Day 10: Well Hello, Cousins!

If you arrived here from my article in today’s Bitter Southerner…..

Welcome! Come on in.

If you are new here, this is my home base for rambling, witterings, rants, laments, and other such. Lately things have been focused on my stem cell transplant, because what could possibly be more captivating than details about, well, me?

I’m pleased you dropped by. Stay as long as you like, come and go as you please. But be careful about the one-eyed cat. Trust me.

If you are regular here at the shack, you know the rules. Wipe your feet. No spitting. Be kind. No cussing unless cussing is all that will do.

Now on to business.

When I posted on Day 5, I told you that “I feel pretty bad, but not terrible.”

Let’s just say that sunny outlook changed right damn quick. Day 6 was the proverbial long dark night of the soul, albeit one that lasted about 48 hours. I’ll spare you details of the suffering, but it was dark and frightening and helplessness-inducing and all manner of dark mojo. (And still, none of it has been as specifically awful as the Tick Apocalypse of 2014.)

So let’s blast through Days 7 and 8 as if they never happened. Day 9 found me awake at 6.3o a.m. with three pitch ideas, a scheme for reorganizing the home office, and an itch to play a damned guitar. For the next five hours I interspersed these endeavours with some robust physical rehab action. I was a World Beater.

Then I crashed to Earth with just enough energy to watch the US Open final.

Today, Day 10, I awoke at a more sober hour, but no less enervated for achievement. More writing, more rehab, and devouring a huge chuck of Nate Chinen’s terrific new book Playing Changes.

Buy this, read this, write in it, love it.

I have not managed 50 pages in a sitting since before we came to hospital. I am very encouraged.

I kept up the snappy pace, doing laps around the nurse station, hailing all good fellows and ladies well met.

And then a nurse said “Hey, looking good.”

Was I ready with a snappy comeback? Is the Pope an enthusiastic outdoorsman?

“Pngr diung shkr,” I parried.

It was clearly time for a lie down. A long one.

There’s this thing everybody in Cancer Land calls ‘chemo brain‘. Signs and symptoms of chemo brain may include the following:

  • Being unusually disorganized
  • Confusion
  • Short attention span
  • Difficulty concentrating
  • Difficulty finding the right, uh,
  • Difficulty learning new skills
  • Short attention span
  • Difficulty multitasking
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Short attention span

In short, dumber than a box of hair.

But the super most excellent thing about chemo brain is that one minute you might be expostulating like the third-act Scarecrow in Wizard of Oz and in the next blink of an eye you revert to Act One Scarecrow.

Best estimates on shaking chemo brain range from six months to a year or perhaps even more. (That ‘perhaps’ is doing a lot of work right there, and not especially well.) Apparently it is, as they say, just a matter of time.

Before I checked in, I removed myself from our car insurance. One reason is to save a little money. The other is that I do not want the temptation to hop in the car and joy ride down to the malted shop to hang with Reggie and, um,

Never mind. Forget I said anything.

I also have really intense dreams in which a conversation in the dream will cause me to respond out loud, which wakes me up, which scares the shit out of me because the person I was talking to has been replace by one or more severely alarmed observers puzzling whether to get the restraints on me before I get spagiggady, and yes I know that is not a real word, at least not yet, and since the word I want won’t come I will devise its replacement.

All this to say: Things are well and truly on the upswing here. Blood counts are where they should be, my physical/mental condition is ahead of the curve. There is a good chance I will get out of here next Monday. (They don’t do transplant discharges on the weekend, and Friday is likely too aggressive a target.)

From there it’s 2-3 weeks in the halfway house – though some beat the odds and get out quicker. Again it all depends on bloodchemistry and how I am tolerating the transplant.

So far, so spiff.

In the meantime, y’all introduce yourselves to each other and please tidy up before you leave. I’m late for a chat with Jerry Garcia and AP Carter. I hope I can keep it to myself.

Til next time…

LOVE EACH OTHER MOTHERFUCKERS!

It matters a difference.




DAY 5: Zippos in the Jungle Somewhere

We have arrived at the Great Decline, the leading edge of the Great Divide, beyond which is the Great Resurrection where Robo v2.0 either hums like a fine Swiss watch or reminds everybody of Windows Vista.

I am effectively stripped of my immune system at this point. The technical term is neutropenia. For the med tec(k)s among us, the details are: WBC<0.1; ANC=zero; Hemeacrit 33.7; and platelets at 19. This last number means that I will receive a platelet infusion over the next hour.

As my old pal Frankie told me about his chemo a few years back:

Basically they have to get you as close to death as they can without actually, y’know, killing you.

That is some hardcore torch-the-hamlet-in-order-to-save-it mentality right there.

As much as I resist, current conditions lend to metaphor. I am filled with a polyglot of chemicals and isotopes and re-jiggered stem cells and antibiotics and probiotics and stem colony growth factors. There is a system wide negotiation at play on multiple levels. Cells and mitochondria are at war. Molecular conflict is rampant. Organ functions are under close scrutiny to ensure no unexpected rebellion. System interactions are unreliable: One minute fine, the next as weak as a kitten. Treason and treachery may be afoot.

To be honest, it feels as if I am just a bystander to the whole shooting match, kind of like when the swells in DC took a day tour to watch the Civil War get decided in an afternoon.

“Oh, look there, Jedediah, those stem cells are skirmishing up the left flank.”

“And what ho, Sweet Nellie Constancy! Look at the way those cancer cells are on the rout! War shall be over by Christmas, most certainly.”

Twas that it were true. Recovery will be a many months affair, no matter how soon I blow this chicken shack.

The calendar looks more or less like this: I will likely remain neutropenic for another 4-7 days. My system will slowly begin to recover over the following days until, the good Dog willing and the stem counts rise, I might get out of here as early 9/15. After that, it is the Cancer Halfway House for 1-3 weeks so the team can have me close at hand in case anything goes all spritzinpoppin. Best case for getting home to dogs is late September.

That’s aggressively optimistic, sure. But I just executed an act of purest optimism by ordering this book, described by NYT as “a 426,100-word sentence that stretches over 1,000 pages — occasionally interrupted by a more traditional story, albeit one from the point of view of a mountain lioness.” 

Aside from the fact that this kind of thing is pure catnip to me, I ordered this with the old Vaudeville joke in mind.

I’m so old I won’t even buy green bananas.

The low down here is that I feel pretty bad, but not terrible. FWIW, the Great Tick Apocalypse of 2014 was far more physically grim. I am starting to develop the mouth and alimentary canal irritation that I was warned about. Nothing tastes or smells good. One sip of coffee this morning and I nearly wept at how bad it tastes. I am flat down zero on energy, and reading or typing for too long tends to make me woozy.

So here I sit, the boy in the bubble and the baby with the baboon heart, a prime demonstration of what the amazing minds of medical science can come up with. FWIW, that whole ‘bubble boy’ thing was a short-lived approach and is exceedingly rare these days. It turns out that while external agents can cause an infection or sepsis, it is far more likely that that which is already within me will serve as the source of aggravation. My usual biome may well loom as the greatest threat. Only time will tell.

These are the recited facts. Please do not feel bad for me at this time. There is way worse suffering out there than my own, and the fact is that I am damned near drowning in gratitude and love right now. It means so much to me to see that people are starting to visit this site regularly and spend some time with my witterings. If you know or are a writer, you know that kind of this means more than it might should. But no matter. Thank you all. If friends are wealth, I’m at Croesus level accumulation here.

Besides, I am indeed the world’s luckiest boy. Stanwyck is by my side throughout, and while the circumstances are grim, we have enjoyed some of the deepest and most rewarding time in our 36 years together. We are starting to talk about plans for after: Trips, activities, physical fitness.

This saga – perhaps the Greatest Story Ever Told – is ongoing and exceedingly rich. Something deserving of extended rumination and belletristic treatment.

I have begun each day here with Sister Mavis’s version of “Hard Times.” It is a solid reminder that our troubles may be plenty, but this too shall pass. And while we are at it, there are plenty of people around us who need compassion and a helping hand.

So you know what comes next, right?

LOVE EACH OTHER MOTHERFUCKERS!

It matters a difference.