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Sunday, December 9, 2018

DAY 052 -- The Usual Posted Warnings




 I don't know which is harder: trying to read between the shifting lines of body language or the scathing sounds of spoken language.

Today, at my Imfinzi infusion session, I also met with my oncologist to review the results of my recent chest CT scan.
His body language told me: “I’m concerned.”

Trouble is, so did his spoken language: “I’m concerned.”

So, I pressed him, knowing that he’d get as specific as he could, which is considerable, given his expertise. I also knew that he’d stop short of using a crystal ball. I threw mine away this past year, and this young Doc already has the wisdom to leave seering to the seers.

He deals in facts. Numbers. Ratios. Equivalents. Values. Imagery. Diagnostics. Degrees. Like this one, a before and after comparison (minus the phony Photoshopped brush-ups). This is my interior, courtesy of the art-science of tomography. 

Yes, there is a virtual slice of my chest: most recent on the left, three months ago on the right.


I’ll leave you to find “it,” like one of those picture puzzles with subtle differences in the same drawings. Ah, this one has a mustache; this one doesn’t. Find the missing shoe. One of these things is not like the other (done in your best sing-songy Sesame Street off-key).

Get the pictures? Get the errant lymph node.

Yes, good Doc will sometimes venture into prognostication, but not without first applying the caveats of possibilities and probabilities. With predictions, there must be a way out. That’s why crystal balls in my life are now junk novelties.

Not the best news today, so next up? Another PET scan and EBUS/Biopsy to dammit see which new pronouns and adverbs will be coming into play. Good thing I love the language: wordy or worn.


 Another dark door to go through, with the usual posted warnings.

More as we go, El








Friday, November 30, 2018

DAY 051 -- The Earth Moved Its Moon To Mars

Yes, we’re way off chronology here, but let’s forget about the numbers and sequence. Today is the fifty-first day of my recorded reportage. That’s all we need to know.

The more I travel along with cancer and treatment, the less important it is to have all my ducks in an ordered row (see Day Forty-Seven). Now, if they want to swim in crazy semi-circles out of sync, have at it. And, if they want, they can let in some geese for comic relief.

Ever recklessly optimistic, Diane and I also bought an elliptical machine on the oncologist’s advice: “low-impact, good upper and lower body, easy to pace, moderate.” He was right. Plus, I’ve come to be a friend of my body marking time and my mind moving with or without me.

I’m also playing more piano, returning to my muscle memories of old, sight-reading, even being bold enough to post a few videos. If the world conspires against it, I’m relaxing, having fun and abusing my rank amateur status.
  
Today, a return for a follow-up CT scan of my tumor. Today, we see if it’s better, worse or unchanged. Since the end of Rad Chemo, it’s been immunotherapy every other week. Six down, twenty to go.

Immunotherapy. All the logistics of chemotherapy without the balding, barfing and bruising. Yes, there’s a new and always evolving side effect list now, but with more annoyances than toxic disruptions.

Still comes the daily fatigue, sometimes predictably, giving me enough warning to prep for it: pull off the road, pull up a couch, stop a boring conversation. Other times, it’s just upon me: one minute ta-da!, the next a suddenly-sedated Gumby.

I’ve learned to effectively deal with it without hurting myself or anyone else. Then, there’s that list:

Shortness of breath
R-sided abdominal pain
Irritability
Ankles, feet and hands swelling
Rash/itch/blistering
Twitchy lower limbs
Fingers cramping/locking up
Fuzzy hamburger slippers (sorry, just checking to see if we’re all still sitting up straight in class)


I haven’t spoken to my docs about the above, but I will at my next treatment … along with today’s scan results.

Today, arriving home after the scan, I’m okay with this. I and my ducks and geese have learned how to wait.

Maybe the doc hasn’t called me because the results are inconclusive.

Maybe they’re awful.

Maybe he hasn’t reviewed them yet.

Maybe the earth moved its moon to Mars.

You’ll know when I know.


Oh, and one added attraction tonight: Creamy Vanilla Smoothie Readi-CAT 2 Barium Sulfate Oral Suspension contrast medium makes you (me) shit like a shark.


More as we go, El






Tuesday, October 30, 2018

DAY 050 --- "It Goes On"



I’d like you and I to end this part of our journey through my cancer domain with a grandfather’s wisdom, but I’m hard-pressed to remember any wise thing he ever told me.

He did do lots of life’s grandfatherly things and told me lots of life’s grandfatherly stuff, but he never said anything on the order of the oft-quoted and worldly definition of life from Robert Frost, who said that he could sum up everything he knew about it in three words: “It goes on.”



Grampa never came close to what may be three wiser words on human life and its longevity: “Where’s The Beef?”

Or, let’s face it, he missed the brilliant formula (and its endless garage variants) that drives all of us to get up and live another day: “See the USA in your Chevrolet.”

Still, well into his nineties, and not long after my grandmother’s passing, he did say that the biggest challenge of aging and living day-to-day was coping with loneliness:

“I don’t mean being alone,” he said. “We all live our lives alone. Your grandmother and I lived alone together for sixty years. And, no, I don’t mean solitude, which I cherish; I mean loneliness, which I loathe. Feeling lonely. Sometimes it’s possible to feel lonely with someone lying right next to you.”

I knew exactly what he meant, and I wished I hadn’t.

“I mean lonely because you’ve outlived the characters you grew up with. Lonely because everyone you knew then is dead. No peers, no lifelong friends, no adversaries, no companions from your past, no bosom buddies, nothing to remember with another living soul who also remembers your memories. You’re lost in time, traveling alone … and lonely.”

He added one more thing: “But, I don’t miss all those people. Either they all left too soon, or I hung around too long. I miss the person I was, the person I could only be, when I was with them. I miss that guy. I miss me.”

When I think of this exchange, one of my last conversations with him, I’m second-thinking it. Today, with what I’ve experienced and what I’m facing, I think I’m wise enough now to level a colloquial bunkum at Robert Frost, serve up a burned hamburger at Wendy’s, and send a Klaxon horn blast to General Motors.

Yes, indeed, thinking about it now a third time, I think my grandfather was the wiser man. Wiser than all the poets, burgers and cars in the world.

* * * *

As of this writing, we’re heading down the immunotherapy road.


My tumor has shrunk. I’ve finished the intense courses of radiation and chemotherapy. Food tastes better than something you might feed your pet iguana. My scarred chest now looks better than the insides of your pet iguana. My disease and I are “well-managed.” We’re okay.

I would say everything is static, but I’ve yet to find anything in this life that is. Nothing in this life never changes.

I do have one request:


Every day I meet people who know me and my recent history --- friends and folks who've heard through one grapevine or another that I have cancer. They're also aware that I've had lengthy, harsh and debilitating treatments.

First thing they say is "You look good!" (Right about here, I want to write the literary equivalent of skid marks.)

I wish this would stop. The meaning between the lines is “You look good for someone who has what you have and who’s gone through what you’ve been through and who may or may not be dying.

Or, perhaps less generously: “You look good for a zombie.”

Don’t misunderstand. You know my sense of humor by now, and I do  deeply appreciate the awkward but good intentions of people meaning well. But, if you and I meet at a live book-signing, please, any other greeting will do:

“You look good for someone I thought would be shorter” will do nicely.

More as we go, El




Thursday, October 18, 2018

DAY 049 -- "She Will Deliver Anything"

More moving on.

I’ve finished my second immunotherapy infusion of Imfinzi, and now have a clearer idea of what my next every other Monday mornings will look like for eleven more months.


Frankly, it all looks rather boring, unless---

Unless my IV line blows and I get an infiltrate and cellulitis. Or---

One of the many possible Imfinzi side effects moves in, runs amok, and my lungs rile up into inflammation filling stations.

And my breathing goes heaving.

Or my cough won't bugger off.

And my boweling needs troweling.

Or a burning itch starts to twitch.

And my urine ain't recurring.

Or my appetite won’t bite.

Or unless, on my way to treatment, just as I'm bending down to reach for a wallet I've spotted in the gutter, I’m run over and killed by a black stretch limo carrying the Publisher’s Clearinghouse Sweepstakes grand prize film crew enroute to special-delivering my giant lifetime payoff check.

(I mention the latter on the off chance that there really is something in the cosmos resembling an all-powerful supreme being who either has no sense of humor or a really twisted one.)

But, if I survive all that, there's always passing the time in a game of hallway tag with one of the TUGS, the hospital delivery robots, as I take a break from pre-waiting to waiting.


My favorite roaming bot is "Rosie." Not very talkative, but devoted and unfailing in her duty. She helps me (on those days I need it) to let go of my dangerous imagination and to stop thinking.

If I stand in her path, she will wait for me to move.

She will not run over me.

She will only enter an empty elevator. 

She will deliver anything, anywhere, anytime.

If she isn't invincible, short of being unplugged, I can't see how.

She never makes a mistake.

She helps me forget what brought me here in the last place.

She looks like a gussied up trash can but inside her fine-lined delivering womb are life-altering documents, and even life-saving medications (mine).

She is pure function. She is unrepentant. She has a lovely whir. She has one green eye and one red eye.

She is never early, on time, or late.

I envy her. On treatment days, I'd like to be her male counterpart:

"El has arrived." Simple. Undeniable.

 Cancerless.

More as we go, El




Monday, September 24, 2018

DAY 048 -- "A Little Big, A Little Little"


My wife the scientist (plant biologist and biochemist) has more than one save-my-day to her credit. No, I’m not just talking my cancer, though it has been the high end of her rescues lately.


"Oh, quit quibbling!" you might say, and you’d be half-right. The best half.

Example: At last diagnostic outing, my follow-up CT scan did show a decrease in tumor size after a six-week course of radiation and chemo treatments. I wrote down the new dimensions, which to me didn’t seem all that significant, and frankly I expected more of a drastic visual – something I could really get my eyes around. I was disappointed.

“Well, Elwin, your tumor has gone from the size of an amputated dragon’s foot claw to a shriveled pea.” That’s what I wanted to hear, not just the mere metric reassignments of an irregular-shaped mass.

Enter my uxorial (re)calculator, who promptly scientificated everything, converting stuffy centimeters into the puffy cloud patterns she knew I could relate to:

“Look,” she said, drawing a picture of my said diminished puffy tumor clouds on paper, drastically showing my before and after. She did this using Pi (nothing’s scientific without using Pi somewhere), metabolic pathways, gene sequences and the table of Elements.

She knows I’m kidding you (and her).  I’m a warrior poet/writer; she’s the diplomatic research/visionary. Sure, she may have used her foundation of super-fundamental figuring to get there, but in the end, there it was on paper: my claw and pea.

My “Then” dragon’s foot claw, and my “Now” shriveled pea.

Diane was elated, because she could show me a visual, using her number mechanics and my need for eye candy. “See how much progress you’ve made?”

Yes, now that I see the lines, the shapes: then big, now smaller. I have my comparative analysis with the easy visual specs that my brain loves. I see what I’ve gained (by losing). I see more reason to hope.

I see that every love needs a little push, a little pull. A little statistic, a little imagination. A little big, a little little.

Immunotherapy today, my first round with Imfinzi. Only 51 every-other-weeks to go. Imfinzi: 



It is “approved for patients with Stage III non-small cell lung cancer whose tumor cannot be removed by surgery (unresectable), and whose disease has not progressed following chemo and radiation therapy.”

That’s me all over.

Inside.

More as we go, El




Monday, September 17, 2018

DAY 047 -- "Different Ducks"



Here I am: still tumorous (though it's shrunken and shrinking, as we discovered yesterday), but I’m not reporting in this travelogue every day. When you and I began this, I didn’t miss a daily entry for the first few weeks after my diagnosis and the beginning of treatments. In fact, I’ve been more religious about writing here than I’ve ever been about religion anywhere.

Blogger’s license: As we travel on, we may indeed venture into exploring the finer and grittier nonsecular side of how I’m living with cancer, but not just yet. I’m not quite ready to draw that mortal marker in the sand, at least with the curved stick necessary to do it. Be patient.  


And, what’s this? Another change in agenda: As a veteran lung cancerite with his first courses of chemo and radiation completed, I’m breathing easier, and that’s only half a metaphor. Yes, I’m easing up a bit on the sequential reportage in this blog. Perhaps you’ve noticed. To paraphrase and beat a tired cliché senseless, I’m getting all my different ducks in a row.


If you have noticed, I hope you don’t think of it like you wouldn’t think of a piano tuner at a Bill Evans concert.

We can still rest for a day of reckoning or two, you and I, without missing a well-tuned instrument. And, lest we forget or find ourselves a little metaphor shy today, remember that some piano notes make their sound as the result of a felt hammer striking multiple strings.

Don’t get me wrong. There isn’t a day or night that my cancer takes time off in my mind’s rolling marquee. What is changing is that sometimes I read what’s playing, but I keep on moving and pass by the theater without going in.

Today with my oncologist, we reviewed what’s coming on the road ahead with immunotherapy at the wheel, and we talked about how “smart” cancer is. Like any invasive entity, cancer “finds its way around the obstructions” inside a body, and we now must get mine to outsmart it by reshaping the obstructions and rewriting the directions.

That’s way oversimplifying the process of immunotherapy, but I’ve had my fill of medical techno-pop lingo these past weeks and months. Let’s just stay with simple-speak for a while:

I’ll be getting an infusion every other week for a year.

I’ll be dealing with a whole new array of side effects.

I’ll be okay.  Same lake. Same water. Same sky. Same island.



Different house.

But, one last concession for those of you who simply must have a finite visual: my tumor did shrink, from 5.5. cm X 3.0 cm, to 4.4cm X 1.8 cm. 
Take that.


Oh, and the trade name for my new immunotherapy drug?

"Imfinzi."

Cool, eh? Sounds like a low-riding, self-steering luxury convertible sports car.

More as we go, El




Wednesday, September 12, 2018

DAY 046 -- "The Surprise Evidence"



Thus far on this journey, we’ve had causes and effects and precipitants on precipices; we’ve had surprises and monotonies and expectations of expectorants; we’ve laughed, collapsed and risen from the dread (awful puns a bonus).

We’ve made it to here with a now shrunken tumor. The full report is still pending, but the initial review is promising. Now, on to the next phase of my whack-a-mole game with R.C. (Rad Chemo):

Immunotherapy.


I could write a scientific chapter & verse on this mode of cancer treatment, but you have Google, too. Suffice and simply to say that it’s a way of training my body to attack cancer from the inside out, instead of going at it from the outside in.

Just think of me as a human antic-cancer microwave. For the next few months, that’s what I’ll be. I’m just hoping that my turntable doesn’t slip off the rollers.

Meanwhile, because I think we both need a good distraction today, here are three random mind clouds drifting by:

How did I get to be this old on this planet and not know about allelopathy? (Go Google).



It’s best demonstrated by this pin oak in the back yard.  Before my sweet scientist/plant biologist wife Diane enlightened me, I didn’t know trees (or any plants) had this encircling, stunting, survival mechanism. I always thought it was just tree shade repressing the surrounding grass.

Silly boy.

How did I get to be this old (embarrassingly, as a New Englander) and not know that sunflowers were not just that one big-headed smiley variety, but Ma Nature also produces a variety that grows several heads?


Again, enter Diane, planting the surprise evidence in the side garden.

How did I get to be this old (ESPECIALLY as a New Englander) and not know that moose sometimes kneel to eat? If I thought about it at all, I thought they operated more like wide-stancing giraffes.



None of the above, and all of the above, has everything and nothing to do with my cancer. I’ll let you sort it out.

More as we go, El







Saturday, September 8, 2018

DAY 045 -- "I'm Ready Ready Ready"

Today?


Four little words, hitting me with almost the same impact that seven big words did this past July 1st (See: Day 001 – The Arrival Of Rad Chemo). It seems like it was only a million years ago when I was in the Emergency Room and heard the attending Doc tell me with that deadpan, unceremonious delivery:

“You have a mass on your lung.”

But, today, if it’s possible for language to undo language, my oncologist told me -- after a summer of radiation and chemotherapy treatments (I named my cancer “Rad Chemo”), a lava flow of endless side effects, a physical suffering and a mental anguish that I’d be hard-pressed to find anywhere else in my life:

“Your tumor has shrunk.”

Yahoo. Yippee. Hooray. (I’ll withhold the exclamation points for now, because there’s still a journey ahead with Rad Chemo, but you get the idea.)

A good news day.

From here on, though, we’ll call Rad just plain “R.C.” to keep him honest, and because I feel like I still have a stowaway inside me. But, let’s say that Shrunken R.C. took a big hit, and on we go now to a long course of Immunotherapy.


This also came on the day that R.C.’s radiation burn finally approximated, and for that I’m keeping the exclamation point!

So, let’s leave this on the upbeat with a song I first heard in boyhood. It was beyond my bedtime, so I had the volume low but my ear pressed on the console box radio speaker, tuned in to the early days of Rock 'n' Roll, and on came Little Richard doing “Ready Teddy.”

It put the hook in me and kept me up all night (“to the early, early night”), and the genre was then and forever a part of me.

For some reason, it’s revisiting me today with the news of R.C.’s asskicking and radiation burn resolution, so I’m going to stream it for a while.

Way past my bedtime.

With the volume UP:

I shuffle to the left, I shuffle to the right,
Gonna rock 'n' roll to the early, early night,
I'm ready
ready ready teddy
I'm ready

ready ready teddy
I'm ready

 ready ready teddy
I'm ready ready ready to

rock 'n' roll.

More as we go, El



Monday, September 3, 2018

DAY 044 -- "And A White Noise Machine"


Here again, I’ve missed a few chronological days of blogging herein, though I haven’t adjusted the numbers. This is as it should be, because it mimics how my cancer and treatments have progressed: sometimes as scheduled, sometimes out of whack.

No matter. The truth is the truth, delivered in dribs or in drabs.

Big week coming up, with follow-up diagnostics, bloodwork, scans, oncologists.  This will show what’s happened to my cancer (or not) after weeks of chemotherapy and radiation.

Nervous? No more nervous than I was that time I was clutching a daisy between my toes and dangling upside-down from a cliff above a river full of ravenous alligators with my hair on fire.

Heading into the (first) stretch of healing, I’m still in the grip of the side effects:  Poor appetite, food that tastes like something between boiled cardboard noodles and fried dirt pancakes, liquids that swallow like a gritty burnt milkshake, and fatigue that hangs on me like a torn curtain in a half-collapsed proscenium (too much metaphor? Me, too, but I’m all about indulgence when I can get it lately).    

A better one might be that I feel like an Energizer tortoise in a fluctuating battery charger.

Or a rusty propeller beanie.

Or a clam.

Do you get the feeling that I’m trying to play for time?

I have noticed that I latch on to things now that feel like sources for hope and healing. Odd things. Pre-cancer, I wouldn’t have been so open for inspiration and deep meanings, but this disease does have a way of rerouting thought processes, even the ones that I long thought inflexible, if I thought about them at all.

For example, this pic of my dahlin’ Diane just … eking out ... a couple inches more height than our garden zinnias, and they’re not through growing. Why does that now seem so significant to me? Well … if a flower can thrive and grow high as my sweetheart’s eye, so can I.



Or, when I spotted this truck in Wells River, Vermont.  Why, if Man can make a truck run on wood, I can make my body live without cancer. 

Weird logic?

No doubt, but I like thinking of it that way.


Or, this bedside night table that I now deem an insomniacal survival kit: Two water bottles, a back-up ginger ale, a radio-clock, reading glasses, a New York Times Sunday crossword puzzle book, an antique heirloom stained glass lamp  and a white noise machine.


All directed at enhancing the healing.

More as we go, El













Wednesday, August 29, 2018

DAY 043 -- "Facing Away From Me"



I can’t remember where I first heard it, (maybe I said it, but I don’t think I’m that witty), but it stuck with me:

“I’m not hungry. All I wanted was a cup of coffee and a fork.”


So, when I saw an opportunity to report one of my favorite jokes visually, I tried. There’s something about that sentiment that suits me right down to my hospital slipper-socks. Yes, it’s just plain funny, but it’s also how I’ve tried to move through cancer:

The right nourishment? The wrong utensil. The right game? The wrong ball. The right vehicle? The wrong map.

The right map? The wrong directions.

Woosh! We could keep going and wring that metaphor dry, which any nurse-humorist is wont to do, but you’ve suffered enough with it.

Instead, I could write about how my body-healing is progressing (my brain remains to be seen), but these two pics will do it better. If I was in my nursing element charting on myself, I’d be recording the:

--- size of granulating surface area and the beefy wound bed

--- slough and epithelial appearances (staging the wound)

--- length, breadth and depth of wound

--- status of wound edges

--- type and amount of drainage


--- signs and/or symptoms of infection

--- odor

--- reported level of pain

--- patient’s favorite cruising songs

(okay, okay …  just checking to see if I’ve lost anyone).


As a patient, however, when I look at these comparative photos, I don’t see centimeters and exudate, Wong-Baker faces or proliferative phases, but rather a hot-diggety damn, a yahoo, an ain’t-that-a-pisser, and a guarded but firm woohoo! with a yippee! in reserve.

Now, I’ve saved the last for the best, a photo to represent hope and healing and (dare I say it) even the possibility of one day returning to life as a life, not an experiment. A field of bountiful sunflowers bright and full, but facing away from me into the sun.
That will do just fine as my new theme music, for now.

More as we go, El



Sunday, August 26, 2018

DAY 042 -- "Squatting Elephant"

Blogger’s license: A few chronological days have sailed past us without me. They were lost at sea. Let’s let them go quietly.


A most precious thing wrapped me up today: a call from my daughter.

Dahlin’ daughter Erin called to give me a report card of how she spent her summer working vacation as a camp teacher in the performing arts. I gave her my report on how I spent my summer AS a rookie performing artist on the center stage of science in my body’s theatre of the absurd.

Ba-da-bing. She knows what that means. She grew up around my sense of humor.

We agreed to share our anecdotal finer points at our next visit, which will have to wait a while longer. Right now, I’m supposed to be resting, avoiding people, and focusing on good nutrition, hydration, and all the positivity I can muster. I love you, too, dear daughter, and thank you for lifting my spirits, as you always do.

But, I’m working hard on the positivity because I know how important it is. I know this from thirty-five years of providing bedside nursing care, which I believe I did well, and forty-two days of receiving it, which I haven’t done well at all.

For me, the biggest hindrance to my healing is me (this is true of most of us in the health care field. No, we’re not selfless heroes, but caring for others and saving ourselves for last is simply how we help fuel the world).

In these first weeks of cancer treatments, it’s been all about the ebb and flow of good days and bad. Tonight is bad, piling up on me --- all the swelling, burning, choking, bruising, vomiting, and pain that this body has never known to this degree (I’ve seen it and assessed it and charted it in other bodies, but never felt it in mine).


Every day, as my self-triage takes another spin of the wheel, I never know which side effect losing number will come up.

Yes, I have plenty of targeted pain management interventions at hand which make all the above at least tolerable, but because “every form of refuge has its price,” and because medicine should adopt that as Part B of the Hippocratic Oath, the side effects then have side effects of the side effects ofthesidedeeffects--------

But, wait! Now comes the big top tent of Rad Chemo, and it’s taken over my midway: fatigue.

F.A.T.I.G.U.E.




It’s all-consuming. It’s concrete shoes in a swamp. It’s a chainmail overcoat. It’s a lead barrel full of anvils. And, like the pains generated by this disease, it’s another siege that I’ve never experienced in me, only witnessed in others.

But, now I know.

This is the sixth day I’ve tried to write about why I couldn’t write about it. When this cancer treatment fatigue moved in, my muse, my best intentions, my grit, my energy, were all washed away like a sand castle.

Some of my cancer course has been “normal,” if there is such a thing. Everything the Docs said would happen to me has happened, but some of what they said might happen, hasn’t (so far). At least not according to the textbook cancer timetable.

When it comes to illness, we each have our own season tickets. Some games we play at home … and some are away. (That may be the best metaphor I can pluck from this fatigue).

I’ll do my best to get back on track, soon as I get this squatting elephant off my chest.

More as we go, El



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