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Friday, March 8, 2019

DAY 063 -- "One Woman's Cat"




I now have a wife who has both a husband and a cat with cancer.

I’ve noticed that she shows her affections using the same words and gestures one way with her sick cat Comet, and different ways with me.

Wait. That’s not true. They are the same differences.

Every life story has (or should have) animal elements, preferably where simple visuals define all of that story’s easiest and hardest of times. Like this one with Diane.

Or, this one: another cat reclining on the front porch: contemplative, reconciled, lying outside a normal door used for this life’s normal comings and goings.

But, handy nearby, there’s also an urgent, makeshift abnormal door clawed and pushed through a screen, for use when that easy, formal normal door just won’t suffice.

It’s a portal that now lets the good in and out along with the bad (more on this soon).

Plan A. Plan B. Done.

(Dog people may substitute their comparable pooch pics here)

Follow-up today at the infusion unit for first bloodwork since my last first new chemo treatment (see Day Sixty-Two).

After chasing my dehydrated rolling vein for a puncture or two, we got a successful draw. Then, it was wait for results and a visit with my reviewing oncologist.

Time to pass the time with crosswords, practicing my what-me-worry look, and checking my must-say list. As a nurse, I’ve always advised my patients to make a list of questions, concerns, dirty jokes to tell the visiting docs, because too often we’ll forget and remember too late what we wanted to ask them, especially if we’re in high-stakes medical mode (See Day Fifty-One).

As a patient, I do try to listen to myself and today I’ve written a short list:

--- I’ve lost a few pounds in the days since Day Sixty-Two. Food has returned to tasting like boiled cardboard, blunting my appetite. You already know what that spiraling, descending circle of diminishing returns means, so let’s try to keep it down.

--- I had one entertaining episode of nausea/vomiting on the third day after my infuse-o-rama. (If you need more description than that, revisit Day Nine.) I restarted the anti-nausea med, and it's kept my innards in line. If I heed the signs, I can see me coming and head me off at the preemptive med pass.

But, the problem is getting stomach and brain to buddy-up when nausea/vomiting is lurking, even if I can control it. The brain still becomes an anti-hero and pulls the stomach away from the table.

We may not live by bread alone, but every road trip meal welcomes a traveling companion for some destinations, even if it is a hitchhiker with no gas money (I know you expect me to strain a metaphor on occasion. You’re welcome.)

--- For a few days after Day Sixty-Two, my rashes and itching subsided drastically, but they’re returning. Itch, scratch, open sore, rinse, lather, repeat.

--- My “trigger finger” fingers also disappeared for a few days after treatment, but they’re back as well.

Oncology Doc arrived with the lab results. I read him my list, and we met minds on the interventions: med for nausea, ointments and anti-itch med for skin, and postpone my decision for now on whether or not my claw-fingers will interfere with Harley throttling, clutching and braking.

We then went over the numbers. No terrible news, but one noteworthy (and expected) change:

“You’re a bit neutropenic,” he points blankly.

“Oh, Doc, you say the sweetest things.”

But, he speaks this way to me knowing my vocational background and the knowledge-is-humor-is-power guy thing I have going on. We’re both at our ease with doctor/nursey-talk.

My neutrophil count is low. Neutrophils are white blood cells. They’re essential in helping to fight infection. The drugs I’m taking fight my cancer but also weaken my defenses. This irony is a bittersweet theme with cancer and cancer treatment, and in fact is found everywhere in medicine and its screen door folklore:

It has to taste bad to be good.
 
The cure is worse than the disease.

One woman’s cat is another man’s cat.

More as we go, El




Monday, February 25, 2019

DAY 062 -- "Yummy Bennies"

I really didn’t mean to begin this with a pic of me wearing a conforming tubular stretch dressing on my head, but part of my job is to get you to laugh at my expense.

The “Spandage” is meant to be applied on an upper or lower extremity to make dressing changes easier and more comfortable for the patient. I maintain, for the sake of a cheap laugh, that my head is also an extremity, and today I had a comfy head deficit.

Diane laughed and my nurses became even more convinced that I'm a little weird (mission accomplished). She told me that I looked “like a life-sized adult Kewpie Doll, with loosely on the adult." No debate.


Back to the infusion suite today. Isn’t that a lovely moniker? Sounds like hospitals could and should also have Pediatric Penthouses and in my case, Chemo Crashpads).

Today’s news: My recent lower region CT scan showed nothing, and with apologies and homage to a favorite film’s fictional Lucas Jackson: "sometimes nothing is a real Cool Hand." (If you’re a movie buff, you’ll know.) So …

The good news: my original lung tumor is “a bit better” and there’s no other apparent spread to my southern body biospheres.

The bad news: there’s a “slight increase in my mediastinal lymph node.” The doc also told me there was some “consolidation therapeutic effect” resulting from these past weeks of immunotherapy infusions with Imfinzi. I asked him what that meant in simple English, and before he could answer, I pre-interrupted him: “Oh, so it helped beat my tumor like chicken soup helps beat a cold?”

“Something like that,” he conceded.

In medicalese, if you insist: Imfinzi -- still very much a whole antibody drug used less than two years in the field -- is the current drug of choice for people who meet a fairly strict cancer criteria and treatment, like mine. So, no harm done, and only marginal healing in the works, but still worth the ride, with perhaps even long-term rewards yet unknown.

Today, we began a new treatment regimen. It will consist of an infusion course every three weeks for three months (sounds like high-end sweet dessert dining: “And for the infusion course, we have a chocolate chemo-ganache tart, or an immuno-orange cake.”).

Today, intravenously, in one sitting, I received seven drugs in five classes: an anti-itcher, two anti-emetics, an anti-inflammatory, two chemos and one immuno.

You demand to know names? I know there are word puzzle people out there reading between those hands, so let’s save time.

I’m home now, my bloodstream packed with a hefty intravenous shot of:

dexamethasoneodansetrondiphenhydramine
pemetrexedcarboplatinpembrolizumabfosaprepitant,
 with a Cyanocobalamin chaser.

(If I didn’t lose you with that one, my dear reader, you have more curiosity grit than your host).

Before I left my Chemo Crashpad, a new patient entered with his caregiver. She was carrying sugar cookies made by Cakes By Amanda in Barre, Massachusetts, for the staff and patients. I promised her friend a pastry plug.

Not only were they clever, funny and Caduceus-friendly, they were sweet eats.

Sometimes, cancer has yummy bennies. Thanks, Amanda.


More as we go, El




Sunday, February 17, 2019

DAY 061 -- "Fella Or Stella"


I’m back from brain irradiation.

It was close to a replay of the rad treatments I had to my chest/lung tumor. Two of the original Radionettes were there  (See Day Three), and two had moved on to other afterglow pursuits. I was again offered a choice of music to be played during the session, but this time I opted out.

I thought of requesting “If I Only Had A Brain,” but I didn’t want to add sublime to the sublime.

No, for some reason, this time I wanted the pure deal: unfettered, no distractions, no place to file my fear, no easy-out refocuses. Nothing but me and the slow-revolving click-humming appendages of the linear accelerator.

Nothing but me being escorted around the maze-gate hallway corners into the chamber (feeling like a dead man balking), then up on the table, the Radionettes milling around me, gatching my knees, clamping my head down, the bright targeting pinpoint lighting, the multi-leaf collimator and the slow-rolling arms of the isocentric gantry as I underwent the fractionated stereotactic radiotherapy to my right cerebellum.



Strapped, wrapped, mapped, tapped and zapped.

Now, here I am. Next day. At breakfast with Diane:

Diane: I have rhyming names for your brain tumor: either Cerebellar Fella, or Cerebellar Stella, if it's a girl.
Me: Uh ... but, how will I know if it's male or female?
Diane: Same way you know if I'm male or female.
Me: Bacon with your eggs this morning?
Diane: Exactly.

In two months, we’ll have another MRI look and see if Fella or Stella died for my country. Meanwhile, we’ll be starting another round of immuno- AND chemotherapy, with concurrent infusions every three weeks times four of Keytruda, Carboplatin and Pemetrexed.

It must be obvious to you that I’ve been blessed with a brilliant metaphor for a cancer baseball season with my personal shortstop Tinker Keytruda flipping it to second base Evers Carboplatin throwing a strike over to first base Chance Pemetrexed on defense.

Looks like I’ll have to play offense a while longer.


More as we go, El





Monday, February 11, 2019

DAY 060 -- "Wondering Whereinhell The Half-Inch"

Tomorrow, we irradiate my brain.

This week we made the head mold that will hold my head immobile. It was a lot like having a hot hockey mask stretched over my face, then being strapped into a broken kiddie ride at the carnival. It was very much like that. It was exactly like that, and I also now know what a beard depilation is.

Sorry, but I imagine this treatment as fare on the a la carte menu at an eatery from a future century:

“Yes, waiter, I’ll have the irradiated breakfast brain special, please. Over easy, no toast, and a side of potato skins, not too crispy.”

This will be a one-shot radiation procedure. After that, we let my cerebellum simmer and return to a systemic attack on the leftovers in my chest with concurrent chemo- and immunotherapy courses.

No, I don’t know why I’m making all this one big food metaphor.

It may have something to do with how I sometimes sup at the Michelin three-star restaurant on the avenue of what I think, and other times pig-out at Big Skinny’s greasy spoon diner down the back alley of what I feel.

Or, it could be because having both an enlarged cancerous lymph node in my lung and now a pop-up tumor in my head is like … like … walking an endless mezzanine toward an unattended, locked and understocked food cart.

Meanwhile, as I meet with my neurosurgical oncologist or my radiation oncologist or my Harley dealer (just checking to see if you’re still with me), it’s clear that I am in the best hands in the business.

The Docs may all look like Doogie Howser, but they talk Einsteinian, way beyond my practicing ken. Still, I have years of field nursing experience, much of it in hospice and eldercare, and I’m able to dumb-up enough to understand what’s happening to me.

And --- maybe what’s more important in living with cancer --- what isn’t happening.

I do have fun in the waiting rooms, and had the pleasure of being served by a wonderful soul who came by with her "harp cart," and applied her art/science “reverie harp” to my skull.

Perfectly-named. She will get full credit for fixing my tumor when the day comes, along with the Rad people. Pentatonic scale, penetrating vibrations, smooth grooves --- Ahhhh!

In the examination rooms, I’m having fun going through the cabinets, playing the placarded anti-superhero, or measuring myself and wondering whereinhell the half-inch in height I’ve had all my adult life has gone.
Is it the hospital slippers? An old-man sag in my spine? Am I slouching? Did I have bigger hair before I lost it and it’s come back smaller?

 No. Whoever installed the wall measuring stick wasn’t a finish carpenter. Yeah, that’s it. I’m fine and the world is all wrong.


(Tomorrow I’ll flip that sentiment, but right now it’s getting me through today).

More as we go, El





Monday, February 4, 2019

DAY 059 --"Humor My Tumor"


It should’ve come as no surprise to me that the location of my cancer metastasis is in my cerebellum, and on the right side, no less. Yes, it’s visible in this scan, but let's wait for the results of this game of disconnect-the-dots before we point out where.

(If you're a brain surgeon, no fair calling out!)

The word itself, from the Latin, literally translates as “little brain.” Perfect. I’ll be needing my big brain later for other things, should the future challenge my past to a fight.

The cerebellum was discovered and named by Leonardo da Vinci. Some evidence suggests that he may have “borrowed” the name from Aristotle, but I can forgive what might be a millennium-old plagiarism long enough to revel in such celebrated company.

The problem is, there is no good rhyme for cerebellum. Don’t bother looking it up; I searched everywhere, and the deeper I delved the further away I got. The auto-rhymers provided nothing that matched sound and inflection exactly. The closest I came to it was “merit heaven.” (I suppose that could come in handy later, but it’s still clunky).


It was only my writer’s license that spurred me on, but it went downhill from there. When I got to “bare bottom” and “a gentle hum,” and my favorite but egads “mare serum,” I gave up. I left my quest, however, feeling rather special that a cerebellum has no exact textual doppelganger.

Makes me want to start a living cerebellum poets' society, or at least a support group for those of us with disaffected cb’s.

The last thing, as we’re now compelled to look at this whole thing from my pulp non-fiction angle, is giving my head-in parking rascal a moniker.

My lymph node lung tumor, as we know from our reading, has been “Rad Chemo.” But, now this renegade hiding in my hindbrain’s discordant cranium’s accordion creases? (If we can’t have good rhyme, we can at least abuse some alliteration).

I will put this to my friends and relatives on social media: Yes. That’s it. I’ll have a “Humor My Tumor” contest. My contacts are clever and fun and dark and devious --- just what this name-calling will need. Winner gets … well … we’ll think of something, and let's leave my merit heaven out of it.

More as we go, El





Wednesday, January 30, 2019

DAY 058 -- "Alas, Poor Elwin!"

I couldn’t make this up, but if I could, I would do it like this:

There I was in the examination room counting ceiling tiles and not scratching an itch, when my radiation oncologist walks in lugging what struck me as the most infamous cranium in all of literature under his arm. He smiled, sat down, and my first thought was:


Uh-oh … any second he’s going to tell me that because he moonlights at the local community theater where he’s the understudy for Hamlet, and he’s just received an emergency casting call at the last minute to perform tonight, would I mind if he used the time to practice his soliloquy from the graveyard scene?

“Alas, poor Elwin! I knew him, Horatio: a fellow of infinite jest, of most excellent fancy!”

The truth, which is often much less entertaining, was that he’d brought in his cancer patient show n’ tell anatomically-correct demo skull, complete with detailed facsimile rubber brain innards, all sectionalized, to show me, if I wanted to know, exactly where my right cerebellum tumor was.

Right about there, I turned my excellent fancy and infinite jesting back to reality and we had a stress-relieving laugh (my stress, anyway). Then on to the main event:

Without wallowing in a bog of filler material, it looks like we’re going to proceed with, yes, a course of stereotactic radiosurgery. Sounds rather like a military operation, eh? “Alright, drop your meat, grab some heat and saddle-up, sergeant! It’s time for Operation Stereotactic Radiosurgery!”

(I think Operation Hot Bot would’ve been mas macho, but I can’t compete with my own imagination.)

Cool! This means next week it’s back in the terrible tube and I get a repeat MRI, this time emphasizing more sagittal versus axial planes. Ahem, at least I think that’s what he said. As you know from our history here, whenever I’m distracted in the grip of an Alas, Poor Elwin! mode, I will often mis-hear things. He might’ve said chewy caramel versus chocolate centers, but I did get the gist of it:

New Plan: lung tumor in the back seat for now. Brain metastasis takes the wheel. And, they'll give me nifty new treatment anchor headgear that I’ll get to keep and bring out later at parties and airports and Halloweens.

But, this means a re-routing of things: different scheduling, applications, side effects, and a new drug that acts more systemically than locally on my Candyland blood-borne gumdrops (oops … you see … I’m drifting again).

I left there today feeling like I was torn between two elevators: one for the brain, one for the body. So, screw it; I took the stairs.

And, as if you needed more comic relief (I always do), while waiting for the doc I spotted a jar on a shelf across the room. From my vantage point, the label looked like it read: “Feces.”



My logical brain (now suspect, but still mostly intact) and my decades of nursing savvy knew that the jar did NOT contain out-in-the-open poops, even though all the evidence, including the jar’s chunky contents, sure looked like it did.

Can you blame me for having a moment of fearful umbrage flirting with confused panic?

It lasted until I went over for a closer look: The entire label read “Earpieces.”


More as we go, El





Saturday, January 26, 2019

DAY 057 -- "Into The Brain"

This week, I’ll be back at Rad Chemo Central, where you and I spent a few weeks darkening in the light a ways back.

Now that the recent MRI of my head found a new cancer (see Day 56), we have to shift from lung to head for the moment, hoping that the new affected lymph node in the lung treads water, or at least doesn’t sink further, as we get into the brain.

Yes, yes, yes ... we all know how surgical resections, stereotactic radiosurgeries and fractionated radiations work (if we don’t, not to worry, we didn’t know either until we checked), but we also can’t help getting clobbered with answers like the following, if we’re bold enough and curious enough to stand and deliver the questions into their line of fire:

“Unfortunately, in most cancers, once a person develops brain metastases, the tumor is not curable. With current treatments, patients can live from mont---"

Right about there is where the mind stops processing the spoken word into sensical sounds and written text into understandable language, and everything coming at us looks like flaming spears and sounds like screaming meemies.

(Yes, I had to look it up, too, just to sidetrack my brain long enough to stop vibrating and come back to front and center. A screaming meemie was originally a WWI artillery shell that sounded like … well … a meemie screaming. You’re welcome.)

The point is: our imaginations, when driven by anxiety and worry, are capable of so much more than simple reality. In literature, this is what makes great fiction.

In real life, this is the stuff of non-fiction nightmares.

Still, the editors and publishers of hope and optimism also have their sub-stations in our thoughts, so if we’re lucky, we can at least tread water (remember that dog-paddling tumor up there?) until everything gets to dry land.

Sigh. Here I’ve gone again, abusing my writer’s license and bracing against a pre-whirlwind of metaphor enroute to the calm before my pending brain-storm, unable to even get out of this sentence without mixing one. I’m not apologizing.

More as we go, El


Tuesday, January 15, 2019

DAY 056 -- "One Incomplete Sentence?"

MRI (Magnetic Resonance Imaging) today of my brain (or what’s left of it after surviving decades of sex, drugs, rock n’ roll, Hula Hoops, Richard Nixon, Silly Putty and lots of eldercare, hospice and other bedside nursing care disciplines.)

Speaking of humor, my Docs ordered the MRI after finding those cancerous cells (See Day 055) active in my world-premiering lung lymph node --- cells that weren’t there three months prior.

I’d been through the MRI tube o’ terror before, so I was ready going in: pre-medicated with a hefty dose of benzodiazepines, comfy sweatplay pants, a pair of xxx-large hospital Pillow Paws booties and a johnnie gown Baby Huey could swim in.


The MRI tech/nurses were built for comfort and speed but also slow-going when needed, and with me today, I appreciated the crawling pace they used helping me to get my mind right for that crawling space they knew I dreaded.

If you’ve had one of these tests, you know the drill and you can skip along until the text starts to feel new again.

If you haven’t … well … hmmm … how to best describe getting an MRI of the brain in one incomplete sentence?

Supine on a hard table, head in a mold, arms pillow-propped and positioned, legs/knees blanket-gatched, heated blankets applied, earplugs and headphones placed (one for songs, one for silencing) IV for contrast medium inserted, and all fine until the Hannibal the Cannibal hockey mask is clamped down over your face.

But, luckily, because I’d already experienced the hostile arms of the horizontal Iron Maiden once before, I’d insisted on getting my mind right ahead of the procedure (per Dr.’s Rx, of course). I’d wanted and demanded to be stupefied with tranquilizers. If they’d slipped me inside that raucous, vibrating squeegee sleeve chamber without my pharmaceutical friendly fire, I would’ve freaked out.

Another fast forward (I’m assuming this is a recreational read for you, so I’m trying to keep it moving): Forty minutes later, after a couple of ins and outs for logistical tweaks, and several slam-banging mechanical interval audioblasts, tolerable (doped or not) only because they were somewhat muffled by the headphones, I was sucked out of the big plastic donut hole of death intact.
  

Later, in his office for the preliminary review of the results, my oncologist, to his great credit, managed to not suppress a laugh when I told him my best doctor joke.

I told him right after he told me that yes, he’d just consulted with the radiologist, and yes … I did indeed now have cancer in my brain.

So, I caught him flat-footed and responded by asking him before he knew how not to react, if he’d ever heard the one about the difference between doctors & lawyers?

“No?” He said, unsure of where it was going, and with me knowing that he’d never heard that old chestnut.

“Lawyers rob you,” I said, “but doctors rob you and kill you, too.”

He laughed frowning, then laughed grinning. My mission accomplished. It’s my goal to be an exemplary patient.

So, today, anti-heroes that we are, we went looking for any renegade cancer cells which may have scaled those cellular walls, broken out of the host prison on their own, and headed out on the lam for who knows where.

Trouble is, we found ‘em, right where we’d hoped we wouldn’t: in one of my head’s hideouts. Yes, we’d hoped to find nothing in my head, but hope springs. Best leave the rest of it there.

Now, I’d sure like to know who provided the getaway car.

When we thought the cancer was only in my chest, the course to healing was clear. Now that we’re faced with outliers, all the treatment options must be revisited.

Surgery, radiation and chemo now will be shuffled into spaghetti strand degrees of optimums, maximums and minimums, tossed against the wall, and we’ll see which stick.

Of course, there’ll be a bit more applied science than that, but I can’t resist a juicy metaphor.


Then, as we’ve gone thus far, there’ll be more as we go, El




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