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.

Peace, Peace: our universe of caregivers

Traversing my inner space wearing the lens of metastatic disease, my inner eye wanders into dark places at times. The glasses have me reading invisibilities into ideas that have no real importance. Ideas such as what my life’s purpose what could I possibly serve the world when at the moment I was diagnosed with #metastatic breast cancer three years ago, my needs far outweigh my ability to give. Many days my questions return only an inner sigh of response. My contributions and defining myself and my roles becomes so foggy, so unclear to me.

Further with a partner recovering finally from long term #depression it becomes even more unclear: is my condition a contributing factor? How can he not see me as even slightly inspiring to want to get well and do the work outside of the psychiatrist’s office? Eh. It’s all so, “boohoo, poor little me!” I tell myself to get over it, just as my chemo arrives via UPS, which ironically I could not afford the $3000 copay for without financial assistance. I recive a gift monthly to get my life extending #chemotherapy, #Ibrance from anonymous and generous people who donate to the Patient Advocacy Foundation, for which I am grateful.

After a morning of inner question wrestling, I finally wrenched my sorry self up and stole away for a few quiet moments today to work on revisions of some poetry. This, while I could listen in and out to a program on astrophysics that the C was watching, making me feel even smaller and inconsequential! Then a gift from my friend Elizabeth arrived in the form of an email, and just when the universe’s infinite wisdom knew it should. Her note reminded me of my importance above and beyond an old outdated and outwardly defined meaning of “self.” She complimented me on the poem I wrote for a memorial for her mentor. I am so grateful to have contributed in some small way in helping Elizabeth in her mourning process. Her mentor, Jnani Chapman, who was the true embodiment of how healing can transpire through faith, love, human touch, and yoga practices.

She remains an inspiration who helped so many with cancer and training those who dedicate their lives to helping us. I met Elizabeth and Jnaini at the #Cancer Help Program (CHP), which I attended last October. Elizabeth took over Jnani’s massage therapy room where she practiced for almost 30 years. It’s in a very sacred place in this world and you’d have to truly experience it to how the place itself ushers in healing and peace. My photos don’t transmit much of this feeling but you can see a little of it if you venture into my portfolio on this blog.

Jnaini died in December unexpectedly in an automobile accident as she traveled south to catch a flight back east late one night after a CHP retreat at #Commonweal in Bolinas, California. I told my friend that undoubtedly Jnaini would want her to give her gifts and carry on her legacy in that room. Once an understudy, the time had come to take over as the leading lady. Elizabeth, like Jnaini, is an amazingly talented, empathic, and beautiful woman who offers the world care and love. I reminded her the importance of not forgetting about herself and to take time for self care. Any of us can become so enraptured in the gift of helping others at times we forget or we believe we don’t need, or worse, don’t deserve self care and loving kindness from others. We all deserve love and care and beauty every single day, be we cancer patients, caregivers, physicians, nurses, non profits, and the list of supporting people we can forget as cancer patients are out there battling along on our behalf’s.

We all must remember that the state of mind we call “alone”or “lonely” really is just that, a state of mind. If we allow the goodness in the world to enter our soul spaces and stop minding the sole space we physically and temporarily exist in at a given moment, then perhaps a smile rather than tears washes the pain of our disease away and let’s healing take its place. Sometimes, even the vastness of the universe as seen through the astrophysicist’s telescope doesn’t make us seem all that inconsequential after all.

And as Michael and Waz two of the founders of the CHP close out a discussion at Commonweal, “peace, peace.”

The Gracie Foundation

Everyone needs a little pampering, a surprise gift of love, and no one moreso than a person with metastatic breast Cancer. The Gracie Foundation provides all that and a deep feeling of warm love in a priority mail box to its recipients. I received mine on Monday and not a moment too soon, either. You can nominate yourself or be  nominated by someone else to receive the amazingly beautiful and incredibly useful, high quality priducts to make breast cancer treatments just a little easier to bear. In my box: a large bottle, with pump, of body lotion; a scented soy candle; a cooling eye mask; a bath scrunchie; a gray knit cap; pink warm socks; an awesome mug for a big cup of tea; delicious scented soap; a pen and todo pad for chemo brain days; face cleansing wipes; and a book explaining the origins of the idea and the woman who founded this wellspring of love to carry on her legacy through giving even beyond her physical lifetime.

Gracie’s husband, who she married just a week before her fight with cancer ended, carries on her legacy and so he and volunteers ship off a little of Gracie’s beauty to others who need a bit of that special thing that made her a much loved woman of substantial giving.

Thank you, Gracie. Your spirit and soul fill my heart with beauty and joy, and I think that’s just what you had in mind. ♥️