Diagnosis Fallout: the week after first learning I had stage IV breast cancer

On the eve of Breast Cancer Month, which I shall only acknowledge with true stories of the struggles of stage IV cancer “metavivors” I will kick off with a letter to a team of oncologists at Valley Med in San Jose California nearly five years ago. I reached out to their group out of sheer desperation one week after I was diagnosed de novo. I wasn’t diagnosed prior to this because of my very dense breast tissue that’s indiscernible from tumors. Regular mammograms aren’t given until the age of 50 and most dense breast cancers are found between the ages of 40 and 50, and we have a much higher risk of breast cancer, too.

With that I present the letter that was answered by phone call with the offer of an appointment five months after I sent this letter via email, mail, and fax:

I write this hoping it does not fall upon deaf ears and plead with you for help and have nowhere to turn it seems otherwise…

I was admitted to Good Samaritan Hospital’s oncology floor last week after a late night in the emergency room and in the early morning of Tuesday the 25th at 1:00 am. At that time my primary physician and I concurred that the cause of my severe, and crushingly painful cramps after 18 hours of vomiting most likely was food poisoning. I was finally released this past Saturday the 28th of March late afternoon with a MedPort inserted in my chest, a diagnosis of stage IV terminal cancer that immediately requires treatment for a metastasized malignant tumor diagnosed by the oncology staff and based on a dozen or so tests.

Mind you I was seen by an oncologist, for just under five minutes after 6:00 pm Friday the 27th. The doctor stopped by and said he could not advise me, but did say I should take the “hormonal treatment path rather than the chemotherapy path,” but he could not be my oncologist. I’d already seen a surgeon and was “biopsied and operated on for a medical chemo treatment port.” He apologized and swiftly left my room.

The cancer is causing many problems and I’ve now reviewed all of my online records to find the state changed my coverage and without notifying me, however, I am allowed to receive care according to page 38 in the handbook for these types of situations without the consent or referral of a PCP. For approximately three days we were given the run around as I laid unfed, mainly ignored except by a few good RNs, and in pain. The administrative staff wanted me out and told me this was due to constant pressure by Valley Med to get “their patient” because I “represented their money.” This is no exaggeration.

I order to move things along I was provided surgery by Dr. Jeffrey Gutman (now retired) whose disregard for money overcame the hospitals’ greed, and set me on an expeditious path to treatment. Friday, after three days, CalMed informed me that my primary care organization through CalMed changed unbeknownst to me. Valley Med was my provider and Good Sam refused me any further treatment even though my partner explained he would be glad to cover any additional costs until the transfer to Valley. Good Samaritan declined his offer of cash, instead discharging me with a big bag of prescription medication on Saturday.

I required a referral from my Primary Care Physician. I no longer knew my doctors. This referral from my new PCP, the Indian Health Center, HAD to to come to Valley Med to receive any further care. Monday morning, March 30th, 2015, I telephoned and left messages with no response no fewer than five times. My friend drove me to the Indian Health Center at 2:00 pm where I was unknown and thus treated to a series of comical paperwork procedures. We were left sitting in a room with two armed body guards to oversee children with the flu, pregnant women, and several people in line for their prescriptions to various category II narcotics, and us. I was asked to fill in some forms after which we were taken to an unfurnished, nonmedical building next door to this very unsanitary facility. This place happened not to be a facilitator of healthcare but instead a gatekeeper of desperate patients in need.

I have tried everything and of course this stress is taking a toll on my declining health. I can only plead with you: Please do not turn your backs. My father passed away from brain cancer nearly three years ago and the travel to help him and take care of his final wishes as his medical custodian forced my unemployment and the immanent decision of using CalMed as a back up in case of emergency. That seemed a wise choice and having no communication from California or Santa Clara County (I’ve lived in the same address/ residence for six years and have my September 2014 insurance card) I’m beginning to wonder what false hope I stood upon to receive such an awful prognosis – both of my health and of the potential of proper treatment.

Please help me. I am swimming in red tape, prescriptions and simply cannot reach anyone to begin treatments which I desperately require.

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.

Portal to Breast Cancer Resources Including Financial Assistance

http://advocates4breastcancer.org

This awesome web portal got on my radar in a private “closed” Facebook group for caregivers of and people with metastatic breast cancer. You’ll find everything from links to groups with emotional support resources to the tangible sorts like copay assistance. It’s a bit design challenged, but don’t let the “crayon” drawings fool you – this is a real life, dyed in the wool portal for almost anything you might need for breast cancer and real help is available. I found sites and resources I’d never heard of, after scouring the web for over three years.

No I’m not a fan of Facebook as many of you know but I am a huge fan of peer online groups and sharing of intelligence. They’re open 24/7 and global in reach – not closed when you’ve got insomnia and want to feel like doing something to help yourself through the muck and mire of your breast cancer diagnosis.

At Advocate 4 Breast Cancer, we advocate to improve the quality of life for all breast cancer patients. And see an end to breast cancer. Raise funds for research, education, patient’s rights, and ending breast cancer.
— Read on advocates4breastcancer.org/

Buddy, can you spare word or two?

Expressing the greedy silence
A picture’s worth of words
Swallowed whole by memory’s avarice.

Wishing wells charge five cents for
Lies it disguises as your dreams and
Sells for a penny a dozen accidents.

Ascending into the ravenous night,
Darkness craves sleepers who whisper
Hungry with the first sun’s frowning light.

Handmade gifts thoughtfully cost a
Harem’s ego, yet steal away all hopes
From the receiver quietly plagiarizing quotes.

Gracefully I lept over four word puddles,
a tutu laden pink dancer without her
penguin waiving a stick in front of
without an eighty piece band.
Lexicographers cry and streak the pavement
raining possessive determiners
As I try to rescue those nouns and that verb
from washing away down gray grates
toothy gateways open like mouths
to the sewers below.
Perhaps I’m late to save portmanteaus
from my brain smog.
Forgetting prepositions and
their phrases, going where to there
I haven’t a sense of direction
nor know which path to take.
So I explain and you listen all patience
And smugly knowing the definition of milk
And salt. Even a small three letter word
the subject of my sentence: frozen
water hanging in a dark cave
like stalagmites or stalactites,
So important hanging or protruding
the way they do because their
directions are very dangerous to
the blind observer.
So don’t lose your directives or
your objects, either,
and make sure not to lose, for heavens sake,
any pronouns, or else they, you know them,
or even we and us, but certainly not him or her,
Could spend all day waiting
just for you to finally
remember.