DAY 065 -- "All My Petals"

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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  

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

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

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