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Monday, September 24, 2018

DAY 048 -- "A Little Big, A Little Little"


My wife the scientist (plant biologist and biochemist) has more than one save-my-day to her credit. No, I’m not just talking my cancer, though it has been the high end of her rescues lately.


"Oh, quit quibbling!" you might say, and you’d be half-right. The best half.

Example: At last diagnostic outing, my follow-up CT scan did show a decrease in tumor size after a six-week course of radiation and chemo treatments. I wrote down the new dimensions, which to me didn’t seem all that significant, and frankly I expected more of a drastic visual – something I could really get my eyes around. I was disappointed.

“Well, Elwin, your tumor has gone from the size of an amputated dragon’s foot claw to a shriveled pea.” That’s what I wanted to hear, not just the mere metric reassignments of an irregular-shaped mass.

Enter my uxorial (re)calculator, who promptly scientificated everything, converting stuffy centimeters into the puffy cloud patterns she knew I could relate to:

“Look,” she said, drawing a picture of my said diminished puffy tumor clouds on paper, drastically showing my before and after. She did this using Pi (nothing’s scientific without using Pi somewhere), metabolic pathways, gene sequences and the table of Elements.

She knows I’m kidding you (and her).  I’m a warrior poet/writer; she’s the diplomatic research/visionary. Sure, she may have used her foundation of super-fundamental figuring to get there, but in the end, there it was on paper: my claw and pea.

My “Then” dragon’s foot claw, and my “Now” shriveled pea.

Diane was elated, because she could show me a visual, using her number mechanics and my need for eye candy. “See how much progress you’ve made?”

Yes, now that I see the lines, the shapes: then big, now smaller. I have my comparative analysis with the easy visual specs that my brain loves. I see what I’ve gained (by losing). I see more reason to hope.

I see that every love needs a little push, a little pull. A little statistic, a little imagination. A little big, a little little.

Immunotherapy today, my first round with Imfinzi. Only 51 every-other-weeks to go. Imfinzi: 



It is “approved for patients with Stage III non-small cell lung cancer whose tumor cannot be removed by surgery (unresectable), and whose disease has not progressed following chemo and radiation therapy.”

That’s me all over.

Inside.

More as we go, El




Monday, September 17, 2018

DAY 047 -- "Different Ducks"



Here I am: still tumorous (though it's shrunken and shrinking, as we discovered yesterday), but I’m not reporting in this travelogue every day. When you and I began this, I didn’t miss a daily entry for the first few weeks after my diagnosis and the beginning of treatments. In fact, I’ve been more religious about writing here than I’ve ever been about religion anywhere.

Blogger’s license: As we travel on, we may indeed venture into exploring the finer and grittier nonsecular side of how I’m living with cancer, but not just yet. I’m not quite ready to draw that mortal marker in the sand, at least with the curved stick necessary to do it. Be patient.  


And, what’s this? Another change in agenda: As a veteran lung cancerite with his first courses of chemo and radiation completed, I’m breathing easier, and that’s only half a metaphor. Yes, I’m easing up a bit on the sequential reportage in this blog. Perhaps you’ve noticed. To paraphrase and beat a tired cliché senseless, I’m getting all my different ducks in a row.


If you have noticed, I hope you don’t think of it like you wouldn’t think of a piano tuner at a Bill Evans concert.

We can still rest for a day of reckoning or two, you and I, without missing a well-tuned instrument. And, lest we forget or find ourselves a little metaphor shy today, remember that some piano notes make their sound as the result of a felt hammer striking multiple strings.

Don’t get me wrong. There isn’t a day or night that my cancer takes time off in my mind’s rolling marquee. What is changing is that sometimes I read what’s playing, but I keep on moving and pass by the theater without going in.

Today with my oncologist, we reviewed what’s coming on the road ahead with immunotherapy at the wheel, and we talked about how “smart” cancer is. Like any invasive entity, cancer “finds its way around the obstructions” inside a body, and we now must get mine to outsmart it by reshaping the obstructions and rewriting the directions.

That’s way oversimplifying the process of immunotherapy, but I’ve had my fill of medical techno-pop lingo these past weeks and months. Let’s just stay with simple-speak for a while:

I’ll be getting an infusion every other week for a year.

I’ll be dealing with a whole new array of side effects.

I’ll be okay.  Same lake. Same water. Same sky. Same island.



Different house.

But, one last concession for those of you who simply must have a finite visual: my tumor did shrink, from 5.5. cm X 3.0 cm, to 4.4cm X 1.8 cm. 
Take that.


Oh, and the trade name for my new immunotherapy drug?

"Imfinzi."

Cool, eh? Sounds like a low-riding, self-steering luxury convertible sports car.

More as we go, El




Wednesday, September 12, 2018

DAY 046 -- "The Surprise Evidence"



Thus far on this journey, we’ve had causes and effects and precipitants on precipices; we’ve had surprises and monotonies and expectations of expectorants; we’ve laughed, collapsed and risen from the dread (awful puns a bonus).

We’ve made it to here with a now shrunken tumor. The full report is still pending, but the initial review is promising. Now, on to the next phase of my whack-a-mole game with R.C. (Rad Chemo):

Immunotherapy.


I could write a scientific chapter & verse on this mode of cancer treatment, but you have Google, too. Suffice and simply to say that it’s a way of training my body to attack cancer from the inside out, instead of going at it from the outside in.

Just think of me as a human antic-cancer microwave. For the next few months, that’s what I’ll be. I’m just hoping that my turntable doesn’t slip off the rollers.

Meanwhile, because I think we both need a good distraction today, here are three random mind clouds drifting by:

How did I get to be this old on this planet and not know about allelopathy? (Go Google).



It’s best demonstrated by this pin oak in the back yard.  Before my sweet scientist/plant biologist wife Diane enlightened me, I didn’t know trees (or any plants) had this encircling, stunting, survival mechanism. I always thought it was just tree shade repressing the surrounding grass.

Silly boy.

How did I get to be this old (embarrassingly, as a New Englander) and not know that sunflowers were not just that one big-headed smiley variety, but Ma Nature also produces a variety that grows several heads?


Again, enter Diane, planting the surprise evidence in the side garden.

How did I get to be this old (ESPECIALLY as a New Englander) and not know that moose sometimes kneel to eat? If I thought about it at all, I thought they operated more like wide-stancing giraffes.



None of the above, and all of the above, has everything and nothing to do with my cancer. I’ll let you sort it out.

More as we go, El







Saturday, September 8, 2018

DAY 045 -- "I'm Ready Ready Ready"

Today?


Four little words, hitting me with almost the same impact that seven big words did this past July 1st (See: Day 001 – The Arrival Of Rad Chemo). It seems like it was only a million years ago when I was in the Emergency Room and heard the attending Doc tell me with that deadpan, unceremonious delivery:

“You have a mass on your lung.”

But, today, if it’s possible for language to undo language, my oncologist told me -- after a summer of radiation and chemotherapy treatments (I named my cancer “Rad Chemo”), a lava flow of endless side effects, a physical suffering and a mental anguish that I’d be hard-pressed to find anywhere else in my life:

“Your tumor has shrunk.”

Yahoo. Yippee. Hooray. (I’ll withhold the exclamation points for now, because there’s still a journey ahead with Rad Chemo, but you get the idea.)

A good news day.

From here on, though, we’ll call Rad just plain “R.C.” to keep him honest, and because I feel like I still have a stowaway inside me. But, let’s say that Shrunken R.C. took a big hit, and on we go now to a long course of Immunotherapy.


This also came on the day that R.C.’s radiation burn finally approximated, and for that I’m keeping the exclamation point!

So, let’s leave this on the upbeat with a song I first heard in boyhood. It was beyond my bedtime, so I had the volume low but my ear pressed on the console box radio speaker, tuned in to the early days of Rock 'n' Roll, and on came Little Richard doing “Ready Teddy.”

It put the hook in me and kept me up all night (“to the early, early night”), and the genre was then and forever a part of me.

For some reason, it’s revisiting me today with the news of R.C.’s asskicking and radiation burn resolution, so I’m going to stream it for a while.

Way past my bedtime.

With the volume UP:

I shuffle to the left, I shuffle to the right,
Gonna rock 'n' roll to the early, early night,
I'm ready
ready ready teddy
I'm ready

ready ready teddy
I'm ready

 ready ready teddy
I'm ready ready ready to

rock 'n' roll.

More as we go, El



Monday, September 3, 2018

DAY 044 -- "And A White Noise Machine"


Here again, I’ve missed a few chronological days of blogging herein, though I haven’t adjusted the numbers. This is as it should be, because it mimics how my cancer and treatments have progressed: sometimes as scheduled, sometimes out of whack.

No matter. The truth is the truth, delivered in dribs or in drabs.

Big week coming up, with follow-up diagnostics, bloodwork, scans, oncologists.  This will show what’s happened to my cancer (or not) after weeks of chemotherapy and radiation.

Nervous? No more nervous than I was that time I was clutching a daisy between my toes and dangling upside-down from a cliff above a river full of ravenous alligators with my hair on fire.

Heading into the (first) stretch of healing, I’m still in the grip of the side effects:  Poor appetite, food that tastes like something between boiled cardboard noodles and fried dirt pancakes, liquids that swallow like a gritty burnt milkshake, and fatigue that hangs on me like a torn curtain in a half-collapsed proscenium (too much metaphor? Me, too, but I’m all about indulgence when I can get it lately).    

A better one might be that I feel like an Energizer tortoise in a fluctuating battery charger.

Or a rusty propeller beanie.

Or a clam.

Do you get the feeling that I’m trying to play for time?

I have noticed that I latch on to things now that feel like sources for hope and healing. Odd things. Pre-cancer, I wouldn’t have been so open for inspiration and deep meanings, but this disease does have a way of rerouting thought processes, even the ones that I long thought inflexible, if I thought about them at all.

For example, this pic of my dahlin’ Diane just … eking out ... a couple inches more height than our garden zinnias, and they’re not through growing. Why does that now seem so significant to me? Well … if a flower can thrive and grow high as my sweetheart’s eye, so can I.



Or, when I spotted this truck in Wells River, Vermont.  Why, if Man can make a truck run on wood, I can make my body live without cancer. 

Weird logic?

No doubt, but I like thinking of it that way.


Or, this bedside night table that I now deem an insomniacal survival kit: Two water bottles, a back-up ginger ale, a radio-clock, reading glasses, a New York Times Sunday crossword puzzle book, an antique heirloom stained glass lamp  and a white noise machine.


All directed at enhancing the healing.

More as we go, El













Wednesday, August 29, 2018

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



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