DAY 043 -- "Facing Away From Me"

I can’t remember where I first heard it, (maybe I said it, but I don’t think I’m that witty), but it stuck with me:

“I’m not hungry. All I wanted was a cup of coffee and a fork.”

So, when I saw an opportunity to report one of my favorite jokes visually, I tried. There’s something about that sentiment that suits me right down to my hospital slipper-socks. Yes, it’s just plain funny, but it’s also how I’ve tried to move through cancer:

The right nourishment? The wrong utensil. The right game? The wrong ball. The right vehicle? The wrong map.

The right map? The wrong directions.

Woosh! We could keep going and wring that metaphor dry, which any nurse-humorist is wont to do, but you’ve suffered enough with it.

Instead, I could write about how my body-healing is progressing (my brain remains to be seen), but these two pics will do it better. If I was in my nursing element charting on myself, I’d be recording the:

--- size of granulating surface area and the beefy wound bed

--- slough and epithelial appearances (staging the wound)

--- length, breadth and depth of wound

--- status of wound edges

--- type and amount of drainage

--- signs and/or symptoms of infection

--- odor

--- reported level of pain

--- patient’s favorite cruising songs

(okay, okay …  just checking to see if I’ve lost anyone).

As a patient, however, when I look at these comparative photos, I don’t see centimeters and exudate, Wong-Baker faces or proliferative phases, but rather a hot-diggety damn, a yahoo, an ain’t-that-a-pisser, and a guarded but firm woohoo! with a yippee! in reserve.

Now, I’ve saved the last for the best, a photo to represent hope and healing and (dare I say it) even the possibility of one day returning to life as a life, not an experiment. A field of bountiful sunflowers bright and full, but facing away from me into the sun.

That will do just fine as my new theme music, for now.

More as we go, El

DAY 042 -- "Squatting Elephant"

Blogger’s license: A few chronological days have sailed past us without me. They were lost at sea. Let’s let them go quietly.

A most precious thing wrapped me up today: a call from my daughter.

Dahlin’ daughter Erin called to give me a report card of how she spent her summer working vacation as a camp teacher in the performing arts. I gave her my report on how I spent my summer AS a rookie performing artist on the center stage of science in my body’s theatre of the absurd.

Ba-da-bing. She knows what that means. She grew up around my sense of humor.

We agreed to share our anecdotal finer points at our next visit, which will have to wait a while longer. Right now, I’m supposed to be resting, avoiding people, and focusing on good nutrition, hydration, and all the positivity I can muster. I love you, too, dear daughter, and thank you for lifting my spirits, as you always do.

But, I’m working hard on the positivity because I know how important it is. I know this from thirty-five years of providing bedside nursing care, which I believe I did well, and forty-two days of receiving it, which I haven’t done well at all.

For me, the biggest hindrance to my healing is me (this is true of most of us in the health care field. No, we’re not selfless heroes, but caring for others and saving ourselves for last is simply how we help fuel the world).

In these first weeks of cancer treatments, it’s been all about the ebb and flow of good days and bad. Tonight is bad, piling up on me --- all the swelling, burning, choking, bruising, vomiting, and pain that this body has never known to this degree (I’ve seen it and assessed it and charted it in other bodies, but never felt it in mine).

Every day, as my self-triage takes another spin of the wheel, I never know which side effect losing number will come up.

Yes, I have plenty of targeted pain management interventions at hand which make all the above at least tolerable, but because “every form of refuge has its price,” and because medicine should adopt that as Part B of the Hippocratic Oath, the side effects then have side effects of the side effects ofthesidedeeffects--------

But, wait! Now comes the big top tent of Rad Chemo, and it’s taken over my midway: fatigue.

F.A.T.I.G.U.E.

It’s all-consuming. It’s concrete shoes in a swamp. It’s a chainmail overcoat. It’s a lead barrel full of anvils. And, like the pains generated by this disease, it’s another siege that I’ve never experienced in me, only witnessed in others.

But, now I know.

This is the sixth day I’ve tried to write about why I couldn’t write about it. When this cancer treatment fatigue moved in, my muse, my best intentions, my grit, my energy, were all washed away like a sand castle.

Some of my cancer course has been “normal,” if there is such a thing. Everything the Docs said would happen to me has happened, but some of what they said might happen, hasn’t (so far). At least not according to the textbook cancer timetable.

When it comes to illness, we each have our own season tickets. Some games we play at home … and some are away. (That may be the best metaphor I can pluck from this fatigue).

I’ll do my best to get back on track, soon as I get this squatting elephant off my chest.

More as we go, El

DAY 041 -- "Warming The Bench"

Today’s cancer quiz. This picture is:

A. An ocean floor view of Montezuma’s String Kelp, found only in one remote northeastern Atlantic location.

B. The moment that the new patented rolling-soap soft bristle car wash brush was about to contact my windshield for the first time.

C. The first photo ever taken of the edge wall inside an F-5 tornado.

D. A sunrise drones-eye view of Prickly Prairie Grass.

E. A super close-up of B. Elwin Sherman's returning head hair/fuzz.

A wonderful quote today from the late Buddhist practitioner Rick Fields: “I don’t have a life-threatening disease, I live a disease-threatening life.” Thanks to my friend Mitch Eagan for forwarding that to me. For the record, Mitch is the only person I know who copyrights his garden vegetables.

I confess that until I read that, I just hadn’t thought of my life as the offensive team captain playing in the Superbowl of Me vs. Cancer. If I thought about it in those terms at all, then I was hitting the ground limping and warming the bench as a third string defensive outside linebacker.

It’s changing the way I’m playing this sporting life.

Most times in this multiple-choice life of ours, a football metaphor will do nicely.

So, I’m taking the day off to watch baseball. The cancer will have to wait (see what I did there?).

More as we go, El

DAY 040 -- "A Front Seat Driver"

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 I've spent much of my professional life in those rooms and hallways and I know it's where the nasty little germies are. Who hasn’t been in a waiting room and looked at and listened to 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 with me for a while.

This is turning into a long road trip with a front seat driver 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.

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, for the record, on any 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

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

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 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 suite 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

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.

DAY 035 -- "Pulverized Bacon!"

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

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 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 nearby. 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 from the kitchen sporting 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

DAY 034 -- "The Next First Finish Line"

Raw hide.

At this point, maybe it should be raw run and hide.

We’ve arrived at the penultimate day of radiation. One … more … treatment!  That’s worth at least a ta-da!, if not an attaboy or two. I wanted to show you, at the risk of abandoning whatever vanity I have left, where we are, six weeks out. Once upon a body, I’d have been mortified to have this image out there.

Today? Poobah. Yes, publishing this unfettered exposure of my naked and irradiated meaty parts (uppers) should feel risky, guarded, embarrassing, and just plain oodgy. Who wants to see this? I don’t, and I’m in the skin.

No more. All that matters is the truth. Pretty or not. I’ve tried to give you that since we began. No point in doing anything else.

This picture, taken an hour ago, is where we are: me, and this thing I walk around in. It’s the truth, but still unnerving to me, like that first time years ago I looked in the mirror and saw my Dad.

Look closely: even if you remove the cancer, the burn, the pudgy corners, the neck waffles --- even if you put back the hair, sat me up straighter and subtracted forty years --- you’d still have this near wreck of a man, some of it Ma Nature’s fault, some of it Father Time’s, some of it the hard luck of the draw. And, some of it … a stupid human trick.

Still, even at this plateau (I’m not quite ready for a crevasse or a precipice), I’m going with the future as an opt-in add-on.

One more treatment and we’ll begin to know less of what we don’t know, and more of what we can’t know just yet, all as we set sights on the next plateau. Today, my white blood cell count is one-point-two.

1.2 is low-low.

“Normal” range is 4.5 to 11.

Low enough that the Docs are again giving me the needle (they’re good doctors) about what I should and shouldn’t be doing. Infection is always lurking when a WBC gets this low, and that could mean big trouble at this stage.

Okay, Doc. Yes, I’ll drink, eat, do everything in sub-moderation, and behave myself until the next horizon.

Worried? Scared? Angry? Resolute? Sad? Hang-dogged? Upbeat? Woebegoing? Every which way?

You betcha.

And, this picture? No Photoshop fixes. No filters. No touch-ups. No softening downs. No enhancements. No airbrushing. No attempts at artsy-fartsy. Nothing here but my hide.

Raw.

See you at the next first finish line.

More as we go, El

DAY 033 -- "Empty Space"

After days like this, we both need a breather.

Empty space is not the same as no space.

For now, that's all I've got, except this otter sizing up a fish head. It will have to do.

Thanks for sticking with me.

More as we go, El

DAY 032 -- "Exact Blurring"

My bent has always been toward the textual, but I’m feeling more visual lately, and it’s just too damn bad that I’m not a sculptor, or painter, or photographer, or pole dancer. I will dabble in design, and sometimes stumble on a successful capture, but in my next life, I’m going for out-loud, stand-up comedy.

That may not work either, because I love improvisation, but I need to rehearse it a few times. At least with the printed word, it takes heckling longer to get here.

This pic is today’s attempted artsy-fartsy improv, well-rehearsed. And, sometimes, at least for me, a picture’s worth a single word.

 Like this one: fatigue. The big eyes, the endless hallway and floor legends, now all too familiar after weeks of making the treatment rounds, yet still feeling at once alien and comforting.

My cancer “script,” as written by the Docs, has been fairly well-cued up: We won’t know the net effect of all these daily frontal assaults (and a few reconnoiters and flanking maneuvers) until we re-run the diagnostics in a few weeks, but so far they’ve been spot-on with the side effects:

The skin burn, the pain, the nausea, the anxiety, the dry mouth, the hard swallowing, the dinosaur bowels, and now, the fatigue.

It comes quickly (no, in this case “quick fatigue” is not oxymoronic), and though it’s short-lived, it does freeze my frames with little warning. It’s almost narcoleptic. This can be a problem if I’m doing something requiring my full and attentive attention. (You may write your own joke here).

“Sudden sleep” is one way it’s described, and because I’m always aspiring to be a creature of balance, I guess I’m also suffering from sluggish insomnia.

I’m at the edge of one now. It’s after midnight, and again I’m giving you yesterday today. I’ll leave you with this photo. I took this just exiting the elevator on the radiation floor. It was rushed and presents here with its blurring clarity intact.

Whenever I see this sign these days, I exhale a lifetime of dumb choices, arrested, we can hope, in time.

More as we go, El