Sunday, September 15, 2019

Day 074 -- This Time You Have

This day’s entry should be the longest, the most intricate, the most telling of everything we’ve been through to this point, but it might serve us better as the simplest … the most raw.

A day in the emergency room after coughing up a strange mucus plug, then some hunks of bloody lung junk for a while (we could go with “hemoptysis” but we’re doing simple and raw).

At the ER via a rather urgent trip with Diane driving us there in my big boy honkin’ truck (not designed for a driver of her small stature, but she wrenches it around just fine).

At the ER, the bleeding stopped and the shortness of breath eased up.

Then, after the CT scan and x-ray:

A lesion is now “eroding” an area on my windpipe.

There is more cancer in my liver and lungs.

At the end, we spoke with a gaggle of huddling Docs on the way forward:

Looks like chemo is no longer an effective treatment. Palliative care from here on out.  And, my sledgehammer moment, when I pressed my oncologist on a “rough” best estimate of me and my cancer’s timeline.


I will go to radiation oncology next week to see if XRT (x-ray therapy) can help my airway.

Finally, as we began on Day 001 at the outset of this narrative:


A simple, raw and fitting place to move on, as I would like this to see the light of book publication while the light inside these hands still shines.

I can think of no greater end than a note from my daughter, who met us at the ER today.

We’ll leave this as we’ve gone, with her brave and loving words:

Dear Dad:

Hard day today, and you handled it well.

I am completely distraught at the thought of losing you. I love sitting next to you, talking to you, I love being your daughter. You've given me so many gifts as my Dad. You have lived a tremendously interesting, inspired, badass life.

You have some time left. What I want for you now is for you to do the things you want to do, go on adventures, sit and be still, have conversations, eat your favorite foods.


 I want to spend some of it with you. Also, I have a few requests if you can manage it. I want signed copies of all your books, and I’d love for you to make videos or voice recordings of you talking to me, to Rory, and all our children too, if you want. I always want to be able to see you, to hear your voice, for the rest of my life.

I love you so much. Let me be a part of this time you have.  I have so many happy memories with you, let's make a few more.

I love you, Erin

Friday, September 6, 2019

Day 073 -- From The Top Up

This all has to end somewhere, and because we know where all endings end, I’ll begin to end this one with another beginning.

Much has happened in these last two week’s worth of todays:

If we add some forehead-slapping intrigue to insult, my blood tests confirmed Lyme Disease. When I came home from the hospital with the news, there was a deer standing by the fake rock under the backyard crab apple tree, and I had a mad flash image that Bambi had it in for me personally.

I had LD a few years ago. After I’d found the embedded tick, the telltale classic bulls-eye bruise followed and there was only a minimal fallout of symptoms. A quick regimen of antibiotics, and it was gone and gone.

This time around, I never found a tick, but a red blotch appeared on my mid-back, and when more advanced waylays moved in (see Day Seventy-Two), everything went on hold until I was restored to all my normal subnormals.

Two weeks and a course of Doxycyline later, I’m fairly clear of them, and today we restarted chemo.

It was administered via my new central IV port, also installed since our last outing. For the record, it lies under the skin and just ABOVE the wings of my Pegasus (Day Seventy-One).

To calm any storm in a port, I was heavily sedated, the port was implanted perfectly, and my IV blood draws, infusions and contrast mediums are now one simple cinch of a pinch.

One stick. No bruises. No misses. No errors.

Today we began Docetaxel (why does that make me feel like a self-experimenting mad Incan scientist?)

The most common side effects are what happens when you put all the vowels and consonants in the English language together in a dozen random orders:

--- Stiff rotations, joint rashes, facial palpitations, irregular inflammations, swollen nausea, hot chills, cold fevers, shortness of mind, rapid emotions, sleep paralysis, and the tinsmith forgot to give me a heart.

(See what I did there? Trouble is, at this point in my cancer road and sky trip, the signs & symptoms are becoming more mix n’ match.)

My favorite? At the top of the list, says the Doc, it’s likely that I’ll go skinhead again.

The first time this happened, my hair came back wavy and dirty grey. This time, I may opt to keep it bald. At least I might outsmart Bambi from the top up and the back down.

More as we’ve gone, El

Thursday, August 15, 2019

DAY 072 -- "Get ON With It!"


Simple definition?

“The assignment of degrees of urgency.”

The core of my professional life in medicine has always been thus; it’s the crux of my work in the nursing biz.


Where should I start, where should I end, and how can I do the least amount of harm along the way.

Today, as a cancer patient, it’s moved from crux to credo.

Recent degrees of urgencies:

Constant pain in my right side, bad enough to send me to the emergency room. After the mandatory (necessary or not, but always done) ECG, then a CT scan of the offending flank.

Bad news from the scan, and now the hit single at the top of my reverse-order billboard: spots/shadows on my liver that weren’t there a few weeks ago. My oncologist arrived to discuss it. Not a good doctor-face.

Some of my pain could be from constipation, along with the fresh tumors. And, because of these “inoperable” liver urgencies, we’ll probably not radiate the lung/lymph node, and will instead shift to other courses of chemo drugs.

I felt like a fisherman who’d run out of his favorite doughball bait, and would have to settle for dead worms.

Fast forward a few days running in place (easy, if you’ve ever hit the brake and accelerator simultaneously):

Back to the hospital lab after calling-in my signs & symptoms to the Doc: a low-grade fever, concentrated urine, increasing fatigue, muscle weakness, some shortness of breath. He said to come in and drop off blood and urine. The pee came easy; the blood took a few sticks. (We had to postpone the IV port earlier due to some other little urgencies, so the repeated probings and pokings go on.)

I received a phone call an hour after leaving the lab: please return to the emergency room for blood cultures, more x-rays,  and a transfusion.

Well, hell, why not.

How about a brainectomy while we’re at it. And, let’s throw in an awfulplasty and a fuckinostomy to be on the safe side.

Yes, I’m discouraged. I don’t like shifting gears on a horse of a different color in the mid-stream of a mixed metaphor.

Dammit. Before today, I’d thought I’d known where I wasn’t going; now I don’t, and my timetable is yesterday’s no-news.

One transfusion and a few more reassigned and revamped urgencies later, I went home to hang up a new mental triage game board, the kind that I hope will accommodate doughball darts.

(Point of order: my computer's spellchecker wants to keep correcting "urgencies" to "insurgencies." Smart computer.)

Next week, when we get the latest MRI results of my brain tumor, along with the CT scans and new x-rays of my lung and liver tumors, the docs and I will have to switch chemo baits again and move my bull’s-eye.

My top takeaway from all this: “A compromised immune system can mask symptoms.”

Great. Now I’ll also need some new disguises.

Right now (for the Monty Pythoners among us), I’m Graham Chapman’s Colonel, interrupting myself in this increasingly improbable skit, pronouncing me and these fracturing metaphors as “Too silly! Get ON with it!”

More as we go, El

Thursday, July 25, 2019

DAY 071 -- "Under My Wings"

Before chemo infusion today came the three-month follow-up look-see at my upper innards.

Whenever my oncology Doc wheels out these before and after tumor comparison studies, I feel like an anti-advertisement for quack medicine wrinkle cream:

Yes, folks, there it is:

Before treatment? This big.

After treatment? Bigger.

But, as we found in the pre-findings on Day Seventy, there are no NEW spots in there, so we’re at least keeping it localized for now. Doc points at the screen to the trained-eye visible nuance of change in the tumor; I pretend that I see it. Sometimes, progress is when the horizon moves closer as I sit still.

Sometimes … what we see and what we want to see is a quiet tantrum in the background.

The chemo drug side effects are more of a nuisance and more tolerable now, perhaps because they’re less mysterious. I’m a friend with fatigue, a buddy to my bowels & bruises, an ally with my appetite, and mentor to my moods.

The latter have become pesky, as my emotions don’t always listen to my advice. They’ve trusted me up ‘til now, but they’ve become quirky, sometimes raring up when they should rest, and going dark when they should be bright-eyed.

It’s become the main event in my counseling sessions.

Yes, I’m being unfairly sidetracked by chemically-induced interlopers who make up their own rules. My job? Change the playing field.

Next up? Looks like more radiation treatments in the offing, and we’re having another MRI look at my brain tumor in two weeks, just to see if it’s remaining a miniature sleeping giant as my lung keeps center stage.

I’m also getting a power injectable IV port because of these repeated failed and/or difficult IV sticks. For the infusions, blood draws and contrast mediums needed, it’s time for a handy one-size-fits-all site, into a vein in my chest below the collarbone, near my one and only tattoo.

It will be inserted next week, and I’m hoping they can place it in the fading Pegasus.

Just under my wings.

More as we go, El   

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 lymph node cancer 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

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