Stomas and the Stuff of Life

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workday 3, commute home, 30 minutes of this

 

Note: some links and images present bodily functions including airways and bowels

Once upon a time there were two patients. Each had surgery resulting in a colostomy, an opening (ostomy) in the abdomen where the large intestine (colon) is rerouted and exits the front of the body,  not from one’s rear via the anus, but from the “stoma,” the end of the intestine that protrudes through the abdominal wall.  A special reusable and disposable bag is attached carefully to this opening to catch the gas and poop, no matter how runny or hard. It can be emptied as needed in the toilet, and has to be replaced every 3-5 days.  Odors and leaks happen on occasion.

Both clients were female, white, and about 80 years old. Neither knew ahead of time this was in the cards.  Both had a severe intestinal blockage and were given a heads up by the surgeon that a colostomy might be the outcome.  One of them, we’ll call her Liz, was rather perturbed with it, and called it unnatural, having what is supposed to be contained inside of the body, on the outside.

Occupational therapists assess the “self-care” realm of activities of daily living.  In the case of a new colostomy, evaluation includes considering how the client feels about it, their knowledge about how it works, their visual acuity, fine motor skills, sensation, and cognition.  These factors impact one’s success in managing the colostomy independently during toileting, bathing, and dressing, in addition to maintaining the supplies for it and attaching and detaching bags safely and effectively.

Liz was unusual in succinctly expressing her distaste for this “cure.” Many have been wary of it, some have kept a stiff upper lip and moved through the training without much comment.  Others previously lacked the cognition to live without assistance, so family or caregivers would be managing this new development, along with other daily needs that had already been managed for the client, e.g. insulin injections, medications, food preparation, and so forth.

Liz had been completely independent in her life prior to surgery.  Yet, she had some low vision issues and said she would have nothing to do with managing this new thing.  Nursing was taking care of it. She had no available family or friends to assist.  I asked her if she would’ve made a different decision about the surgery had she known before what she knew now.  She said there was no choice. I mentioned Atul Gawande’s book, Being Mortal, and how in today’s medical arena, it is helpful to have ongoing conversations about what we think we want in our lives; to flesh out what is important for quality of life. Gawande, a surgeon, is very eloquent in his book, as well as in the Frontline special that portrays the story of his father and of a few of his patients.

Liz had been informed that this was one possible outcome, but she hadn’t really taken in what it meant.  When I asked her about advanced directives, she said she had none, but that she would not want to be revived in her current condition. Her decisiveness shocked me.  When she demanded to know how to get that clarified in writing, I found out who she needed to talk to about “the POLST,” and a meeting with her doc was set up.

Colostomies had not occurred to me as something to consider in an advanced directive discussion.  Families talk about life support, breathing machines, paddles, maybe even feeding tubes, but colostomies?  Who even knows what that is?  It ranked in the amputee category in my unconscious.  You still function but adapt.  I told Liz, she had raised a good point— that maybe it should be on the list of life supporting measures that might be unwelcomed and thus, discussed in family conversations, depending on the participants’ tolerance for bodily function conversations.

That is part of the problem.  Bodily fluids tend to be stigmatized.  A brief google search of colostomies on the internet brings up younger persons taking selfies of their bags, posting How-To videos, and beginning to destigmatize the idea.  One person’s abnormality is another’s lifesaver.

Rhoda who was quite hard of hearing, had also lived independently before her surgery and had previously overcome financial, emotional, and physical setbacks. She seemed to view this as nothing more than a little bump in the road.  She reported that, though her nurses had been performing her colostomy care, she could and would do it without assistance.  She was still glowing from pride from having won the fight of her life years before.  Giving up her life now for a poopy inconvenience might have struck her as nonsense, had she been able to hear such a perspective.

Image result for tracheostomy image

Another patient, Janet, was completely deaf, had a feeding tube and a tracheostomy—a hole in her neck, but no colostomy.  I’ve always thought a feeding tube would be a reason to cut the cord to life.  But Janet taught me otherwise.  She was clean, brushed her teeth, didn’t smell like liquid food, walked to the bathroom, carried on entertaining conversation via the written word, and obsessively organized her small room.  She was a controller,  but a pleasure to visit.

I used to think if I ever got cancer, I wouldn’t do chemo.  I’d just go off into the sunset.  Then I got cancer.  And I thought my kids were too young for me to leave yet.  So, I did the chemo, and it turned out fine, except I decided I was glad I lived not just for my kids, but for my own love of life too.  Janet showed me that if I need a feeding tube, I can still hang with my kids and give them hell.  I might even be able to control them!

Make time for those hard conversations. Knowledge is power.  “Shit holes” are in the news these days.  Let’s use the term literally, in meaningful discussion focused on how we wish to live and die.

 

SD

 

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Pardoned

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I’ve decided to embrace my part-time, three days per week, floater J.O.B. It offers access to good insurance, money to live on, and a captive audience that contains many teachers.

At the end of each day, for the sake of HIPPA, I shred my patient log covered in my chicken scratch. I’ve got to figure a workaround on that, because I forget most of these Angels, before I cross my apartment’s threshold.  Hell, these organic, imprisoned inhabitants of insurance company supporting outposts, are incredible character material, let alone makers of short-term memories that I’d like to retain.  Recently, I allowed one of them—call him 54—to find me Not Guilty in the game of rehabilitation.

He and I were the same age and shared a love of bicycles.  He hadn’t yet started his rant as I stepped into his room, but I could feel it coming. In the initial five of the allotted 30 minutes, he moved to the edge of his bed, and from sitting, leaned side to side on forearms, mirroring me and listening to my commands.  I was observing what appeared to be left-sided neglect, stroke related, which I’d seen noted on my log.  In thoughtfully chosen semantics, I started to educate him.

thickened coffee

Seriously, there wasn’t time for pre-treatment intelligence gathering. Therapists are sent in blind. It’s all about the minutes. I knew that he had a feeding tube that affected the hours when he was untethered—this information would theoretically, ensure I saw him during a non-feeding hour when therapy minutes could easily be secured.

But who could argue that if he hadn’t had coffee, he should be ready to learn anything? The speech therapist had given him a trial of coffee earlier. He had signed off a release of liability to the facility for this coffee…it wasn’t even liquid.  It was thickened.  Having to sign a release was another sore point for him.

Now, I would argue that I would never have even entertained the notion of meeting him, if I had had the intelligence about the coffee.  I would’ve run far and fast in the other direction like my PTSD dog when he hears a vacuum motor.  Or, I would’ve brewed him my favorite Chiapas beans and slipped a cup to him, or even better, had him prepare some coffee in the kitchen for his therapy—but that would’ve far exceeded the minutes.

But I did see him, educated him, and listened to him vent about the worthlessness of life without real coffee and food, about wanting to follow-through on his previously laid life plans, about his theories of the cause of his left side oddities, and about random therapists coming in and tearing him down.

“It is far easier to tear someone down than to build them up,” he quipped.

“I know,” I agreed.  “I need to take you home and let you tell my 17-year-old son that tidbit.”

“Oh, he’s not in any position to hear anything.  He just has to experience the school of hard knocks first.”

Now, I wish I could recall his exact words.  They were so much better than that.

“I know,” I replied.  “But that’s a hard thing for a mother to accept.”

“Oh no mother can accept that.  I’ve seen many mothers and it’s impossible for them.”

Tears welled in my eyes and I turned the conversation back to him at the next pause.

I apologized for the daily stream of new therapists offering him unsolicited critiques. I encouraged him to discuss his desires, goals and discharge plans at the time of his next progress report, several days out.  As the clock ticked down, he said, testing me, “Okay.  I’ll see you on the 6th for the progress thing.”

“Oh no, not me.  I just float on weekends.  I’m part of the problem,” I sheepishly confessed.

“Oh, okay.”

He held up his thumb and two fingers, almost pinched together. “You’re just a little bitty part of the problem.”

I smiled, 20 years of occupational guilt pardoned, and thanked him.

The J.O.B. offers stability and teachers, and the other part of part-time.  That’s the part where I set the schedule and the names aren’t shredded.  Somerset Maugham wrote only when inspiration struck.  He was noted to say, “Fortunately it strikes every morning at nine o’clock sharp.”

That’s the plan for the new year.  With Steven Pressfield’s The War of Art in hand, and patient 54’s “Itty Bitty” pardon, I’m ready.

 

SD

Diary of a Reluctant Lineman Lover

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Hot water heater on a post—sounds like a fast food item. I sit warm and comfortable sipping coffee on this cold but windless Portland Friday, intermittent mysterious back-grabbing spasms notwithstanding. The motel-like parking lot view from the breakfast table window, provides an entertainment stage—on it, a far better production than one could ever pay for at a popular craft coffee shop.  I wake up Legolas and tell him he’s missing the show, the one that makes his computer gluttony possible.  I encourage him to at least watch and take his gratitude pill.  He disrespectfully declines.

There is a crew of five men, two long-arm trucks, one with a bucket, and a third tool-carrying truck.  The proper vehicle names I know not, nor their equipment.  I miss 99 percent of their procedures and methods and chide myself more than once for not anticipating when the next bucket move will be, consequently I’m not at the ready to observe precisely what and how they do it, whatever it may be.

The two bucket men’s body mechanics filter through my Therapist eye, and I sympathize with their presumed back problems.  My Storyteller initially mistakes the hierarchy of power, attributing the foreman role to the current tool man leaning over the bucket with the drill.  Later, I’ll paint the older gloved man behind him as the teacher, and the younger bearded one the apprentice.  How convenient to have a second pair of hands at your side, anticipating and obtaining each need in advance.  The foreman has that fatherly air of experience, been there done that, get ’er done in the simplest most conservative sequence. The ungloved mistake-prone apprentice reaches further, changes his mind, is careless of energy.  He’s the son!

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Transformer replacement – in progress

The two ground men operate the truck crane while the third and only helmetless man is the one I question and thank for the team’s taken-for-granted, challenging work.  “Changed out a transformer,” he replies when I ask on my way to the laundry room, what they just did.  In my shyness, I don’t ask enough questions or greet the bucket men as they dismount their stage.  From the other side of the window, I wished for the time to conduct a full-blown research project on electric company linemen, their training, pay, rules and regulations, differences between state laws, and so on.  When they’re standing right in front of me, I’m speechless, a lingering childhood defense mechanism.

When I arrive at the washer, it’s flashing, “re-select mode,” and has stopped at the 24-minute mark of the wash cycle.  I feel no irritation, knowing exactly what happened, now aware of the artisans who just maintained the energy conduit for the current and future workings of my modern lifestyle.  While darkness and candles fill me with a dancing glow, an aromatic serenity, and a balanced circadian rhythm, my dependence on the new transformer cannot be denied.

All of this, without even the mention of human, energy-sucking demands on the Earth…a topic mentioned in a book excerpt I conveniently read on my smart phone last night in my sleeplessness, via WiFi, via the router and the modem and the electrical outlet in the bedroom. “In the process of becoming civilized, we have become inhuman,” writes Terry Tempest Williams.  She and her husband have rebirthed The Story of My Heart by the nineteenth-century British nature writer Richard Jefferies.  It is, writes Terry, a “spiritual autobiography written by a man who lived to be thirty-eight years old, plagued with illness.” It is a book checked out on my library Hoopla e-book shelf, that I “lost” in the caverns of my mind and phone, yet came across two nights before it’s due date, when it will be invisibly and electronically returned.  It is indeed, a book that illuminates “dilemmas of modernity, the intrinsic need for wildness, and what it means to be human in the twenty-first century.”

I yearn for beauty, for the Earth, for the shelter dogs, Dagwood and Bucko of adopted rock-climbing parents. The couple left their apartment to live in a van where the four now explore nature with delight and abandon.  I know this, because Loveheart, my daughter, messaged the Facebook video to me last night, courtesy again, of the Internet, my phone charger, and bedroom electrical outlet…

Transformer replacement

Transformer – after

Warmly,

SD

By the Minute…or the Moment?

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December 3rd is an anniversary.  Two years ago on this day, after 5 months of chemotherapy for Triple Negative Breast Cancer, a surgeon removed my left breast and all of the lymph nodes in my armpit—23 to be precise.

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After dissecting Appy and the nameless nodes, the pathologist declared that all removed tissue had no cancer remaining, except for in 2 nodes.  This was considered a pretty good “response” to the chemotherapy.  Not “complete,” but close to it. I plan to share the Scheherazade files complete with pictures in another place TBD.

I’ve gone for follow-up visits several times in the last two years, even though there are no tests or images to be done to see if Scheherazade (the name I gave to the cancer) is back.  I’m told PET scans tend not to show much, until it is too late.  I’ve had occupational therapy patients in years past who had PET scans, and the results prompted clinicians to say, “She lit up like a Christmas tree”—not really a metaphor you look forward to in that situation.

So, I’m two years out.  Yay.  I’ve been cautious, knowing my mortality.  I have resisted agreeing to jobs and courses of action that assume a long life ahead.  When I was immortal I put up with misery,  sacrifice, and delayed gratification.  The future held out false hope.  But after Scheherazade, the future is not certain.

Year one, I traveled and visited family and friends (pictures and narratives also to be shared in another place TBD).  Year two?  Early this year, I found a rewarding job in a wonderful place.  But in August I found another job. I relocated to a big city for the benefit of my son (previously called Bam Bam in this blog—but now looking more kin to a high school version of Legolas in Lord of the Rings).  The new job demands watching the clock, logging every minute of “patient care,” and manipulating everything else the employer demands into an impossibly limited time frame.  Little room is left for meaning and integrity.

So, I’m dislodging myself.  I tried to stick with it, but Scheherazade beckons, as do quotes from three other sources that have crossed my path this fall:  a podcast, a patient, and a book.

“Capitalism and the free market don’t care whether you live or die.”

“There’s a little old black woman hiding somewhere in you…”

“You are never free to do as you please when you stay with the familiar.”

I had a craniosacral treatment recently from a woman, Amy Kay who is also an occupational therapist, self-employed.  Her treatments assist me into mindfulness—into the moment, bringing me into my neglected body and reminding me to breathe.  The longer I spin my wheels in this muddy existence, the less I breathe.

A gentleman in his mid-nineties thanked me the other day for the time we had together.  It was close to 90 minutes, you see.  That’s too many minutes, but we were enjoying each other so much, I didn’t cut him off.  He thought we clicked, as did I.  A fall had taken him to the hospital and then to rehab. So often a captive audience, my patients are.  He thanked me repeatedly and told me to keep up my Spirit.  I told him, “You made my day,” to which he replied, “You’re Clint Eastwood.”

Time to let go of the minutes.  I have unfinished business with the moment and the unfamiliar.

SD