The Metastatic Identity : I look different inside

Cancer doesn’t look
like me outside but inside
I look like cancer.
#haiku

The above photo collage represents me at turning points in my life over my near 54 years. Anyone diagnosed with any kind of cancer, chronic or terminal illness changes at the core of their essence. Such a granular and fundamental shift in identity transpires from the inside out. Shift happens to our personalities and our bodies, just as a side effect from chemotherapy might effect our appearance or our ability to keep food down.

Cancer’s impact on our lives either positive or negative, hurricane force or light breeze in strength, prove exceedingly difficult to understand by people without the dreaded disease. Life continues on like “dogs go on with their doggy life and the torturer’s horse/ Scratches its innocent behind on a tree.” (Auden, W. H., Musee des Beaux Arts.) In my experience, through my metastatic breast cancer diagnosis four years and two months ago, I’ve been transformed by some of the following: isolation, fatigue, loss of family and friends, embarrassment, financial concerns/ being broke, dependency, and physical brokenness. I’m focused on treatments, paying for everything, appointments, finding like minds, my wellness, and essentially searching for meaning in my life.

Many of us aren’t able to work or progress in a career as we did prior to a cancer diagnosis. Most metastatic cancer patients can never return to the workforce again, as early retirement and Medicare and social security caps on income knock us down to a life of financial struggle. We are out of the running.

Having terminal cancer equates to stress over money matters. We cannot work as we might like nor can we be nearly as active as we once were although we appear on the outside to look as though we could be working 40-80 hours a week. I can’t imagine being on time for an 8 am early meeting when it’s difficult to even get to an 8 am medical appointment.

Believe me the best I can do on bad days is to cancel an appointment and return a few hours I’d rather spend with them than in bed to a friend out of respect for their time. It may not work for some people. A good friend lectured me a few weeks back for my late arrival to her house; she took it as a personal affront. It’s not my intent to set a date and break it out of lack of courtesy. Contrary I thought the effort it took at times to even get out of the house some days would make for a closer relationship because there’s not very many close friendships in my life anymore.

Even what’s become of our time as we embark upon a life as a patient doesn’t even make sense to a well person. There’s a canyon between us and the life we once led, as we stand on one side of the divide unable to traverse the depth of the change within us. In fact the change illness brings upon our time can come to define our lives, as indeed at times it must.

And indeed there’s no way to turn back even on a different path. I looked around to find my old life obliterated. The hope to find my old self safely tucked into a hiding place for me to retrieve it should the time come if a prognosis of no evidence of disease, or NED, will never arrive. My former identity and the robust capabilities of my pre-cancer body, mind, and spirit no longer exists. I look around behind me to find only a blank darkness where I once existed. No longer identified by my career, my resume is meaningless. My contact base, years in the making, no longer contacts me.

A Series of Transformational Moments

We build our personalities on transformational events and by the people who bring us along through it, or travel along beside us. Indeed anyone’s life, long or short, cannot float through the world without attachments altogether. Our identities are linked to other people. Our experience and events either kicked into motion by us or in spite of us have shifted from managing our time into managing our health.

In fact certain seminal points designate key influences on how we once defined ourselves. Perhaps a few illustrative experiential or transformative events of my own can provide you with insight on what this really means.

My paternal grandmother, who adored me and with whom I spent every waking moment in the last four years of her life, died in 1969 at 62 of metastatic breast cancer. Not my brand of genes, at least not according to the first genetic study done upon diagnosis, nor the study by Stanford’s heroic genetic geniuses. (I really do respect and adore the women running this very small, sadly underfunded department.)

The first photo in the collage above shows my mother at 32, my brother at four, and there’s seven year old me on the Schwinn purple low rider banana seated racer in my favorite white parka. I appear as a girl who was very tall, lean, healthy and with slight sadness behind her eyes. Looking at myself then and seeing myself now, I hid my sadness under a veil of strength.

You’d not see in this photo taken November, 1972, the events that caused such melancholy. It was taken just after my dad left with twin suitcases while my wailing mother lay on the floor attaching herself to his ankles while begging him not to go. She cried to him not to leave her alone with me and my brother. This took place before we moved to Florida, when we still lived in New York City. To me New York remains indelibly in my memories as the land of museums and musicals, pizza and plays, great water and sticky, snowy winters, the best zoos and the best park including Central Park, Coney Island and Long Island where my mother’s sister still lives.

Moreover, there were great educational institutions for a precocious chatty kid. In September of 1972 coming back from 1st grade summer break and my parents break up, and the last summer in our bungalow in the Catskills. Instead of the truth, which I likely couldn’t bring myself to interpret at the time, I told the class I’d been to Ireland, where I’d taken dance lessons and learned to do the Irish jig. Not recognizing the Irish accent of my 2nd grade teacher would mean she’d call bullshit on that, she asked for a demonstration with her accompanying me on piano the next morning.

Returning to our 14th floor high rise apartment, begging my “why’d-to-death” mother to take me to the library to check out materials I needed to finish my report on Ireland. She probably had a hunch I was up to something. The next morning I jigged all three city blocks to school. In true-to-me fashion, I pulled it off.

Like so many stories in a lifetime of unlikely success against the odds, success was and is the only option I can accept. Cancer remains a mysterious exception to the successes I enjoyed pre-diagnosis.

There are several iterations of the former me in whose body I can no longer recognize. Clearly, my good health, my lack of disease and strong immune system now shine from the past. I show like a racehorse at auction. Look back at the photo collage of my life at seven, 33, 41, 43, and 53.

Those images swirl slowly around me like water down a clogged drain. Trying to stop metastatic cancer from overcoming my physical self may be a bit less tricky than stopping it from overcoming my conscious sense of self. The ethereal stuff that makes “me”…well, me. After four plus with a diagnosis of metastatic disease I now understand without a doubt the impact of cancer on a life.

No one seems to know how long the three tumors grew, then burst like a dandilion spreading seeds throughout ny brittle bones. Recalling the year of a poor bone density test result at 46 and the following year my GP missed the opportunity to send me to have an ultrasound. Although my dense breasts make radiologists cringe, my manmogram radiology report that year stated, “inconclusive,” no further action or tests required. Come back when you’re 50. Too late.

Such a kaleidoscope of images. Good memories and some very bad days. I may have been able to avoid a few of the worst events in retrospect, but instead transition into my post diagnosis identity. They dull my pain like opioid based medication amid other side effect dulling drugs in my big purple bag. (For a photojournalistic view into some truly grueling drudgery read my post on going through opioid withdrawals due to a doctors office and pharmacy screw up – opioids and pain medication

Who am I now?

All this aside we identify ourselves by any number of memes and meta data. Identity is based on our family positions such as grandmother, mother, or stepmother (heaven forbid). Today arguably, women also identify themselves by roles still viewed culturally as men’s realms such as our careers, our chosen college level degrees, and by philosophical ideas and rights. Women in the United States weren’t able to vote in elections until the passage of the 19th amendment to the Constitution 100 years ago in 1919. Equal pay still mysteriously evades our purses, and we may lose the right to control our own reproductive destiny if the Supreme Court overturns Roe v. Wade this year.

For women too, the primary gating factor to our high incidence of breast cancer incidence is simple as just being born a girl, which feels ridiculous to say aloud. Yet…as recently as 50 years ago, the overall statistical chance of a breast cancer diagnosis was 1:40. In 2019 – 1:8 – and genes impact breast cancer in a mere 5% to 10% of the cases.

Indeed our experiences forge our identities along with cultural, familial, and other factors. Experience begets identity in a sense. We’re also a product of our memories. Real or imagined we create our pasts, writing our stories through synapses of electromagnetic energy. Our lives are etched and stored in our beautiful brains. The future plans, made with the aid of our prefrontal cortexes, the part of our brain that differentiates us from the rest of the animal kingdom, either work out or just fall flat. We pick ourselves up when we fall over our missteps or we succeed in spite of our health. Yet all of this can come to a complete standstill with a the stroke of a pen: a physician’s signature on a diagnosis of a terminal illness. Our futures now must include some sort of plans for an eventual and likely painful demise.

A bomb falls out of the sky. King Ferdinand is dead. Pearl Harbor lays bombed.

My life, the one I built and the woman who I once knew well is now scattered everywhere and gone forever. Sniffing around in the rubble for pieces of evidence to pin onto a cork board instead of my “self,” a crime scene is pieced together. Can you see the viewership of the next CSI: Dense Breasts? Or the sequel CSI: Metastatic Cancer?

Where did you come from, where are you going?
Since I’m not ever going back to my old life, as if it were even possible, I find myself unable to identify with any collective of people off line or any particular system of belief. But I never did. And I cannot say I’ve found a group of peers to meet in person with to let it all out. I cannot say that’s something I found satisfying prior to cancer either. No cancer center gets it quite right for me as I need it, but as you might have guessed, no club felt like a great fit before cancer, either. I worked very hard and enjoyed my unexpected success in college, winding up with a bachelors degree in English and philosophy.

Oddly, I somehow parlayed my degree via public relations and did a 180 degree turn from liberal arts to a 27-year career as a business strategist and c-level executive inside the still largely male-dominated technology industry beginning in 1994. Not surprisingly, my past experiences influence and support my approach to cancer. Fake it until I make it. Negotiations, contracts, promotions, marketing, mentoring, leadership and all the other skills necessary for success happen to serve me well in my life with MBC.

Perhaps I’m not that far removed from my identity after all. If we are the collection of our experiences then how can we approach our diseases any differently than we would any other life altering struggle? I’m unable to work; forced into early retirement by stupid cancer.

I’m learning humility was always a part of myself. Writing and creative work always got me through the toughest times. Learning to run while I could still only walk was always my modus operandi. Feeling around in the dark for a light switch I look in the mirror and my eyes are still mine. I still couldn’t care less if anyone believes I have cancer or not. Inside, hidden from prying eyes, my pain burns the most. It’s what no one else can see but me.

And no one can ever know what blisters form by walking in anyone else’s shoes. I’ve still got some very big shoes to fill in this life… those shoes are my very own.

I hope one of my favorite poems, quoted above, sums it up nicely and you’ll understand how I’d come to my new understanding of parlaying my experiences and strong points into my life with metastatic breast cancer. It’s possible- for all of us – to bring our lives full circle even if we once flew high enough to reach the sun – wax wings melted tumbling into the sea, we needn’t drown. Just swim to shore, dry off, and join the daily life as we are. We can still fly, but with real wings and using the wind beneath us to provide loft and let us soar again with confidence.

Musee Des Beaux Arts
About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer’s horse
Scratches its innocent behind on a tree.

In Breughel’s Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

W.H. Auden

Writing Prompts: Some great tools for those not so fresh days

Help me.

Writer’s block sets in slowly and as unpredictably as does productive bursts of semi-genius. Rare is the latter, the former happens at least once a month. Blame the cancer writer’s block occurs far more often than it used to back in my “normal life.” But cancer became my go to writing prompt for the simple fact that it became my life. It’s neither fortunate nor ever what I’d choose to write about but it’s clearly important. Still, I run out of ideas or my chemo brain or brain fog if you prefer robs me of ideas. I am compelled to jot everything down now. My running list of writing prompts helps me get out of the wet cement and so I can run with my output.

While writing typically comes quite naturally, poems can take years to get right and essays can become stale before I’m finishing the final paragraph. I always go back to my old expired or uninspired writing to take another whack at it or to just not begin with a blank stare at a blank page. I keep it in my journals scattered all over the house, and car, and in purses, in between books I’m reading. You get the point…but I don’t toss away or delete anything unless it’s pure drivel. The white page glaring at me keeps my mind dormant at times.

So if you take a single piece of my advice, for what it’s worth, it’s don’t start with a blank page. And reused writing is only one way to get the job done.

Using writing prompts does as well. Keeping up a self created running list isn’t necessary. You can feel free to use some of mine listed below or check out the web by searching up “writing prompts.” Specific or general you’ll find something to write about or to get the old noggin in gear. So dig deep or tread in the shallow end of the pool, but write. Your blog needn’t be the final goal, nor your work on some overdue white paper for work. Using prompts might just surprise you, though.

My prompts ran away with my homework

In the mirror this morning…

If I had wings…

The universe…

The concept of time…

Kindness…

Laughing…

My expectations of…

When I think about (place) I think about…

If tomorrow…

Changing my mind about…

Even a stopped clock is right twice a day…

I want to grab a flight tonight to …

If I could predict the outcome of…

When it rains…

At night I love to…

The first thing I do every day…

I want to change my…

I woke up…

Sunshine…

Full moons…

Mythology character…

Music gives me…

A letter to…

If I knew at 20 what I know now…

Death…

Birth…

If tomorrow never came…

I am so afraid of…

Spiders…

The last thing I ever expected was…

My skin feels…

I wish ____was here because…

Suddenly…

My patience…

The best possible way to…

Under a microscope…

In a telescope…

I grew up…

I feel like a little kid when…

The best age to be is…

If I were born in the year (past)…

If I were born in the future…

When I cannot fall asleep…

I think about____all the time…

Ice cream…

I want to live to see…

It’s no use, I…

Finally…

Walking along the ocean…

Driving in the mountains…

Rollercoasters…

Beginning…

Endings…

Nighttime…

Mornings…

Secretly I love…

I’ve always loved…

I never did like…

Flowers…

Technology…

My favorite musical genre is…

The best day looks like…

My best day to date…

My partner…

Being (religion)…

Museums…

This song brings me back to…

The scent of/ odor of reminds me of…

I finally learned how to…

Cats are better than dogs…

A group of ravens is called a murder…

My top 3 online prompt resources

In my experience, these websites provide fertilizer for sprouting ideas of your own, with straightforward, self explanatory, yet engaging writing prompts. Although these sites focus on poetry, you could eagerly apply most of them to prose, non-fiction, even science or psychology.

I love these lists I reckon for several reasons. First, they get straight to the prompting. No book selling after a tease of a dozen prompts, no sign up forms for more spam email. Just the content without shameful self promotion. Next, no one site takes the same approach to growing your ideas. Furthermore, the sites are professionally written and edited. They’re not cutesy or too self reflective, such as say a goth self published novel writer and their five best steampunk writing prompts. Finally, and my all time biggest web click regret: as the frustration of writer’s block bubbles to the surface while you browse your search engine’s top results, some sites muddy the content with perpetual advertisements bombarding your overloaded or underused senses.

My short list of the three best sites ALL alleviate frustration and grant you FREE access to the articles. Novel idea! Also the links below open up directly at the best articles with writing prompts but do check out each site.

Writer’s Relief

Think Written

Think Written

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.

Look into My Crystal Ball, or The Writer as Telepath

The blank page: at times a writer’s inanimate nemesis. The written output, the writer’s words lend themselves to an infinite life with inasmuch potential. This simple premise suggests a complex hypothesis: a writer’s output can bridge the gap between art and science, alchemy and physics, space and time. The writer becomes a telepath sending messages into the future for a reader to interpret. Somewhat like a clairvoyant or perhaps the act exists in the realm of remote seeing, where one person would send a thought or image across time and space or pick up images from maps or clues designed to lead the seer to a specific area for finding, for instance, another country’s nuclear weapon silo.

Interesting to consider these assumptions imbue alternative meanings to the act of reading. You immediately see the past and derive a picture of the past, or the future in science fiction or fiction generally by interpreting words laid out as clues by the writer.

Extending the conceit of my satirical discourse, astrophysicists might look for wormholes between the covers of a book rather than through the lens of mathematics. A writer collapses the past and future at the every moment in the continuum of time when another person reads their words. Without control over who reads and when they read, the writer interprets and translates physical or imagined information to convey meaning. Recall for a moment any biography you’ve read of a living or once living person. Is it factual or to a degree is it fictionalized through the writer’s mind to the page, still applicable in autobiographies?

Might I suggest that both reader and writer together create a closed circuit to bend the time space continuum. Reading uses clairvoyance and writing, telepathy, to communicate. Both acts indelibly change the past and the future. As the reader becomes a telepath who interprets the messages being sent from another time and place and create meaning that may have an impact on themselves or in some instances one or an infinite many others. I write messages for future others to receive. How far in the future will determine the degree to which my words are interpreted based on several key factors.

First, cultural distance between me and the reader or receiver. I’d bet if you’re reading this now, you’re not too far in time away from me and your physical space is not too different from mine. If you’re a Martian colonist reading this 100 years from relative “now”, I’m no longer alive and my meaning must be left to the receiver to recreate any meaning from my words.

That person can change the past by interpreting my meaning, my words, and something about me that may or may not be true. So I can change history (now) and change the future (tomorrow) by writing something evocative and capturing enough mindshare to get you to think about something.

Just a thought that provoked some lively conversation this Sunday night. Time to give my iPad a rest, wish my husband love and pleasant dreams, give my cat Simon a good petting, and ready myself for another week. A week when I hope to fend off the busyness that would have my attention rather than using my powers of mental telepathy and sending my remote viewers something to chew on from here in the past.