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.

Thanksgiving at the House of Horrors Starring Canferatu and his brother Cancula

Ah, we meet again. You ugly, humorless, blood draining, fanged daemon from hell. You were born from a mother whose name started with Cancer. You picked up the baton and since the beginning of man-time you beat people to death, and remain uncured of the evil you’ve successfully spread.  Not one holiday goes by unscathed by the wrath of your conviction to kill me.  You silently chase me screaming into the grocery store where I talk to the granola, the vegetables, and the bacon I no longer eat. I chat with the asparagus and the bag of lemons who all look so bright and pretty.  “Don’t you lemons look lovely in your little yellow costumes today? Hmm?” You like to see me acting like I’m one carrot short of a full bunch, don’t you? You sit on my stomach during CT and PET scans at the cancer center.  You sit on my shoulders and demand piggy back rides while I try to meditate waiting for some appointment our another at the doctor’s office.

Ands whenever you can you get into my car well before I can do anything about you and take over the wheel and drive me to the hospital.

You catch me sleeping at night and wake me up and laugh in my face with your insidious breath on my neck as you raise those filthy talons to grab my chest and squeeze the light out of me. Which is highly unfair because I can’t see you at night but you certainly do see me.  You shake me wake me and bake me so every day is just a little bit more exhausting than the last.

Canferatu otherwise known as Cancer the Impaler, aka Cancula (shit, that’s what I should have named you in the first place but I am not your mother so maybe since you’re an imaginary enemy I can re-name you or create a brother for you named Cancula. It’s easier to spell and less pretentious than Canferatu.) I have some advice for you.  First you really might consider a small investment in a pair of toe nail clippers.  You could cut the dirt, long, and greasy nails.  At least attempt to make yourself attractive, FFS.  Since your graded on the number of tits you grab you’d probably score a lot more if you snuck up on us and were more attractive. Polish your nails pink so they seem more friendly going into my body as I writhe in pain. On second thought the color pink does nothing to ease any of my pain – except the opioids I take are time release and coated in a pretty pink gel layer.  I bet you had something to do with that marketing genius, too. You really should see a lawyer and get yourself a big chunk of change that’s owed to you, – those huge gains and profits squeezed fresh from the hearts you tear out.  Then you could afford a manicure.

I mean seriously, women do have standards and your hygiene could definitely use some improvements. Oh, and a dentist, because that breath of yours could wake a sleeping giraffe. Why a giraffe? Well my chemo brain and probably the medication I’m on won’t allow my recall to get to that card in the catalog file where I keep cliche’s for sleeping, and since I don’t know how giraffes actually sleep and it’s kind of funny when you consider curling those long necks and legs around themselves.  It must be really hard to get up, too, and it’s hard for me to get up these days.  I used giraffes as a metaphor because I don’t know how you sleep all day in that coffin in which you might try spending the night alone. Always, Forever. Never come back out. No really. Keep to yourself. I hate you and everyone hates you.

The worst thing about you this year is the number of times you seemed to explode my intestinal tract, fill me up like a water balloon, send me for procedures and tests and at last steal my short trip to Reno to be with people I truly love for Thanksgiving holiday  with Craig. A spa day Friday while he went skiing and we planned to stop and give money and time if possible to the Camp Fire victims.  We are instead giving the money we would have spent on the hotel to help them have a thanksgiving dinner since I’ll more than likely spend mine in the hospital.

My hips hurt and may back s sore and I cannot go potty. I cannot think straight and Craig is still in bed at 5:00 pm. I am angry and hungry yet I cannot vent since I am only enjoying this silence for a short while before I can quietly sneak out of the house and get my errands run before I am run into the ground. Your stench causes nausea so eating is out of the question. Not much stays down because there’s no room for my stomach to expand since the ascites that was supposed to be gone is not gone.  Somehow it made it’s way down to my left foot.  I know you and your stupid brother, C,ancula, find this just hysterically funny, but it’s not even close to anything like humor.

You forced me to spend the day feeling like a failure, yet again, by disappointing people I love, yet again.  My mind tends to wander from where it’s supposed to be at the moment and I wonder if my tribe in Reno think I just didn’t want to go. Lacking much energy and feeling like a big pile of shit because I cannot join the club of pink-drenched heroines who can beat you into submission because I either deserve you in my body for something I did in some past life, or more fittingly for a life like mine, for reasons beyond my, or anyone else’s, understanding. Fuck, I’ve not been to the hospital before you attacked me since I had a tonsillectomy at four years old. I do not even have a cavity. Not one.  But there you are.

And so I’ll spend another holiday bereft of my family, my friends, and any of the accoutrements associated with said holiday. I probably will get creative and more than likely be apologizing randomly to everyone I come into contact with all weekend.  Craig said he’d take me to a movie but I made him promise so he probably become magically busy or too tired to bring himself to take me to see Bohemian Rhapsody. A movie which you’ll be part of too, since Freddie Mercury died of AIDS related illnesses one of which is a cancer, Kaposi’s Sarcoma. So if we go, I’ll be thinking about the two smelly brothers two or three rows behind us in the swanky new recliner seating theaters that are popping up all over the country.  We are a big bunch of whiny lazy potatoes if the cinema/ theater industry not only depends on our popcorn money but on literally competing with our actual living rooms. We’re all due for a bite on the neck from one of you two.  You’ll have no problem catching any of our fat asses if that’s what the future holds in store for us.

A future I will not see – one without my physical presence in it. Granted, It’s not death that scares me but the painful existence prior to that death that’s scarier every day. Canceling my trip was the worst thing you forced me to do this year. I am so pissed off I could just…whatever. I’m tired of cancer and I’m tired of hospitals, insurance companies, pharmacies, oncologists, palliative oncologists, shots, this stupid port in my chest, the aches and pains and lack of sleep and the feeling like this may be my very last thanksgiving and no one gives a flying fuck anymore because I cannot keep plans to save my life, literally. Since I am always. late to my doctor’s appointments as well.

Gobble gobble.

I even had a quote ready to read for a quiet moment before feasting:

i thank you god for this most amazing day: for the leaping greenly spirits of trees and a blue dream of a sky; and for everything which is natural which is infinite which is yes

e.e. cummings

Ascites: I am a cancer blister

Ascites fluid

Four liters of ascites removed from my abdomen – ascites fluid builds up in my peritoneal cavity 2-4 times a year

Stanford Cancer Center

Setting up for the periocentesis: some local anesthetic, an incision in my lower right abdomen after the ultrasound.

Periocentesis

Getting the tube placed for maximum drainage it’s inserted in the safest place to avoid punctuation of my intestines.

Periocentesis

Getting the first draw for the lab, then gravity does the work into what looks like little beer kegs.

I first experienced ascites when I was diagnosed with metastatic breast cancer, de novo because of dense breasts.

It’s been:
3 years
7 months
22 days
5 hours
55 minutes
32 seconds
to be precise since first having 7.5 liters of ascites removed and the reason I showed up at the hospital about 15 pounds heavier than my usual weight, barely able to breathe, unable to hold down any food and scared as hell.

Prior to that first visit I’d been delivered to the hospital once, when I was born. Quite a different story 49 years later. Since the first periocentesis to remove the cancerous fluid, I’ve blown up like an oompah loompah seven additional times, including this last time illustrated by my clandestine photography here.

This is what metastatic breast cancer looks like. Not on the days when I am trying to make everyone believe I’m okay. It’s not that I mind looking like I don’t have cancer for the most part. But I don’t put my makeup on every day to prove a thing to anyone but myself. I push too hard most days. Never will I learn to take it easy.

Sleep is for the dead. It’s 5 am. I’m still awake.