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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



Sunday, August 19, 2018

DAY 041 -- "Warming The Bench"


Today’s cancer quiz. This picture is:



A. An ocean floor view of Montezuma’s String Kelp, found only in one remote northeastern Atlantic location.

B. The moment that the new patented rolling-soap soft bristle car wash brush was about to contact my windshield for the first time.

C. The first photo ever taken of the edge wall inside an F-5 tornado.

D. A sunrise drones-eye view of Prickly Prairie Grass.

E. A super close-up of B. Elwin Sherman's returning head hair/fuzz.

A wonderful quote today from the late Buddhist practitioner Rick Fields: “I don’t have a life-threatening disease, I live a disease-threatening life.” Thanks to my friend Mitch Eagan for forwarding that to me. For the record, Mitch is the only person I know who copyrights his garden vegetables.

I confess that until I read that, I just hadn’t thought of my life as the offensive team captain playing in the Superbowl of Me vs. Cancer. If I thought about it in those terms at all, then I was hitting the ground limping and warming the bench as a third string defensive outside linebacker.

It’s changing the way I’m playing this sporting life.

Most times in this multiple-choice life of ours, a football metaphor will do nicely.

So, I’m taking the day off to watch baseball. The cancer will have to wait (see what I did there?).

More as we go, El




Saturday, August 18, 2018

DAY 040 -- "A Hitchhiking Ogre"

Home again, home again! 



If it’s all the same to you, I’ll reserve the “jiggety-jig! part of that rhyme for when I’m back on the Harley with Diane.

Yes, I was sprung from the joint today! (I did this yesterday, beginning my Day 039 entry with dated gangster slang. Don’t ask me why.)

As a general rule (no, as a very specific rule), it’s a good idea to go home from the hospital asap. When you (and your doctors) determine that everything they’re doing for you in the hospital can be done at home? Vamoose!

Please don’t read that wrong. I love hospitals. I love doctors. Not all of either, but I've spent much of my professional life in those rooms and hallways. But, it’s also where the nasty little germies are. Who hasn’t been in a waiting room and looked and listened around at your fellow sickies, often an elbow away. Coughs, sneezes, and who knows what lurking on their surface areas or flying around the room.

No one should enter a hospital without a mask (Also see Day 039).

No, I’m not a germaphobe; I do go out amongst us on any given day without any sense of doom, but I’m also a realist. There may be sick people in a restaurant or a supermarket, but you KNOW there are sick people in a hospital. I mean, there’s that infected elbow, brushing yours …



Man, what a digression. I'm sorry. 

I didn’t get cancer from a contagious waiting room elbow.

But, I’m home with some new post-treatment rules, meds, directives. I’m in the grip of what many have told me will be the hardest part of this protocol, because the effects of radiation and chemotherapy linger and work beyond their cessation, so I’m still in suffering the side effects mode. This picture was taken this morning. Enough said there.

So, I’ll need a couple more weeks to come down from the hovering highs of low blows, then we’ll see what we’ll see next month back in scanville.

That’s what’s in my brain today:

After weeks of harsh daily insults to this body, what will they find in the follow-up diagnostics? Did it work? Did it half-work? Is the cancer gone? Is it lurking in the lymphs?

I’ll have to carry those unanswered questions around with me for a while.

This is turning into a long road trip with a hitchhiking ogre in the passenger seat, and dammit it's going where I’m going, and it's eating all my snacks, and it insists on telling me horror stories. And now that we’re well down the road, I have to learn when to take the wheel, and when to let it drive and refuel while I rest.

More as we go, El



P.S. Oh! And I mentioned scalloped potatoes in yesterday's entry, and when Diane brought me home today, she had homemade scalloped potatoes waiting. I'm a lucky man.






Friday, August 17, 2018

DAY 039 -- "A Mix Of All"



“Listen you mugs: another day in the Big House, but me and Bugsy are bustin’ out.”

(Sorry, but I just never had the nerve to write anything like that. It’s liberating.)

Diane was here this morning to join me in my masked seclusion. Misery loves company, but so does joy.


Tough day today after she left, and I dragged my brain into this. Just when I think I have my mental house in order, a blip or two pops up on the screen. Sure, it was another day of diagnostics, prognostics, and pureed coffee, but I let my guard down and the emotions in. Not a good idea.

The old standards apply: Thinking with my head, my heart or my stomach? It makes a difference in how we problem-solve, how we cope, how we imagine. Today my head did the driving for a while, when I lingered too long with why this bad break I’ve been given. It's not a good question to ask myself on a bad day.

Don’t get me wrong: I’m a big fan of emotion. My wife’s cats and some of my best friends are emotional, but drawing only from that wishing well is just as bad as thinking with any other disaffected organ. The best results come from a mix of all. It’s a system of checks and balance that we all use, even if sometimes we’re not aware of it.

Okay, enough hiding in the language. Just what is all this high talk about? Bottom lines:

I feel that my body has betrayed me, and when I confine myself to coming at life from that angle only, it’s hard to have any forward motion.

True enough, my throat is painful, my burn is painful, my swollen leg is painful, my intake and output are inside-out, and I’m so tired of being tired and not having just one day (out of thirty; I won’t be greedy) when something wasn’t hurting.

Just once on one day, when someone asks, “How are you?” I want to be able to simply say “Fine. And you?”

Today, life was like this plate of pureed potatoes, pureed beets, and pureed hot dogs. (No, I’m not complaining and I'm not being punished. I just must eat this way until my throat clears, and the food, even mooshed into oblivion like this, wasn’t bad.)



 But, on any regular diet day, I like my potatoes scalloped, my beets pickled and sliced, and my hot dog in a bun.

More as we go, El



Thursday, August 16, 2018

DAY 038 -- "The Better Puzzler"


It was a dark and stormy night, when too many breakdowns moved in, enough to warrant a trip to the hospital: nausea, vomiting, fever, edema, pain and oppressive fatigue.


Even the baseball Gods were co-conspirators, starting the BoSox game at the same time I was on my knees with my hurling head hovering over the great white porcelain fixture.

So, off we went, with Diane scooping up the essentials for what would surely be an overnight stay at the hospital for both of us: change of underwear (remember what your mothers said), the usual toiletries, some hard candies, phones, tucking-out the cats, and operating on the assumption that I would be admitted, and she would finish several NY Times crossword puzzles.

Yes, my Rad Chemo treatments had both ended two days before, but I’d been advised by everyone that their side effects would go on for some time, perhaps weeks, and that they would get worse before getting better.

Okay, I’m ready. I’d thought. I was thinking that, when worse came through the door.

The nausea/vomiting was toilet bowl huggingly bad; I was feverish, the mysterious new edema in one leg, foot and ankle was bad enough to cause a limp, I could barely swallow, and the little bit of attempted supper with real food (non-liquid) had been negated when it found its way back to the atmosphere. I was malnourished, dehydrated and sick as a cat.

Blogger’s license: I’ve always thought that ‘sick as a cat’ conjured up an unmistakable image of hacking and target vomiting, but ‘sick as a dog’ could mean anything from fleas to mange.   

No. Yes. I was cat-sick, and off we went to the Emergency Room. To make a long story palatable, several hours later I was admitted, Diane had finished her puzzles and unfolded herself from the world’s most cringe-worthy chair.


Right now, it’s the end of the next  day, and Tug the Robot Messenger beeps his approaching" Crossing Hallway" warning as he passes by outside my room. This is as it should be, and it looks like I’ll be holed up here for a while as we all once again find our way through the maze of medicine in that way medicine has, of not so much determining what it is, but what it isn’t.

As of this swallow, we’re working on finding what isn’t causing my edema, what didn’t spike my temperature, and who isn't the better puzzler in this family, me or Diane.

I’m thinking that lately I’ve become the source of more empty letterboxes than her, but with me also providing the clues, her filling in the verticals and all these clinicians tackling the horizontals, we should get the puzzle done.


More as we go, El





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