Tag: bone metastasis

It is what it is, huh?

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

Why is it okay to break promises to me?

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

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

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

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

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

Why is it impossible to find my fight today?

Why is it okay for my needs not to matter?

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

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

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

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

It isn’t what my it is.

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

Fuck it.

Whatever it is.

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

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

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

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

Okay, back now. Where was I going…

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

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

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

I might puke on your shoes 🖖🏼

My Loves Electric (Not Anymore)


Our “Friends” Electric Gary Neumann

There’s a knock on the door/ and just for a second I thought I remembered you.
So now I’m alone / and I thought I could fend for myself.
(From Our Friends Electric by Gary Neumann)

I’m in a terrible dream from which awakening may prove worse. My house in a state of disrepair, crumbling down around me. I try to run as the floorboards warp and break behind me with each step, I scream moving towards a closing door my hand grips inches from the handle as it shuts and locks me inside our home’s sweet wreckage. My good dreams of the future simply exist as memories never made. Each new day wakes me with only the potential of a kind morning. And still alone, my mind races back to that door slamming in my dream single lingering question: I face myself and ask – where do I go from here?

My partner of 10 years decided in his state of untreated general anxiety disorder and depression to quit the miraculous rTMS treatments that incrementally could save him from a life in darkness. The magnetic woodpecker that sat over his head for 40 minutes and gave me five memorably glorious and wonderful days with him. Days and nights when his eyes returned to their beautiful sparkling turquoise with flecks of gold from cold, grey, and dead.

We want to sell our townhome. Simon our cat and me probably, for my longer term mortality, must move away from him should he remain embodied in anxiety’s bouts of rage and pain. Because metastatic breast cancer should take poll position over his anxiety, my life simply cannot continue in the same manner. The last hellish three years of watching the love of my life deteriorate from the vibrant and wonderful man into a nasty and cold asshole. My own coming months and years cannot be spent writing behind bars of someone else’s prison, a prison I handed him the keys to but he refuses to leave.

The keys to my prison do not exist, there’s no cure, and there’s no future with happiness together as a team, the team I really counted on – but Einstein said not all things that can get counted, should be counted.

Many women must experience similarly traumatic stress events with cancer ravaging their bodies. My life’s spirits’ exhaustion shows. I burn hot on fuel called cortisol down unpaved roads, climbing hills to where I believe waits my husband only to drop 10,000 feet until I can stop myself from falling. In the uglier more humiliating moments, I feel useless and unrepentantly inferior to able bodied non-disabled women. People say, “just move out!”

If it were only so easy.

The energy, money, and help (none of which I have by the way) moving takes and the emotional toll of the move itself and consider just the breakup – could shave years from my already shortened life. Yes, I do need to reconsider my options. Unfortunately, I’m unable to work much ouutside of my home and if I have any of my own money I don’t qualify for Medicare. In our great country, one must live far below the poverty line to become eligible to receive medical insurance to cover the incredibly high costs of living in a body full of metastatic breast cancer.

I’m watching my life expire, while my love lives imprisoned by something preventable and completely unwarranted since the keys lay in his reach. I imagine what the feelings of excitement of embarking on a new future, unladened by the heaviness of a partner with depression would feel like. However, given the genuine sadness, memories of pain and ugliness and tears combined with my MBC, and my heart and soul feel nothing even close to free. It’s so unfortunate my new direction will bring only lonely, empty, impoverished days and sleepless nights.

It’s as though his depression, rather then a hug and an apology, will be my runner up prize when it comes time to hit the road. I don’t want this new life, but I cannot stay in this one either. For three years I fought to try to help him. And now I cannot help him any longer. If you’d known us before you’d know why I struggled for so long to try and take care of him at the risk and loss in years of my own health.

What the fuck is life without love? What is life without purpose? What does it feel like to truly live alone with pain? How do I go forth into a life without anyone’s name to put on my advance directive? There’s no one left I can trust to see out my end wishes. No one who I can trust to speak for me when I cannot. Everyone’s gone – dead or left when cancer entered my bloodstream. Never did it occur to me that I’d become this lost so late in the game, but My Love is gone. He is not going to come back to me. I mourne him as he was and don’t know this person who says ugly horrible things and teases me with hope of his wellness and then maligns his state of mental health like a monster from an old movie in front of me.

It’s torture. He believes I am having him go to these treatments to have his brain scrambled like eggs. Yet rTMS was incrementally helping him. Now in his refusal to continue he’s just cruel and it makes me wonder what I did to deserve this horrible life. You’d think – why would anyone do this and choose to hurt someone and himself? How egotistical can one be?

You’ll have to ask him. He may indeed become my last love and now my lost life. Indeed, the friend was electric, but he chose to leave its tapping on his door unanswered and thus, unbeneficial. If life as I hoped truly is over, where to from here?

Film Noir Femme

Energy unbound,
An unsound love.
They called the inspector,
Who wrote his directives.
Sign my motion in your hands,
Look towards the night forget the plans,
Finally release the rabbits and scare,
A negative release, a positive flare.
The night stood arm in arm with such charm!
Giggling, she sweeps the ground burying the bones,
She looks down at his pigeon toes,
Mamma with a pursed lip bit red, not those,
Please. Not those.

Without a tear did the universe ever hear,
Her lips or the purple arm complaints.
The vast morass now drinks, thirsty for misery.
In motels taped off rooms, bordering next door
Arguments. After a secret reveals the time,
Slip into dark circles and sweep away at the flashing LED, 12:01.
At last the key to our lover’s madness, her slight wrists pump arteries under glass turreted copters..
Everything once, now again somewhere.
Nothing gained or ever lost –
While you spent your time wiping tears.
That black spot came with a particularly indecent cost –
And the prize for discovering light,
Two days adrift.

Yep, it’s all in a night, miss,
All in a night. In my pupils’ books I register dawn’s coriander,
Walk in dragging this dead philanderer,
Up a plank and cutting by laughs, the ropes.
Free now! Swan dives, then she elopes.
Winded the joke ended and punched her mind,
Funny with twisted hands in lines maligned
And the black hole answered her in kind,
With laughter as sinister as the noise of the predawn Tom,
Clowns in dark studios made up, dust and white paint,
The pain in your veins, heat aghast, you faint.
The hole swallows her body and soul.

Younger and infinite, a girl, knee high to the universe we know,
Shows us her freak show worthy flaw. In awe, we forget to check the clock. Hurry, please.
My love never reigned us in, you must feel something, still.
(In relative terms, this time narrowly missing our drop point.)
If we pretend to see, to know, to bite a fruit and fall.
Algorithmic syncopated circus acts,
And drums tight as a father’s facts beat out the rhythm:
gone gone gone gone gone.

Plan 9 From Inner Space or The Week from the Black Lagoon

Hell is empty and all the devils are here.
The Tempest by W. Shakespeare

Some weeks just suck out loud. Seven days when you swerve from lane to lane avoiding wrecks. Alone in your car, you sing along to a song you love, of your own aural detriment and the unlucky winner who pulled up next to you at the long light lottery. This week’s highlights, with a stressed set of vocal cords, included both Homeward Bound by Simon and Garfunkel and Somebody to Love by Queen. Tonight brought on an earthworm of West End Girls by the Pet Shop Boys. Perhaps once I return to the century we find ourselves led through by accidentally drawing a trump card, I may find music worth my ears and my brain time.

Yeah, the kind of week when you wish for humanity to take a piss up a rope. Then magically, someone comes along and makes your heart warmly humble. Gives you a case of the humilities. A roaring, hair blowing, house flooding giant tsunami of love in your heart. For anyone who wants some. And some folks, too, who don’t seem to want any of your kind of love at all. Screw them, not literally of course unless you really want to, they’re getting loved by you irrespective of attitudinal tapeworms.

There’s people in our midst who quietly and with a dignified grace sweep beautifully and lovingly for no apparent reason into your world. They may stay for a week, a month or maybe a few months or a year. They cannot remain a permanent fixture physically in your life, but change you spiritually and create space for you to accept ideas and postulations that contemplation in the past would bring up your lunch.

Imagine with me of a time when cancer finds you and you find it eventually at any stage – doesn’t really matter. Just as the people who come in and out of your life during your cancer journey: they find you and you find them. Two specific people came into my life recently, each of them so different yet perhaps not so different if you didn’t know what they looked like or what either of them do or did for a living. We measure people by what they do in our culture, rather than the quality of the spirit they bring to our physical world – with a voice that roars quietly in your ears, almost miraculously, when they’re not in your presence. No discussions about why it’s so fucking miraculous that we’re even reading and writing to one another or having heated or gentle discussions together and how unbelievably unlikely it is that we’re here at all…they embody why it’s just so cool to be human.

The first person to find me lost on my own verbose path and take my and pull me gently in a healthier direction, began as a business relationship and grew into a friendship. I am 52 she is a damned fine looking woman in her early 70s with the most piercing green apple eyes I’ve ever seen. I love her as a friend can love a friend when you know how unlikely the friendship but how likely once you dig a layer under the other persons skin and vice versa. She’s gotten me to my current psychologist. My psychologist has had breast cancer, and I’ve met with her twice in seven days and again Monday next week. She along with my green apple wise woman gave me a gift of female co-thinkers to help me through the tunnel I am currently in and not letting me drift into the walls of the tunnel as I find the other side with my speedometer going just a tad slower. No wrecks.

The other signs his email this way:
Peace in peculiar times.
And with this quote:
“While waiting for the other shoe to drop, hop around on the one you’re wearing.”

I find along side the road I’m currently on in my life with cancer, not waste and detritus, but people. Not hitchhikers, but people waving to me and telling me to keep going and not to stop since its rather unnecessary.

The second person has a plan in this life of mine but more on him later. Just know that he’s a cat of many lives and doesn’t stop to lick any wounds. He simply stretches and stretches on with life leaving behind the ugly, the illness, the angry, the negative, and the weight of the past. He’s lighter than air. I hope when I meet him in person I can breath a bit easier knowing that we are not in this journey of ours alone and that other humans in this consciousness came before us to allow free passage of our own loves and lives from one to another and that’s what it’s all about.

Peace out.
Next week should provide for better spiritual happiness and music to tap my foot to the beat of in order to move ahead one more space on the board.

I hear Closer to the Heart by Rush and leave you with this song for by which you may contemplate your navel lint.

Closer to the Heart

Maps and Legends

My epic signed by blue,
Pencils edited, erased.
Pages loosened and flew,
White winged birds sung,
Tightened claws bound to lines,
Snap and fly to inner space.

Shortened pagination,
Politely taken wayward
A palace ‘tross seaward.
My imagination skips,
Hissing gently, a light kiss,
Skip the lights aquatic,
Swan dive into the record.
Hole round against,
Metal and rusted center,
End over a feather,
A light in a jet stream.

Dripping ink and rain,
The last page set,
Down in a spring,
Slowly changing everything.
My books marked still,
On page one. Your laughter,
Soaked and heavy with disaster,
Sitting in the oak’s shade,
You kiss my nose and mark,
With cooled breasts. Wonderful
Of you. A park and your hand,
Reaches to shade your face,
As we read from the book
Of the dead and avoided,
The looks of their eyes,
Ashsmed and exploited.
Slaves and a haurcut.

You forgot.
Cash piles stashes,
Ashtrays and snug graves.
We all fall down.
The ground grows smaller,
As I pass the tree line,
Bangs on the Earth,
Becoming her daughter.
Funny to stand today,
Eclipsing the sun,
Looking down?
Avoiding blind faith,
Pin hole in a box,
Gentle and round.
Protect the last epoch,
Hidden in a rainstorm.
Injustice of ghost town.
What substance, space
She left us, just as wraith.

Why I Love Vintage

https://www.etsy.com/listing/500887842/vintage-rhinestone-encrusted-button-with

Buttons – it started with buttons. Vintage and old buttons to be precise. Hundreds became thousands. My theory: button mitosis. The rhinestone 1950s button you see above, one of the latest acquisitions, stands alone as a thought prototype come true by a nameless, faceless designer. I look at them as though I can save enough to button up my life. Like Eliot used coffee spoons, I measure my time in buttons.

Eclipse

Birth so luminous!
Each soul’s page,
Covers the last.
Closed together,

Bound by death.

The Island of the Misfit Toys

Metastatic cancer feels a little to me as though I am standing along with the rest of our group on a lonely island in the middle of an unknown world, called the Island of Misfit Toys. This fictitious land of Yukon Cornelius, of Rudolf one red nosed (drunk?) reindeer who guided Santa that cold Christmas night, and of Dennis who wants to become a dentist.  By the way, a study on social cognition and a desire to maintain positive feelings about the self,  Dennis and Denise represented a higher proportion suggested that people disproportionately choose careers whose labels resemble their names (e.g., people named Dennis or Denise are overrepresented among dentists) And of our own self images, they’re not influenced by much positive representations.

Especially those of us at stage IV, the stage about which no one wants to know much about at all.  We, the misfit metastats, don’t quite measure up to Santa’s ultra high standards. Therefore, we become like the toys left behind on Christmas Eve as we watch bleary-eyed and all shivering from the cold, waving goodbye to the rear end of a sleigh overflowing with gifts for everyone else. We wave to Santa Clause and his big fat ass and to eight wagging reindeer tails.  We wave as we stand alongside Mrs. Clause, who holds a glass of wine and smiles knowingly.

Betty Clause – I imagine this is her first name I don’t know how why – Betty’s thoughts travel inside the Clause residence,  followed by her plump reubenesque body into a frankincense infused, well deserved, hot and steamy bubble bath. Then, as she sinks into the temperature perfect water, I hear her sobbing tears of joy. The kind of joy we’ve all felt after a long hard job well done. She smiles and weeps at the lack of noise and and a home devoid of all the stress. Now the elves have packed up and went away until next winter, and Dennis has gone to dental academy, and all the reindeer shits been scooped up, and Betty gets a little girl time to herself! Finally!

Sadly, unlike Betty Clause, we won’t see jolly Saint Nick coming back after a magical night of delivering toys to deserving children. Instead we must look to break out of the loneliness and outside of a life without someone to cuddle our stuffed bodies covered in matted faux fur, as I feel sometimes as though I were a used up stuffed bear waiting to be yanked off the floor by my arm and taken under someone’s elbow.  The elbow of a boy who used to love me more than any other toy in the box.

I feel the compression that too much alone time can cause, like an astronaut without a helmet, the ring around his neck empty leaving him gasping purple in an airless infinite darkness for a breath of nonexistent oxygen.  Perhaps, and more apropos, metastatic breast cancer survivors represent a horde of Barbie dolls, freakish perverted proportions, and missing one or both of her once disproportionately large nipple-less breasts. Our torsos wrapped in gauze, we hobble back to the warmth of the factory, now quiet after the seasonal rush.

What I do know of cancer’s tonnage dump of loneliness is this: it’s a single perfectly understood universal gestalt, which  includes the undeniable, unbearable heaviness of spending our days just ghostly and a turn a whiter shade of pale. Once death becomes a friend we join the universe’s energy again and mix it up. Imagine if you can, a rave that ends only when your soul, composed of the imperishable neurological energy created by our brains during our momentary, slippery lifetime.  Yet we came up short on everything truly important until it’s too late. Until we found out we had an expiry stamped on our ass that’s not easy to read even under the best light and with the best pair of medical glasses that the cancer industry has loosed on the oncologists who work to keep us alive longer.

But we’re stuck here alone without those who loved our better selves, alone with our thoughts and dreams, alone with our entire life erased from the great whiteboard in the sky and waiting to be written over by us, preferably soon and preferably with a happy ending to our stories.

Yes, I ramble. But I hope you get the point.  The imperfect beings made more imperfect by metastatic cancer of any kind aren’t the kinds of people who you’re gonna pop by and see, the guilt ridden phone call you know you should make but haven’t and shit, the longer you wait, the more difficult that call becomes. We the misfit toys don’t care when you call, when you stop by, what you DO NOT bring, what you want to talk about or do not want to discuss.  As I’ve stated in earlier posts, I don’t want to talk about cancer either.  So come by, call, write, I’m still me.  I’m still thinking about the Columbia University findings regarding how people make important life decisions on unconscious tags for better or for worse.  We make our decisions so irrationally, it seems, that there must be some reason, something we don’t realize.  Here’s the well stated conclusion of this very interesting paper on Attitudes and Social Cognition.

The findings of this report stand in sharp contrast to many of the assumptions that both scientists and lay people have typically made about major life decisions. For example, these findings raise serious questions about whether people are fully in control of their own behavior. Nonetheless, the idea that people make major life decisions on the basis of unconscious decision rules does not necessarily mean that people are irrational. Instead, the specific form of implicit egotism identified in this research may represent an unconscious route through which people create social worlds that typically make them feel good.

Such speculations aside, the most important implications of these studies may be the most obvious: there may be much more in a name than most people realize. To paraphrase an anonymous author of tongue twisters, this research offers some new insights into why some people might find it more satisfying than others to sell seashells by the seashore. Why do we seem to make so many important life decisions based on unconscious emotional responses? I suppose we truly trust our guts to decide what makes us happy? Is it the same reasoning That causes so many more people with the names Denise and Dennis becomd dentists than those named Bill or Belinda?

I assume if there were more personally uplifting stories of some of us who were doing well, pictures of us with hair not just with our turban or wig slightly off kilter on our heads, or emaciated from the ravages of chemotherapy with puffy grey circles like rain clouds under our eyes, then maybe the loneliness of cancer wouldn’t be so deep and dark.  Maybe so many husbands and partners wouldn’t become depressed or even leave.  Maybe we would meet more people like ourselves instead of hiding away to stay at home.  The wounds deepen with every passing month, albeit invisible wounds. The kind that even Santa Clause can’t put on his list as us being naughty or nice this year.

The findings of this report stand in sharp contrast to many of the assumptions that both scientists and lay people have typically made about major life decisions. For example, these findings raise serious questions about whether people are fully in control of their own behavior. Nonetheless, the idea that people make major life decisions on the basis of unconscious decision rules does not necessarily mean that people are irrational. Instead, the specific form of implicit egotism identified in this research may represent an unconscious route through which people create social worlds that typically make them feel good. Such speculations aside, the most important implications of these studies may be the most obvious: there may be much more in a name than most people realize.

To paraphrase an anonymous author of tongue twisters, this research offers some new insights into why some people might find it more satisfying than others to sell seashells by the seashore.

Speaking words of wisdom…