Tag: metastatic cancer

Florida, State Your Name

You carry our secrets whispered into cardboard boxes tied tight with candycane twine
(That kind you find in old-time kosher bakeries.)
Tall cakes topped with buttercream flowers in new-fatigue green and suburban-Mustang blue whose
Stemless petals rise above yellow spongey layers with strawberries.
Pure as curbside snow. Pure as little girls with pinch pink cheeks.
Too early for my birthday the trail of a mistake runs upstairs from cheap paper doilies.
Pin striped suit coat and sea glass blue shirttails waving gooodbye, or hello,
(I never knew the difference.)
My hair twisted into a gilded fist as you push my resistance down,
Down into the drowned warped boards.
Raising my right hand, I swear you found a pushover:
A raggedy doll tape and bubble gum, of bare burlap, plaid, and buttons, of red yarn
Covering my torn skin where I stitch myself up and over
(And over to hold myself in again.)
A stray calico cat sits in the window right above your shoulder, startled by your loud heart.
I can still hear you slapping your thigh and then,
Distant laughter cries at your day-old jokes jokes and overtold stories.
Your hysterical, foul, scorn defers a look at me.
I hated you for that minute, then carrying on again I forget you already told me.

My face looks tired, uncooked, undone.
While white hot light sheds the palmetto scrub
Covering the non-natives invading our country- bright boisterously green parrots.
Which fly in on an uncommon flight schedule,
Catching a torrent of wind the turkey vultures wind into a tornado
Turning up higher and faster into the late afternoon rain.
Here, every shower comes in on time right at four.
Bursting open ladies with umbrellas, with daisy dresses, tulip capris, white rose tanks,
Waltzing by the front porch screen doors squeaking,
Slippery dimpled thighs sing together,
All sweet, easy, glide by leaving their perfume behind.
Then zipped into black patent leather hand bags powders, compacts,
Glossy rippled heat waves us in on a 45 degree right angle sun ray.
Show up the hidden mildewed sinews of ductwork,
And the hum of air conditioners masking our words.
Slowly dripping outside busy windows pelted by huge mosquitoes,
Or rain?
(Probably rain cries outside)
Only two minutes, like soft boiled eggs on timers,
Now done cooking. Her eyelashes, false
Newly bred widows sit with spidery eyes,
Single fingers silently making reservations for you.
They reapply the glue, so unkind, that damned humidity.

Never, never, never give up.*

Christmas 2017

In the spirit of enjoying my newly found power of living in the now, and not over thinking my tasks or decisions too much, I find a listing worthy of our time and  instead of sitting home asking what to do and not doing much together, we decide it may be fun to head out to see a film. We drop our imaginary swords after a weekend of tension and melancholy leading up to today, Christmas Day.  After purchasing our tickets online, we slipped out of the garage with plenty of time to spare and without the usual tension causing any arguments. So without a hitch, we went out with a playful, familiar affection for one another.

I didn’t allow myself to over think what needed doing, and it all got done. I found myself grateful and comfortable as we drove the quiet holiday road, listening to Mozart. I am more home focused  these days as my current course of chemotherapy has caused my blood cell counts to decline. Compounding this, The C suffers from depression thats holds him locked in our house nearly  every day, sleeping more than he’s awake.

But tonight once he finished dressing, he smelled clean and crisp and looked really handsome and I told him so.  With patience he waited for me downstairs while I took a deliciously steamy hot shower, one of life’s little delicacies and a major privilege of living in a first world country. I dressed up a little bit for him, but for myself mostly.  As someone with gender altering breast cancer, I recommend it highly. If you don’t really feel like getting out into the public, dressing up and putting on a little makeup can help your inside rise to the occasion outside.  It doesn’t hurt, whether you have hair or not, gained or lost weight, became flat chested or had reconstruction, try it. I find needed confidence and The C says, babe, you look really hot. Grin. Blush. He playfully, but gently so as not to mar my transluscent skin, pinches my ass and impish grins and says, what? as I squeal “oh, don’t!” And we get moving to the film.

The Darkest Hour starring Gary Oldman, who by the way OWNED the role of Churchill, engaged us from beginning to closing credits. Big new bonus feature, there’s now reserved seating recliners to kick back and put your feet up in, leather ones, too.  My inner marketeer assumes this phenomenon arose from a study about what makes people stay home instead of going to the theater to see a film. My conjecture: the study found people dreaded mortgage size snack bills and horribly unsanitary cloth-covered, ass numbing seating, originally designed for the Spanish Inquisition’s torture chambers. I can just see the PowerPoint presentation designed to sell the plush, button operated gluteus maxims warming cuddle machines to the theater chains’ operations management. (PowerPoint brain IS akin to chemo brain. I suffered both and the similarities are uncanny.)

Anyway,  The Darkest Hour covers Winston Churchill’s first month to his wartime appointed Prime Ministership governing Great Britain. He’s refused to lead his nation into a seriously precarious position of becoming like France in an act tantamount to surrender. Indeed, he would have accepted this fate had he allowed former PM and war cabinet member Chamberlain’s cowardly and first choice for the prime ministership, Lord Havilland to drive a country into a state that neither man was strong enough to lead. It turns out Chamberlain had only months to live having been diagnosed with cancer.  Me. Havilland drove his agenda as well as the King’s and persuaded Churchill to allow a seat at a table for one, at the so-called peace treaty with Hitler via Mussolini. History would be changed forever, and for not only Great Britain, but for all of Europe. There’s a surprise mini arc in the action that I’ll not give away but you’ll know why if you see the film.

Prime Minister Mr. Churchill, ravaged by lack of sleep and terrible indecision, finds himself unable to conjure the words for a speech he must deliver to the House of Commons regarding the decision to fight or to act with cowardice and surrender.  In an impulsive move, he leaves his chauffeured car running into the station and takes a train, something he’s never done, to Westminster and goes, so to speak underground. There he finds strength through listening to people’s emotional cries of “victory!” in the train car. Men and women who rightly are stunned by the presence of the PM and who represent a cross section of his constituency. Churchill initially went underground looking for a match to light his cigar, but emerged into the rainy day not only with the light for his oral fixation secured but enlightenment for his immanent oration. He finds answers he needs in that moment without over thinking his decision, in the hearts and minds of his beloved nation’s people.

I won’t spoil the ending, but we all know how the US for five long years allowed the punishing of our strongest world ally. Roosevelt got the blinders off very late in the war. Yet Churchill gave many European people hope for a future not ruled by tyrants. Without the navy but with his inspiration his ability to launch an entire force of civilian boats, to rescue 300,000 troops – the entire British military force stranded on the coast of France – waiting for help from across the English Channel.  Those boats were not captained by soldiers, but by regular people brought together, finding strength and bravery from deep inside their hearts and souls. Such bravery exhibited on so many levels boggles the mind and I need more time to digest the strength employed by everyone involved from the King of England, to Churchill, to his wife, to his supporters, and to the boats men living up above the White Cliffs of Dover.

I get chills thinking of the scene. It’s not a film full of CGI or big blasts or comic superheroes or special effects. It’s all in a short time with small spaces containing big exhibits of strength and bravery. Churchill knew that bravery comes not only from a wellspring inside, but from the community with whom we share a common connection. In his case the whole of Britain, in my case a small subset of the blogosphere. 

I know I represent a small subset who communicate via blogs. Here I find the brave and the vulnerable and in turn, this frees me to shed my own fears.  When someone stumbles into a post or poem of mine, and finds my “confessions” supportive,  the support I need comes easily.

At the beginning of this circuitous confessional, I found strong brave ties to a man I never knew. My relatives emigrated to the United States via Ellis Island in New York.  I am here because my great grandparents had the forethought to safely move our families out of the USSR, away from the tyranny that would slaughter Jews by the hundreds of thousands. Because of their courage I never will know  the atrocities of a true bloody ground fought war on a grand scale or the ensuing post traumatic stress disorder of an entire nation.

But we all fight our own wars don’t we?

I feel like my body is a country, my cancer, Stalin and  Hitler (Shitler?), the ground troops like my immune system, and my spirit like Churchill himself. Never, never, never give up. Victory is the only option, cried Churchill to the House of Commons that afternoon. From that scene on a wide screen was another brave heart who imbued in my spirit the strength of the lion himself long gone to find the One universal truth. He showed us the wisdom to listen, not just orate beautiful monologues that drown out the strength of other men and women, be they big public figures or new mothers with babies or blue-collar bricklayers from London.

Or even the small voice of a blogger in Silicon Valley, echoing words into the great web of the unknown. Too much drama? Nah, #fuckcancer.

Sloop John B. aka Let Me Go Home

So hoist up the John B’s sail
See how the main sail sets
Call for the Captain ashore
Let me go home, let me go home
I want to go home
Well I feel so broke up
I want to go home
Hoist up the John-b sail.
See how the main sail sets,

I groan as I depart outrunning the Smurf blue scrubs-clad wheelchair engineer who, I’m totally convinced, wants only to embarrass me with one last spin round the rotunda of Stanford’s gynormous older hospital (a new one is on the way, thankfully). Leaving behind me a dishearteningly BORING stay in Stanford’s F-wing. Wow, ever so apropos of the oncology floor, the F-uck it wing, the F-ucking cancer wing. Let me never ever go into a hospital again.

Dehumanized. Depersonalized. Muted. Turned into a brainless pajama bag of pain and shit. Exasperated, exhausted annoyed. Telling the same boring story of how I arrived, my trip through the ER, the amount of fluid siphoned out of my abdomen, whether or not I went poopy in the toilet, as well as my level of discomfort. All told to a supporting cast in this theater of the absurd. All except for my angel in uniform, Stacey, who actually sees me as human and spending more than one shift with me, even requesting to take my bed at assignment time. We talked about everything and nothing, perfumes, children, cancer, other nurses, hospital stories. Stacey stopped by when she wasn’t obligated to do so, and see how I was feeling, to let me know she’d ordered the Flower Bomb perfume I sprayed on her wrists a few days earlier to make sure she’d like it enough to plunk down hard earned cash for it. Like a friend might, she came by my room when she’d heard my ticket outta there had been stamped, to say goodbye. Stacey remained my friend in the hospital for six boring shifts and her big smile, bounty of hair and breasts, and her need to talk to someone who could just ask questions and listen to her.

Basically, and aside from Stacey, at any given time, one might become confused permanently by a troupe of medical professionals, including:

Two doctors, one of whom visited me for exactly three minutes and accidentally ran into me during one of four daily 30 minute cross hospital walks,
Seven distinct nurses
Three nurse practitioners
Two social workers
One psychologist
One spiritual leader of the Rabbinical kind

The same questions day in day out, night after sleepless night…your level of pain, 0-10, 10 being the highest. Where? Which pain? It’s all over and all different. I learned to pantomime and point to my pain, showing anyone who buys a ticket to my freak show behind the curtain. No one likes to stay overnight in a hospital let alone six fabulous nights at the Palo Alto Stanford Hospital Resort and Country Club. Where sleep comes only to those who sleep with the fish, there’s no relationship between yourself and a concept called privacy.

I’m not contagious, therefore my roommates become a series of Spanish speaking, translator required, entire family toting, new treatment guinea pigs under tight scrutiny from the nurses who all ignore me. I’m not part of the program. And but the way why the translators who clearly were trained in translation skills raise their voices with each translated word to the supposed Spanish only speaking individual in the next bed in the room, is beyond my comprehension. I hear both of the roommates, between whom I get one 36 hour reprieve from holding my farts due to close proximity of their family and our shared bathroom.

You want to define understatement? My visible excitement level peaking higher than my pain level for the first time in weeks as I jumped at the first chance to “give up” my bed and an opportunity manage my symptoms at home until my next procedure. Emphatically and resoundingly, please please please let me go home – like The Beach Boys song. For the record, the break in self care and trying to pull my partner out of bed (generally so I could try it out alone for a few hours to recuperate) I needed more than I realized. I fully enjoyed people focused on all of my physical needs for a little while. Pathetic, right?

Maybe so, but I’m home. I got home a week ago yesterday. Simon, my cat-son, truly gave me the what for when I got in, ignoring me at first, but unable to help his nose, which had a mind of its own, from sniffing down my belongings and then coming over to sniff me. Persuaded by sight and scent he crawled into my lap and purred and I rubbed by now-damp eyes in his soft brown fur, and said, Mommy’s home, baby, mommy’s home.

Now that’s pathetic.

#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 🖖🏼

Canferatu, The Monster at My Door

WARNING: I’m going to bitch a little. Maybe a lot. I admit, I’m in pain of several kinds and with facing #chemotherapy again, and the evacuation of a total of 10 liters of ascites  fluid from my abdomen adding 20lbs to my stomach and causing my body not only discomfort but all kinds of fun side effects including severe constipation. Ascites meanders through the abdominal cavities, which fill up with the remains of a body’s lubrication in the peritoneum, leaving less room for the organs including the intestines. See the container of yellowish fluid above? That’s one of four two-liter bottles removed from my big round belly three weeks ago. Additionally, I had four and a half more liters removed yesterday.

My body had enough room for food for first time in three weeks, long past a bad case of being “hangry” (hungry-angry). My prescious neighbor and dear friend Lisa, made me simple soup of chicken broth and won tons. The hunger with which I ate it rivaled Henry VIII mauling a turkey leg as he’s so often portrayed. I’m feeling like total shit right now, no pun intended. I feel physically and emotionally wrung out. I appreciate your patience and please know I do not mean to condescend: I’m just kick off my big girl shoes and put on my fuzzy slippers and whine.

#Stage4cancer brings to mind a place a B movie might portray, as you’ve probably noted in some of my other pity party posts. In my latest film, my 1960s MST3K worthy vampire hell ride, Canferatu. Canferatu is an inescapable, slow yet fast paced vampiric monster approaching magically everywhere I turn. Chills run down my spine as I hear the ugly abhorrent thing rapping, scraping on my door. I realize it’s only the wind picking up, frightening me as a tree branch runs its claws along the windows of my imagination,

Am I dreaming in color of the darkest places my consciousness has to offer on tonight’s mind menu? No. No horror film, no inadvertent wind blown tree debris, and definitely not a B movie. Reality sets in at some point between, “are you fucking kidding me?” and the desert test of an atom bomb blowing up underground and taking out a life I once knew. A life defined. One with possibilities of working full time, seeing friends, hearing from family, trips and travel, and a whole lotta love. As unsalvageable though your existence may feel at this very moment – if you don’t have stage 4 cancer consider all systems pretty good, if not fantastic!

I feel awful when I can’t feel much empathy for people with controllable, curable diseases who do nothing to seek out readily available medical attention. Even when the hands of help reach out to them to provide everything they require to find a healthy self, they choose to lie down in puddles of self created doom and pity. As I approach the diagnosis’ three year mark at stage four, I become more hardened to their plights. An empath, I know that their pain is very real pain. I know it’s as real as the device you’re reading my post on, yet I see possibility and hope. Depression and anxiety sufferers see darkness visible. As I scratch and scrape to stay alive and keep Canferatu from sucking me dry, my partner has the audacity to pull at my heels and bring me tumbling down with him into the black box he lives in day after day. And night after night without so much as a kiss or a hug anymore.

It all feels so very unfair. I want to make it all just stop because this simply cannot be real. Like Canferatu. What kind of unique inequity caused these circumstances in which I face my end of life head on while he faces his future head down? For three solid years, I represent the root cause of every single one of his problems. These days I’m overly embarrassed to even suggest sexuality as a topic to discuss. Who would embark on a talk to let him know how I don’t want my end of days bereft of human touch?

When my psyche owns up to having grace enough to know when to get off this crazy thing, I will, but I love him enough to have hope and to stay.

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. Coupling up begins, but never ends, with sex. Love in all its permutations requires an orchestration of high and low and mid range notes all syncopated in time, day in and day out. However, there’s a time not too far away when the cortisol highway in my body caused by the stress of this heinous cloud raining down on us both will end, as highways all must. I’ll have to leave him sitting here alone. If he refuses to seek help he so desperately needs much longer, I’ll miss him, and I wonder if that heartbreak is enough to cause a whole new cortisol highway to open up, allowing my cancer to take me over and cause a horrible, unintended wreck.

Does cancer extract my heart from my body for study by science and remain in a clear beaker like the one holding the ascites on some dusty shelf behind an outdated computer book from 1999? My loneliness and frustration are at an all time high. Can you tell? No, I have nothing he can gain from and to his mind, all he does is give and I cannot bring anything worthwhile to the relationship anymore, so why don’t I stop fucking up a good thing and just shut up?

Okay.

Friendship, Cancer, and The Jokers

“We suffer more often in imagination than in reality” – Seneca

On my 52nd birthday my husband comedically quipped, “From her on baby you’re as old as a joker.” Why? “Because your age is equivalent of the number of cards in a deck.”

If you look in a card box after retrieving the deck of 52 necessary for the game you have in mind, such as solitaire, a pair of Jokers and the deck’s informational card sit, left over. I am the leftover — and now I’m entering the stage of life, the unwanted, the leftovers. I am in at the dawning of the age of the Joker.

Have a listen to the Australian band Wolfmother’s song, “Joker and the Thief.” It’s very catchy and if you like that song and haven’t had the pleasure of listening to Wolfmother their eponymous first album is great and has another song I like quite a lot called “Woman.” A three piece band, their sound is that of a love child, borne of Spinal Tap and Jack White. Here’s a link for The Joker and the Thief on YouTube:

https://www.youtube.com/watch?v=8lkPfgzR6Hw

“Can you see the joker flying over / as she’s standing in a field of clover.” Great visual for song lyrics, dreamlike and yet ominous, a girl whose innocence is her honor, and the bringer of death the Joker poised to take her away. At any rate, clover as I visualize it carpets the fields of Scotland and of Holland. Furthermore, when you find one with a fourth leaf, rather than the common 5 leaf species, it’s considered very very lucky. The green carpeted field conjures up the impression of a girl rolling in a field of money without a care in the world. The Joker takes away that innocence and invincibility – I’m no longer a girl anymore.

I’m now firmly planted on the other side of 50 years old – more than half a century on this third orbital from the dying star in our solar system. Remember when youth outweighed the cataclysmic teenage ubermensch-ism? Remember when 50 seemed extraordinarily old? 50+ years to a teenager seems so ancient. God, like, you know Stonehenge or the Pyramids at Giza. Rude punks, my other mohawk prickly friends and I would elbow one another and smirk towards those who crossed the half century line and to any person over 50: “wow that’s so old.” So, turning some kind of sharp corner, I’m now the joker in the pack with the deck of cards. The cards that don’t matter and stay in the box, and no one cares if the jokers get lost.

I suppose if given the choice to see what I’d become now at this age, I think I’d like who I am and what I accomplished. Hopefully, you can look at yourself now, and know having all of those years to look back upon and smile with happiness in the warmth of good memories, or with bad decisions and hurt and sometimes embarrassment, the chill of regret comes and goes in a fleeting moment. Sometimes, we get the chance to undo a past regret. The opportunities come along infrequently, so try to recognize one when you happen upon it. I think it’s a strange enough concept, given the premise that you make your fate and take what’s in front of you – and make yourself better, create an improvement for your future self to incorporate. Use the good in front of you to drive your decisions.

Allow me to illustrate this phenomena with a personal example. About three years ago, I felt awful. However, I’d just gotten through a bunch of personal dramas — my dad died, my cat almost died, and a person who was a “friend” did something to cause enough stress to kill a normal human being. That was also when my husband tumbled deep into the dark well of depression.

Exactly thee months into 2015 I was really feeling awful and after watching me curl up into a ball on the bed, hands reaching and crying in absolutely the worst pain I’d ever physically felt in my life, he said that’s it we’re headed to the ER. We all thought it was food poisoning. Wrong diagnosis. There were 7.5 liters of ascetic fluid that built up in my abdominal cavity. If you’re unfamiliar with how cancer travels from one place to another in the body, they can only travel via your blood stream or your lymphatic system. When cancer goes rogue through the blood stream, it goes through the liver which goes into overdrive and other extreme chemical reactions happen. I’ll skip the details, but the net effect causes a fluid to build up, and floating metastatic cancer cells coagulate without real purpose like Mercury in an old anal thermometer. The silver beads attracted to one another and make larger more expansive ones that light up on a CT scan like tiny oil slicks.

Hey, congratulations you’ve got stage IV cancer of the breast and bone lesions. Well, that explains why I wasn’t feeling so well. I recall receiving an email right before that most horrible week from a good friend and the email required my immediate attention. My attention won’t relate to anything at all back then when I had the diagnosis come down on me so hard I didn’t know when or where I was in the scheme of life. I don’t think I even opened email from back then yet. It sits, unread in my inbox – all of it.

I lost the chance then at giving my hand to hold for a moment if she chose to pick it up so she could feel even slightly better – because I know intimately now tragedy causes loneliness. Let me say though, as a Joker I feel magically imbued with some preternatural ability to move around the here and now without being seen. Everywhere I go, I am not needed especially, yet I am empowered by my invisibility and the wisdom that improves with age. My wisdom tells me to go see her – call her – send flowers. DO ANYTHING to apologize that my physical state hasn’t allowed me to give her the attention then she probably didn’t need but I should have given her.

The Joker flies over and takes innocence like gasoline and soars over more clover until I find the lucky one, the one with four leaves. I am the luckiest Joker alive. So, to my friend who sent me a birthday card, now that the fireworks of the fourth are over I want to somehow tell her I love her and I think of her very often. I do hope she’s forgiven my remiss, having found out about my situation coinciding with her life’s loss. I hope so anyway.

She’s one of the good people I’m blessed in my life to know. The four leaf clovers? I now realize they’re the people in your life who I should never let go of and never give up on – regardless of the situation. They don’t care about a miscue. They’re too deep to be so shallow. They care about me and send the most positive thoughts they can.

Thank you my dear clover in the hills, I hope to see you very soon.

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.

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.

The Antonym for Pain

Quotes about love. Google it. Many astute current and historical figures have quotes basically translated to – a life without love is not a life at all. I think Shakespeare said it’s better to have loved and lost than never to have loved at all. Actually I’m uncertain it Shakespeare but I’m not going to Google it. The one thing I can live without in life, in sickness, is pain. Pain, so it is said, presents itself so that you can appreciate the good times, the happiness…so you can appreciate. Appreciation of not having pain? Appreciation of what exactly?

I definitely appreciate those times in my life where I didn’t feel any pain at all in the morning. Smiling and eager, a hopped out of bed when as a young girl; I couldn’t wait to see the gifts of constant surprises of that day lifting me up and urging me to bounce up in the morning. My mother didn’t always see my urgency that way, then again I do not recall the last time I could say my world was carefree. These days, on the cusp of 52 years old I can’t wait to go back to bed so that I can lay down my cancer thrashed bones, and rest. l rest, read, and write. Much better than doing nothing at all – just like pain and appreciation. It’s better than appreciating nothing at all. I learned a new word this morning: compathy. Coined by a statistician at the turn of the century to describe the feelings of caring or grief that occurs in a crowd of people about a sad event. Seems so apropos.

With metastatic cancer to the bones comes a pain that I cannot find a way to describe to bring you, dear reader, to feel compathy for my sadness and my loss.  The physical pain invests itself into a marriage with your consciousness as well.   There’s nothing like it that I’ve felt that’s so physically omnipotent. Imagine having hot tongs that black smiths pick up horse shoes from burning coals hacking away at your insides. After a while those areas were cancer left its mark behind or new areas where its moved to grow, the pain becomes even hotter. Fierce.  In the two years since I found out about my diagnosis, I’ve shrunk about a quarter of an inch. I’m a 6 foot tall woman so for me not being 6 feet takes away part of my identity. I was very tall as a child. I was 6 feet tall by the time it was in 10th grade at 15 years old. So from the time I was 15 until now I’ve been 6 feet tall. It’s like when you lose your hair from chemo you lose part of your identity. We’re not ourselves anymore. When a woman goes through the violence of a mastectomy and one or both of her breasts are gone something of her identity is gone. Something that identified you as female is gone.

But with bone mets no one can see what’s going on you don’t really notice that I’m a quarter of an inch shorter unless I tell you and even then it’s not very much. But think about shrinking a quarter of an inch at 51 years old. I now understand the women I see hunched over on the street hanging like bent trees on walkers. They come outside each day, if there’s no malignant weather, from the old age home next door to our townhouse. They frown in skin of painful evidence though they’re walking just a few blocks just to get some fresh air. Pushing scaffolding around their bodies thrashed over by one awful thing or another like arthritis or osteoporosis. They’re in pain most of the time I would imagine. But to be 52 and understand what the pain must feel like to be in your 80s physically seems rather untimely and unfair.

I remember my mother’s mother, my Grammy Sylvia, in her late 70s and 80s. She stood just 5 feet tall. She was very well endowed with large breasts, whereas I towered over her since I could remember. 6 feet tall and just a bit of a B cup, clearly different from my grandmother’s body type. She didn’t die from cancer. She died from sadness. In a condo in Florida she lost my poppa Bernie and lived on for 10 years after he died. But it was something she never got over. I felt compathy with her and visited with her nearly every week sometimes two or three times. For her, alone and grieving, even small aches and pains probably seemed 10 times worse than they really were.

I have my husband and the good news is he’s coming out of his depression. There are days it shows its ugly face and then it lifts, and I’m incredibly happy to see my husband again. Yet on those days the depression takes him away I learnt to really appreciate the times I have him all to myself. If you unfortunately understand the downside of this horrible disease then you know how I feel when he’s depressed. How I dread not having him around me. Not having anyone to make me laugh. Not having anyone to hold my hand to tell me a joke and to tell me “I love you.” He’s my family and the only real family I have left. If not for him I’m not sure where I would be, what I would do today or tomorrow, or where I would live, or how I would feel. It’s a vastly different life than I have now. I’ve concluded the following: I don’t think The opposite of pain is health, maybe the opposite of pain is appreciation.

You can appreciate things a whole lot more when it’s painfully difficult to get out of bed in the morning. And you can appreciate love a whole lot more when you don’t know how much longer you have to love that person. Because you know what you’re going to leave behind is in pretty. Isn’t happy. It’s not going to be good for anyone who is involved. What I hope is that I will to those who knew me an appreciation for life. And perhaps an appreciation for who I was. And perhaps even an appreciation for who they are. I hope one day my lovely man loves himself as much as I do and know that he is of the most gifted and wonderful souls the universe given to us… to me. And to the people who left my side and scattered like ants away from me when my diagnosis came down like Maxwell’s silver hammer: without Craig I would not have anyone to appreciate life with and then, like my grandmother, the pain would really become even more terribly sharp in a single instant.

I appreciate love.  Perhaps, for me,  pain’s opposite isn’t appreciation, pain’s antonym (and it’s antidote) is love.

Our Mindful Universal Family 

Days seem like weeks, minutes like days, seconds ticking like long, low faraway chimes. Once in a while we forget about measuring time and live in the moment rather than counting up to another day in the years of our conscious lifetime. Future’s unknown, yesterday’s past, and we cannot do much about those two places: where we’ve gone and where we’re going. But right now – the present – the gift of this very moment as you’re reading my post, is where you are at all times. 

But you’re never as alone nor as lonely as anyone of us who  feels ripped from our past lives by the hands of metastatic cancers.  You do not need to feel this way. I assure you. 

Try to feel your universal family using  mindfulness. Find a quiet place in which you feel safe. Focus only on the breath of now, no worries about the past and no nonsense of trying to change the future, you’ll feel all at once at ease with yourself.  Just breathe. Your breath clean and clear moves in and out of your body. Just as you release the pain with your breath you too can release the chains of the pain of the future. 

You breathe out the the sadness, the hopeless feelings that you could not express openly hidden in the silence only broken by the promise that you only know – reach out to find a hand to hold yours and insure the love and the connections aren’t lost to the continuum of the human race.  In fact, the connection and the deep love your universal family feels for you grows, strengthens, and waits for the time when our energies commingle and we all meet again.

Reading your voices brings me joy and connectedness and hope.  Lately, it seems so many posts conveyed to me a sense of helplessness.  “Helpless” describes the worst feeling possible in our situations.  However, given our current health circumstances – this sword of damocles hanging over our heads in the form of metastatic cancer. 

We feel it differently, all of us do.

No, I don’t know what it’s like to walk in your shoes, I can never totally understand why you feel the way you do. But I do know this -whatever weighs you down so low right now, I swear on my own life, it changes and will pass. The only inevitability in life is change. I was looking through old photos yesterday and realized though I’m physically different, I’ve always had the bright twinkle in my eyes that shine with presence. For a while I lost my shine,  but through mindfulness I’ve found a way to light my pilot again.

Don’t forget in the grand scheme of life, we represent a mere blip on the universal screen. Yet do not despair – we still have much to look forward to and those special people who love you. You’ll persevere – you’ll be a better person for this cancer life you must endure. If you’ve gone dark, find the energy somehow to revive the light that shone so brightly and rise above the madding crowds.

If you’re reading my words, you’re my family. My universally connected family . All of you have shined since the dawn of time. If you need it, may you find within my heart and take from me what I have to offer: safety,  humility, and strength.