastatic breast cancer

I encourage you to listen to the episode which you can find on their web site Breast Cancer Action .

My Father’s Daughter

There’s also the kind of cancer that starts in your head and will eventually kill you. The inoperable kind. The kind that my father died from 13 years ago. He would’ve been 80 today January 23, 2021. But he’s no longer here it was all in his head.

The surgeon couldn’t remove the entire tumor without encroaching on his ability to care for himself. Only able to remove half of his mitochondrial tumor my dad knew that I understood what he meant by being “unable to wipe his own ass.” I did. Yet he came out of anesthesia not in his own head. He became the antithesis of himself – mean, nasty, yelling. Everything I knew about him became moot for about two years. That was all in his head, too. My brother and father never got along well. That is before 18 hours with his skull opened up and brain exposed to the air, the penultimate in compromising the blood brain barrier.

I have a friend who taught me the differences between metastatic cancer and in operable terminal cancer. Both still can be in your head. Then there’s the kinds of things that are in your head that really bother you about having cancer. Knowing it’s in your body. Knowing in the case of MBC it can reach your brain. And Brian metastasis is one of the things that scares metsers most.Then there are the strange things about having metastatic breast cancer. It’s not wanting to tell people about your cancer or to talk too much about cancer. It’s deciding whether you want to use Twitter, or Facebook, or blog post, or Instagram, or Vlog, or any kind of social media to tell your story. Or perhaps you don’t ever publicly tell your story. That’s in your head as well for you have to determine how much you want to talk about how personally want to go and certainly how much you want other people to know.

That’s what my week was about. How much do I want other people to know?

In a support group you only hope that the environment will be, well, supportive. That the people in your group will hold your innermost hopes, fears, and dreams confidential. My confidence was broken this week. But as it turns out it was also repaired by people who truly care about my well-being. The person who broke my confidence was not a friend of mine. She was merely someone I knew that was in the support group that was called a healing circle. Healing circles are meant to be just that: when you are “in circle” you are there to see and speak what’s on your heart. What’s going on. It’s not just for cancer patients it’s for people with a beating heart -for everyone. This particular group focused on uncertainty during COVID-19. And that’s doubly difficult for people with metastatic cancer because in many of us are immune systems are in the trash. We can’t go anywhere, we can’t really see anyoneAnd it’s even difficult for us to get the treatments that we need, the life-saving treatment, the clinical trials have been canceled. But we have to stay positive don’t we?

And that’s all in our heads.

I attended a new circle today thats on writing through COVID19. We were given a list of word prompts and I chose “sanctuary” for my prompt. It  led to this raw, unedited poem. I am sharing this with you, dear readers, because at times we all must show the real self as what’s in our head and our hearts, just as it spills out onto the page. Unburdened by the need for perfection we find ourselves in the sense of what’s true and real and thus sacred. Allow no one, especially not for the sake of ego, rob you of your truth. This, as the Victor Frankl quote that touched me so deeply today and sits at the head of this blog post, is where the imperative to find deeper meaning commences. Sometimes sharing of ourselves in finding our own meaning we can join one another in finding common ground. Right now it’s as important if not more than ever to find common ground to heal our divides - between one another and within our own heads. Yes, it’s been quite a week, for me, for us, for our community. 

In each of us lives a kingdom of hope. But may no single individual or ideology become so self important as to rise to the level of a self proclaimed monarch again.


Sanctuary

My sanctuary
Our house holds all I love
Yet The door is open
For there’s always room
For more -one more, many more
Love knows no bounds
Love is my sanctuary.
My door is open
Although the world’s
Closed for now, anyway.

Every night
The owls ask who
Who are you
Who is home
Who is gone?
Every morning
The doves cry
Cooing in mourning
For those who have gone

The afternoons bring
Light casting long shadows
Through the crystals
In the heart of the home
The kitchen fills with
Tiny rainbows
Red, orange yellow, green, blue indigo, ultraviolet
Repeated and repeated
In attempts to draw for me
A time long ago
Or so it seems
That I could see the rain
Refracting the light
In the aftermath of
Storms. We’ve weathered
So many storms
Do you want to be
A new color?
Does the owl know
It’s brown and white?
Did the dove have any
Rejection of the black woodpecker
Making his way up the
Ponderosa pine
And wearing a headdress
Of a hunter?
Did she know he made her bed
Inside that tree?
If the mountain lion
Or the white tailed deer
Or my skunk, fat as he is wide
Only knew we were all so very afraid
Would they want to create
A sacred space
Or a sanctuary
Would the owl ask again
Who is it?
My doors remain wide open
Yet no one comes in
No one leaves
The spring led to fall
And we all missed the
Summer trips
We skipped the routine
And we all call in well
To work not sick for once
We are celebrating
Being well
Not a return from illness
Isn’t this the way life should be?
Cant I say it’s a beautiful day today
I’m calling in for my sanity
I’m not waiting until I lose it anymore
Can I fall on the ground
Out of breath
From dancing. My lab is
My living room my tools
The colors of the crystal
Refractions of the long
Fat rays of sun

Or so I could stand here and ask why? Why me? Why us? Why?

I prefer my owls quest to find out who I am.
I prefer the smells of the skunk
Who came to the open door
And waddles away with a bright red tomato.