Thursday, July 18, 2019

DAY 070 -- "A Radiant New Garden Plot"

Today, I’m going with a few simple language quotes on my lung tumor follow-up CT scan results. No flowery phrases. Let’s get right into the weeds:

The preliminary results were delivered via phone message recording from my oncologist Doc (I was out in the garden when he called).

Mixed results. Some roses, some buckthorn:

·        “Not a whole lot of change.”
·        “Still a large lymph node, but slightly larger.”
·        “No new spots.”
·        “Results sent to radiation oncologist.”

Diane later spoke with him, and he whacked the weeds down a bit:

There hadn’t been a big difference in my lung cancer primary tumor site since the last scan, and though it had increased slightly in size, there was no apparent NEW growth in the garden (metastasis anywhere else). He is getting a consult from radiation Doc, who administered my first round of treatments that began on DayTwo.

Seems like only a million perennial gardens ago.

I can’t remember who said it, but I was once told that “a flower garden should undulate, not march.”

I’ve tried to live my life that way, though I’ve been known to rigidly walk in lockstep when I should’ve romped, pinwheel with abandon when steady pacing was called for, or follow the leader when taking the point was the better part of valor.

Today, yes, I’m taking a moment to stop, smell the weeds and pick a few flowers.

Along with the chemotherapy, a targeted one-shot radiation treatment might also help to plant and cultivate because of how my tumor is now presenting.

I choose to think of it as an anti-fertilizer.

It just might keep me marching along in open field formation, but still undulating in my own closed yard cadence.

Next week, another round of chemo … and designing a radiant new garden plot.

More as we go, El

Monday, July 1, 2019

DAY 069 --"Hippocratic Magic"

Sometimes, when it’s me, it’s me.

It’s not someone else’s negligence. It’s not the neighbor’s pranking kid. It’s not a falling anvil. It’s not the notion of an act of God (and notions are about as far as I ever get with Godly notions of wispy divine interventions).

No, sometimes, I just screw up. This wasn’t a big boner, but when she saw the bloody dressing from my chemo treatment today, it did bother the bejeebers out of Diane. “You could have exsanguinated! That’s not funny!”

I attempted a classic soothe: “Oooh, I love it when you talk bigly, but you know I’m a good clotter.” (True, lately my blood counts, especially what I call the blue values of my reds & whites have been on the low & high sides, and we should honorably mention my daily home blood thinner belly injections. Any bleed needs a little extra attention).

Then, my bridge-too-far personality took hold, and despite me I had to add: “And, whoosh, honey, it could’ve bled through the new Harley jacket. Oh, the horror! I checked my sleeve, though. All okay!”

She surrendered with a classic eye-roll, knowing that I was incapable right then of seriously taking her seriously taking me serious serious (I know … clunky, but grammatically correct.)

And, just as an inkblot whatzit away, when I look at it I see a red puppy chasing an oversized hairy egg. Diane sees a moose backing up. Neither helps this case either way.

Since my last chemo, I’ve had some outboarding innards with a little too much wake; some tidal fatigue, a few sidebar headaches, but otherwise I and my daily pursuits (and evasions) have been largely unreportable as being driven by anything cancer-ly. I’ve passed the days and nights as part of the minor majority.

Today at chemo infusion, my oncologist instructs and informs:

--Down-tweak daily prednisone dose.

--Status quo everything else.

--Repeat CT scan of my lung tumor in ten days.

--Up-tweak chemo doses at next treatment

--For the lab rats, my fucking magnesium is 1.6. mg/dl.

--For me, I’ll never again use “status quo” as a verb.

I did press him today about THE issue: where is my Stage IV cancer and where am I in it? He recoiled invisibly. I saw it, because I’ve done decades of nursing care for terminally ill patients and I’m old friends with what isn’t seen or heard at beginnings and endings.

I asked him all the lethal questions that all Docs don’t want to answer and patients don’t want to ask. I know. It was unfair all around:

Unfair to him, because Hippocratic magic is always cloudy. Unfair to myself, because my need-to-know brain lately has been pounding the ground of my worried heart.

He’s a good doctor. He answered through the clouds.

I’m a good patient. I listened in the earth.

More as we go,

Monday, June 10, 2019

DAY 068 -- "Bantu The Sailor Man"

Ta-Da! (just because life needs more “ta-da’s!” these days).

Returned to chemotherapy today, and we did resume the regimen with a couple of med dose changes (as we’ve discussed, doc is playing it conservatively, onco-walking the I&I tightrope (Immunosupression or Infection), and my side-effected innards are almost back to normally outwards.

Some of my lab numbers are low, some high, but we needn’t get specific, unless you’re med-geek driven by hard data. For those amongst you who simply must know, let’s take my basophils, one of the several types of white blood cells we all have.

My basophils count today is 0.0 (it should register between one percent and two percent of my WBC (white blood count), coming in at zero to 0.3 cubic millimeters.

Basophils too low? Higher risk of infections.
Too high?  Lower immune power.

That’s the I&I highwire: my always walking and sitting two-tiered pyramid.

One backstroke bug in the soup today, as my IV insertion site blew (it happens) and the site infiltrated quickly. The fluid went off into the tissues, and because I was distracted at the time, wracking my brain for the five-letter answer to my ever-present infusion unit crossword puzzle, the clue for “Zulu language group,” I didn’t notice my arm until it looked like half a topside Popeye.

But, strong to the finich, and without the spinach, I recovered. Hot packs were applied, and a new site, opposite arm (four attempts and three nurses later), was inserted. Pre-meds and chemo drugs finished running-in successfully, and before I left  the unit (for the crossword geeks who I’m sure were one hand and arm ahead of me here), “Bantu” popped in my head and I finished the puzzle.

I took the rap for the arm bomb. I’m guilty of not drinking enough overall (more important when cancer and cancer treatments are in the big mix), thus my blood plumbing isn’t as optimal as it might be.

BUT, we’re back in the treatment groove, balancing in the air.

I biffs ‘em and buffs ‘em
and always out roughs ‘em
and none of ‘em gets nowhere

… I’m Bantu the Sailor Man.

More as we go,

Wednesday, June 5, 2019

DAY 067 -- "Watching The Door"

Now comes the next day, a few weeks later . . . .

You’ve adjusted to my timeline by now, realizing some time ago how we will compress or expand the timeclock and calendar in this cancer chronologue. Sometimes, we even move laterally; let’s just call that “pacing ourselves.”

I’ve learned, and am still learning in this life, that rigidity and attempting to always make everything a proper, snug and sequential fit will lead to constant disappointment, frustration, and ultimate madness.

Eventually, if we hold on too long to unyielding willfulness, if we leave no room to flex and embrace success AND failure, we’ll live to find ourselves stuffing sugar packets into bras and wearing two left laceless sneakers (taken from the miles I’ve spent pushing med carts down nursing home hallways.)

If you go along here suspecting that today was more than a yesterday or two late and/or out of synch? Let go of it. I have. The facts re-form to fit without compromising the tale.

Since our last outing on Day Sixty-Six, this has been such a sidewise pacing.

 Due to a change in my bowel functions (an immunodrug side-effect) that has been particularly nagging and disruptive, the Doc has held further chemotherapy treatments, though I’ve kept my infusion appointments to check labs, vitals, receive some supplemental IV hydrations and another dose of Remicade, a TNF (tumor necrosis factor) blocker which is used to treat everything from psoriasis to colitis.

In my case, it was nearly miraculous in bringing me back from the brink (Day Sixty-Four), and it’s not unusual to need follow-up treatments with same.

I’ve responded slowly, however, and today, we’re still not quite there. If you’d prefer TMI metaphorical over medicinal, let’s just say that my bowels are still acting like a cat not quite through licking the bowl.

But, the Doc is pleased with my labs, and I left the infusion unit today with tweaks to my steroid and antibiotic doses. There’s a delicate balance with the dynamics of immunosuppression and infection risks, so Doc moves with targeted caution.

We plan to resume my chemo regimen for the lung tumor next week. On my way out, I was served a plate of sugary blueberry cake, compliments of a fellow infusee “graduating” from his treatment today.

That cake may lead to harder stuff, but I risked it.

The latest MRI brain scan result showed no change there, and both my oncologists chimed “we’ll take that any day,” but my lung tumor had shown some small degree of shift/growth.

That made me feel like the trip down inside the elevator, watching the door: the light-muted surface showed only my blurred reflection, hardly recognizable, but it opened enough to deliver me for the next time in the right place.

More as we go, El   

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.
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.

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