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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





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