Blogging for My Life

Fast. Faster. Gone in a moment. Sometimes before we realize how much faster cancer cells move than our bodies can fend off. We look in the mirror and watch our faces change. We feel our skin and it feels as though it’s not our own. Our breasts change in size, shape, and functional capabilities. Instead of life giving joyous appendages they’ve become hired guns out to kill the very support system for which they once worked. Some of us never had the joy of motherhood bestowed upon us by nature’s design. And that’s okay because we still, as women, must become the bringers of life to those we love. Our purposes shift but not without our reason d’etres in tow.

Eventually we all know our consciousness ends and the world we lived in becomes one in which our deaths are survived by those who once cohabitated and collaborated in it beside us. I refer to all of those who share in our experience either in person or now, those who live virtually close to us and some of whom equal in importance for our lives to ease down slowly when the dying of the body disallows physical contact for varying degrees of importance in reason. We show love and support regardless of the miles of distance between our physical selves. How fortunate to be alive in the networked age of innocence? Insouciance isn’t an option here because in matters of life and death the difference is so great that indifference would become a criminal act against humanity. And I’m not being tongue in cheek. It’s truly that important to the isolated percentage of us with cancers that have gone rogue in our bodies. The 30% of the 40% who have had cancer in the past. Then those like me who “present” right at the stage of the spread from an originating tumor. It’s not our fault. It’s not karmic retribution. It’s 90% environmental and 10% genetic and we never saw the bus coming before it hit us.

We share our inner most selves here. The kind of personal stories once so tightly held to the vest we wouldn’t share them with our best friends sometimes. And yet here we splay ourselves out with words rather than looks or hugs or facial expressions of joy or pain. Yet we have the protection of how much we allow out into the privately public eye, and feel more secure as people become friends who we absolutely love and appreciate as we would a friend who lives within driving distance.

Given this caveat: ours is a false senses of security since that security really is just a matter of how much or how little we are willing to share of our own story. Albeit our stories are without the input of those of whom we may speak, of those who saved us, made us happy, and loved us. In addition we may choose to relate our devastation over those who hurt us, make us feel shitty, or something as bad as making us so upset we would rather lose consciousness than get metaphorically beaten down towards the bottom of of some common unknown. In the instant we publish ourselves in a blog post we open ourselves up to scrutiny fearlessly hoping for understanding and love in response to our cries and laughter to our humorous rants.

In our most intimate and interesting posts we open up like bodies under the sharp knives of a small town morgue’s medical examiner. We let the light shine right near our dearest most personal stories under the eyes of people who need to know we are out here for reasons of solidarity around the topics of cancer, dying, and death. That last post on my blog may be by the very person who I talk about who could not handle watching my life slip away and who treated me like shit because out of love they couldn’t find a way home again from the hospital to be by our sides through the most difficult things we’ve ever been through.

The death of me isn’t the true death of my story anymore left to those who outlived me to tell anymore. Better yet, even after I’ve lost physical consciousness my stories can help those who get even better medicines than were available to me to learn what it meant to have metastatic cancer prior to the breakthrough that saved them but missed me and others like me by a few years, months or worse, days. Here’s what it used to look like to walk in these shoes when our diagnosis of stage IV is a death sentence. A perpetual march to the surge of tests and chemicals until no more can extend our life anymore and we must enter the limbo state if not knowing quite how long our bodies can contain the faster growing cancer cells.

The living go on as we go to sleep and one day our consciousness doesn’t return from rest. It’s in the spaces between existing and not existing where we live all the time. It never leaves – “it” meaning the knowing our mortality before we reach the finish line. Every day actions and activities once just ordinary become extraordinary. Our bodies are not ourselves but become the very enemies we dread in a dark alley alone at night facing down an armed assassin. Though it’s certainly been a frightening place to live for so long now, I’ll take it over not seeing another black calla lily or great redwood tree. I’d take that alley fight over never feeling a real hug again or the warmth of a body – friend or lover – as you sit comfortably next to one another critiquing a film’s bad editing or gasping at the sounds of a commonly loved piece of music.

I cannot believe all of us are here now – reading each other and loving each other and opening and closing like the rains hands in the ee cumming’s poem. No one not even the rain has such small hands. No wonder it resonates with so many people in love. There’s a universally understood unknown that makes no sense yet makes all the sense in the world.

And by god I know if you’re reading this you know exactly what I mean.

All my love,

Ilene

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 borne 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 and my cash flow as excuses. Such bullshit.

We are both aware of his avoidance. He has yet he to open his heart, to enable his 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.

Canferatu: The Prequel

In which our heroine finds herself clutched in the monster’s filthy, razor sharp claws, afraid for her life.

Introduction: The scripting process begins and ends

This narrative slowly opens and possibly took several years for the writer to realize the finished script. Editing the story of a life continues beyond publication, past the timeline of those who inspired the characters themselves. Those millions of words, her own and the voices of many others, became nothing more than ash made by trash bin fire. The wire mesh bin sat next to a solid oak beast of a work surface, the top ringed by years of too-hot coffee cups, and covered in a tablecloth of loose papers. A cracked black leather swivel chair sat empty and pushed back and turned away from the monstrous kneehole desk. On top of all the remnants of the writer squats an old black Corona typewriter, its clacks and clangs silent, it and the room gathering dust with every day since it’s author began her lifetime leave of absence.

Three years ago she abandoned a life of of golden accolades and long, meandering plans for future gambols. Three years ago, she traded the promise of generally uplifting experiences for the protracted life of a victim, incarcerated in her own body for crimes no one could pin down to a single suspect. Lately she looked weighted down by absurdly heavy fatigue. Additionally, without any real past precedent, she began to catch many uncommon colds and any new flu of the present season. Never before had her immunity left her body so unsecured and without patrol. It seemed illness had cracked her genetic health code. Our author’s body felt like someone else’s, although outwardly it looked exactly like hers, other than bluish circles around her eyes. As her story unfolded, she assumed these symptoms had to be a sign of work burnout and too much step-parenting stress.

Cortisol, a result of stress, certainly played a key role, aiding and abetting the ghoul who committed the ultimate crime against her, in an inside job right under her skin. Regretfully, she paid minimal attention to the diseased monster on a million-year long crime spree, taking women and even some men to an early grave, but not after draining them of their life force and absorbing it into his own body, which made him stronger with each new victim. And the shape-shifting monster metamorphosed to outsmart even the savviest of detectives who aimed to catch this predator once and for all. With each new case, the authorities found some new twist or turn to throw them off of his scent. He reeked of death.

A malcontented criminal, he tortured her unmercifully then leaving her alone, broke, and without empathy from anyone. This vampiric disease sucks the life out of its victims, some slowly, and some very quickly, but all losing their lives to the waking nightmare itself. In her case, she wrote the screenplay, acted the starring role, and eventually scrapped her success for a slow decline towards failure at the fangs of Canferatu, or the Vampire.

Part II. Oh, no! (Everything changed overnight )

One March night, I curled into the fetal position in the middle of our bed, sweating and wailing. I suffered from extremely severe abdominal cramps from what we thought was a case of bad food poisoning. My husband, Craig, finally demanded I get into the car and go to the hospital. He physically put my body over his shoulder and got me into the cloud like front seat of his Jaguar and pulled the seat belt around me. This, only after his heart sank as he watched helpless. Inconsolable and with huge tears bursting from my eyes, I screamed at him, “there is no way I’m going to the hospital! I’ve never been to the hospital! I’ve only been once in my life, when I was born and I’m not going!”

On the other side of the looking glass, this Alice awoke the very next day in a bizarre alternative universe. “You have metastatic stage IV breast cancer and ascites fluid build up in your abdomen.” Everyone around me looked stunned. Everyone who called to check up on me went silent, leaving me holding my cell phone and repeating, “hello?” checking to see if their calls had dropped.

“Not her! She’s fine. She takes care of herself. Look at her – she’s going to be 50 in June, she doesn’t look anything like 50, let alone like someone with a doomsday prognosis.” Sword of Damocles hung on the mint green wall over the hospital bed, my morphine drip morphing everyone’s words, a swirl of doctors, test results, and of two hospitals fighting over whose patient’s money the other stole by keeping me in their bed. I felt like a mixed metaphor in the wrong storybook. Now Goldilocks? Clearly I wasn’t in a fairy tale and Goldilocks would certainly find every hospital bed uncomfortable.

The bleak prognosis of my diagnosis shocked me and everyone involved in my life. Inescapable, unbelievable, incurable…a normal life as I once knew it (whatever normal means who can say) abruptly ended as exhaustion, pain, sadness and finally a wholly reinvented life took over completely. What could anyone say after five days hospitalization, five liters of cancerous fluid removed, five days of struggle to work with insurers, five more to become a patient of an oncology team, and five weeks from the day of my initial hospitalization I began my chemo and hormone treatments. Yet all my doctors could say was…wow.

Everything changed, including my relationships with my family, my friends, my stepsons, and Craig. My husband fell into the depths of an anxiety fueled depression. I’m happy to report three years later, he’s finally recovered, sort of – unless some dramatic bullshit flung from the other side of town where his brainwashing banshee of an ex wife pretends to raise his younger son. Do not judge. I’ve kept this ugly saga away from my writing generally speaking. This discussion requires a blog site all its own, and that would only serve to elevate an already overinflated sense of control for a person with a massive narcissistic disorder. No thanks. Dealing with the emotional wreckage and fallout is quite enough. (In case you’re reading this, and you know who you are, go fuck yourself.)

Craig’s recovery requires a medication called Pristiq. His mental health issues began well before my diagnosis. After the stage four gauntlet got laid down, he struggled with the horrible notion of my death and we began about five months in hell to get back to one another. He initially reacted by ignoring me and admitted feeling resentment, of which he felt ashamed. In hindsight I am uncertain as to how ashamed he really felt. It’s clearer to me how much resentment lingers in the air between us, even now, three years later. It’s as though he tests me. He waits to tell me I never want to do anything and asks me to go out with him when I’m having a bad Health day or when I’m enraptured in writing or editing a piece of poetry or an essay for my blog, or trying to work on my Etsy business. All of these things suffer from the resulting bickering brought on by the care giver role thrust upon him. The role he threw off like a bad suit after a long day almost immediately after learning of the responsibilities.

Lonely, scared, angry, tired, moody, but generally motivated to live, I said, “not me, no way.” And sure as I tell anyone who’s reading this, I’m still here three years after my diagnosis of stage IV A1 lobular hormone receptor positive breast cancer with metastasis to the bones (and now liver). My sexuality and womanhood now stripped away from me, I no longer appeal to my husband or anyone for that matter. I feel like I’m a non-gendered adult. I’ve taken a laundry list of medications, sat in monthly seats in the infusion center for shots to my abdomen and gleuts, monthly blood work, countless visits to oncologists, psychologists, palliative oncology, radiology, specialists, a multitude of nurses, a surgeon. I spent a second week-long in the hospital. I’ve been to breast and metastatic support groups, cancer retreats, and learned to deeply meditate.

There’s good things that I’m certain have humbled me. Yet I speak to none of my former friends but a couple. My new friends don’t expect me to be as I was and know me only as I am now – someone with metastatic cancer. I never see my stepsons who have been convinced by their mother that I’m lying about the severity of my disease because I look too good and I’m simply a gold digger who doesn’t want to work full time anymore. I wish, honey, I wish.

It’s still a nightmare and admittedly and despite the “best of the worst case scenarios,” I’m not thrilled with a life path that leads only to an early demise. Canferatu never sleeps, his fangs deep within my neck. And though you cannot see him, he preys on my organs and functional systems until another cocktail puts him into a coma, but a coma he always awakens from to claw at my insides and take more of my energy for himself.

I still want my life back.