Tag: cancer and marriage

One Fresh Hell, Hold the Tomatoes

Last week found me a visitor to a mental health facility, leaving each evening alone and downcast. The place just a few miles from our home, in the foothills south of the city, in an unremarkable single story building where I chose to allow supposed professional responsible human beings to rescue my ailing partner from the shackles of long term anxiety and depression. Leaving without him broke my heart and provided not a whit of relief as a few close friends hoped a “break” in the action might provide. His pained eyes looking upon my sadness as yet another judgement to come down upon me. Another multi-year term added to the #lifer tag around my neck, another blow to my remnants of hope.

All the while I possess the knowledge that I likely won’t live to see our future through to a plausibly happy conclusion. Even though this love 10 years in the making, its melodramatic script changed and the film itself in the can, spliced together and the story arc mangled under the cruel editor’s blade. The final reels go to the studio with my scenes cut and lying on the editing room floor.

I hoped for relief at the end of a long week spent alone over the course of treatment, yet no sparkle reappears in his eyes yet and his life not yet resuscitated. It takes the Zoloft about four weeks to help much. But I’m mostly alone these days. Yearning for my partner’s support and the kind of tender and caring love many of which many metastatic sisters write and blog about, I now look over at him, home in bed, and find one whose dark, inky emotions remain locked away inside his heart, like the stars behind clouds in a dark night sky. He lays there disengaged, thinking to himself about things that cause long bouts of sighing, and the simmering anger of so many men who find themselves bitten by such disorders.

Sometimes, my difficulty lies in hiding my visible outrage for being his care giver for over three years, of which this past 18 months one of the most heart wrenching trials of my life. My god – this and cancer, too? Fuck. What more can one do but look up and ask the ceiling over our bed long and winding questions about the treacherous nature of spiritual meaning, self-worth, and the relative value of a life. I then break from the sum of my existential questioning of cogito ergo… to find an email in my inbox from someone who reaches out to me to thank me. Grateful for my honest approach to my blog posts they type out a note that reminds me of why it’s worth it to know that it’s my responsibility as a wife to make a decision to help alleviate my partner’s suffering and try to revive him. To ask that his soul be returned his body.

He, too, wants only the same for me and indicates we may not stay together. For fuck’s sake — why now and you have got to be joking (the only sentences I can form without punching him in the face.) These trivialities came to him exactly how? And in what universe does he believe he lives in where this would even be okay by a substandard unintelligent alien culture of unfeeling assholes? And with that he passes wind and falls asleep and I’m left to wonder alone, naturally, what fresh hell might await me tomorrow?

Hopefully a new sandwich called “fresh hell” from the deli and no more than that.

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.

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.

Home Ode

Stop and go in snow, in traffic, mother
Of course it’s the weather, noneother.
Midwestern December seasonal jokes –
As many as there’s names for Snow in Alaska,
Outcries and inside laughter.

Generously long routes, craning to savor day’s last light,
Good behavior rewarded, we finally turn right —
Towards the porch lit arms.
They wear glowing, wicks smoking, closed farms.
White, blue, red halos dripping, wax tendrils
Waning slowly, gasping on card crowded mantles.
But for one home, at once a sudden single
Moment and no more.
Staring, sending messages,
Minding the change. Her sharp, shrill voice calls:
I’m fine, no really fine, go worry about the environment.

Gulf side store-bought guilty cinnamon sweetness,
She’s now explaining,
(No patience anymore, as though you appreciated it?)
I change. I lay my gloves, toss my driving wet scarf
In the canyon eroded onto the old twin beds.
Returning, in a few moments all slippers and robes,
Old reruns of TV, family, historical arguments
Hidden in revisions and mistakes.
Taciturn remarks about topless cars,
About wild Mustangs and scorching scars.
Carbon, dating with all four on the floor.
Eternal dark hands latch white storm doors,
Snow pushed up on lawnless grounds.
Signs, wired ice knives — shattering, creaking, pointing down
Augers the night of Damocles, whose sword flashes
Screaming in the dark: stop, go, stop and go.

Spring brings black pitch tar steaming fill and rising streams.
He’s certain of the weather, again, I know.
When Minnesota blood runs south via the mouth
Of the Mississippi River byways and embankments,
The answer spits out as ice and precipitation.
The coin fed arcade witch or gypsy — your good fortune in hand.
Our God instructs with tiny gifts of anticipation,
And I, the torch of pain as a paper angel holds her wand
I sing of shame, tuning forks, and rabbit ears.
Why it’s so plainly true, your grin widens coldly, I suppose.
As a frightening hand clocks to and back a metronome,
Heavenly-made answer saves the wost worn.
How wrong, again, or all along, again.

Weather and evening corralled the horses inside.
Our engines idled, cooled, then died.
Suddenly yet expectantly (as ice or apple pie)
Boring holes in us with collapsible eyes —
Like summer left us in an awful rush,
So the bent boys gasped
As tall awkward girls cried.

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.

Half a Block Away

There is no greater sorrow than to recall the misery in time we were happy
– Dante

A belligerent handshake, a reluctantly shared cab.
“You know where to let me out?” Your smile, a dagger,
Mouth unwrapping secrets, your sleeves full of cards.
My stomach twists into a gilded fist, so hard,
Throwing a kiss, missing me, you stagger like a park drunk.
In contretemps to your sadness beleaguered and deflected,
Reflecting my resistance on thick plexiglass between us.

Silly, futile shakers who still Tango, with tight hands I slump over your shoulder cold as a rag doll.
Ridiculous. A slipknot stitching me together, jerking me up and over.
You sit me up down here, and I slouch over a stool, nearly fainting, falling, failing.
A light switch flipped peeling myself off your back, We heard lowing cows in the beer soaked yellow fields,
So you  drive me up to the meadows.
Somewhere, the bags of nothing, value of rice flour.
White, like a spit full,of pigs playing poker.

It’s a funny to hear you laughing at jokes older than
Chicago’s elevated trains and trades slid down so torrid.
You hysterical fowl, scornful defenders of anarchy and faith stop. They take a quick look at me,
Face fell first, my cheek on the dry floorboards.
So cheaply made – she’s broken but a workhorse, so you spend less overall.
My face looks like an unbaked raw pie, a bargain.
As my eyes search in vein for a sliver of sky to take me away.
I cooked myself dry from the hot rays and heard,
“She doesn’t know. She’s not worth a dollar but some schmuck secretly paid.”
Her flesh white and the other, a pink piglet that braces itself,
She then becomes a fertile delicate lily. And no mud, no vase, no shelf, in the flesh.

Twisted into aching, she hurts on the gray cold of concrete.
Twenty-four lines back out west, a speechwriter took his holiday.
Filibuster and revolution on the kitchen floor,
Swinging doors evacuate eight, or maybe 12, but I recall the 64th.
Play it with emotion, singing a cappella of coarse.

Extract your lists. Add the new potion —
Keep it simple, no paralysis, you of weak notion.
Now how to explain your remiss?
Who laughs at love’s sanguine languishing sarcophagus,
They soon find themselves falling far down below –
Grace on a sky high alabaster precipice.

A rock feels no pain, and an island never lies…

Many of us experience isolation and walk alone in our cancer journeys. Regardless of the stage or type it's difficult and frightening, causing emotional strain and stressing the infrastructure of even our strongest relationships. My husband is in the third year of his depression. Although he’s trying, the lows and valleys run into and erase from memory the days and weeks with small glimmers of hope. He makes sure to remind me of the roof over my head but seems to have no recollection or reasonable understanding of how his depression continues to effect my health and the stressors of my 19 year old step son who lives in our home and does nothing but sleep and play video games with the door to his room shut.

He’s caused innumerable problems. After an hour he returned when I threw him out two weeks ago, with the encouragement of his own biological mother, and I feel trapped like a lab rat on a sinking ship. My pain is worse then ever and I am worse for the wear. I feel like there’s no way to find peace and air and light. I am stuck in a paradox worse than Xeno’s – staying in the current situation is de facto stressful and lonely; if I leave it’s de facto stressful and lonely. I’ve tired going out all day and keeping myself busy but I get so tired I find myself just sitting in my car sometimes wasting time and reasoning through unreasonable questions and behavior.

I've put years of my life into helping this boy. He’s spoiled and he’s not appreciative of how the foundation of a good life he’s rejected will bite him in his rear end when he gets older. Although he’s very much aware that he’s making my fight harder, it seems he does it quite purposely to create fights between my husband and I so I don’t have the veto to block his father from financing requests for undeserved expenses – he’s failed 11th grade three times now and he refuses to just do the little work to pass. I got him into the best charter school in our area and he's lied so I cannot show my face on campus but for the embarrassment.

As if this could get any worse I lost insurance for over a month and was switched to Medicare from Cal-Med -no paperwork from the government , just a call saying I could not go to the infusion center for my faslodex, xgeva, and zolodex and my appointments were cancelled until I had everything worked out. Ummm….yeah? Like this is a way to treat a 2+ year patient with a 10 year outlook?

I wonder if 10 years prognosis can make someone feel no better than a 2 year or less outlook or have a cold false smile from positive test results . Awful as it feels to say this I cannot help believing that emotions like happiness and joy cannot be a part of this life. What is my raison d'etre anyway? I cannot seem to make my husband believe I'm worth it to work at lifting the veil of his depression and stop blaming me for the natural course of time to take his son and let him find his way already. If he weren't depressed I know this kid wouldn't be here and my husband would not feel guilty if he were himself again.

But if wishes were dollars I would be very wealthy woman.

For whatever reason there is – biological or sociological or psychological – the stepmother reminds everyone of a failed marriage, a failed mother, a failed family. The new family units popping up everywhere are the norm now, not the exception. I think that some steps are better equipped than some biological parents to rear children, not to say a kid doesn’t need their parents somewhat like comparing that situation to an adoption. Not in my case. However, my husband happens to be adopted and has no real need to locate his biological mother or father. That said, he had an idyllic childhood and his biological mother did him a solid by giving him to people who really wanted to raise him and could afford to do so. Not that money buys love. It can't.

If I told you some of the shit sandwiches I've had to eat over the past 10 years, you'd never want to eat again. It's ingesting the worst kind of manipulation possible and allowing it to become part of our life's fabric. We cannot help the guilt and the pain that our steps go through – we do our best, many of us anyway, to help them rise above choices they didn't make. But so it goes, the bio mom has a lot to do with the kid's attitude as we enter these situations with the best of intentions. If intentions were dollar bills I'd be Bill Gates. I love both of those kids – regardless of the behavior each has bestowed upon me. My younger one now 16 apologized for his less than stellar behavior, calling me a gold digger and his dad a stupid bread winner not believing I looked sick enough to have cancer. This coincided with his pre-teen hormonal hell. He is kind, loving, and helpful to me as he was prior to puberty – quite the opposite of his brother.

My husband’s guilt won’t allow him to drop kick him out to find that in the real world there aren’t private bedroom suites with bathtubs and house cleaners and magic fridges that fill themselves, and magic cars that have gas and pick him up and drop him off anywhere for free anytime, and juice containers to put your unbrushed mouth full of germs on and drink the freshly squeezed juices I make, or lock yourself up in a bedroom with a lovely daybed cum couch (excuse the double entendre) and play guitar or xbox until all hours and sleep until 2 in the afternoon, or talk to an adult by yelling and cursing and without a modicum of respect, and I won’t go on…

So, the loneliness sets in deep.

May we all not have to get used to being alone, as there are too many of us to have to be done with people just because we have a metastatic cancer. In educating people who do not have active cancer, they’re surprised to learn that although there’s no evidence of tumors or worse, thankfully, because their immune systems recognize and erradicate them.

It seems like an eternity still, two years and three months since my diagnosis. When I hear comments from people who know little about the disease, and mostly from rather snarky people who say, “oh, you’ll be fine” or “you look too good to have cancer” or other demoralizing, ignorant statements as such, I do not mind educating any of them. It seems, however, few want to learn. In education we sometimes find a fear that we needn’t have uncovered so late in life. But is ignorance bliss and lying to ourselves better than knowing the truth?

In step parenting and in metastatic cancer, as with being a wife to someone with long term depression and his inadvertency to get the help he needs to give me some of the help I need, I wonder if the human condition doesn’t somehow rely on lying to itself in order to continue to propagate itself.  As the line said in the title of this post, and a rock feels no pain, and an island never cries. You Paul Simon, are a genius.

Here's a song to listen to as you contemplate the dense and intense feelings of both stepparents and cancer patients, as I wish for life to go o after me without the great isolation each situation causes it's victims. 

Simon and Garfunkel, I am a Rock

I can’t trace time…

As the miraculously sentient creatures of earth with the gift of forethought and planning, sometimes, our little giddinness producing miracles go sideways. New plans must take the place of a road not taken. Make some adjustments to life, or in other words, change.

Change happens regardless of those Steinbeckian mice and men and their ne’er do well notorious plans. Change cannot be adjusted to adapt to our busy day, or to a more pleasing time. Even if you can accept and understand how the new changes will fit into your future narrative, we must reconfigure too many other important things that we are rushing around to get to even acceptance for life altering style shifts in our lives. Yet we’re stuck waiting for “never” it would seem, when you can accept and integrate it seamlessly, not when a moment of  “nothing much to do” happens.  Change, accept it or not, happens at the worst times of your life. How large the richter scale measures the shaking, like change in a life, the worse the earthquake shifts the ground under your feet. Changes become your entire self when the diagnosis of cancer creates tectonic shifts in identity, spirituality, sexuality…all our -ity’s.

Change comes in no particular size, no unit of time, no structural blueprints – nothing measurable to understand how far the shift will take you – a foot or thousands of miles. For instance, there’s little sureties that must change during chemotherapy, such as your toothpaste for periodontal sensitivity and dry mouth from medications and opiate pain therapies.  Then you face the omni-encompassing, life circumventing tectonic shifts. A soul wrapped in a physical body begins to change because of the corpus crisis cancer creates.

The identifications of a  person’s life, defined by what they DO to make a monetary living means less than before, even ending in a firey, screeching crash for some of us. Then what are we? Take our careers away and what does cancer leave as our identities in its wake?  Our souls feel alone since in order to interact as part of a network of people who identify with us, now are those who barely remember our names anymore. We worked on projects once, but cancer took those projects and made them impossible for us to remain on the “team.” Our souls become alone again.

Change to our identities from cancer, especially metastatic cancer, comes from a scarcity of funds and the unkmown quantity of life in human years. The equation for how much for how long when both =x and divided by zero doesn’t exist.

It’s more important to love what you do than making piles of money. The difference between living and making a living, is love. So make love, so to speak. Love what you do all day and love those with whom you choose to spend time with each day. The love you give to your living and to the people who help you make it deserve your best self. On the days when my best self looks something like the sock sorter in hell for the devil himself, I still wear the best possible face I can find inside myself, and get on sorting those damned socks.

By the way, I absolutely abhor sorting socks, and if by some bizarre quirk in the space time continuum hell exists, then hell is not other people as Jean Paul Sartre said, it’s sorting socks! Shut-y. We all have our quirks,so do not be so judge-y. Existentialism aside, stay clear of anything that feels wrong to you, feels ugly, feels hurtful, feels boring. Walk out of a bad movie, put down a dreadfully written book! Consume only content that pleases your aesthetic sensibilities. Once you’ve chosen your next intellectual feast for your mind and with your integrity in tact, pour yourself a steaming cup of Pleasure tea, grab a honkin’ slab o’ Happy Pie, and relax blissfully in the arms of a loving chair. Your flavor. Your way. You’ll love each sip and every bite, and in return have more love for your living and the people with whom you live.

Change your selections in your jukebox to music you can dance to, because no one knows exactly how long they have. I mean really, you could get hit by a bus or something!

David Bowie – Changes

Understudy

My time to lie down and die as prescribed, only known as “patient.”
From stage left, enter:
Sutured together in an unholy friendship.
Acquainted by bones held lines closely to my chest.
“the role of Physical unrest today played by a courtesan,”
A voice wails from behind the curtain velveteen,
Dust heavy, too long, bloody incarnadine.
She plays an understudy, the nobody anyone rushed to see fall a part.
Our audience politely sighs,
Glancing at tonight’s playbill and shift in behinds squeak and uncomfortably crushed into Corinthian seats.
Heaving together an a capella sigh of disappointment.
Today my body portrayed the Middle East warring for fuel.
Raping the enemy with hammers pushed, harder through lustful hypodermics.
My lines spoken, I go wandering,
Offstage, off site, unwanted, barefoot and dry lipped;
A nomad, a Hebrew. Relatively she’s alone, not home.
A mother, my father, the dead with signs above their heads.
Light the candles dear passerby,
Your tour guide, “right over there she played a daughter.” They overheard my silent cries –
That’s not my coast, isn’t my ocean, not my sand, not your hand,
I no longer smell the salted hot white bag saving my bite.
Said in my head since the audience left for better known actors.

Instead, you sir alone you stay to see the night’s temporary.
No applause, and embarrassed by your eyes,
Covertly you force me to bend into a happen shape to cover my nudity.
Who told you why some baker had to twist pretzels into sad knots?
Ask me what it means.
Does anyone stand in to speak that question?

Back after the last play,
No one came by, they stopped when the conversation turned,
To malcontented topics of aunts who smile warmly, incontinent and pushed in wheelchairs,
Catheter bags hang low, they passed a few months back.
Impishly, my body denied and she hides behind a series

Of course Hamlet’s breath shows cold a ghostly father who smells of hemlock, Delights with whisperings of Juliet’s stupidity.
Shakespeare’s women fell behind tragic greed, seriously,
Or illogical acts of watery folly. Did they mean to die?

Maybe Ophelia had a lump in her breast. Who knows what the players thought.
Maybe she fell, exhausted that fateful evening, simply tripped
Into the river bed, her floggs of corsetry snagged on a craggy tombstone,
Which never meant any harm. It was too soon.
Too soon to wave the day on like cattlemen.
Too soon to allow trust as such, to my physicians and cancer friends.
The physicians who know no depth besides my tumor.
The groups who know of me now as pitiful yet with humor.

Too soon to let go. I never meant to play Ophelia, never
Wanted the understudy roles but if for the sake of the show
Going on I’ll take whatever I get tomorrow,
Because we do not know what to believe anymore.
And in your blue eyes, the longest goodbye,
Your own hands massage my heart bloody and beating.
I cry. Yearn again for your fingers to play it back.
Let me hear you breathe for me – please. Oh, one more time.

Strings tight against your fingertips and close my word heavy lips.
You play our rage into a wooden box not enough to fit
All our anger. Or hold ether of us tight enough to asphyxiate.
The unknown actor playing the role of me tonight,
Pretend with the rest of the audience and stay without disappointment.