Time out of this diary for a note-worthy flashback:
I wanted to musically (and raucously) make an audio interpretation of what happened inside my head when I was told I had cancer this year.
There I was, boogie-bluesing along nicely in life, la-dee-do-dah, when ... POW! I have WHAT?
(Not to worry, I'm mostly back in my groove now, but my internal tunes did go off the rails for a while, and there just might be something to knowing how to play it right before you can play it wrong. I don't think Picasso could've gotten away with sticking an elbow out of an ear unless he'd first expertly placed it in the middle of an arm.)
This is also dedicated to dahlin' aerial-dancin' daughter Erin Lovett Sherman. When she was little, she thought I was Jerry Lee Lewis. Ah, the innocence and purity of youth. Enjoy!
Sunday, December 30, 2018
Saturday, December 22, 2018
DAY 053 -- "No Floating Pea"
I watched the Doc sift through the slices of my innards imagery,
reviewing the results of the PET scan. When he nudged the trackball, dimensions
of my organs and all their connective circuity flowed in and out like beach
waves.
He gave me an analogy of a pea floating in soup, and because my
attention span warps when it’s stressed and in the grip of my overactive
imagination, I heard it in pieces. What did register and take hold in my head
was that it’s better to have no floating pea.
My original tumor (soup) appeared to be pea-less. Good news, but
the appearance of this new pesky lymph node seen in my recent comparative CT
scan, remains the bugaboo.
Is it scarring? An anomaly appearing now as collateral damage from
my course of Rad/Chemo? Is it a threat? Malignant? My Doc, in consult with his
fellow oncologists, wants to get the biopsy as scheduled “to know what we’re
dealing with.”
The image was ominous, a skyscape of jutting and sloping
contrasts, rows of little devils moving through weeds of thick--- oh … wait ….
Even cancer sometimes needs a comic gotcha headbutt when you're looking the other way.
Meanwhile, back at the rest of my other whole body, he was pleased
that I’ve dropped a couple of pounds, that I’m using the new elliptical, eating
better, not quite as fatigued, and not picking at the sporadic and migrating skin
eruptions. The latter is difficult, because when I was a kid, I kept a scab collection
in a jar. It was fun looking at scraps of me flitting around in there when I
shook it.
Later in boyhood, I added some dead moths for balance.
I had the same feeling today watching him scroll through my sub-layers,
though he presented them with a bit more diagnostic sophistication.
We did review my list of side effects (from Day Fifty-One) and he
attributed them to the illness, the treatments, aging, a thousand or so other
possible causes, and the maladaptations that can come with healing. We tweaked
my uses of lotions and potions to ameliorate, perhaps even eliminate some of
these sideshows as we continue this grand experiment.
Today, I’m feeling like what happens when Frankenstein teams up
with Monty Hall in the funhouse mirror.
Somewhere in here, I'm behind one of those doors.
Somewhere in here, I'm behind one of those doors.
More as we go, El
Sunday, December 9, 2018
DAY 052 -- "The Usual Posted Warnings"
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.
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 once drove 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've stayed 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:
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.”
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.
And my breathing goes heaving.
Or my cough won't bugger off.
And my boweling needs troweling.
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.
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 raisin.” 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), 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 raisin.
My “Then” dragon’s foot claw, and my “Now” shriveled raisin.
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 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,
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.
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.
Subscribe to:
Posts (Atom)
Most popular posts (so far)
-
This day’s entry should be the longest, the most intricate, the most telling of everything we’ve been through to this point, but it might ...
-
Pow. Severe chest pain. Off to the Emergency Room. No kidding, there I was in patient mode, sitting on the butcher...
-
Triage. Simple definition? “The assignment of degrees of urgency.” The core of my professional life in medicine has always b...
-
Today? Four little words, hitting me with almost the same impact that seven big words did this past July 1st (See: Day 001 – The Arriva...
-
A return to the road to forever and a day today: back to my IV infusions, resuming an amended chemotherapy regimen, now minus the immunoth...