DAY 016 -- "Potato-Potato-Potato"

Today a real seriocomic gem, as I took the new Harley to the dealer for installation of my Stage I High Flow Exhaust System/Air Cleaner kit and a new pair of Screamin’ Eagle mufflers. That’s bike fancy shmancy talk for more power, smoother sound, cooler lines and a bitchin’ new look.

I had a few hours to kill before my Rad Chemo treatment, and what better way to pass the time than to hang out with my buds in the Harley shop showroom, talking HOG and spending 100 bucks for a t-shirt. That’s always been the not so inside joke among Harley owners: “What’s the HD in Harley-Davidson stand for?”

“Hundred dollars.”

I don’t care. It’s what I want. It’s what I need. It makes me feel free and most uncancerous, riding my iconic soulmate over these country roads on days like this, rising above the sore throat, shortness of breath, chest pains, bruises, nausea, needles, drugs, and as I mentioned in yesterday’s post: all stirred up by headaches in my stomach. (See Day 015)

This Stage I exhaust system upgrade is Harley entry-level coolness, as all good bikers begin tailoring their new rides with the endless options and add-ons available. I’m no exception.  

But, today a defining moment. That’s when the sad semantic hilarity of it all hit me: There I was, spending serious bucks for a Stage I upgrade to fine-tune how my rolling beauty breathes and rumbles, and meanwhile, back in the other saddle, I’m wrestling with a Stage III+ cancer that is roughhousing how I breathe and stumble. A good day for Cosmic jests, eh?

And, what’s in a word? Today, all of my life is standing right here (a fine place for profundity, next to a Harley dealer’s waiting room’s coffee pot).

Staging.

I’m staging my bliss in the service department and staging my bondage at the parts desk. Deeper in, I see this as how we all breathe, rumble and stumble along in every “normal” day, tweaking ourselves, adjusting our internal mirrors, dancing with our demons.  

*Confidential to everyone: Sure, science made the world, but poetry spins it.*

Every day, I’d like to give a nod each to the roles poetry and science play in our lives, how we act, and how we’re acted upon. Right about here in this blog, you can see this is where I’m working hard to take your mind off what I’m thinking.

   

So, screw it: get thee to staging, knees in the breeze, make your own magic, and I’ll meet you on down the road. Let’s ride!

Oh, I almost forgot the other defining moment today, when I rode off in that sweet new staged and upgraded potato-potato-potato sound, the bike sounding more like my body’s science, and me looking more like its poetry.

More as we go, El    

DAY 015 -- "This Tall, Silly"

A new medication today to treat my latest Rad Chemo’s entertaining new side effect: it’s an oral solution I can “swish, spit or swallow as needed.” In the bedside biz, it’s called “magic mouthwash.”

The side effect is this persistent sore throat that has moved in like a bum uncle on the couch. It was predicted. As we progress and the radiation works on the tumor, it also disrupts my surrounding structures, and because of the proximity, settles in my throat. It will eventually pass when I come to the end of treatment, but for now, it’s a bugger.

First, I used the solution wrong, even though the label’s directions allowed it. “Swishing” this liquid did a quick and strong job of easing my achy throat long enough to allow painless swallows through mealtimes, but it also worked very well, thanks to my wrongly using the “swish” option, in delivering a numb-tingling to the wrong characters:

Like a pre-extraction anesthetic at the dentist relieving gum pain, it also drags your lips and tongue into the fight and knocks them out, too.

Today, this all reminded me of the six-year old boy in clinic who once told me: “I’ve got a headache in my stomach.”

Made perfect sense to me, and his description helped the doc get right to the boy’s ailment, and combining this with other diagnostics, to treat him with the right applications. If the boy had said that his pain was a stomach ache in his head, well, that would’ve changed everything.

You get the idea. As patients, we can best help ourselves and our caregivers if we’re as descriptive as possible, using lively images and clear language when describing pain. A “dull push” is not the same as a “throbbing stab.” Or, a “heavy wringing” is entirely different from a “deep stiffness,” and being specific truly does help the practitioner to accurately diagnose and treat.

That’s the crux of medicine. Ruling things out. The paths to finding healings and cures always begin with determining what the affliction isn't, enroute to finding out what it is. And, because no two of us have all identical everythings, one size never fits all. In medicine, each one of us is a cosmic fingerprint.

That’s the art side of science, and enough metaphor abuse for now.

So, I got a liquid syringe and targeted the dose to my throat directly, bypassing my innocent buccal bystanders.

Tomorrow, I’m continuing my quest for simplicity in the way forward. A good way is to return to the wisdom of floating organ boy. Children have a knack of teaching us when we least expect it.

I also asked him if he knew how tall he was. Placing his palm flat on top of his head, he looked at me puzzled, but answered perfectly:

“This tall, silly.”

More as we go, El

DAY 014 -- "Nothing Trivial, Doc"

Some mental blurs today. A bad day with good spots.

Maybe I’m equivocating. I’m trying not to, so I probably am. Now two-plus weeks into daily cancer treatments hoping to ultimately give Rad Chemo the slip, and I’m still acclimating.

There is less mystique, as some hurdles are now projecting out ahead of me versus popping up. For me, in living with cancer, that’s often a good thing. I can better prepare and cope more effectively when I’m equipped with a sounder mind redirecting an unsound body. I have more fair warnings. I can see things coming. Knowledge is power.

But, I also know that sometimes spontaneity and impromptu discovery are better. Some of my best satisfactions, my life’s best bliss, excitements and enlightenments happened out of the blue.

The old adage --- the world was made round to keep us from seeing too far down the road --- has its time and place, but it can be the harder course when extremes become the norm, temporary or not. True enough, if we all could see all of what’s coming in our lives, we’d go a little mad, but I can see much of what is coming for me, and that’s also comforting, even empowering.

Good spots today were attending my nursing home private duty client, leaving her with a smile, a full belly and a song (I can’t sing, but I sing along with her, and two people singing out of tune is harmony).

Other good spots:

--- On the Harley and not getting into that accident near the interstate on-ramp when some manic motorhead cut me off enough to send me into the rumble strip. A near miss.

--- Finding the perfect parking place at the hospital, right next to the entrance. This never happens, and it happened today when I really needed it.

--- Arriving a half an hour early for treatment and being served when I walked in.

--- Riding home, the shimmers and reflections of the sun highlighting racing shell crews in the Connecticut River, set against a passing train complete with a waving engineer and a kettle of turkey vultures circling in the distance.

All good spots.

The “bad day” part of today was the persistent sore throat and some tidal nausea, which disaffected everything: appetite, voice, swallowing, breathing, thinking, dreaming. Nothing trivial, Doc.

Learning how to isolate without losing the ability to incorporate? Well, it’s not always easy to know when to hold on and when to let go.

More as we go, muddy or clear, expected or not, El

DAY 013 -- "You Better Free Your Mind Instead"

Today in my most unforgettable lack of character: following my rad treatment, the follow-up visit with the oncologist, and because most exam rooms are interchangeable, I was sent to this one: pediatrics.

Impression:

A. They think I’m behaving like a child (and that would be fine by me).

B. They WANT me to behave more like a child (I’m trying).

C. It just didn’t matter. In the cancer milieu, where everyone’s journey is unique, one size still fits all. Here is where the common denominator lives, but where the fingerprint keys will only unlock sole locks, and all the stories end at their beginnings.

I was just entertained by the sign, and my exam room nurse did call me a “young man.”  Bless her, and I would have, were I a professional sanctifier.

When I stretched out today on the Rad table, the Radionettes were on their usual match game. Through the speakers came The Beatles’ “Revolution.” Just what we need right now, given the recent national boneheadery going on.

 If someone’s reading this 100 years from now, check back to this date in history, and you too will wonder whathehell it was all about:

You tell me it's the institution
Well, you know
You better free your mind instead.

Before the treatment ended, a Radionette voice interrupted: “please breathe normally; stop moving.” Apparently, during my revolting simpatico, I was holding my breath and/or puffing through my singing (well, you try not moving some part of your body and/or at least humming through that rock anthem). But, you can’t do that on the terrible table; it upsets the machine’s equilibrium.

One other new development --- an interesting sidebar that looks like it will be a staple for a while: sore throat. Not from infection, but from some shifting cellular ping pong going on from the effects of radiation.

As much of my chest pain is moderating considerably (no complaints there) due to attacking rascal Rad Chemo’s handiwork thus far, the sensorium game changes, now shifting to my throat. Predicted by the docs as a possible but likely side effect due to Rad Chemo’s staging, location and temperament.

I was also read the riot act again. My caregivers deliver these little admonishments with compassionate kid gloves and Nerf hammers, but they’re still hammers:

“YOU MUST PACE YOURSELF” is the new buzz phrase. (They know I’m a nurse, and a good one, but I’m terrible (or very good) at “do as I say, not as I do", as my body now sends out new dictates on my tolerances, strengths, weaknesses and intensities, and in ways that need no introduction.

Over the weekend, I push-mowed my lawn on a job that typically (pre-Rad Chemo treatments) took an hour and a half. This time it took three. Quick to rubberized legs, and arms that felt like I’d just finished dead-lifting a Volkswagen, requiring frequent rests which were more like near collapses. Bad move. Doc says he’d rather see me walk a mile every day than five miles in one day.

Right about there, he was right, of course, and another enlightenment ascended, realizing that much of what I should be doing with my energy, appetite, movements, daily living activities, is not just a formula for coping with cancer, but rather the way we should all live, diseased or not:

Eat good food (no, I’m not going there; you know what “good food” is), more small meals instead of big feasts, exercise regularly in ways that are fun and communal and well-tolerated (no pain -- no gain is NOT the way to keep fit; I don’t care what your fitness gurus say). Cut out ALL excesses (no need to list them; we all know what we either do too much or not enough). Finally, take the summer off and hire the kid next door to cut the grass until Rad Chemo is history.

More as we go, El

DAY 012 -- "I Wouldn't Frass You!"

If my life was a soap opera (and whose isn’t?), I’d paraphrase the long-popular “Search For Tomorrow,” and dub mine “Found For Today.”

This thought wafted through my mind today without warning, and these days I’ll grab most any muse passing by, reel it in, rub it, scrub it, reshape it, beat it senseless, cuddle it, or just pull an Ars Gratias Artis and keep it raw, standalone and speaking for itself.

(I feel some metaphors coming on, so best steel yourself).

 I once attended a nun who was approaching her hundredth birthday. I don’t remember what subject we were smalltalking; it was a bit of the day’s news trivia (probably something religiously political or politically religious, whichever you find most stimulating and/or irritating.)

“Ohh! she said. “Thank you! Now I won’t die today!”

She went on to explain that any day we learn one new thing that we didn’t know before, we get a bonus day on earth.

I liked that. A lot. And, it may now be one of my new credos. I took the challenge with her, and made sure that every day we visited, I brought some topical tidbit I was fairly sure she wouldn’t know, and brought one along for myself:

“Sister Anna: Did you know that if you had a big enough bottle of catsup and turned it upside down, it would travel almost 2500 miles a year?”

“NO!  Oh, my! Thank you! I’ll sleep well tonight!” she gushed.

I think the next day I regaled her (and gave her another 24 hours to live) when I told her that the world's largest catsup bottle was 170.1 feet tall. Before we finished with that, I had at least a week’s worth of daily catsup trivia that kept her alive.

Matter-of-factly, when she told me about her formula for longevity, we made a pact, and I told her that I wouldn’t leave her attendance as long as she was alive, and she couldn’t die as long as I showed up.

She lived to be 102 and died on a day (believe it or not) I wasn’t there.

So, today back to the zip n’ zap regimen (Rad Chemo). This is the most consuming day of the week, where I’m hit with both. The rest of the day is pretty much a wash.  It’s hard to kayak the Ompompanoosuc or ride the Harley with a running IV, though I think I’d be willing to try it as a compensated university study in fluid motion variables (Are you listening, Dartmouth?)

Today, two new pics (and I hope a life-saving fun fact) for you. We’ll leave my cancer somatics lie for now. Everything’s going according to Plan A.

Here’s a pic of a Black Swallowtail caterpillar  that’s taken up munching residence in the porch parsley.  Fun fact: caterpillar butterfly poop is called “frass.”  There.  Now, there's your tomorrow, no extra charge. You’re welcome. I wouldn't frass you!

Uh … if you already knew that, sorry, I can’t save you, but thanks for playing, and do tune in again. 

I might find something else we don't know.

More as we go, El