Tag: caregivers

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.

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.

The Longest Goodbye

He called it the longest goodbye. When my husband came to me in the kitchen he looked fore lorn, bright blue eyes spilling clear Caribbean blue waters down the white smooth skin of his cheeks. Waves hitting the sand.  His emotions, usually saved for “some other time,” overwhelmed and weighed heavy on me and pulled me under. A fist started to ball up in the middle of my abdomen, then swung out of my rib cage like a hook to my solar plexus.  The pain akin to what I imagine a boxer’s punch to my stomach might feel like.  The wind came rushing from my lungs leaving a vacuum instead of breath.  With the counter between us, I stood in the kitchen staring at him, grasping for air in outer space rather than earth, with no gravity nor anyone to hear me.

He said, “I feel like this is the longest goodbye.” His long goodbye probably feels something like my unknown immanent dance with death to the song of metastatic breast cancer. But its not his disease.  It’s a disease that his wife and his life’s partner wrestles with and nothing he can do much about except hold my hand and sometimes ignore when it all becomes too much.  He’s never been one to care take, so the nomicker “caretaker” doesn’t fit him very well.  He’s one person in a two person horse costume and there’s not enoug of him to fill it out.

How he feels watching me go through every day with the physical pain and mental pain only comes out as cliche terms and inept acts of nothing he thinks very effective. As he speaks of his lack of efficacy, tears welled up in my eyes – tears were welling up in his eyes, too. That moment touched me so deeply and it was so profound that there was nothing that I could say, nothing at all, that would make him or I feel any better.

The profundity of the longest goodbye in my husband’s sadness began two years ago this week over the news of my cancer at 4:30 am – called back to the hospital.  It couldn’t have been anything more than what he said today, which was the most profound thing I had ever heard another person say about me having this wretched disease. I felt a lot like he does trying to soothe me somehow on a daily basis, and how unfair this all is and how frustrating that I couldn’t do a thing to abate his worries.

Some of us call it striving. Some of us call it fighting. Some of us call it surviving. Some of us call it whatever the fuck we want to call it. But at the end of the day what you call it is what it is – it’s metastatic cancer. You know eventually it’s going to pull the trigger and shoot you in the back like a coward in a western movie, and it’s going to be excessively painful.

And it’s going to suck. It’s going to suck worse than anything that you’ve ever had to deal with in your life and you know it. You know in your heart you know what in your soul and your husband knows it in this long goodbye that’s just an estimate of how much time is left with you. I love that man more than I can express and I love him in a way that before he arrived suddenly 10 years ago, love had no real consequence. I do not remotely regret he will be my last love, either. In fact I’m relieved it’s him.

You say goodbye, but I say hello.

Hello hello, I don’t know why you say goodbye I say hello.