PET Scans and Other Acronyms

This poem, though inspired by some disease that requires I become prostrate to the big grayish pallor of the gaping mouths of machines, represents otherwise the first of several metastatic nods to national poetry month. And, understandably very much inspired by my own internal struggles: doubts in the treatments, one that causes chemo brain, causes degradation of my body, causes me to want to seek out other therapies.

Friday makes a bad choice for any kind of diagnostic test when you’re held down by a terminal disease by the hands and feet. Like the iconic Gulliver’s Travels mind’s eye view of the giant captured on the island of little people, tied down with stakes and rope. His captors run around laughing and taunting their flannel clad prize man, kicking at the sand and pushing his chest against the ropes.

Our scan du jour, a PET Scan with radioactive contrast markers. My results, if I’m unlucky and Dr. B doesn’t get them over the weekend and send an email so I needn’t stress, will be delivered Monday at my 4:30 during oncologist appointment. Standing up for what’s only right to not have weekends for a three-month stint, my dues were paid in full and in advance. I wanted lunches and chair massages and the occasional pedicure! Weekend people get graham crackers and little kid size boxes of apple juice from concentrate. Yuck. Sugar for my pretty, bad your little cat too!?!

After my new improved appointment schedule of Monday’s around 1:00 pm for labs and onto a sit under the drip into my port whilst under the spell of Benadryl, Pepcid, and steroids. I awaken usually not feeling like I slept but merely dreamed instead that I slept. Last weekend the male nurses cheered loudly for their March madness team and the others had been called into a staff meeting. The nurse, the most competent thus far, who put my chemo in my port was not the nurse I woke up joking to, and she said nothing. I’m beginning to feel like an imposition to the lifestyle of many of these people degreed in caregiving.

God knows if my oncologist finds out I was left unattended, I think he may become annoyed and even angry. He’d come to the infusion center like a parent checking in on a child in daycare and found I’d not been given the hours 1:1 nurse coverage since I stopped breathing during the initial Taxol drip at my first appointment. He saw me alone and he could have had this nurse by the nape of the neck the way she tilted her head lightly forward as he walked behind her, the silence of the others palpable. She sat down and he said he wanted me covered specifically and no excuse. She sat for a pitiful 15 minutes, handed me the call button and motioned to press it.

I called after her to say, umm, hello? My name is Ilene not “you” or nothing at all, and you or someone in your position to resuscitate me should this no breathing thing recur should be here not not here. She said she could see me from the desk. And walked away. No one ever did come to insure my respiration continued, not for the last 14 treatments. I’m all weeks on. No weeks off, until May 28th. Then I’m free for a while of the infusion center. I’ll ring a hollow sounding bell. It won’t be the end of treatment. Just the end of this egregious protocol (that’s treatment in cancer speak). The side effects cumulatively build up as my eyebrows, underarm hair, and nasal cilia aren’t getting better. Worse. My exhaustion, my word loss, my general malaise grows day after day, week over week. And still I rise. It hurts some days more than others but I rise.

Now, for something completely different, the poem…

A Scanner, Brightly

Meditating, my elbows inside
Blood draining into my radiant body
Port standing brightly waiting
For an access pass
Checking for sugar upon my lips.
The remaining life of uranium
Available and waiting
Not like on an atoll in the pacific
Yet like in those black and white films
Cringing they watched the blowback
And wonder how the film survived the war.
Then the subtle kindness of
A starched white pillowcase
Holding me like a potato sack.
My arms akimbo to my ears
Sliding in and out of an expensive
Engagement rig dignified enough
I married this disease for life.
And what mystery you present
As you wash over my half-life body
I cannot read your name in the darkness
Behind my eyes I’m sure the stars still
Shine, face down I know the sun still
Rises. But what did it stand for?
P.E.T. me again I don’t recall:

Patience, energy, time
Pain, emptiness, taxing
Pathway, eating, through
Palliative, end of life, treadmill
Parasite, entangled, tornado
Patiently, earmarking, trade offs
Powerful, everyday, trying
Practicing, Eastern, traditions
Potential, ego, transmitter
People, envying, tools
Precious, errant, traits
Prevent, except, today
Perhaps, everyone, took off
Persons, except, those
Souls concerned about no one.

I will pray for you

If I hear you say, “I’ll pray for you,” I’d like to know what prayers are enchanted, spoken aloud, spoken to yourself, written or expressed without the consent of the NFL or the Roman Catholic Church. I’d love to sit quietly and hear the truth to God, the universe, and the restaurant at the end of infinite space and time (a conundrum as rich as a prayer itself.)

But I don’t hear anyone praying. There’s no cancer Mecca where everyone faces east at a specific time of day to pray. If your words are true, come sit with me and share your prayers. Else, please don’t say you pray as a good way to design an end to a conversation in which you’d rather not participate. If I can handle nearly every night in the hospital since thanksgiving up until nearly mid December, it’s perfectly okay not to pray for me or say you even think about it, but maybe you do. So, my heart says, “leave it alone and don’t look a gift rabbi in the mouth.” But I can’t let this one go.

How’s oncologist’s prognosis?
My oncologist looks wistfully at me as if he’s in awe of my state of being alive. I imagine the adjective “whistful” hasn’t been applied to him since a love letter from his now wife of over 25 years sent back in medical school in as many years ago. I love my oncologist for knowing he doesn’t know what to say. For knowing he really wants me alive. For knowing in my heart the hope in my eyes reveals itself to him. He dares not crash it like the crystal palace so burned to the ground almost symbolically before the beginning of Hitler bombing Britain, before Chamberlain said I quit, and before the Lion, Churchill came to pray, too.

Such as upon The Duke of Windsor’s abjuration of the throne for a twice divorced American social climber extraordinary. Yet she remained until his death some 30 years later as his wife, and certainly more interesting than a sniveling ex prince. My doctor would no more give up on the throne of my health than I would. So I know when he prays for me, and he does, I needn’t listen in because he brings them to me like letters tied in bows and looks at me with a sidelong smile saying bless you and keep you and let’s get this thing, huh? I’m his miracle kid.

My palliative doctor: She’s gone from the Stanford practice and my new palliative oncologist basically types, nods, and hands me prescriptions for medication. That’s why I thought I’d ask someone I trust. My old palliative had recommended CBD to THC 3:1 but that was before taxol. Now I’m on my online groups and everyone has a different opinion but no one lives here in northern California. It’s kind of a strange hypocrisy that everybody does it but they don’t say they do. At times my stomach is in so much pain even compazine doesn’t help but smoking marijuana does. It’s a crap shoot and my friends generally help but this is beyond what they know or want to understand.

So I tend to reach out when necessary to people closer in situation and like I said, who I trust. Marijuana’s legal, but not regulated for promised content of purity so there’s no standardization. I’m essentially on my own doing what I think I need.

The good news: I’m incrementally the very slightest bit better each day. However the chemo is very very hard on me – I cannot say less good about this radical pathway to getting better than that. I’m driven to believe there’s a better way. If the patient is gone, what’s the point of treatment. Mind you if it’s saving my life I’m not complaining.

How deep is your love?
Craig’s busied himself on home improvement and seems to have pretty much recovered from his depression finally, but he’s still somewhat tenuous. He’s unable to handle illness and I’m not as utilitarian as I once was – the need and the ability are both gone so we shall see what the future brings, but for now, my friend is coming the day after Christmas to help me until the 6th or so and my old housekeeper insists on coming and cleaning and helping me with my online shop stuff once a week for nothing. I insist in paying her something since she’s not responsible for the cleanliness of my home. I have angels in my architecture peering out – she’s one of them. And she had to promise me to please quit smoking. And being a good sweet person she aims to do it.

I have several good friends who check up on me too. I’ll probably go to a friends for Xmas dinner instead of being alone. I’m saddened that neither of my stepsons have asked about me and I haven’t heard one peep from my younger one, who really surprises me. I don’t even have the 19 year olds new phone number – I’m not asking either – I spent 10 years raising them. But I know it’s either not even on their frontal lobes or it’s just like with dear dad, if I don’t have anything to give why bother?

Last year I had loaned the younger kid over $500 for Xmas and for tickets to a concert he took his girlfriend, whom I’m glad to say he’s still with, and he couldn’t pay me back. I forgave the debt, but since then he seems even further away. Like everything and everyone seem a little more distant and like a good diaspora shouldn’t come return again. But it was never this way until this year and now zero words at all get exchanged. I know nothing changed as far as how I feel but granted a year and a lot of water has traversed the spaces in between and I’m simply the undeniably dying evil stepmom now.

Always something there to remind me.
People cannot just pop over anymore, although company keeps my mind off my cancer. I was supposed to go to LA next weekend for a Byron Katie New Years cleanse to which she gave me a personal scholarship to go but I clearly cannot. I wish that I could and was in better condition to steep myself in healing practices and guilt releases of the most obstinate kind. The kind that wrestle your soul until the bitter orange end gets bitten off at the navel and just as you’re ready to say, “I get it now!” You’re gone.

There’s a certain audible cruelty with this tumor in my peritoneal cavity. At least we know once you’ve got metastatic it’s no lie – you can be fine today and dead in a month. I believe this pain is a universal nudge for unclasping my hands, untying my blindfolds, seeing what’s realistic, and slowing the hell down a bit. And I bit off way more than I could chew. So I’m sorry the cat really had my tongue.

Each morning I wake up…
If you say prayers what are they? Are the words biblical, just a short thought of something bright and healthy, or vibes of happiness in general? What, if you don’t mind sharing those less personal in nature, do you pray for when you think of a sick friend or relative? I would appreciate if you’d please leave a comment. I’d really love to hear from you, and as cheeky as I may sound, I know it’s serious business. That’s why I’m slightly veering off the ramp towards Offended and off the road when I’m blown off of a text or phone or in person conversation with the words “I’ll pray for you.”

Will you?

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.