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Tuesday, May 7, 2019

DAY 066 -- "In The Bendy Place"


A return to the road to forever and a day today: back to my IV infusions, resuming an amended chemotherapy regimen, now minus the immunotherapy drug Keytruda (see Day Sixty-Five). On this leg of my relay race with me, we’re passing the healing baton to Carboplatin, Pemetrexed and countless social media well-wishes, prayers, attaboys and pagan dances.

Today I felt like a medi-pop upright bass player student intruder at the A Cappella Academy For Unwritten Notes.
Question: as a seriocomic aside, whoinhell NAMES these drugs? Answer: the drug companies who make them, of course, and they are “reluctant to share their strategies,” on how this is done.
Fact is, they pay big bucks to very smart consulting folks who are part wordsmiths, part sorcerers and part Dr. Frankensteins, to come up with them. It’s no accident that a drug name hits you subliminally and often just plain hard-headedly, by tapping into images and emotions the carefully chosen suffixes and prefixes provoke.
They use everything for these name-naming assignments as resources, from thesauruses to country kitchen recipe books.
Examples? “Flovent,” a respiratory (air) drug. Bring anything to mind, like “Flow” and “Ventilate”? Simple but genius, rolling off the tongue into your lungs and pocketbook.
Or, how about “Lopressor," a drug for hypertension. Again, brilliant simplicity. If your brain doesn’t hear “low pressure” when it sees that name, then you’ve never been squeezed by a sphygmomanometer.
Or, “Almotriptan” (a real drug used to treat migraines). You know it without knowing it: You almost got a tan on your last trip, if you’d only taken your anti-headache pill Almotriptan. (Okay, I’ll stop).


Meanwhile, back at my perception of reality:
Difficult venipunctures today, looking for a vein that didn’t roll or “blow.” The first four “little stings” did (we used to call them “little pricks” in the nursing biz but political correctness nipped that in its budness.).
They moved the insertion sites around, palpated, eyeballed, until the nurse settled on the antecubital space of my dominant upper right extremity (crook of my right arm in the bendy place).
See the trouble we get into if we get too far in medical-ese? Better to simplify, simplify again, and then oversimplify.
Doc says: My labs again “look great,” some flirting with too-highs and/or too-lows, including one the Doc expected, like my elevated but not yet alarming CRP (C-Reactive Protein).
An elevated CRP in the blood is “a marker for inflammation.” In my case, pointing to leftovers from my recent bout with “immune-mediated colitis,” still stalling in the wings, which almost did me in, surprising everyone but me when it didn’t. (See Day Sixty-Four).
This is one that will be monitored closely, along with any of the routine complete blood count levels that could indicate an infection and/or other somatic red flags as we go along.
Infusions completed, I left the unit feeling fairly fine, armed with new med order tweaks: alternate/titrate my steroids, continue with antibiotics, my home self-anticoagulant injections . … and then …
I went down one floor to Radiology for my lung CT scan. This image will be a comparative study on the change, if any, in that tumor since my last scan and through this delayed treatment regimen.
Results?
You’ll have to wait, as will I, results pending for Day Sixty-Seven, when we’ll also review the findings of the follow-up MRI for my brain tumor, due next week. Lots to know what we don’t know, and enough for now.
Let’s see, if those two scans were new drugs, I’d call them:
Vumorinit and Nomorinitatal.
(See what I did there?) View more in it? No more in it at all!
More as we go, Elflexital.




Wednesday, April 24, 2019

DAY 065 -- "All My Petals"


A return to the road to forever today, two weeks after Day Sixty-Four and my all-in, almost-out flirtation with testing my expiration date.

After a month’s absence, it was back to the chemo- and immunotherapy infusion unit (is it possible to already have nostalgia for the room full of semi-comfy recliners, IV poles & pumps, springy tray tables and the mini-fridge always stocked with those good no-name puddings?). I discover that I’ve missed my sessions there, like finding peace in an anti-refuge of great and small expectations.
And, of course, the staff who treat me like a regular: that same-time next-time barroom patron whose time and tastes are established enough to have his “usual” space and drink reserved and still frosty-full at unhappy hour.

But, today they also surprised me with a strawberry cake and a wonderfully discordant rendering of Happy Birthday, its tempo and unisons way off as they always are, but big smiles in lined-up scrubs harmony.
Then, blood draws for labs … and the sit-down with oncologist doc that I’ve had some fret over:
-- Reaffirmed Stage 4 cancer, tumor statuses unknown until follow-up scans. (We’ll leave the prognosis for now in one of those generic pudding cups.)
-- Plan to resume chemotherapy therapy regimen after I’m backed off the steroids and antibiotics in the next two weeks, but this time without the Keytruda that was quite possibly the precipitant villain of my intestinal near glory hole revolution. Sorry, Merck. 
-- As we talked, lab results came back, and they “look great.” We also reviewed my last two weeks post-discharge at home: bowels returning to normal, appetite improving, extremity muscles reconditioning, mindset optimizing and Harley daydreaming resuming.
-- For the record, they’re calling it (Day Sixty-Four) “immune-mediated colitis.” Doc tells me that folks in my cancer stage boat suffer this “about ten percent” of the time. I’m calling that hospital stay my temporary membership with the liquid minority (for gut-driven reasons we needn’t belabor), and much as I love statistics, I hate statistics.

But, I did leave today resolved for now to at least keep my one thriving and well-watered hurry on spring bloom-in-the-bunch status and get on with it.
Next birthday, however, I’d like to re-join the solid majority and have all my mettle in all my petals.
More as we go, El



Sunday, April 14, 2019

DAY 064 -- "Helium Fill-Ups"

What a difference an eternity makes.


(My mental health therapist has suggested that I’m prone to hyperbole, but she tends to paint my musings with a million mile-wide horsehair brush.)

Surprised? Therapist, you say? Did you think I was neglecting my utilitarian brain cell cancer labors all this time at the expense of its mystic fruits? Yes, I confess: I’ve had regular couch composure maintenance since my introduction to Rad Chemo.

I’ll leave how you and I feel (about what we think of how we think about what we feel) to the philosophers and the guy who rotates my tires:

“If you don’t do ‘em, you’ll be out of balance,” says my rubber side-down wise man Dudley.

I accept this with more depth, timing and metaphor than Dudley the tire guy could ever appreciate. But, it’s not important that he does, because if I tried to tell him how unwittingly street-smart, he was, he’d only puff up and start insisting on helium fill-ups.

He’d plead that it would be a good thing my pressure would be less effected by my temperature, but I couldn’t take the profundity of that, and for ten bucks a tire I’d only yearn for a return to flat or inflated distinctions, body and truck.

  Since Day Sixty-Three there were intense redirects, beginning with an ER admission in crisis. Two weeks in the ICU, a host of frontal assaults from all directions (nurses will get that) and twenty-seven pounds less of me later, we’re back to the complex basics. I was sick enough that my cancer treatment regimen had to be held, but we’ll be returning to it soon.

What happened? When someone asks, I ask them if they want the two-word or the two million-word version. A squirm and wink or two later, I respond with something that sounds a lot like:

I had an intense viral upheaval in my nether region, above and below its equator. I couldn’t stop pooping liquid, and pees came in surprise fits and stops; I couldn’t stop not-eating but I couldn’t taste what I didn’t not eat; I vomited like most of us breathe in and breathe out without a blueprint; I had waves (feelings, not thoughts) of seven-legged arachnids side-stitching up my back and inside my liver (thoughts, not feelings).

Jerky limbs, artsy-fartsy bruise-etchings, pop-up lesions, blocked nasal passages turning my words into Foghorn Leghorn mumblefests, and when I did manage a swallow, it was like pushing sandpaper around a golf ball with lettuce leaves.

Balloon animal bouts of nausea.

Lead balloon animal joint pains.

Sweatless fevers. Moist chills.

Never asleep long enough to reach REM.

Ever-present? My gaggle of docs making rounds, working the problem lists, all options open, seeking consensus in places where generalities and specifics are always mixing it up in spoiled rotten sandbox wars.

Yes, I survived, I’m now home, and my “normal” bodily functions are returning like rolling eggs imitating your college kids on a maxed-out spring break.

One more bonus sidebar thought just for fun and a well-earned reader’s respite:

Up to here, how much have I repeated myself in this diary?
 
Did Charles Dickens ever have to stop, go back to an earlier draft because he couldn’t remember if he’d given Tiny Tim one or two crutches? Did he ever need to retreat and confirm whether he’d given Mrs. Giniwin a first name, and if not, why not?


Do I want to do that now to both of us? Return and physically check for all the inconsistencies or incompletions or self-plagiarizing repetitions I may have forced upon you up to this point? Had I already been inspired and recorded how my cancer is the great equalizer of lofty blah? Or the final fool’s arbiter of blah blah? Or the ultimate gutter leveler of blah blah blah?

Hell, no I don’t. Let’s go with a broken butter churn handle crutch, call her Dudleybelle, and get on with getting off it.

More as we go, El  



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




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