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.

It is what it is, huh?

If “it is what it is,” why is it so the collateral damage of metastatic cancer so fucking hard?

Why is it okay to break promises to me?

Why is it so painful to look at the shattering of once solid love?

Why is it okay for me to take handfuls of pills but it’s not okay for you to take one?

Why did I think it was a good idea to give away all my strength?

Why did it fail me to believe when it came down to it?

Why is it you can’t put your paranoia away for one day and help me live?

Why is it impossible to find my fight today?

Why is it okay for my needs not to matter?

How is it possible for you to listen silently while you hear me cry?

Why was it okay for me to be a day late to get the assist I needed to save my life?

Why is it okay for a copayment for chemotherapy to be greater than an entire months disability check?

Why is it okay to see that my life is slipping away?

It isn’t what my it is.

Why isn’t loyalty, isn’t love, isn’t commitment, isn’t kindness, and isn’t believing in the human spirit – why aren’t these its the “it is what it is?” It is what “it is is always negative.” Why?

Fuck it.

Whatever it is.

#Chemotherapy and The #Customer Experience: #CVS, #Pfizer, and the danger of #outsourcing without educating agents

The scene from the movie, “The Jerk,” with Steve Martin, in which he becomes “somebody” because he finds his name, finds himself, in the local phone book. For those readers too young to have experienced this simple pleasure, you probably haven’t a clue what a #2 pencil and a cassette tape have to do with one another, either. “Hey, Ilene, what the fuck does phone book, “The Jerk,” cassette tapes, and a pencil have to do with cancer?” you’re asking? Well, gather round kids, grab a s’more, and I’ll tell ya. Not a goddamed thing. But neither should outsourcing and chemotherapy have anything to do with a patient who is speaking to a foreign call center with an agent without training to speak with stage 4 cancer patients, either.

Should FEDEX and UPS both of which delivered separate packages, have required a signiture from my partner or I as the special victims unit of CVS Carremark located in India? By the way, both packages contained VOLUMOUS amounts of Phizer literature. I used their web site irrespectively, even if the loads of junk looking mail in both boxes were important.

I am not a happy customer and my experience with this chain of events was on a scale of 1 to 5 a negative 2. The stuff could have sat in the sun on my front stoop all day rendering it useless had we not been home, seeing as the packages arrived one day early. Indeed no signiture was requested for my Ibrance chemotherapy . While online shopping for the holidays hits an all time record this year, so do the numbers of packages stolen from porches all across the United States. An abhorrent disregard for those of us who face awful diseases combined with theivery creates little dollar signs in the pupils of the eyes of would-be gift grifters. Like Richie Rich of comic book infamy, the spoiled rotten Peter Pan with dollar sign eyes, wearing Angus Young’s schoolboy stage outfit (sigh…the lead guitar player and co-founder of metal band AC/DC. A band named for the two types of commercial electrical currents that were the talk of the investment and scientific communities around 1900 and the fight between whether AC – Nicola Tesla, or DC – Thomas Edison, would prevail. AC won due to Tesla’s selfless power to the people efforts. Not AC/DC the slang term for bisexuality, although I am in huge support of anything anyone wants to do or try or be as long they consensually do it while not hurting anyone or anything.)

Okay, back now. Where was I going…

Right! CVS called to schedule the delivery of my first 21-day supply of Ibrance. I spoke to a nice enough woman who then asked that I hold while she was going to hand me off to someone who would get my information. Excuse me?

I was transferred to a man in an India-based call center who CLEARLY had no idea what the fuck Ibrance was for, since he was WAY TOO CHEERFUL and kept asking me how lovely my day was going and how great was I doing today!?! And he was VERY INSISTANT that me or my partner be at home THURSDAY, not WEDNESDAY, when Ibrance and a second unknown package containing oadnestron, a prescription anti vomit pill apparently my cool and yet sweet and very smart oncologist prescribed, would arrive.

So now the contact center has his infornation and mine stored neatly in a database to ANNOY US BOTH at some later date. Bad job, CVS, very bad customer experience indeed. Get your shit together or give Phizer’s the chance to outsource its fulfillment and support business for cancer medications to a company that will TRAIN ITS AGENTS on their customer’s needs. Yes, I did receive my Ibrance, and after reading enough about side effects, how to avoid them, and whatever else Phizer’s WEBSITE had to offer, here I go. Wish me good luck, good health, but please do not for the love of things great and small ask me how great my day is going.

I might puke on your shoes 🖖🏼