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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,
   El



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,
   El






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.
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




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