Periocentesis No. 9

Instant Karma’s gonna get you /Gonna knock you off your feet / Better recognize your brothers/ Everyone you meet/ Why in the world are we here/ Surely not to live in pain and fear/ Why on earth are you there?
John Lennon – Instant Karma Lyrics | MetroLyrics

Where you going, Turkey?

I run out of the house about 5:00 pm while the dear husband sleeps at home with dreams of sugarplums or whatever the depressed dream of, dancing in his head. He’s “napping” in his office due to another night of wall patching, crown molding cutting, and painting. Home improvements for dressing up our overpriced  Silicon Valley townhouse, in a very good school district should you find yourself interested in an affordable yet pragmatic home with lots of great upgrades in move in condition. My realtor days never stood a chance and never began. But enough of my yakkin, let’s get on with this mockumentary.

I try to wake him gently, without frightening him, and to my  dissatisfaction, my 10 minute car ride seems an imposition on his sleep and he groans at the potentially long night ahead. Earnestly my response, “please stay here and sleep then. Happy turkey,” possesses him into a fit of angers and he chased me yelling some foul things at me which I’d rather forget and I slam the door to the house after putting two hastily packed bags in the front seat of my Mini, a car I despise but live with.  Disappointed and downcast instead of insisting he take me and feeling his ire rise like a red sun up his neck, I go back inside, kiss his forehead and tell him to just go back to sleep and I’ll call when I know more about the timetable ahead.

So, rather than the table set with a feast of the usual, but beloved conqueror’s meal, I land feet first in Good Samaritan hospital, feeling the swish and settle and the pain of the fluid like a broken snow globe in my belly. Alone on Thanksgiving Night. Neither my mother or father remain in the conscious dimension, and I miss them. So in memorial to my parents, before I go to the place where time stands still, I stop at the open Walgreens en route to the hospital and purchase a cat ear headband which I wear until the next day. Amused by the ears, nurses and occasionally doctors ask why I’m wearing them. Do they make you smile? My response takes them aback and they always respond with the affirmative.

Miss kitty goes to hospital.

In a morning from a Bogart movie/ in a country where they turn back time/ she goes strolling through the crowd/ like Peter Lorre contemplating a crime./ She comes out of the sun in a silk dress running like a watercolor in the rain./ Don’t bother asking for explanations/ she’ll just tell you that she came / in the year of the cat.

Year of the Cat,  Lyrics by Al Stuart, produced by Alan Parsons

Lyrics of genius provide hours of headlong stares through my haze into music coming through my iPad and into my head. Why at 4:00 am, no one can really know, does old music haunt dreams undone. My card catalog file or for you under 30 sect, my internal search engine, cannot let lyrics of any song go, and one, maybe three plays is all it takes and it’s written to memory, like seeing the Grand Canyon might burn into a normal person’s memory. Thus I’m as haunted as I descend into this next surreal event at Good Samaritan.

CAT Scan Fever

Failing to tell them my father would find the cat ears absolutely apropos of the moment and laugh until he teared up, which he did most of his life over things many would find a bit lackluster in humor. But I loved him for our ongoing pun-offs that lasted years. Whichever one of us could elicit the loudest groan from the other of “that was soooo bad” would be the clear champion. By the time he died we had tied, but I think neither of us got the last laugh. Yet my mother, not humorless but more conservative in her snorts of laughter, would simply have roll her eyes and puffed out her dismissal, “my daughter, such the comedian.” Use Bronx bred New York Jewish accent with this statement and thus describe her to a tee.

How different would anything really be if they were still alive? I see families in the ER that night. Sons and daughters. Fathers, mothers, grandmothers mostly, few if any grandfathers. Making up their life stories in my head I also become indignant for their lack of decency in coughing all over or not wearing a mask although it’s clear they’re waiting not for a doctor but for a patient. I see monks in orange with what seemed like burkas over their heads and humbled I thank them silently and grateful for their presence. They seemed to provide control in a swirl of germ laden chaos. I secretly wish to go home with them and do a two week silent retreat.

Stick people waiting for more sick people.

California Dreaming

Typically in the United States, where healthcare costs a fortune, an ER acts as a pseudo budget urgent care clinic for those with maladies such as broken bones and symptoms of infections of every  kind: influenzas; stomach viruses; and some with  pneumonia. Even I’m averse to wearing a face mask but in required spaces of malfeasance wear I must. Can’t stand the discomfort they cause, can’t breathe, and they make my ears hurt. I pull the mask down to punctuate the veritas of my situation to the check in guard. I lean in and quietly swishing my tight abdomen full of cancerous ascites, that I need to get inside to a single waiting area due to my MBC, but I can stay in queue for the doctors to see me. He looks bored with me and my woeful tale. He looks at me like I belong there on a 5150 instead.

Guy with a flu not wearing his mask.

I explain my immune response problems, and beg him please yield to the truth I run down to him. “If you have speaks with the nurses they would back my story up and you’ll not get in trouble.”  He ponderously breathes out through his chicken yellow face mask, pushes his girth up using his arms as levers against his makeshift official desk: a plastic card table waiting for replacement during the hospital’s second year of “pardon our dust.” He is going to test my story against hospital rules.

Shifts in Time

Smiling under my mask, I go sit down far from people as possible and within all of five minutes the nurses call my name. All the other waiters in the waiting room give me very ugly and uncomfortable looks as if to say, “I’ll kick your ass, white girl! Who do you think you are in your cat ears getting ahead of the line here?” Princess Kitty feebly attempts an explanation of the criical nature of her cancer, only to find curses hurled at her in Espanol and Mandarin Chinese.  I bow, I think, and then let the nurses working the Thanksgiving shift take my vitals and gently escort me to a room where I wait for five hours with a very sick companion about a yard  away from  me behind two curtains.

Hospital bed

 And so begins another hospital stay of several days. Not unpleasantly spent waiting for the doctors and specialists to return from a long holiday weekend to the hallowed, echoey corridors of shiny terrazzo stone polished gurney byways. It’s quiet for a change and the nurses seem less bitter as they wear holiday scrubs and small holiday trees begin growing in each wing and ward. Tipping over midnight the resident after a strange outsourcing experience in medical management takes over my case when it’s revealed I’m on social security disability.

Wow. An experience to behold after years of my life spent advising companies large and small on which parts to keep in house and which parts aren’t in the core competencies of the organization to outsource. Last I looted hospitals were in the business of medicine and billing for rendered services. Not a good sign, and this time the certainty of my conviction was more than just a very experienced hunch. So, hold onto your hats for part two of this post in which an unnamed company retains H1B visa doctors steer my wallet towards a billing company for high risk payees who may slow pay or underpay, or gulp, die and never pay patients.

By Saturday morning the removal of another 6.5 liters of fluid drain from me like a waterbed by one of three periocentesis experts, whom I’d met just a year prior right on the same date who came in to poke a hole in my right lower abdomen and guided by an ultrasound and his body of knowledge he said, I swear, “let’s drain you dry.” And drain I did to 15 lbs of relief.

Does a sound of relief slice through my body as I get the first good nights sleep in a week! Goodnight friends. My odyssey continued and still continues. I’ll remind myself on a short post of a timeline that I’m still living out until May 27th.

Taxol take me away to that place when NEAD indeed replaces tumor and chemo in my chart. And immunotherapy trials come to meet us on the high road to wellness.

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Sharing my experiences with metastatic breast cancer …

This passage by Emily Dickinson sums up beautifully why I strive to honestly share my cancer experience and caregiving of one husband with depression, as well as others who I love and come into my life to give and receive support. I hope you find something in her words that pertains to your life. Giving back rewards us with humanity and humility – making the world a little less lonely for giver and reciever. I thank you for sharing my life’s rollercoaster ride. Keep your seatbelts on!

If I can stop one heart from breaking,
I shall not live in vain.
If I can ease one life from aching,
Or cool one pain,
Or help one fainting robin unto its nest again,
I shall not live in vain.
– Emily Dickinson

Op-Ed: Regarding Cancer and Making Personal Connections

My dear friends,

I’ve received so many amazing letters from people who read my blog or found me through another online channel like my Etsy shop, YeuxDeux Vintage, or on Instagram or Twitter or Facebook. They read about my diagnosis and my current life and find common ground, and I’m honored to communicate with people who were touched enough by my life to personally reach out. I appreciate their candor and I am especially humbled by the emotional outpourings of some of the communications I receive. Unnecessarily, their email begins with an apology for a “stranger” so openly sharing their experiences with me. But are we really strangers?

It’s impossible for me to conceptualize the idea of a stranger. If you believe as I do that we are all made of the same “stuff” the universe is born from, then we are all part of a single infinite family. I’m very much Jungian in my spiritual beliefs. On the other hand, my father, who studied Freudian psychoanalysis and was an atheist, never appreciated much about my spiritualistic tendencies. Jung’s theory of synchronicity certainly supports my belief that we meet people when the right time and space collide, however our acquaintance comes to fruition be it virtual or face to face.

I’ve learned that the people I meet virtually share my own philosophies and align with my experiences far more frequently than a smaller circle of people in my immediate geography. Makes sense mathematically – there’s nearly 8 billion of us globally and only a few hundred thousand around me. I have also decided to lay bare my personal life on my blog. As a part of the confessional nature of my writing, my pain and my emotional turmoil make my the most private inner world available to those who were heretofore unknown. Some with cancer, breast or metastatic or other forms, some care givers to those with diseases of the mind and the body, some creative writers, and some lives carry emotional similarities to mine.

Anyone who decides to engage with me receives a very dear gift in my response. My words are wrapped with care and a certain kind of love that’s unheard of where I currently reside. Still, I find isolation in my life with cancer.

For instance, last week I could not stop thinking about my mortality. How could I find a way not to ruminate as my three year diagnosis anniversary in my rear view mirror and oncology appointments and chemo and other therapies in the windshield looking at the unknown duration of my life on the road ahead of me. I snapped at my husband for his glaring lack of celebrating life’s time markers with me. He instead ignores them as a way of ignoring what I’m coping with primarily alone. In fact there is no more time left to avoid celebrating cancerversaries, birthdays, and anniversaries. He’s very good at disguising his sadness with annoyance, using my disease, my side effects, and my cash flow as excuses. Such bullshit.

We are both aware of his avoidance. He has yet he to open his heart, to 0 —-0–ÿh0is true empathy, or allow my state of being to enter his consciousness… without relying on such lame excuses. I too wonder if the overwhelming amount of crap piled up between us is surmountable, and the task ahead staggers my mind. I wonder if we can ever find new footing on which we can look through the same windshield from the same vehicle to make this trip together. Yet he cannot completely get his mind to wrap around a tremendous daily uncertainty. It’s all too much for someone who thrives on order.

This may provide some insight as to why I’m happy to find the better part of my human condition and to find connectedness where and when it presents itself. I find peace with all that life’s delivered on my doorstep, whether or not I order it from the infinite universal catalogue of “Oh My God.” There’s so much complexity to a life, irrespective of whether one finds themselves with a cancer diagnosis. By the time we reach 50 the explosion of our entire life’s plan is the last thing we expect.

My plans got blown to bits but heart remains solid. So, keep those cards and letters coming my friends, keep them coming.

With love,
Ilene
Head Driver
The CancerBus

P.S. Sorry it’s been a while since my last post. My minds been occupied with heavy things and I’ve tried to pay better attention to my relationship to insure it’s survival. As my friends, I’m sure you understand.