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Saturday, August 18, 2018

DAY 040 -- "A Hitchhiking Ogre"

Home again, home again! 


If it’s all the same to you, I’ll reserve the “jiggety-jig! part of that rhyme for when I’m back on the Harley with Diane.

Yes, I was sprung from the joint today! (I did this yesterday, beginning my Day 039 entry with dated gangster slang. Don’t ask me why.)

As a general rule (no, as a very specific rule), it’s a good idea to go home from the hospital asap. When you (and your doctors) determine that everything they’re doing for you in the hospital can be done at home? Vamoose!

Please don’t read that wrong. I love hospitals. I love doctors. Not all of either, but it’s where some of my professional lives, and always will. But, it’s also where the nasty little germies are. Who hasn’t been in a waiting room and looked and listened around at your fellow sickies, often an elbow away. Coughs, sneezes, and who knows what lurking on their surface areas or flying around the room.

No one should enter a hospital without a mask (Also see Day 039).

No, I’m not a germaphobe; I do go out amongst us on any given day without any sense of doom, but I’m also a realist. There may be sick people in a restaurant or a supermarket, but you KNOW there are sick people in a hospital. I mean, there’s that infected elbow, brushing yours …


Man, what a digression. I'm sorry. 

I didn’t get cancer from a contagious waiting room elbow.

But, I’m home with some new post-treatment rules, meds, directives. I’m in the grip of what many have told me will be the hardest part of this protocol, because the effects of radiation and chemotherapy linger and work beyond their cessation, so I’m still in suffering the side effects mode. This picture was taken this morning. Enough said there.

So, I’ll need a couple more weeks to come down from the hovering highs of low blows, then we’ll see what we’ll see next month back in scanville.

That’s what’s in my brain today:

After weeks of harsh daily insults to this body, what will they find in the follow-up diagnostics? Did it work? Did it half-work? Is the cancer gone? Is it lurking in the lymphs?

I’ll have to carry those unanswered questions around with me for a while.

This is turning into a long road trip with a hitchhiking ogre in the passenger seat, and dammit it's going where I’m going, and it's eating all my snacks, and it insists on telling me horror stories. And now that we’re well down the road, I have to learn when to take the wheel, and when to let it drive and refuel while I rest.

More as we go, El


P.S. Oh! And I mentioned scalloped potatoes in yesterday's entry, and when Diane brought me home today, she had homemade scalloped potatoes waiting. I'm a lucky man.






Friday, August 17, 2018

DAY 039 -- "A Mix Of All"



“Listen you mugs: another day in the Big House, but me and Bugsy are bustin’ out.”

(Sorry, but I just never had the nerve to write anything like that. It’s liberating.)

Diane was here this morning to join me in my masked seclusion. Misery loves company, but so does joy.


Tough day today after she left, and I dragged my brain into this. Just when I think I have my mental house in order, a blip or two pops up on the screen. Sure, it was another day of diagnostics, prognostics, and pureed coffee, but I let my guard down and the emotions in. Not a good idea.

The old standards apply: Thinking with my head, my heart or my stomach? It makes a difference in how we problem-solve, how we cope, how we imagine. Today my head did the driving for a while, when I lingered too long with why this bad break I’ve been given. It's not a good question to ask myself on a bad day.

Don’t get me wrong: I’m a big fan of emotion. My wife’s cats and some of my best friends are emotional, but drawing only from that wishing well is just as bad as thinking with any other disaffected organ. The best results come from a mix of all. It’s a system of checks and balance that we all use, even if sometimes we’re not aware of it.

Okay, enough hiding in the language. Just what is all this high talk about? Bottom lines:

I feel that my body has betrayed me, and when I confine myself to coming at life from that angle only, it’s hard to have any forward motion.

True enough, my throat is painful, my burn is painful, my swollen leg is painful, my intake and output are inside-out, and I’m so tired of being tired and not having just one day (out of thirty; I won’t be greedy) when something wasn’t hurting.

Just once on one day, when someone asks, “How are you?” I want to be able to simply say “Fine. And you?”

Today, life was like this plate of pureed potatoes, pureed beets, and pureed hot dogs. (No, I’m not complaining and I'm not being punished. I just must eat this way until my throat clears, and the food, even mooshed into oblivion like this, wasn’t bad.)



 But, on a “normal” regular diet day, I like my potatoes scalloped, my beets pickled and sliced, and my hot dog in a bun.

More as we go, El



Thursday, August 16, 2018

DAY 038 -- "The Better Puzzler"


It was a dark and stormy night, when too many breakdowns moved in, enough to warrant a trip to the hospital: nausea, vomiting, fever, edema, pain and oppressive fatigue.


Even the baseball Gods were co-conspirators, starting the BoSox game at the same time I was on my knees with my hurling head hovering over the great white porcelain fixture.

So, off we went, with Diane scooping up the essentials for what would surely be an overnight stay at the hospital for both of us: change of underwear (remember what your mothers said), the usual toiletries, some hard candies, phones, tucking-out the cats, and operating on the assumption that I would be admitted, and she would finish several NY Times crossword puzzles.

Yes, my Rad Chemo treatments had both ended two days before, but I’d been advised by everyone that their side effects would go on for some time, perhaps weeks, and that they would get worse before getting better.

Okay, I’m ready. I’d thought. I was thinking that, when worse came through the door.

The nausea/vomiting was toilet bowl huggingly bad; I was feverish, the mysterious new edema in one leg, foot and ankle was bad enough to cause a limp, I could barely swallow, and the little bit of attempted supper with real food (non-liquid) had been negated when it found its way back to the atmosphere. I was malnourished, dehydrated and sick as a cat.

Blogger’s license: I’ve always thought that ‘sick as a cat’ conjured up an unmistakable image of hacking and target vomiting, but ‘sick as a dog’ could mean anything from fleas to mange.   

No. Yes. I was cat-sick, and off we went to the Emergency Room. To make a long story palatable, several hours later I was admitted, Diane had finished her puzzles and unfolded herself from the world’s most cringe-worthy chair.


Right now, it’s the end of the next  day, and Tug the Robot Messenger beeps his approaching" Crossing Hallway" warning as he passes by outside my room. This is as it should be, and it looks like I’ll be holed up here for a while as we all once again find our way through the maze of medicine in that way medicine has, of not so much determining what it is, but what it isn’t.

As of this swallow, we’re working on finding what isn’t causing my edema, what didn’t spike my temperature, and who isn't the better puzzler in this family, me or Diane.

I’m thinking that lately I’ve become the source of more empty letterboxes than her, but with me also providing the clues, her filling in the verticals and all these clinicians tackling the horizontals, we should get the puzzle done.


More as we go, El





Tuesday, August 14, 2018

DAY 037 -- "Shakespeare's Torpedoes!"

And now, just entering the aftermath:

I’ve discovered that right up to the end of my foremath (yesterday, when the Rad Chemo treatments were completed), whenever my chest burn dressing was being changed, or during the three failed needle “probings” for an unsuccessful chest biopsy, or any procedure/application that involved the excitation of nerves into a world of hurt, or when someone mistakenly circled ‘tapioca’ instead of ‘butterscotch’ on the menu (an insufferable error), I responded thusly:


I’d address whoever was delivering the medical slings and arrows and tapioca pudding (as they apologized profusely), and tell them: “Please, I’m a nurse, I know what’s happening, and unless you’re a sadist or a psychopath, it’s okay. Lay on, Macduff! And, damn Shakespeare’s torpedoes!”

I added that if they had to hurt me to heal me, they also had to listen to my pathetic squawks, flinches and begs for mercy (slightly melodramatic), but otherwise pay no attention to this grumbling man under the sheet.

This always helped to ease the tension in the room, prompt a laugh, and let them know that I knew that inflicting pain on me was necessary, not the goal.

So, as we navigate through this last leg of the first stage, if I had to triage myself, I’d start with this side-effected throat at the top of the list, moving my rad burn down a notch from its #1 spot on the billboard.

My throat is SO sore---

Really? How … sore … IS IT?

My throat is so sore that if you wrapped a serrated knife in steel wool, dipped it in carpet tack sprinkles and twirled it around in there whenever I swallowed, that would about cover it.

It’s so sore, that on the 1 to 10 pain chart, it’s a letter, not a number.

It’s so sore, that … well, enough of that. You’re probably having supper.

 BUT, always covering it in the background is the knowledge that what I’m experiencing now was mostly expected in this course of disease and treatment, as my body works hard at putting “This Too Shall Pass” back on my marquee.
   
This pain prompted me to return to the infusion unit today, where they dropped in a couple liters of IV fluid. Also, we tweaked the medications (a never-ending task in the pursuit of optimum comfort). Pain management is an art/science.

And, because my WBC is now 0.8 (significantly lowering my defenses and opportunistically opening a path for any nasty little infectious agent out there), I must wear a mask wherever said little nasty may be lurking, which is … well … everywhere, but especially any clinical environment and supermarket shopping cart handles.

Here I am: artificially bald, environmentally taboo-ed, reduced to a liquid diet of unfrozen Popsicles (an inside joke) and protein shakes, muscling everything down the best I can, moving toward the upside.

One thing, though: I’M ALIVE! That’s nine out of ten points right there! (I’m saving one point for a plummeting piano). My life in the hands of top Docs, nurses and therapists, and Diane just coming home.

There! Big hug and kiss as I slouch back toward normal, and we continue to continue.

More as we go, El

Monday, August 13, 2018

DAY 036 -- "The Occupying Force"




Graduation Day!

I climbed down off the terrible table in the radiation room today, and this “diploma” was laid out for me. Signed by my therapists at the Norris Cotton Cancer Center. I first dubbed them “The Radionettes” in this accounting when we began six weeks ago.

They never missed a literal beat, piping in the right music for the right day without a miscue.

To Duke, Jen, Tracy, Kristen, Lisa and Kerry, your words and deeds of encouragement and guidance were unfailing. You’re a class act, and I thank you for helping me to see through the mist. You said be patient, hang in there, steady on, and I’d come out the other side.

Well, I did. Today!

(And it didn’t hurt a bit that you played: “You Can’t Always Get What You Want”, your last official act as my radiation therapists and disc jockeys.)  

It was unnerving to hear from my inner circle, that at this point (the end of this phase of chemo/radiation), I can expect things to get worse before they get better, for at least two or three weeks. I’m now moving toward restoration of this besieged body, and a reconciliation between me and the occupying force.

Right this minute, I don’t see how this aggravated throat and my chest’s radiation burn could be any worse, but just knowing we made it through, even though there’s more temporary descension ahead, is strangely empowering.

Sure, the idealist side of me thought: last day of chemo and radiation? Presto! Change-O! Healed!

I knew better, of course, but I let my heart do too much of the thinking there, and it beat the crap out of my head.

So, my “diploma” reads:


 “… with honors in courage …”

That part belongs to Diane.

More as we go, El

P.S. And, yes, they used “Bradley” in the credits. It’s from another home room assignment long ago, but I’ll still answer to it in a pinch.

Sunday, August 12, 2018

DAY 035 -- "Pulverized Bacon!"

Here we are at the edge of tomorrow. My last radiation treatment is late afternoon, Monday, August 13th.

Let’s see: if I were our fearful leader, I’d order a celebratory parade of saluting oncologists riding atop rose-covered linear accelerators being pulled along by pairs of yoked nurses in glowing scrubs. Ba-da-bonkers.

This all started a couple of months ago simply enough, with the discovery of a “primary malignant neoplasm of the right upper lobe of the lung.” Doesn’t exactly roll off the tongue, but it might help you in your next game of Scrabble.

When I heard it, I so wanted my body to be the flesh & bone equivalent of a brave new world argonaut, but what flashed before me was Don Quixote on a dead planet.

In one of my first diagnostic tests, “an expression immunohistochemical assay was performed on paraffin-embedded tissue sections fixed in 10% neutral buffered formalin for 6 to 72 hours.” Yikes.

I was across the room talking this out loud to myself when my dear wife Diane overheard me, and her biochemist background surfaced:

“Oh, sweetie, that just means that they’re identifying the markers on the surface of your tumor cells that can be attacked by immune medications.”

“Of course it does. Silly me.”

She forgets herself sometimes, and sometimes I forget how smart she is.  There was a bit of little boy in me, however, that wanted to hear “Oh, that’s the test they do on the cool goop so they’ll know what to zip and zap you with.”

I’ve said before in this ledger, that “knowledge is power,” and I’ve long subscribed to that as a caregiver.

Along my path of peril, however, I’ve had my moments when I didn’t want anything resembling a crystal ball around me. No seers, no fortune tellers, no heads ups. No forewarnings, no preps, no getting up for the games. Just give it to me as we go, and with cool goop lingo and black raspberry applications. It’s summer, after all.

As I’m nearing the end of it, I am looking back on this descension  of cancer, this course of treatment and what it’s meant and how it’s changed me and Diane, fleeting and far-reaching.


I’m reduced to eating what Diane describes as “slippery cooking,” although I’ve come to see it as a delicious/nutritious augmentation. And, she’s done it so well. Soft, oily, smooth, wet and savory fare that will slide past this choking sore throat. It only hurts when I swallow, Doc, and no I’m not finishing that joke.

The plus side? An EXCELLENT food intake, like her cauliflower kale soup (to die for, but I hope not).

And, funny I should mention it, but she’s just come around the corner in her Bubba Gumpers cooking apron and announced: “Damn, the zucchini soup is so boring! Now… how to spice it up!” Zucchini from our garden, homemade with loving hands, delivered with a full heart. Boring? Silly girl.

Puddings and pops, flavored ices, smoothies, frozen yogurts, protein shakes, scrambled eggs, slurpy sides, slithery cereal, and I’ve even come to know and love the delight of a barbequed pureed hamburger. Again, it’s summer, and concessions must be made. I can’t give up yummy as a standalone.

Two other primary functions: bathroom privileges are now considered Constitutional Amendments, and any degree of manual labor needs to be recalculated beforehand using a slide rule, a sun stick, a child’s garden of verses, and dog years.

Re-enter Diane: “I’ve got it! I’ll add pulverized bacon!”

Far as savory goes, that may save the day … and the week … and the prognosis.

And, tomorrow? Graduation Day?

Watermelon soup!

It's summertime summertime, sum sum summertime....

More as we go, El






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