Cancer and Intimacy: How to maintain life in a healthy relationship when you’re not healthy

I contend, against what some might disagree with, that the fundamental rules of the road still apply to relationships even after a cancer diagnosis. Mind you, special circumstances arise like depression for either partner, Post Traumatic Stress Disorder for the patient, anxiety, survivors guilt (if you’re not stage four), and an inability to partake in sexual activities as you once enjoyed. This is true especially if you’re undergoing treatments like chemotherapy or radiation, and during healing from surgeries.

The endless list of caveats, not excuses, swirls around the bedroom like the static electricity before a storm – it’s invisible but we can all feel its effects. Sex in the time of metastatic breast cancer can leave women feeling awkward, shy, unattractive… In some cases sex can pose a medical danger due to the suppression of the immune system by treatments. The act of intercourse or the insertion of (fill in the blank) can tear a very delicate vaginal lining allowing bacteria to enter the blood stream. I’ll leave it here for you to draw your own logical conclusions.

A host of various challenges beyond physical intimacy can create a hurricane gale force wind of yelling in the living room, too. Not to mention the generally debilitating fatigue and insomnia causing scheduling mishaps. Financial burdens cause cancellations of plans and much needed vacations that must wait, or in some cases never ever come to fruition.

Those two examples, complex and full of emotional heaviness, are just a few in a list of “collateral damages” as Dr. Susan Love refers to all the plights caused by gynecological cancers . But cancer doesn’t have to pull up the roots of a strong relationship, nor does it effect the ability to execute on the basic blocking and tackling of keeping love alive in every couple’s relationship playbook. I keep a laundry list of things in my mind that I know require my attention to protect whatever got us together and keeps us together.

We like to believe cancer changes certain aspects of our personalities, generally for the better. We also must differentiate between chemo brain when applicable, fatigue juxtaposed against raw intelligence, common sense, and kindness. If we were jerks prior to cancer, chances are we are nicer but still jerks after cancer. Irrespective of side effects, cancer probably cannot make you a complete idiot either sans a few IQ points from whole brain radiation, god forbid, either.

For example, there’s no excuse for not keeping the anger and hostility in check in lashing out at your mate. That’s a stupid use of your cancer card. A mate who didn’t ask for the role of caregiver and primary earner, if these weren’t your beloved’s role as it probably became on the day you got handed your cancer card and membership in a club you never wanted to belong in the first place.

I try to live by how I wish to be treated, though god knows it’s not always possible. On the days when I find myself in a bad mood I stow myself away with apologies in advance, or if I’m up for it I vacate the premises for a while. Generally speaking, as was in life before cancer leaving for a spell makes the heart grow fonder and stupid arguments forgiven if you can even recall what the tiff was about in the first place. A short term memory lapse may be indeed be the single upside due to chemo brain when it comes to silly arguments. A nice thought anyway.

Yet, cancer can tear apart even the most stable of relationships. That is prior to diagnosis. In my own case, the C’s depression nearly did us in but I’m not the kind of person to cut and run when the chips are down. And he’s been better for a couple of months now and I’m certain I made the right decision, although it was difficult at times to do the right thing.

Reversal of Fortune

Many people disagreed with my reversal of caregiver duties. I’d been advised he should be taking care of me. I thought long and hard about it and I found a very counterintuitive conclusion: my mind was not on my cancer and by defocusing my energy from thinking about my own illness, I didn’t succumb to self pity. The pity party never got started, and as we do not know how long I had cancer before my stage four diagnosis, it’s been at least six years very likely I’ve been walking around with breast cancer.

Prior to four years ago, the C had a very high stress job at the worlds most prestigious and popular company as a senior scientist. For 10 years I played a key role in keeping him and my stepsons healthy and happy while holding my own in a career that ended the day cancer began. He’s still supporting me with a home, an automobile, money when I absolutely need it, etc., and for lack of some of those kinds of stressors I’m very, very lucky. And I know it, and now that the big D (depression) has ended he doesn’t ever think to bring this up as a point of contention. During the big D, C resented me having to rely on him. For now, we are past the big D, and we are getting along better than ever. With caution and the proper medications, that is.

Ilene’s golden rules of a peaceful relationship

The following comprise a list of free, no-cost high value things you can do to strengthen your relationship at a time when many fall apart for various reasons and whose fault can be either person.

So try as I can, I:
Listen
Acknowledge
Apologize
Laugh
Forget it
Forgive it
Hug and kiss
Trust
Laugh
Be a best friend
Laugh
Hug some more

The Underminers

One little bit of smack talk is treacherous to a marriage. One little bit of love right now – even a knowing look of “it’s me, don’t worry I got you,” will play in Peoria every night. There’s some very basic things my 53+ years have provided me through experiences in my understanding of men, helping me find a peaceful way to travel from Venus to greet my martian and meet him half way.

A few good general lessons make sense whether cancer invaded or not:
Don’t ask “what are you thinking sweetheart.” He’s not thinking about anything. Really.
Change yourself, not him. Help him be a better him, with augmentations like a shirt he’d buy himself. If he needs you to help out, he will ask what to do eventually.
Those two round things in a bag in his pants are his to enjoy . Let him keep them. He has to protect them to protect you and that’s his job because we aren’t that evolved as a species yet.
This keeps me out of the cool feminist refrigerator but I couldn’t care less.
You do look fat in that dress/ skirt/ shorts/ jeans so don’t ask him to take the beating for it.
If you don’t have your own interests get cracking or crafting and pursue them outside of one another and outside of work. Life’s not dull, the same memories replayed and infinitum, are.
Privacy is an indelible right for anyone so do not go through anything of his ever. Never ever. Not a cell phone, not email, not the glove box of his car.
If you don’t leave for that place you intended to chances are you probably,y never will, either. Fun must become part of your routine both together and apart.

We will survive

Without the few aforementioned best practices, a couple won’t develop the foundations for a future and for love to find a higher ground above any kind if illness. You can call me a romantic because I am. And I brought breakfast in bed to him 90% of the days we’ve been together. I also follow my own advice. I didn’t fail, but yet for a marriage go on while starving it of love one may lose their life as well from the stress level brought on by a breakup. Know that to go on whatever path or direction your lives may take together, remember to be BFFs first because everything else will follow in the footsteps of your good choices…

The forest of cancer and the trees of love
… even in the wildest winds there will be one last twisting deciduous leaf on a fragile white fir branch way in the back of the shallow foothills. If it’s alive you’ll find it. The leaf reminds us in the forest there’s a tree with hope of life clinging to it as we must cling to one another even in the harshest storms. As the tree seems reborn in the springtime, love can withstand wintertime, too.

Canferatu: The Prequel

In which our heroine finds herself clutched in the monster’s filthy, razor sharp claws, afraid for her life.

Introduction: The scripting process begins and ends

This narrative slowly opens and possibly took several years for the writer to realize the finished script. Editing the story of a life continues beyond publication, past the timeline of those who inspired the characters themselves. Those millions of words, her own and the voices of many others, became nothing more than ash made by trash bin fire. The wire mesh bin sat next to a solid oak beast of a work surface, the top ringed by years of too-hot coffee cups, and covered in a tablecloth of loose papers. A cracked black leather swivel chair sat empty and pushed back and turned away from the monstrous kneehole desk. On top of all the remnants of the writer squats an old black Corona typewriter, its clacks and clangs silent, it and the room gathering dust with every day since it’s author began her lifetime leave of absence.

Three years ago she abandoned a life of of golden accolades and long, meandering plans for future gambols. Three years ago, she traded the promise of generally uplifting experiences for the protracted life of a victim, incarcerated in her own body for crimes no one could pin down to a single suspect. Lately she looked weighted down by absurdly heavy fatigue. Additionally, without any real past precedent, she began to catch many uncommon colds and any new flu of the present season. Never before had her immunity left her body so unsecured and without patrol. It seemed illness had cracked her genetic health code. Our author’s body felt like someone else’s, although outwardly it looked exactly like hers, other than bluish circles around her eyes. As her story unfolded, she assumed these symptoms had to be a sign of work burnout and too much step-parenting stress.

Cortisol, a result of stress, certainly played a key role, aiding and abetting the ghoul who committed the ultimate crime against her, in an inside job right under her skin. Regretfully, she paid minimal attention to the diseased monster on a million-year long crime spree, taking women and even some men to an early grave, but not after draining them of their life force and absorbing it into his own body, which made him stronger with each new victim. And the shape-shifting monster metamorphosed to outsmart even the savviest of detectives who aimed to catch this predator once and for all. With each new case, the authorities found some new twist or turn to throw them off of his scent. He reeked of death.

A malcontented criminal, he tortured her unmercifully then leaving her alone, broke, and without empathy from anyone. This vampiric disease sucks the life out of its victims, some slowly, and some very quickly, but all losing their lives to the waking nightmare itself. In her case, she wrote the screenplay, acted the starring role, and eventually scrapped her success for a slow decline towards failure at the fangs of Canferatu, or the Vampire.

Part II. Oh, no! (Everything changed overnight )

One March night, I curled into the fetal position in the middle of our bed, sweating and wailing. I suffered from extremely severe abdominal cramps from what we thought was a case of bad food poisoning. My husband, Craig, finally demanded I get into the car and go to the hospital. He physically put my body over his shoulder and got me into the cloud like front seat of his Jaguar and pulled the seat belt around me. This, only after his heart sank as he watched helpless. Inconsolable and with huge tears bursting from my eyes, I screamed at him, “there is no way I’m going to the hospital! I’ve never been to the hospital! I’ve only been once in my life, when I was born and I’m not going!”

On the other side of the looking glass, this Alice awoke the very next day in a bizarre alternative universe. “You have metastatic stage IV breast cancer and ascites fluid build up in your abdomen.” Everyone around me looked stunned. Everyone who called to check up on me went silent, leaving me holding my cell phone and repeating, “hello?” checking to see if their calls had dropped.

“Not her! She’s fine. She takes care of herself. Look at her – she’s going to be 50 in June, she doesn’t look anything like 50, let alone like someone with a doomsday prognosis.” Sword of Damocles hung on the mint green wall over the hospital bed, my morphine drip morphing everyone’s words, a swirl of doctors, test results, and of two hospitals fighting over whose patient’s money the other stole by keeping me in their bed. I felt like a mixed metaphor in the wrong storybook. Now Goldilocks? Clearly I wasn’t in a fairy tale and Goldilocks would certainly find every hospital bed uncomfortable.

The bleak prognosis of my diagnosis shocked me and everyone involved in my life. Inescapable, unbelievable, incurable…a normal life as I once knew it (whatever normal means who can say) abruptly ended as exhaustion, pain, sadness and finally a wholly reinvented life took over completely. What could anyone say after five days hospitalization, five liters of cancerous fluid removed, five days of struggle to work with insurers, five more to become a patient of an oncology team, and five weeks from the day of my initial hospitalization I began my chemo and hormone treatments. Yet all my doctors could say was…wow.

Everything changed, including my relationships with my family, my friends, my stepsons, and Craig. My husband fell into the depths of an anxiety fueled depression. I’m happy to report three years later, he’s finally recovered, sort of – unless some dramatic bullshit flung from the other side of town where his brainwashing banshee of an ex wife pretends to raise his younger son. Do not judge. I’ve kept this ugly saga away from my writing generally speaking. This discussion requires a blog site all its own, and that would only serve to elevate an already overinflated sense of control for a person with a massive narcissistic disorder. No thanks. Dealing with the emotional wreckage and fallout is quite enough. (In case you’re reading this, and you know who you are, go fuck yourself.)

Craig’s recovery requires a medication called Pristiq. His mental health issues began well before my diagnosis. After the stage four gauntlet got laid down, he struggled with the horrible notion of my death and we began about five months in hell to get back to one another. He initially reacted by ignoring me and admitted feeling resentment, of which he felt ashamed. In hindsight I am uncertain as to how ashamed he really felt. It’s clearer to me how much resentment lingers in the air between us, even now, three years later. It’s as though he tests me. He waits to tell me I never want to do anything and asks me to go out with him when I’m having a bad Health day or when I’m enraptured in writing or editing a piece of poetry or an essay for my blog, or trying to work on my Etsy business. All of these things suffer from the resulting bickering brought on by the care giver role thrust upon him. The role he threw off like a bad suit after a long day almost immediately after learning of the responsibilities.

Lonely, scared, angry, tired, moody, but generally motivated to live, I said, “not me, no way.” And sure as I tell anyone who’s reading this, I’m still here three years after my diagnosis of stage IV A1 lobular hormone receptor positive breast cancer with metastasis to the bones (and now liver). My sexuality and womanhood now stripped away from me, I no longer appeal to my husband or anyone for that matter. I feel like I’m a non-gendered adult. I’ve taken a laundry list of medications, sat in monthly seats in the infusion center for shots to my abdomen and gleuts, monthly blood work, countless visits to oncologists, psychologists, palliative oncology, radiology, specialists, a multitude of nurses, a surgeon. I spent a second week-long in the hospital. I’ve been to breast and metastatic support groups, cancer retreats, and learned to deeply meditate.

There’s good things that I’m certain have humbled me. Yet I speak to none of my former friends but a couple. My new friends don’t expect me to be as I was and know me only as I am now – someone with metastatic cancer. I never see my stepsons who have been convinced by their mother that I’m lying about the severity of my disease because I look too good and I’m simply a gold digger who doesn’t want to work full time anymore. I wish, honey, I wish.

It’s still a nightmare and admittedly and despite the “best of the worst case scenarios,” I’m not thrilled with a life path that leads only to an early demise. Canferatu never sleeps, his fangs deep within my neck. And though you cannot see him, he preys on my organs and functional systems until another cocktail puts him into a coma, but a coma he always awakens from to claw at my insides and take more of my energy for himself.

I still want my life back.

Humid

Unlatch me, catch and return me
scales, underbitten and in the flesh
A real guest of honor.
Crumpled shirts creased,
A Western hanging for
Black hats. Barn door closets
Open and craving smart suits.
Drawers devoid of life,
Almost empty except
Gideon’s guide book —
The Special Edition
With tourist maps all

Pointing north at heaven.

City of the mourning,
New Orleans. Crowning delta
Below the Mississippi
Yawning maw of God’s gulf,
Inhumane with heat and Sunday
Revival tents wailing
Bodies flailing fall
Into hands holding healing swords.
Flashing off for good now
Our red light died a slow
Death of the reception’s
Nightly cries passing.
I lift the receiver to hang
So lifelessly in my hand

In place of a revolver.

I paid for a view not a single window
Dirty false balconies
Overlooking rooftops and
A city-brown river.
Lime junkets float down under
The bridge of my nose.
Hangover sweat on sweet
Silk sheets of honey, carts
Of cigars and molten cherries
Jubilee. Bananas
Charles Foster Kane,
I believed in his full name. He

Came from nothing, too.

One Fresh Hell, Hold the Tomatoes

Last week found me a visitor to a mental health facility, leaving him there each evening, heading downcast out to my car and my lonely drive home. This place just a few miles from our house, in the foothills just 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 hashtag slung around my neck like an albatross, another petal of hope plucked from the near bare flower of love for him in my heart.

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 is over 10 years in the making, cruel editors mangled the melodramatic script and the film itself in the can, spliced together and the story arc mangled under the cruel cinematographer’s blade. The final reels go to the studio with all of my scenes cut and lying on the floor.

I hoped for relief at the end of a long week spent alone over the course of treatment, no sparkle reappears in his eyes yet and his happiness 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 stars behind clouds on a black night canvas. He lays there disengaged, brooding silently, interrupted by long bouts of sighing. Inside him rises the simmering anger of so many men who find themselves bitten by but embarrassed to speak of such disorders.

Sometimes, it’s just frustratingly difficult to hide my 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 summation 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 the wide, wise universe that his soul be returned his body.

He, too, wants only the same for me – happiness – yet 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? On what plane of existence does he live in that this would even be okay? Not even by a substandard, unintelligent alien culture of unfeeling assholes would this rank as logical or even just “fine.”

Then, with that comment lingering in the air as the gas he passed as he falls asleep yet again 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.