The Metastatic Identity : I look different inside


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

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

5 comments on “The Metastatic Identity : I look different inside”

  1. Dear Ilene,
    Your writings are beautifully written. A heartfelt thank you,

    1. You flatter me but I fully intend to write until I call it a day- it keeps me relatively sane.
      Love you

  2. Beautifully written as always, Ilene. Like you, I also had a lifetime of “unlikely success against the odds” – and I believe that does help us get through life challenges in a different way from others who have not always been so lucky. I keep reminding myself that Life is terminal – and whilst this might not be the way I would choose to die, I’m not sure I prefer any of the alternatives either. Much love. Julia

    1. Julia you flatter me – you’re blog posts have impacted my thinking a great deal. It’s often difficult when terminal or chronic illness doesn’t comprise ones daily work routine to remember we all end at some arbitrary time stamp in the future. While feeling sorry for myself over the last week or so, I thought a lot about my loss of identity – and the therapy of writing got my mind to shift as always to a more positive way of viewing what I honestly thought about as wasted time in a career. All the work to climb every last rung on that still male predominant corporate ladder – especially in high tech (a sausage factory!) without missing a single one lost. But not really. To your point our strength is redirected to navigating the tangoes of paper, contracts for insurance, finances etc. it’s like being the CEO of MyCancer, Inc. (Or LLC for you across the pond). Do you miss the daily grind? Maybe I just was glamorizing whats no longer available?

      Death is death. Everyone’s life ends the same way and it’s the only thing no one has any assurances of what happens once we do die. At a visceral level it’s hard to accept although intellectually we bravely deny any fear. It’s uncertainty I think. I’m pretty sure based on your discussions on topic you have a similar notion.

      Four more taxol infusions to go!

      Much love and stay well!
      💜 Ilene

    2. I wrote this long thoughtful reply which got erased just like the poem I wrote sitting in my car in the parking lot of a bookshop in response to Marie’s “yes” writing prompt on the last weekly roundup so here’s my answer for you and for @lbbc Marie too

      Say Yes
      To Hope and to Help
      And more Healthy food
      To Exercise and Water
      Baths are really good
      To Cats no doubt oh positively!
      But I suppose, i guess, dogs are fine, though sniveling
      To Hugs, to expressing ourselves creatively
      And to Travel to places, some close some a far
      And ommmm… yes to your Breath and for seeing the stars
      Friends, new and old even those left behind
      It’s for Advocacy and even acting immature when you want to unwind
      It’s for soft socks, sunshine, and the perfect hat
      Yes for Family (including by blood and by choice) who love even our crap
      A big yes Carers and givers and my chemo port
      To oncologists and nurses and behind the screen support
      That’s including our blogs through which we’ve “met”
      But pardon the pun, is it coffee time yet?
      And lastly but not leastly, a big YES to Marie
      For compiling our posts nearly every weekly
      With wonderful, bravely honest and willing
      To openly share to the lonely, the scared
      And say yes we really do care about you and we dare
      Through our comments and emails that we always answer
      So fewer people feel must feel all alone with cancer.
      And I can think of a thousand more YES’s
      And probably equal a number of NO’s
      But yes isn’t just about false positives
      It’s about letting our light shine and glow.

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