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.

My Funny Port-a-cath

Today is my least favorite day of the month. It’s subcutaneous injection day  at the chemo infusion center. If you look at the photos of my face and upper chest, the big bandage is over my “port-a-cath,” which is used for my blood draw,  sometimes. Mainly this is an expensive tap into my body, which the nurses flush monthly with heparin to keep it free of clogs and of any infections. That port, which cost over $47,000, was surgically installed in the hospital in March of 2015 about 3.2 milliseconds after they suspected I had cancer. Its never been used for anything but the occasional blood draws. And not all nurses are trained to use it. You can tell me cancer isn’t a successful business model, and I will sell you a bridge that connects Brooklyn to Manhattan.

“Through a port (sometimes called by brand names such as Port-a-cath or Mediport) inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” From breast cancer.org http://www.breastcancer.org/treatment/chemotherapy/process/how

Mostly, It Looks as though I have a plug used for charging an electric car. Just call me Nicole Tesla. It’s my personal anachronistic device or my PAD. Funny story – While getting a quick car wash a few months back, the gothic teen who was on cashier duty that day asked me if it were a new kind of under skin piercing. I told her what it was and she said, “wow cool!”  I had to laugh instead of becoming indignant. I said, well not really, and I hope you never need to have one installed but you can use me to charge your Prius. To whit she asked, “really?” And with that, I said absolutely, wished her a good evening and reminded her to get a mammogram.

So I get three types of injections today:

Faslodex – two HUGE viscous injections given in tandem by two nurses  into my upper gluteus maximii. It takes 30-40 seconds to get these suckers into my body

XGeva -subcutaneous into my abdomen

Zolodex – subcutaneous into my abdomen

Yes they hurt. A lot. But I’m a good patient and the nurses in the infusion center are angels in human form. Bless their love and compassion.

 

Welcome to the Machine

I climbed out of bed at 4:30. 4:30 PM. Oh god. The daylight hours dwindle quickly away. Off goes my husband – who is suffering from severe depression and doesn’t wake up unless I do – to grab my stepson from school.  Wishing I had gotten up hours ago, let’s say 8 hours ago, I spend the next 45 minutes hoping for any kind of intestinal goodie my body can produce and my left ass cheek falls asleep while I sit reading email on the toilet. If you’ve not had a part of your body tingle and go numb from sitting on the can, you’re not missing anything special. However, a painful side effect of pain medication – major constipation. Squeeze and pray, yet not even a milk dud today. Shit! I now get my numb ass into the shower.

I sneak another peak at myself before the shower and I gasp at my reflection – it would appear as though I slept as one might if the only part of their body to make contact with the bed  were their face. My eyelashes looked like Bettie Boop’s and the pallor of my skin has the tincture of a nearly extinct pink Chinese albino dolphin. Not pretty but something you cannot stop staring at because it’s so ugly in a cute, puffy way. No wonder the poor things are doomed for extinction. They cannot bring themselves to have sex with one another – they’re that ugly. But the warm water over my head has a magical effect on my entire well being. After wiping down the glass shower walls so they don’t become encrusted with the hard water of Santa Clara county, known also for its high PPM of  cyanide – which when you think about it probably becomes gasious in the shower and keeps oxygen from getting absorbed by your body (see I’m already distracted and took two trips to Wikipedia and fact checked and then rat holed on the etymology of cyanide while writing this post)  I return to the mirror in a semi recognizable form of me.

Before I was hit by a bus last March, it took me all of 15 minutes from shower to keys in the ignition. Now, if I remember where my keys and everything else I need are today, we might give it an hour to 90 minutes. I’m not wearing more make up, or doing a big fluffy hair do, but fifty seven existential discussions with myself and forty three distractions into what might be one or all of my five hobbies and/ or the booth at the antique shop or my Etsy store and maybe 10 text messages and oh I forgot to take all my pills and eat and…well  it’s too late to even get outside today.

But it turns out I wasn’t hit by a bus last year. I want to tell you a secret – I was diagnosed with hormone receptor positive stage IV lobular breast cancer with bone metastasis. And you might say, ” well you could be hit by a bus, too.” Chances of that happening? 4 in 100,000 pedestrians die each year by any moving vehicle according to the World Health Organization, which keeps me completely distracted for so long that I thought I lost this first blog post but thank goodness WordPress doesn’t suck and it auto saved this post. For better or worse. You be the judge. Anyway – your chances of being killed by a cancer hitting you? 186 out of every 100,000 of us. So, for today anyway since I never did get out of the house, I wasn’t killed by an errant bus jumping a curb and hitting me. And the cancer didn’t kill me today, either.

Score one for the home team. Oh and I don’t know that anyone was hit by a bus and died of cancer at the same time either. So shut up. Stop saying that to us people with cancer. I promise I won’t say it to anyone of you two or three people who read this and don’t have it. Deal?