DAY 024 -- "Two Leapfrogs"

Bad day today.

I should qualify that, because I did ride the Harley to work on this gorgeous summer day, and any time spent atop that rolling potato-potato beauty is a good one. So, I’ll qualify my opening:

It was a bad good day.

The joy of the ride aside, the rest of the day was a poopy head. No, not literally, just a juvenile, tantrummy, woe-is-me pity-party. A real wah-wah-wah kind of day, dipping into misery like a sponge.

So, naturally, by the end of the day I was waterlogged and couldn’t stop crying. Yes, even though the bike rumble-purred perfectly and never left me hanging.

Specifics?

--- Radiation rash on my chest/neck that only constantly burned when I breathed, Doc.

--- Sore throat particularly acky-gritty today, but only when I swallowed or thought about swallowing, or if I wrote a rough draft self-help column on how to swallow without using your mouth or throat, or when I looked at my reflection out back in the puddle pond, or when I shifted into sixth gear, or when I stopped to watch the porch hummers darting at the feeder like sparklers.

Okay, okay, I know that’s pushing it, but you get the idea. It hurt.

--- A nagging internal plumbing problem that would bring the Maytag repairman back from the dead.

--- A feeling that I’m taking two steps up and two leapfrogs back. 

--- A blast of humility, when I thought of so many others who are suffering so much worse than me, and wanting to wave that all-magic career nursing healing wand (the one that works, even when it doesn’t) and take us all out for banana splits.

Diane came home, caught me blubbering, and when I wailed my list of today's achy-breakies, did the right thing at the right moment: held me silently, let me sob it out, then asked if I wanted some slurpy, friction-less mac ‘n cheese for supper and a scratchless, easy slider-swallowing Jell-O chaser for dessert.

Topped with a soothy-smoothy banana split.

I’m a lucky man.

More as we go, El

DAY 023 -- "Making My Own Time"

I’m giving you yesterday’s report today because yesterday was a day off from treatments and I was out doing what I’d rather be doing all the time: riding the Harley (pacing myself, of course), and looking and sounding good (at least in my eyes and ears).

But, I’m pressed for time this morning, even though I’ve become quite adept at making my own time when I want it. So, let’s just enjoy a few artsy-fartsy pics from the ride.

One might need an explanation, but it could be more fun if you made up your own.

Oh, and things to ask the Doc today:

1. Has anyone ever had their lung cancer cured, but then had skin cancer move in? (I’ve acquired a sore, radiant rash where I’ve been getting the radiation treatments).

2. Should any cancer patient being treated with radiation and chemo go easy on the citrus? Must I give up orange juice?

3. How ‘bout those Red Sox?

More as we go, El

Day 022 -- "Clean Fill Wanted?"

Today on my walk---YIKES!

A man with cancer walks! What’s my world coming to?! I’d better be careful; this could lead to harder stuff. Before you know it, I’ll be laughing without cues, burping my wine, parallel parking, and ending sentences with prepositions before I know what I’m getting into.

I’ve been trying to do (most of) what the Docs have advised me to do in my ADL’s – Activities of Daily Living. Lenny Bruce called it eat, sleep and crap. A bit oversimplified, but we do all start from there.

But, when cancer drops into the mix, it sends those activities haywire, writes new rules, changes the game, moves the sidelines, deflates and overinflates the balls, bribes the players AND the referees, shortens the season, makes the impossible plays commonplace and the improbable penalties damned likely.

I know, my metaphor abuse slip is showing, but I’ve always been a sucker for a good juiced-up storyline. And sure enough, because poetic justice often wills out on its own, here I am.

Yes, I do continue with my ADL’s as do we all, but now with all the cancer caveats: I sit when I pee (especially on post-chemo days), stand when I scratch (you’ll just have to accept that one), eat and swallow like it’s a dress rehearsal, and just generally do everything I did before Rad Chemo came calling, but now with a red-penciled script.

Yes, I still ride the Harley, kayak the Connecticut, swim in the lake and eat what I want, but now the rides are shorter, the river is wider, I jump in the lake with an extra and bigger noodle, and the pursuit of sweet, sour & savory is a science project.

And, today, walking these country roads: Two miles instead of five, two walking sticks instead of one, and because I’m finding profundity in everything lately, I can turn every turn into my own rough drafts of wit and wisdom, including dirt.

Clean Fill Wanted?

Yes, yes, yes. I sure could use some of that.

More as we go, El

DAY 021 -- "Partners In Crime And Accessories"

I missed a day with you.

I’m keeping this numbered chronology intact, but a day and a night slipped by in there unrecorded.

It’s happened before in my professional life (for reasons better left in the vaults), where I found myself sunny side out. I remember a facility where I was working 12-hour nursing night shifts, and I showed up for work, as usual, about 6:30 p.m.

No problem … except it was 6:30 a.m.

After I was properly chided by my co-workers for turning my day on its head, they asked if I could stay. Another nurse had just called in sick, and I was caught standing there, inside-out of time, with no good reason why I couldn’t work, and any excuse would’ve been lame.

** Nurse’s Note: If you were a patient there on that day-for-night and I missed your bathroom call, or I was late with your meds, or I called you by another name, or I dropped your pudding on you, or you suffered in any way because of my temporal topsy-turvy, if you had a bumpy admission or discharge due to my diurnal daftness, I apologize.

Where does that leave us now?  Not so bad.

Not everything is notable. I know, that’s not where this self-absorbed technopop culture is heading, if it’s not already there, but not every picture is worth a thousand words; some aren’t worth half a bad limerick.

Can’t we leave bad enough alone?

Are you going to insist that I retrieve the day? Must I make everything reportage between us? Can’t we have a secret or two? A blank space not filled in? Why can’t you and I have an empty shelf, and instead of filling it up with kitschy knick-knacks, just step back and admire its openness, it’s purity, its promise?

Nah. That’s enough of that.

I took the time off from the muse because it was neutralized by the new rash, the nagging new developments going in, the missing ones coming out, the wax and wane of pain, the ebb and flow of relief, and the inability to sometimes make a getaway from this damned cancer’s partners in crime and accessories during the fact.

No further need for specifics; you get the idea:

It only hurts when I am, Doc.

I need this narrative for me, but I hope it helps you, too. Even if cancer is not a part of your life, it will almost certainly affect you somewhere along your journey, either remotely or center stage. I hope this accounting will be a resource for camaraderie, a work (and play) template for all our common community of illness and health.

As seen here, it is a thousand-word picture. I’m only trying to grab a few of them, for both of us, as they go by. And, now that I’ve mentioned it, might’s well give you that half a bad limerick (if you’d care to fill it in, have at it.)

There once was a man who got sick

A cancer became his new shtick

He was a bit peeved

But----

More as we go, El

DAY 020 -- "Potato Pancakes And Rose Tarts"

“Life is like a---”

Since getting cancer, I find myself beginning too many thoughts or conversations with that prelude, then stopping short of the answer. I’m also blaming (or crediting) my cancer for everything from my head to my heart to my herebefore and thereafter (I may have that backwards, but it works for me either way).

“Life is---”

 

Well, right now it’s a rose and a potato. On the porch at home, we have both, growing in pots.

I was thinking today about that botanical odd couple of tubers and flowers just as the rotating wings of the radiation machine begin their targeted circumferencing of me and my shadow. I had to. The Radionettes were playing some numbing background elevator music, and I was trying to move that evil audible into good imagery.

Surprising, because as you’ve seen thus far if you’ve been following along, they’re usually my spot-on DJ’s. I asked them about it.

“Why those saccharine tunes? Have I been a bad patient?”

“Frankly, yes. You don’t realize it, but you’re squirming, singing, breathing abnormally during the treatment, and it upsets things. We thought this would help calm you down.”

“Well, I’ll have to think about which is worse: cancer or canned music.”

So, I turned to the profundity of disparate potted plants in my mind, and that helped neutralize those soulless strains in the air.

Why is life like potted roses and potatoes? Maybe I should ask why MY life is like compacted buds and spuds. Your life may be like soybeans and palm trees.

Yes, it’s unusual to grow a potato in a pot, but it will still flower briefly just before harvest.

And, though it’s not common to use roses as a food source, we do have rose wine. They may not be a nutritional mainstay as a whole plant, but their petals will partially dress up a salad, or a smoothie, a jam, a fish garnish, even a rosy cupcake.

So, here we are halfway through my treatment regimen, with a food that flowers, and a flower that feeds. Somewhere in there is why my life and my cancer may not resolve, but they will reconcile.

Oh, and when my treatments end, you’re all invited over for potato pancakes and rose tarts.

More as we go, El

DAY 019 -- "It's Nothin' But A Lateral Climb"

Not sure why the emphasis the last two days on critters: yesterday the Broad-winged Hawk, and today in the radiation waiting room with aquarium fish and a stuffed Blue Heron.

Maybe I’m now more in touch with my animal impulses dealing with this brutal invader in my body. It feels that way sometimes, like there’s a backroom cockfight going on in my lung, or crawdad stampedes that come and go in unexpected places, or I’m a whale feeding on anti-plankton, whatever I mean by that. I think I know, but I’m too tired to be sure.

Or, maybe it’s because I often relate better to animals than humans. Note the Blue Heron looking askance but keeping me within beak’s length. Very wise bird, even if it is stuffed. I’ve known stuffed people who’ve been less attentive.

Or, the captive fish swimming in the illusion of vastness. That’s maybe too close to where I go when I let my mind play out worst case scenarios, but I am a sucker for the poetic, light or dark. In this photo, I’m pining for some fins and a way to breathe underwater, if all else fails.

Lastly, the Radionettes nailed it again with a guitar blues feed as I stretched out on the terrible table (I’ve now dubbed this my lateral good iron maiden), and they piped in Robben Ford’s “Lateral Climb.”

What once was a dollar
Is lookin' more like a dime
Heads up people
It's nothin' but a lateral climb

 More as we go, El

DAY 018 -- "If You Can Get Through The Twilight"

Before leaving to accompany me to chemo today, Diane snapped this photo of an immature Broad-winged Hawk perched in the dead pine. (We're pretty sure of the bird, after checking our home bird book library).

The “dead pine” is an inside joke here. It is so dead (how…dead… IS IT?) Thanks for asking. It’s SO dead, that its needleless branches have become a modern art masterpiece, but it also sports ideal branches for lots of our other fly-in friends. All-size perches, with unlimited views into it and out of it. Good for preys. Good for predators.

For the hawks, it’s a prime overlook/launchpad for swoop-downs and keeping their role in the food chain intact: nesting birds, chipmunks, snakes, mice, insects, frogs, and other hawk fodder – all of which abound hereabouts.

-----

**Warning! Liberal Blogger’s Political Privilege, Confidential To Everyone**:  Am I digressing? You betcha, but nobody digresses better than I do. Everyone will tell you that I digress longer and better and smarter than anyone anywhere in the world, that I can tell you. When I digress, no other digression even comes close in all of mankind! No, in all of history!

(See how stupid that sounds, Donald?)

-----

Okay, entering the infusion room for chemo today, and the nurse smiles, points to the corner of the room, and says: “All ready with your usual chair.”

“Nooooo! Not that!” I said, with all the mocking fun I could muster: “Please, can’t you move things and give me an unusual chair? I just don’t feel usual today, and I hate being a usual anything.”

Good laughs had by all, then we got to the usuals: Insert IV port, blood draw, lab report reviews, twenty question weekly update, weight (gained 2 lbs!), pre-treatment nausea meds, then the big chemo guns, and later the best and most unusual hospital cheeseburger I’ve ever had. Food eaten during infusion, for some reason, is particularly satiating.

Later, on to my irradiation. New development (not permanent and not unexpected) as an itchy diffuse rash has appeared on my upper chest where the treatment is focused. I’m given moisturizers, anti-itchers, additional pain meds as needed. This is temporary, so I’ll quote directly from my favorite humorist, no frills: “If you can get through the twilight, you’ll live through the night.”

Both treatments otherwise uneventful today. Visit with oncologists: “We’re still going for a curative.” Yippee (I’ll hold the exclamation point for now. Wouldn’t want to provoke the cancer gods. They’re fidgety enough already).

Meanwhile, there’ll be a few more weeks of cancer treatment fallouts through these courses, all influencing appetite, bowels, skin, thinking, sleeping, effects, side effects, and yes, because medicine and our bodies are such capricious lovers, side effects of the side effects. Egads.

This sign in the bathroom, one we're all now accustomed to, just hit me as deeply funny and ironic and profound today as a metaphor for life, death, love, all in one sentence. I'll let you figure it out.

Oh, and the hawk that Diane spotted up there? She now informs me (her research biologist history slip is showing) of the marked variance between the sexes. She’s just played a recording of their respective voices for me. “Ah! Listen, El! The male voice is an octave higher than the female! What does that tell you?”

Hmm … I don’t know where she's going with that, but I’ll bet it’s great. I do know what I'll try to do with it tonight, however. Maybe, when she’s on her oboe and I’m at the piano, we’ll play an octave apart.

Counterpoints.

Thanks again, Ma Nature.

More as we go, El

DAY 017 -- "In The Wild From Nowhere"

 A fifty-fifty day: sitting one half of it atop a Harley rolling thunder road, and one half inside a kayak on the Ompompanoosuc River. In the background now comes a paraphrase of my favorite Yogi Berra quote: “Cancer is 90 per cent physical; the other half is mental.”

Up popped another rule for good living, and because I'm taking the time these days to not let life's little big things get by me, I followed it. It's simple enough:

Look up in the sky occasionally.

We don’t think to do it routinely, and even then, not without cues (a bird, a plane, a passing superman, the usual) but we should.

This picture is why. Spectacular … and I made it my own:

The afternoon’s sky was Parrish blue, painted with an airscape of cirrus cloud tails like this one, wisping every whichaway. This is how it presented vertically, and if it isn’t a ringer for a pair of lungs with an exiting trail of cancer cells draining away, then I don’t know my imagination.

Cool, eh?

And, don’t forget to purposefully look down once in a while, too. Not just to be sure you sidestep the dog poop, spot that oil leak, avoid the pothole or notice your mismatched socks, but because you otherwise just might miss the lily pad flotilla floating in the right light and shadow.

 No Photoshop required. Ma Nature will always entertain us for free, and with no help from us, if we’re wise enough to let Her.

Lastly, don’t forget to look straight ahead on ground (or water) or you might not capture that pocket of rock-rooted black-eyed Susans, or the birdhouse jutting up in the wild from nowhere, or a girl and her dog on a paddle-by barking.  

** Blogger’s privilege: I deliberately wear mis-mated socks these days. After a near lifetime of conforming to a dumb standard, I’m done with ever considering it again. Who says socks must match? Not me. Not anymore. **

Let’s close this vision-fitting day with Yogi. No paraphrase necessary:

“I want to thank everyone for making this day necessary.”

More as we go, El

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