Category Archives: Post Polio

Back Pain, Cancer, GeekWorld, Health, Post Polio

Abraxas

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Imbolc and the Moon of Tides

Friday gratefuls: Andrew. Nessa. Bone Scan. Radioactive tracers. Abraxas. Tesla. Uber. Tough day. Noem. Gone. Morning darkness.

Rene Good. Alex Pretti. Say their names.

Sparks of Joy and Awe: Technology

 

Kavannah: Shleimut.   Being present to myself.

Tarot: Six of Vessels, Reunion     Shadow reminds me. My little boy plays with her. Feeds her.

 

One brief shining: Encountering high technology: Radioactive tracers. The bone scan machine. Uber. A self-driving Tesla.  An organic among computer chips and software and radiation sensing crystals.

 

 

Retired Army Sergeant Andrew inserted an IV into my arm at 11:35. Flushed it with saline. Left the room to retrieve a lead box about 10 inches long and five wide. Removed the syringe with radioactive tracers that light up on bone. With a single push he sent it into my blood stream.

He took out the IV. “Come back at 2:30.” Three hours in a place where I could not rest my head. That soft brace? No match for hours in cafeteria and lobby chairs with no head rest.

By 2:30 I was so grateful to lie down. The too familiar curved table. Accepted me and supported my neck. The forty-minutes sandwiched between two cameras sensitive to the gamma rays coming from my bones? The most comfortable I’d been since I got to the hospital.

One of four imaging tests.  Baselines for the clinical trial.

After my much needed rest: time to enter another technology tunnel. Called up the Uber app on my cell phone. Of course. Credit card expired. The ritual:  Card number. Security code. Expiration date. Ah.

I entered the network of self-employed drivers near to me. Who would drive me home? Abraxas took my request.

Abraxas, a man in his early sixties drove a black 2025 Tesla. “Abraxas?” He nodded. “Charlie?” I nodded back while closing the heavy door and looking up through the transparent roof.

“Abraxas?”

A five-thousand year old Egyptian god. Rooster head and snakes for arms. Represents that God is one with everything.

Hmm. OK. Not sure about snakes for arms. Can roll with all is one.

A mind-stretching combination of magical thinking and a self-driving car.

When Abraxas bought his Tesla, he opted for a full self driving kit. Used it all the way from Skyridge Hospital to 9358 Black Mountain Drive. His hands fluttered, on occasion, below the steering wheel.

He even took the Deer Creek Valley road. A road through the mountains. I use it when I’m tired of the freeways. Very curvy. With bicyclists. All on self-drive.

When we got to my house, the Tesla dutifully parked itself.

Bones scanned by machine. Curves navigated by software. Me in my body.

Home again, home again.

Shadow wiggling. Smiling.

Cancer, Dogs, Health, Post Polio, Shadow Mountain

Living

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Imbolc and the Moon of Tides

Wednesday gratefuls: Taylor. Dr. Bupathi. Clinical trial. Dan Herman. Monarchs in Mexico. Honey and bud. Treatment burden.

Rene Good. Alex Pretti. Say their names.

Sparks of Joy and Awe:  Write on

Week Kavannah:   Yetziratiut. Creativity.   Keeping my lev focused on life, not treatment

 

Tarot: Three of Arrows, jealousy

Danger now. Confusing treatments with living. Treatments support living. Not the other way round.

One brief shining: Treatment burden can give us long term cancer patients blinkered seeing. Our world consumed by this decision, that lab test, the next protocol. The next. I’ve fallen into this trap. What Kate meant when she told me on her death bed, trust your doctors. I hear you now.

 

Wrenching myself back, into the life the treatments make possible. Writing. Shadow. Friends. Family. The life of the mind and body. Do not make living about surviving treatments.

Remember treatments give the gift of more life. Dig into revising Superior Wolf. Play with Shadow. Read another novel.

Living. Not for the clinical trial. Yet. Show up for the clinical trial. One pillar of a life well lived and one still worth living.

Do not descend into the swamp of the best care so I can see the most birthdays. No. No. Rise up from the swamp to live this day with as much passion, creativity, and joy as I can.

Back from Rocky Mountain Cancer Care. Thick clinical trial document signed. Questionnaires filled out for baselines. An EKG administered by Sarah, a young hijab wearing Muslim woman.

Asked her. Are you fasting? Yes, Yes, I am. When I mentioned the break the fast meal, her eyes lit up. My mom’s a great cook. We’ll have plenty of food. Sarah said fasting energized her. It’s cleansing. Ramadan in Colorado.

Met Kristine, Dr. Bupathi’s other P.A. I liked her. She answered my question about any opportunity cost to waiting six weeks to start a new treatment. Doesn’t matter to the outcome of my cancer’s progress.

Four weeks of imaging, blood tests. Also, a four week washout period for Erleada which I stop taking today. Orgovyx, Kristine said, is forever. It keeps my testosterone repressed.

After I signed the consent form and had my helpful conversation with Kristine, I felt I regained my agency. No longer floating in an uncertain time, between one treatment and the next, but headed toward a new, potentially better drug.

On another, less sanguine note. It was 70 in Littleton. 70! Shadow Mountain? 49. No Snow. Late February.

Also, high winds yesterday. Chinooks, Snow eaters. Would be fire spreaders.

Working with my writing coach, next moves on Superior Wolf. Editing, revising each Ancientrails post.

When I got back from RMCC, Shadow greeted me with hugs and kisses. Makes me want to see her first when I get home.

Found a new way to use my foam collar. A tighter cinching of it around my neck. Seems to contain the fatigue from my head drop.

A win.

 

Back Pain, Cancer, Fourth Phase, Friends, Health, Hermitage, Post Polio, Shadow Mountain

A Life Transition

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Yule and the Moon of Deep Friendship

Tuesday gratefuls: Gloriana frangipana! (first line of the Indiana University school song) Jane Pauley. Dick Pauley. Uncle Riley. Diane. The farm. The Blue River. Hancock Cemetery. Morristown. Milan. Bobby Plump. The Indy 500. The Indiana Republican party. Turkey Run State Park. Spring Mill State Park. The Alexandria Times-Tribune. Muncie. Wabash. Ball State.

Sparks of Joy and Awe: I.U.

Life Kavannah: Wu Wei    Shadow, my Wu Wei mistress

Year Kavannah: Creativity.   Yetziratiut.   “Inspiration exists, but it has to find you working.” ― Pablo Picasso

Week Kavannah: Daat.    The Bridge Between Mind and Heart

“If Chokhmah (Wisdom/Inspiration) is a seed and Binah (Understanding/Analysis)  is the soil that develops that seed into a plant, Da’at is the nervous system that carries the vital life force from the brain to the rest of the body. It is the point of transition from “thinking” to “being.””

art@willwordsworth

Tarot: Ten of Bows, Responsibility

  • Overextension: Pushing yourself too hard, sacrificing well-being for responsibilities.
  • Perseverance: The strength to continue despite heavy loads, finding inner resolve.
  • Completion/Release: As a “10” card, it signals the end of this phase, often with the potential for release or freedom after enduring the trial.
  • Prioritization: A call to assess what truly matters and learn to say “no” or ask for help.

One brief shining: Eleanor bounded down the stairs, Shadow twirled at the scent of her friend, Tara hollered we’re here, and the Shadow/Eleanor run, twist, smell, wrestle all the time day began when I opened the door, Eleanor pushed through Shadow greeting her with a jump and a play bow.

 

Sport: Pride of place belongs to I.U. football. National champions. Undefeated. Bringing gloriana frangipana to the nation’s attention. I listened to an all red chorus sing the I.U. school song and it washed over me, redolent of nineteenth century American higher education. Made me wish, again, that I’d chosen I.U. over Wabash.

Jane Pauley, married to Gary Trudeau and former host of the Morning Show, made this tribute piece: Hail to Indiana. Cousin Diane found it. Jane often came to our family reunions since her dad, Dick Pauley, and Diane’s father, my uncle, were like brothers. If you watch this piece, Uncle Riley is to the left in the old photograph shown near the beginning. Family.

 

Soul Work: This year, let’s start it on February 4th, 2025 when I adopted Shadow from the Granby Shelter, has been a humbling one, physically. Over the course of a long, loving, difficult time developing a relationship with a traumatized puppy, I’ve had multiple diagnostic procedures followed by several courses of varied treatments ranging from radiation to nerve ablations. The whole process exhausted me.

Since the last meeting of our Mussar Vaad Practice group a month ago, one I had to leave in the middle due to extreme discomfort from a hernia, I’ve grappled with a persistent issue: if I go out, even on small jaunts, I come home drained. A combination of my head drop from post-polio, right lower back and hip pain added to a general weakness due to sarcopenia and the energy my body has to expend making up for the resources cancer steals from it.

The soul work has been around accepting that I have become almost home bound. Here, in a chair that supports my neck, with my home gym, I achieve a normal day without depleting myself. When a day on my calendar is clear, my lev is happy.

I don’t like this, but I’m increasingly unable to live the life I developed after Kate’s death. Question. Can I still live a significant, loving life under these conditions? My answer is yes, of course I can. As I said a week or so ago, recounting my talk with Rachel, my social worker.

I’ve come to this conclusion. My life is now mostly here at Shadow Mountain Home. That means no traveling, fewer trips out and those more calibrated than before. Leaning on my friends for help when I need it. Beginning to think about some more paid help around the house.

A life transition, not one I sought, but one to which I have to adapt. See the ten of bows.

 

 

Back Pain, Denver, Health, Post Polio

Belay Glasses

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Samain and the Summer’s End Moon (a very faint waning crescent)

Wednesday gratefuls: Tom. His path. Shirley Waste. Joanne. Working out. Great Sol illuminates us all. Shadow, who goes outside when I’m done talking on Zoom. This strange trip we’re on. Ripple. Sugaree. The Weight. Ain’t No Grave. The Night They Drove Ol’ Dixie Down. Tambourin Man. Don’t You Need Somebody to Love. That teeny Mule Deer not quite a fawn anymore.

Sparks of Joy and Awe: Morgan, rock climber and orthotist

Life Kavannah: Wu Wei    Shadow, my Wu Wei mistress

Week Kavannah:  Hakarat Hakov   Gratitude.    “Who is rich? Those who rejoice in their portion.” Perkei Avot 4:1

Tarot: Being a metaPhysician

One brief shining: Still in the dark, I picked up the white plastic trash bags filled with two weeks of refuse, some garbage, some recyclable, opened my kitchen window which begins about a foot and a half off the floor, tossed the bags in their respective bins, opened the front door, and went out to pull them with a sound like muffled thunder to the edge of my driveway where Seoah and I went as the last ritual of Kate’s shiva.

 

Tuesday, Tuesday. Drove down the hill into Denver near Denver Health to the Evergreen Orthotics office where I once again discussed braces for my wobbly, sagging head. Morgan, my orthotist, a fit young woman in her late twenties, early thirties with an engaging smile and warm persona showed me the possible braces. Both soft, one identical to one I purchased on Amazon, another larger.

I told her about my problem standing and talking with people taller than I am. At 5’5″ that’s a lot of people. She said, “This is sort of a joke, but you could get belay glasses.” She’s a climber and explained the principle. Belay glasses have a prism that lets you see your climbing partner without straining your neck back.

So I could have my soft neck brace on, then in a social setting I could flip my belay glasses on my readers when encountering a taller human. That wouldn’t be weird at all.

There’s a transition here, similar to getting my handicap placard, where I have to publicly acknowledge my troubles with assistive devices. I don’t like it. Yet most old folks wear both glasses and hearing aids…assistive devices. So. Transist me up, Scotty.

Inadequate solutions at best, yet better than having the charming medically described head drop.

 

Turned around and drove back toward Golden. Panorama Orthopedics. Saw Abby who numbed my hip and jabbed a needle through my skin. Steroids again.

“So,” I asked, “if the injections don’t work and you can’t do surgery, where does that leave me?”

She shrugged a bit, a slight tilt to her head, “Well, then we’re between a rock and a hard place.” Which made me think of Morgan.

Oh, I also thought. Whaddya’ mean we whiteman? It’s me that’s stuck. That bridge we all agree we’ll encounter later. You know, when we come to it.

Left there and drove forty-five minutes back home. A lot of pain setting in as I headed up into the Mountains, willing myself back home, driving sometimes with gritted teeth. Too much for one day.

Back Pain, Cancer, Cooking, Coronavirus, Politics, Post Polio, Sport, US History

How Great an America is This?

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Samain and the Summer’s End Moon

Sunday gratefuls: Dodgers win the World Series! Rabbi Jamie’s hug. Joe. Alan. Jim. Corey. Irv. Matt. Torah study led by Luke. Bagels and schmear. Joanne in rehab. Back to real time, standard time. Dark Winds. Everwood.  Heather. Tramadol. The boiler. The mini-splits. My breath. Sight. Touch. Taste. Hearing. Smell. YHWH.

Sparks of Joy and Awe: Home

Life Kavannah: Wu Wei

Week Kavannah:  Histapkot.  Contentment. Acceptance.                       I’m comfortable with who I am and with what I have.

Tarot: Being a metaphysician

One brief shining: Sitting in regular chairs, my head unsupported by a back rest, fasciculations begin, muscles straining and flexing, moving under the skin, distracting me from the words of Hagar and the Angel, from El-Roi, the God who sees, I don’t notice it, the wobbling, at first, until my shoulders get sore and I’m no longer able to concentrate, be sharp, as my head tilts right, polio wreaking one last not so subtle blow.

 

So. I’m taking notice. Part of my fatigue, maybe a big part, follows from my increasing inability to hold up my own head. Dr. Eunberg diagnosed it, post-polio syndrome. I’ve been to an orthotists’ office and been told my situation has no other instances. They’re going to modify soft collars for me. We’ll see.

Beginning to feel like my body’s falling apart literally from the neck down. A tumor on T4 needing radiation. Arthritic L1-L5 nerves needing ablation. A right torn labrum possibly needing surgery. I mean, geez.

I’m so far ahead of my insurance company with expensive cancer drugs, pet scans, mri’s, and radiation. That makes me feel somewhat good. Even so…

 

Food: Had the last of the sheet pan meal with my Cherry Tomatoes and Beets. So. Good. Planning more sheet plan cooking, easy, quick, lots of Veggies. Of all the health maintenance matters, cooking for myself has proved the most challenging. Just hard to pull off.

CookUnity has been ok, but just ok. Pricey and with time constraints that make it difficult to use. Some of the meals are tasty, many of them edible, but only edible.

May not be getting enough calories, protein.

 

Sport: What a world series! Game 7, extra innings, Dodgers behind with two outs in the ninth…and Rojas hits a home run! Tie game. In the 11th, the 11th inning of Game 7 of a world series with a historically long game 3, 18 innings, a double play ended the Canadian’s dreams. Dodger’s repeat. Not since the Yankees 1998-2000 run has a world series champion repeated.

Meanwhile, back in forlorn football country, JJ McCarthy returns from injury absence. Will he play like a future franchise quarterback? Or, will he rip out the hearts of a Twin City’s fan base already inured to the breaks never falling their way. If the Vikings didn’t have bad luck, they’d had have no luck at all.

 

Just a moment: SNAP. Medicaid. Obamacare. Taking money literally from the mouths of the poor, taking away their final recourse for medical care, raising health care premiums to the    sky for even middle class Americans. Funneling the money “saved” into the pockets of oligarchs. How great is this America?