Tag: breastcancer

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. ♥️

Positively Connected

“Suffering is necessary until you realize it is unnecessary.” Eckhardt Tolle

Our personalities and sense of self do not stem from our opinions. Not even in our age of entitlement formed through the public ramblings of one single ego-driven tectonic plate moving dictatorial notion. Important, no doubt, to someone impressive to all their tweets and likes command. Of course, every human being beginning at birth has a perspective. Narrow though a newborn’s and pickled though an alcoholic’s – and no single moral standard claims any higher reaches than another. Despite what seems evident to me, there still exists a subsection of hostility driven people, trapped in a prison of anger. Their approach to the world carries an unwavering intent to cause suffering. Yet, we are all responsible for our own suffering as well as responsible for suffering in the world.

So how can this be possible?

I can choose to live as a source of conscious positivity. A great example to illustrate Richard Feynman’s excited and animated discussion of how rubber bands work. Feynman explains in this must watch video by the BBC, how atoms jiggle when excited by other atoms in some way. If I recall one example is a racketball hitting the court. The jiggle created by the contact of bouncing a ball hitting the boards, which ever so slightly increases the heat in the floor because the ball is moving faster than the floor. The measure of increase in temperature then becomes a proof of energy transfer at a molecular level. The floor’s atoms are disrupted by the ball hitting it and that is not even the point although voila, his excitement creates a curiosity in us and an excitement about learning. Similar to positive consciousness of living in the presence of now.

Pedestrian example…notice on days when you’re in a bad mood how others pick up on your negativity and they respond negatively to you in kind? Perhaps you’re driving more aggressively because you spilled coffee all over your car and now speeding over the roads towards a meeting 15 minutes delayed. I can simply arrive at the meeting a bit late, calmly and apologize with a smile. Certainly my reception may start cold, but my cheerfulness and tenacity inevitably override my unfortunate tardiness. My associates’ experience a graceful and present human being and eventually respond in a like manner. I guarantee someone else in your meeting went through a similar situation at some point in their lives. Maybe even that very day. They will remember only what you tell them to remember – meaning how you transfer your energy to the human beings with whom you’re engaged – positive or negative.

Perhaps on my drive I make a negative detour and make myself even later by running a stop sign and getting a ticket. Instead of ruminating and becoming angrier, instead of cursing my spouse or partner, the inanimate coffee, my boss, the other drivers…so much negative energy transference I create in a single drive into a small blip in the course of my life. Why?

Think about it this way perhaps. An opinion in your consciousness when applied to others sets the alarms off, erupting in arguments allowing negative energy to break into your positive space, like a thief. If I view others as equal – no matter their origins and opinions – with an open heart and mind and listen, we find ourselves in positive space with diverse rich colorful discussions, opening minds and knocking on doors rather than knocking them down.

This in 52 years? I earned the understanding of this concept and I’m not sure it’s something I even learned at all. In fact it’s more a feeling in the spiritual sense, than knowledge or a meaning in the mind. Here’s my confusing formula for you science types:

“Now” = what is, what’s gone and what’s going to be. It’s a triplicate paradox – ergo, appropriately, a “tripledox.”

To review how I got there and why that crazy logic train makes sense to me. Some days, my words refuse to connect to any discernible emotional or mind state – or anything I believe worth the investment of my time to sit down and pick up a pen and a piece of paper. As I wrote that last sentence, I realized that is the very worth my time, even if no one else ever reads what my thoughts became. And that’s not why I’m writing. In this moment when the past present and future dance together forever entangled in an infinite ring, what I write becomes very important. Not necessarily to you the reader. (If it does, how Cool is that? We connected.) I write for my physical, spiritual, and mental health.

My connection of mind to pen and paper help me plough through the work I must do to live. And it’s all work right now. I wish I could say differently. But this as all things must pass. Like a fart. Or a tailgating asshole. Or depression. Or bad weather.

And with that, I loathe waking up sometimes. You mean…Princess Positive? Miss Merrymaker? Lady Laughsalot? Moi?

Even hypocritical me. I get so angry I just want to fall off the flat earth and pound hard on the door of the universe – I bet Monty Hall answers and asks me about which door I choose. I say “all three” because you can do what you want in alternate dimensions. Or just because I want to see silver taffeta curtains opening like birthday gifts in my next reality tunnel where I win lunch with Douglas Adams, Dick Feynman, along a three piece lounge set from mid-century modern Michigan circa 1950. Did I digress? Yup. Sorry. And no the women I’d want to lunch with us remain with us. Diverse dream meals-r-us.

In the past 48 hours…

I’ve thrown up, thrown upset crying fits, tossed annoyed looks at The C. Twisted myself emotionally, felt alone, experienced the panic of financially worry about my healthcare, and I can’t get any good deli anywhere in San Jose. But this, too, shall pass. I realize I am where I am because I must be here. And there’s no way to go it alone given the stress of a change of residence and my enemy, thy name is stress. See, I’m dealing with this fucking liver metastasis at the moment. My veins and arteries have no blood count, and my bones work overtime at night so I can’t sleep. I have no appetite, no energy. No visitors. No shit. Lost 25 lbs. not a recommended diet, kids. I’ve had a bad week. It’s hard saying goodbye to everyone and everything all the time. But I can’t linger in this space much longer.

Open all three doors, or Monty gets it – and I’m not in the mood to make a deal. But I will say with the saccharine sweetness of a diabetic candy and the artifice of the broiled roast chicken brown skin from a tanning bed light, you’ll want to go plant wild flowers and kiss your loved ones all on the forehead, and hug your annoyed cat. Or slobbering dog, if your so inclined.

P.S. Another tale of opinions pissing on the heads of others: It would have been my mother’s birthday on the 31st. I wasn’t given any chance at closure because my aunt and brother decided I didn’t get to say goodbye to Elaine Rothman Kaminsky Tramonte. So laughs on them, she’s not gone to me. She’s around telling me I look fine stop worrying, wiping my face with a wet index finger (eww), hugging me, telling me how I’m her beautiful girl. How proud she is of me. And for all the shit our lives dumped in our laps, she was my mother. She loves me. I’m her first born, her daughter. Because they didn’t want me to upset her. How do you keep a child away from a parent, even as she aged I was still her angel, her shayna maydelah, Esther Williams, “mouth”, and the other 100 nick names she bestowed upon me – and she was my mammelah, mah, mom, mommie, my mom.

Flawed. Forever part of me. Forget? Never.

Eventide

Riding passenger side snapping right,
I’m down in front stealing long exposures.
From the back seat our youth sits
Mocking us with instant polaroids.
Destroyed pictures of minutes and memory
Precious and precarious slip a stone
At once here and at once gone.
Right under the driver breaks hard and higher
Up another mile, silently stealing all we pass.
As if it meant nothing, had no value.
Yet we never stop to salute the flowers –
All wilds and yellows and purples.
The foothills’ shoulders grow peonies
Upon sunshine golden with military ranks.

How jagged time?
We spend ours climbing again as
Eventide approaches us.
Stealing the light
Squinting and teasing Every photographer’s eye.
The lens escapes the fight as fists fly
Above us rung the first punch
Headliners: the over-real versus the unbelievable.
Then we drop down tearing around
The Summit dragging the day with us.
With us flat then right over on the side.
Buckshot sprays whitetail from
Underneath the wheels,
My skin and bones chill fast underneath
Blankets just a quarter mile thin –
Count the microclimates in a 14 mile exposure.
My imagined assignment, anyway.

Inertia now driving our ascension
Finally dousing my focus.
Yet I am pacified by
Deep coastal royal blue velvet,
And by the courtly cape
Of dense silver fog.
Trees, reach in and take my attention
Lost in the sky and yet at home.
Away with the little brick foxes
Already started by the drooling hounds,
Running in distant golden broken lines
Shrinking to a pointed index
Finger of bent redwood lumber.
Penciled between the knotted trees
Escaping our eyes
They write letters to us
To one another, to anyone.
I imagine the trees alone love themselves.
Writing in dead languages those
Modern towers of Babylon
Without oral tradition
No monks or followers to take dictation
The mighty ones tie rings around
Paper and papyrus of their own making.
They, like me, can write their own stories.

Distant deamons dance to the music of the eventide,
Whose eardrums thump and pop from slight descents.
Mercies clear the stares and the macabre glances.
And up ahead the night hides just around
The voluptuous Earth’s curves.
Yet she shakes off the road upon her hip
Langushing and lounging
Laughing at all the forsaken highways.

You snap me awake.
My hypnotic state undone
By our quick duel and I, only me –
I roll one window down
With enough sense to know
The party orange of evening presents
A moment for exposure
Showing the night undone
By the simplest flash
As we find a space and stall the motor,
King and queen of the hills
Announced by snare drums and trumpets.
Goodbye, twisted bruised skin of eventide.
Eventide, goodbye.

And now, Ms. Cancer and Mr. Depression

How does one learn to reason with depression? I’d like to share with you a story about a confused partner who, after the passing of her arbitrary three-year deadline, falls into the rabbit hole and finds herself staring at a 40-car pile up and the unenviable clean up of the bloody aftermath. She unreasonably and unfortunately becomes inconsolable with wave after wave of false accusations hurled from across a house she lives in with this depressed man who she no longer knows, or even knows what she feels for him anymore.

Don’t take the bait. Walk away. Leave. For an hour, a week, or…

If it were only that easy. You know who you are – partners of the dysfunctional. But add a little metastatic cancer to the mix…my shoulders are killing me under the weight of it all. I’m sorry if I come across as confusing, but this whole crazy dysthymic depression without an end in sight is confusing.

I’ve finally helped him to treatment. We, well more like he, vomited the angry bitter disgust of a man who simply wanted to raise his two sons across a 2.5 hour session of exhausting couples counseling with my psychologist. She, by the way had breast cancer, can provide him with a helpful view from within should he inquire. He spilled tears and guts for 95% of the session, at the end of which I said he may be better off getting a bit of help for himself or I didn’t feel we’d make the progress we’d hoped for. He immediately went on the defense and the doctor came to mine and remarked, can’t you see she’s very concerned and wants to reconvene when you’ve gotten through a bit of your own healing? He could not disagree.

I’ve read countless books on the topic. NAMI.org is a web site full of great information for you as a depressive’s care giver. All very helpful.

Here’s a few titles available on Amazon and through kindle to keep the costs down:

Talking to Depression: Simple Ways To Connect When Someone In Your Life Is Depressed https://www.amazon.com/dp/B002DYMB1M/ref=cm_sw_r_cp_tai_OPHwAbK3Z6EC

Depression Fallout: The Impact of Depression on Couples and What You Can Do to Preserve the Bond https://www.amazon.com/dp/B0012GTZBG/ref=cm_sw_r_cp_tai_ZQHwAbH1P5EGN

When Depression Hurts Your Relationship: How to Regain Intimacy and Reconnect with Your Partner When You’re Depressed https://www.amazon.com/dp/B00HZ9SA92/ref=cm_sw_r_cp_tai_tRHwAb7H1451X

When Someone You Love is Depressed https://www.amazon.com/dp/B01H0IGJIQ/ref=cm_sw_r_cp_tai_TRHwAbDTCFKWT

I Don’t Want to Talk About It: Overcoming the Secret Legacy of Male Depression https://www.amazon.com/dp/B000FC0Q0C/ref=cm_sw_r_cp_tai_m3HwAbA93R7H9

The confusing days in the life….

When he asked me what time it was I was holding a stack of books and I said that it’s not too late just a second to look at my watch and this was what caused tonight’s major smack down. He’s called me a bitch for two days, running tests to see how I’m going to react to his nasty new nomenclature for me, similar to a teenager cursing in front of his parents. Yet I embarrassed him.

Apparently I’m the one who needs hospitalization and help and that he, “knows what’s going on here.” I ruin everything night after night with my “selfish shit” and do my own thing. My Etsy online shop and writing are more important to me than having a good relationship with him. Yet, it’s all I can do to keep from losing my own mind to the loneliness and isolation of cancer.

I’m somehow playing a game with him and somehow it’s my fault; apparently I’m the root cause of his problems. I tell him that nearly every night he’s laid here leaving me alone and now he’s saying that’s not true that I’m the one who has ignored him. A new critique appears in the repertoire: I’m an Intellectual bully and he does not want to be a victim anymore. Too embarrassed to even suggest anything resembling sex to him anymore, he’s barked back, “the only thing you’re even interested in is sex.”

No, I’m interested in happiness and I love him enough to stay. He also knows I’ve not the physical or financial resources to leave. There’s days when his light comes on and his blue eyes sparkle and shine like two stars in the sky. Come on you, just wake up and shine with me for a little while and let’s shut this nightmare down. It’s never very much about sex, is it. Love in all its permutations requires a cooperation of high and low and mid range notes all beating in time to the same heart. Does cancer extract my heart from my body for study by science and remain in a clear beaker on a dusty shelf behind an outdated computer book from 1999? No, not this time.

He said he wants me here and he loves me, but answers in vagaries when I ask for examples or specifics. As he retorts, more vague statements such as how I always criticize him. I never say anything positive. All he does is help me but I do not let him help me. Each and every time I ask for his help he’s got more important things to do, ignores me, or just sleeps the day away. My very favorite tactical maneuver is to keep me quiet by calling me a nag. I “nag nag nag all the time.” He said he gave himself up and he made that mistake because he thought it was the right thing to do for me. However it cannot possibly be true since I’m not worth it. At least not according to the oxymoronic verbal diarrhea spewing at me night and day.

I ask him what he means by anything he says, yet he won’t tell me. He said he misses himself more then I can ever miss him. This is a wonder because I’ve been mourning him for over three years. I am being crushed under the weight of his depression. My loneliness and frustration are at an all time high. He is starting to tell me how he can’t get anything from me, I have nothing he wants or anything that is valuable to gain from me. He gives, all he does is give and I cannot give anything worthwhile to the relationship so why don’t I just stop fucking up a good thing and just shut up?

Okay.

Lessons from the Present

In my darkest hours collapsing under the weight of my own perceived adversity, I wonder how to find the energy to bring happiness to myself and others while in this life. One relatively recent shift that’s come via studying the practice of presence and living in the “now.” I search for strength from within myself, hoping to find an ore of clarity in a vast cave of stone and archeological discovery. To focus on the present seems implausible on a dry infertile landscape littered with anxiety about my past actions or insidious worry about events or emotional fallout that may never transpire in any of the potential future scenarios that lay stretched out before me.

Whew. Yet all these realizations happen despite the complexity of my given task at hand. An unexpected benefit of my focus in the now: I’m defocussing away from the heaviness, the sadness, the darkness of life with metastatic cancer, throwing away and cross shredding my membership card to Club Cancer. I learn to find clarity here where the present moment provides me with strength cooking at the stove or sitting behind the wheel of my car. Instead of the usual sigh at a routine task, I smile and do what I used to perceive as mundane chores with flawless efficiency and with joy.

The results become a happier self and a much better outcome. Even a moment of silence can bring about deeper meaning in these everyday tasks. The boring becomes the beautiful, the Wonderbread(TM) becomes the wedding cake. Finding beauty in everything I take into my senses for example while stopped at a traffic light on a peaceful Sunday evening. A routine drive becomes magical, sparkling with blue, red, green, purple, pink, gold, and white lights and holiday decorations on houses and buildings. Or while preparing soup from scratch, an activity that certainly brings the past into the present through kitchen skills learned over a lifetime to create a fresh bowl of soul-warming bisque.

The increased value of the ingredient of my presence requires relatively zero investment. It’s really a divestiture of an investment of negativity, rumination, hostility, or even aesthetic snobbery. Instead of focusing on getting to the destination, the journey instead uplifts my heart with more joy than I expect; I float above the paved roads just for a while with the ease of an untethered spirit. Similarly, if I become present in a moment with my pet I find happiness and peace through a relationship to the natural world and with this animal. He consciously plays with me, which sets a good example for me to follow.

Strength, too, I realized comes from human courage exhibited through people’s stories. Our personal narratives bring us to the present with our past experiences. Everyone’s present self must therefore contain and be informed by our past and none are more important or less fortunate than any others – it’s simply a matter of scale and influence: from a great leader of human kind to a single person overcoming a physical handicap.

Ridiculously, compared to how much work I produced in the 11-hour days of my career, I find it difficult some days to write and post a blog piece. My comparably easy tasks sometimes require more strength than I can illicit from my tired and chemically-thrashed body. If I live in my past or concern myself with the future of what might happen I’d never write a word. In other words if I don’t exist in the present, I only focus on the perceived value of the words I write. How insane to think I know the worth to any reader of my discourse? If my expenditure of energy brings any return on investment it must only be for the present situation of this moment for me and in that same line of reasoning, for you in reading my words.

Perhaps my essays or poetry bring you a smile. Maybe they give you a bit more strength in knowing you’re not crazy or you’re not the only one who feels the way you do. I believe then in this moment, in the here and now where our individual thinking intersects, we become friends. Whether you’re a new friend or a friend come to read a while for a visit, I’m so glad you came to share your presence with me – I treasure your gift.

Some might arrive as a short respite from of a world severed from it’s once well mapped out future, now thrust into the cancer culture where we’ve a lot to share with each other. Here, either a love giver to one with a disease or a cancer survivor, we can walk hand and hand. We step to a rhythm of head nods of recognition as we see of ourselves in one another like mirrors. Our circle contains everyone who continues to prove that we can live on as a reluctant card carrying member of Club Cancer. Including those who love us.

And to those who pop in for a visit without your identification card – newsflash – you don’t need a card. We welcome your visits and love and time, so stop by often. Please, just don’t remark when you hear one if us has cancer, “well you could get hit by a bus.” We throw people out for saying ignorant, insulting crap or regaling us with some vaguely fictional cancer story about your aunt’s neighbor’s ex boyfriends third cousin’s adopted brother. Stories couched in empathy but only meant to alleviate your own guilt and the inability to not make another’s pain about yourself.

I welcome anyone who cares enough to visit: now is always the best time.

Shadow Dancing

Until the day comes when my breath no longer returns from the night,
Now visible from my lungs, vapor trails hang frozen in the wintry air —
Then if my labored lungs must remain longer, I remain.
When the last black bloom of your want wilts and waivers again,
And my secret history garden fades into the night like dreamers in the shallows,
Tumbling (at the seashore, swept up with any undelivered moonlight)
Until my breathlessness sheds the air’s sour taste,
Returning me to the source of persistent music and its instruments
Tuned by invisible, merciless hands.
Voices sweet like memories singing,
Louder than every sound ever heard all together at one time,
To drown out my questions,
Your ciphers long forgotten yet tested for time
To the unknown names of every crime.
Yet to ask from nowhere, I insist —
There, how effortlessly you knew when I waited until the day turned and left.
(You cannot say the name “Forever” again.)

While my words waltz to the end of time,
Dancing to a rolling lento drum,
I sent you a present, a tune wrapped up
With yesterday’s news knotted in pale silken twine – please
Right here in black and white, look at it.
How do you refute indisputable lines?
(Though now every last bite of it tastes rotten and bitter…)
Untie the infinite ribbons of light opening my hands, lost in midair
Drink deep from the water of my solace,
As it drips with words from my lips
To quench the ache of every moment:
Find a small skeleton key in my laced fingers,
Weakened from solving all history’s lessons.
As a body folds in on itself
It holds faster, together.
(We question the answers and quickly bury our words.)

Maybe next year we can awaken the annuals again.
The stuff of sudden daydreams —
You falling into the arms of the air,
I sit and wait although not selfish with my hope,
Yet this alone drives me home again.
(If cure becomes your solitude, then shame reminds you of my defeat.)
As the truth emerges, lighting dim violet walls,
Our bedroom shadows sway dancing, slowly.
As I sing softly in the key of grace,
Hold on to me so that I may keep you still
And reach gently into your memory’s halls.
Your open windows – please,
(Tonight unlatched, just this once I may return unharmed.)

Now, go back to sleep, stay still unmoved until
Morning as its long fingers find your cold cheeks.
Starting you awake once more,
By hearing some faint distant laughter you think,
“I know her.”
And you may possibly recognize my voice like notes of an opera,
(Now impossible to discern my spirit, ascending towards starlight and mournings bright sun)
No one takes anybody or a thing into the ever-years aspired,
And where the memory serves no use, we lose our hearts and fears.
And though we know the futility of life’s take, we all roll at once and descend to die trying.

Son of a Canferatu

Chasing me for almost three years, could Canferatu possibly close in on me, catching up in an average game of cat and mouse? Struggling to stay away from its heinous blasts of hot, narciferous breath, of the damp bone cold green-gray living-dead body, or the gnarled knuckles arthritic and exposing curled, long encrusted finger nails? I feel trapped inside the generic walls and barely concealing privacy curtains of many scenes of many hospitals. Canferatu pushes up against me and wants to bite me. I know how to handle a vampire, the kind of film legend, of the horror genre and less pathos imbued Dracula from the infamous oeuvre by Bram Stoker. The stuff of romantic legendary fictional bumps in the night.

Yet I, perhaps as a pathetic stand against my fiend, yet not so unlike Lucy who loses her life to kill Nosferatu, hold up some garlic I found buried in my backpack. (I’d have made a great Let’s Make a Deal contestant but not a great paperback heroine, I’m afraid). I duck under Canferatu, reeling from my video game style one-two punch, leaving the cold, putrid huffing breath, which smells like rotting animal meat. It’s ugly pointed fangs still glisten with the blood of his latest victims. I chuckle to myself.

I stroll nonchalantly in through the emergency room security and then sliding door cutting the air full of concern and the permanent infirms the temporarily injured with their and brain damagingly bored visitors. Some of the older women and men, the infirm, sit in tubing laden wheelchairs made of slings strung on metal pipes while the young sat on parents or in strollers with their curious eyes peering out wide with fever or fear, over annoying masks. Can anyone see their own illness monsters sitting in their laps, hanging from the ceiling above, doing high wire acts? Illness monsters turn to look me over, their zombie-like stares piercing my heart, and I pull a gleaming arrow from my backpack and shoot the largest dumbest monster through the eyes. They look at my tired face. “Unimpressed,” said their gazes. Descending a flight of brightly lit, stone cold stairs, I trip on the last step and land flat on my face. I look up to see several helping hands reaching out to get me back up on my feet down in the basement on the #oncology floor.

My partner, and his insistence, ripped my crying annoyed body from my comfortable bed into the car. He took me to Stanford Medical Center’s emergency room. #Metastatic #breast-cancer, that strange body snatcher, moved into my corpus and took up residence squatting in a few choice properties – now my liver on its menu. I could take up residence as a Buddha statue on a Tibetan shrine, my abdomen distended with 10 pounds of fluid, yet again.

My intestines crushed inside the cavity wall, and pinched by tiny cancer seedlings floating in the fluid and causing a kind of neurological short circuiting. The long trip, of both small and large tubing, suffers from incredibly slow transit and now an infection near my stomachs dumping valve, my ilium. By the light of the TV on with no sound on, the watery fluid, extracted by my awesome Dr. Brian, assisted through the night by Nurse D, who has a contagious laugh and keeps me pain-free, with her big smile and easy manor. Then, as the gastric acid moved down from my esophagus, back into its rightful home in my stomach.

I find myself actually hungry after a month or two of chicken soup and not much else other than the allusive matzoh ball (thank you Gunther’s Deli San Jose) or more common creature comfort, the wonton. Not having eaten for a lunar day, I’m very hangry (hungry + angry) by the time I’m able to eat anything at all. We arrived at 1:00 pm today; by 7:00 pm pacific, I fill with boredom, pain, and weariness from a day-long wait, interspersed with ugly, unwarranted comments and curses from my partner, a three year long depression sufferer.

Apparently, ascites build up and potential infection where they found a thickening of my bowel in the very same spot of my abdomen where I complained to my oncologist of constant pain. A pain level so fiercely off the charts, its feeling replaced organs and tissue about eight weeks ago.

No sleep and no change of clothing, no toiletries, no cat, not much of anything anywhere like home and of course no partner to hold me or wipe away any fears with a quick flick of the wrist. I’m complaining now rather than feeling the grace of life, in the now, where I am. I am grateful and very fortunate for my complete access to skilled nurses, doctors, and support staff.

That said, what company’s geniuses made this radically uncomfortable hospital bed? From the designers of, Hospital Gown, opening in the back for no real reason and showing the crack in your ass for over a century, comes new Z-Style Forward to the Past Torture Bed, now with patented bubble wrap technology in our extra, extra thin mattress. They tell me it’s for insuring patients do not get bedsores. And I’m exhausted from the bangs and inane noise coming from the room next to the one I share with a woman who speaks only Spanish and requires LOUD translators. Although she can apparently read the room service menu and translate it back to Spanish to order breakfast. She also gave me her cold so I’m running about a 99 degree fever and feeling flu-like symptoms.

Over the next few days my oncological team wants to remove, without prejudice, any remaining stuff in my sore, distended guts – still experiencing “slow transit.” Slow transit, an intrastate train system outside the country of Switzerland, where measurements of timeliness literally are marked to the 10th of a second. On time. I wish for a magic metamorphosis of my slow guts into a fast Swiss Train version.

Guts. Hmmm, apparently my friends and family admire my spiritual resilience, my steadiness and guts in the face of scary situations, and in particular, my over the age of consent blue humor. How much can my good qualities can stretch today? And so, I remain, my dear blog reader or two, your friend, in a sad state of Sick, in country called Illness, in a loud windowless room with Canferatu scratching on my door. He scares me nearly to death with oddly scented train cars and unpredictable time table based on non-Swiss random intervals.

I smell nice however, I’m not shooting with much accuracy, these days, either. From Werner Herzog’s remake with Klaus Kinski as Nosferatu, based mostly on the silent Murnau adaptation of the Stoker novel, I leave you with a quote, and one that says maybe it’s not Lucy with whom I should resonate, but the monster himself:

To be unable to grow old is terrible… Death is not the worst…

#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 🖖🏼

The Country of Illness

*Fearless (David Gilmour, Roger Waters)

The country of Illness
In a town called sick
Squabbling or wordless,
Rounded outwardly thick.

Bellicose brick towers
Bruised smokey blue
Indian summer showers
Over babies bathed anew.

Watery heads doused by the sea
Drowning deep in kitchen sinks
Forks napkins politeness and please
Cheeks red as lipstick all pinched and pink.

A fat bike tire, a bent back bow
Digestion, plagues, and like tissue
Blowing out each open widow
Oh, he whispered: maybe I’ll kiss you.

In Illness, my country
Sick towns allegiance to my space
I swim free as concrete
Cold deep water displace.

(Fearlessly the idiot* dying
Yet with whom that scares me so.
Reap later you enemy spying —
And now too too late to sow.)

Saving Rescuers

I.

My love how wrong I am no star,
Somehow near but towards afar,
I leaned against your song.
Saving myself, I once sat up high –
Tall as a lifeguard tested and tried.

All zinc white nose, a clownish umbrella,

The angry preservation of a tune, a cappella.
Only block the violets from burning my skin.

Yet I rescind. Did I seek my mortal coil
Before drowning in the soil? So dusty.

Just before the burn wraps around my effigy,
Familiar arms grasp and pull you from the sea,
As your weight rises like an apogee –
Why must you make my job so hard?
A soaked coat draped over your bare

Hairless shoulder, While on the beach

Your chest fills with breath.

My waves, my shore.

II.

We slowly crest.
Yet you weigh nothing, even wet.
Simply the dearth of your will,
So short and without regard or debt.
We hear the oceans excess cheers,
And feel it’s drag upon our boney years.
Like an owl’s catty joke –
All height without heft. I let go
Just as you parade and poke
At the grievers and the bereft.
Stronger than knives or strokes and
Beleaguered, lonesome old oaks,
Together again, those wings, the trees,
Gasping at them as I forgot to sing.
Spanning years’ dimly stated demands
Its our last night in the Neverland.
And thus we fly away and apart –
Your good leg tied inside paper.
A pigeon homed to name the saint.
Save for you, I cannot restore restraint
Of discord’s time off or it’s application.
For now slippers of silver, icy with complaints,
For in the shadows of Mercury’s elation,

Heaving words, breaking bones, ingratiation.

Ever! and yet now you take your final stand?
Yet who but I deserved to walk in chains and receive all reprimands.

Not a single one dared, none but you understands.