So here’s the thing. I’ve been kinda quiet lately, trying to get myself back into the groove of living outside the hospital. Steady progress but not yet convalesced to the extent I’d like. Baby steps.
Part of this has been the suspense. Did the three-quarters of a million bucks worth of hi-tech medical treatment work? Have I beat the odds? The bet was a stretch for even the most pie eyed optimist.
The 100 day benchmark is one of the key milestones for this treatment. Last week I went back to the hospital for the first time since September. Scans were scanned. Blood was drawn. Various professionals poked and prodded my person.
Typically the results are available same day. All my blood work was fine – salutary even – but the results of the CT scan were not ready. This is the true test of the situation.
High patient volume combined with short staffing for the holidays. No word came. I started having dreams about being back in hospital, only this hospital was in a Holiday Inn. In my ass-open hospital gown, I had to roll my chemo tower through the lobby where a plumber convention was underway. The tower was made of plastic and kept folding and collapsing.
So today we called. Had to know.
Turns out my scans showed no sign of residual malignancy. Treatment has worked as hoped. All clear.
I am in remission. I can hardly believe the news.
Happy ChristmaKwanzaKuh, y’all. Looking forward to the coming year.
In The Balance
A tad before noon on a perfect day. Cool, a bit of a breeze, bright blue skies.
Fate hangs in the balance.
Sometime today we will hear whether or not our house passes air quality inspection. Samples are in the lab. We are on pins and needles.
All work to remediate the unpleasantness is complete, the crawl space deep-scrubbed and hermetically sealed, the HVAC air handler disassembled and painstakingly cleaned, all ductwork replaced anew. Five air scrubbers and four dehumidifiers have been running 24/7 for a solid four weeks, raising the internal temperature of the house to right around 100*f for most of that time. One shudders to anticipate the power bill that attends to this; the electric meter is flashing so fast you cannot really see it. Then again, this will amount to but a piffle in the overall cost of things.
We – Stanwyck and the dogs and I – have been camped at the Mom’s two BR condo for the duration. Pros: Close to home. The dogs are happy. We are all getting along swimmingly. Walkable to coffee and other suchlike.
Cons: It is damnably “cozy”. Hard to work for any extended stretch of time.
Bottom line: How lucky we are to have had a place to land.
I had joked to a friend about being homeless for this stretch. That afternoon I watched a man push a bicycle laden with all his worldly possessions across 7 lanes of traffic to get from his “home” under the interstate overpass to wherever he was going next.
How dare I even?
One might say, if one were disposed to the cosmic woo, that the Universe has been generously offering us opportunities to ‘work on ourselves’. I would suggest that the Universe cares fuck all about the state of our selves, indifferently random in its relentless course.
That does not mean that I fail to recognize the opportunities no matter how they arise. Um, er, uh…most of the time anyway. Or at least sometimes.
One scene in particular stands out. Legendary non-Conformist theologian Phil Doddridge – one of those people who would today be the target of sneering as some kind of ‘social justice warrior’ – finally has the opportunity to have a discussion with one of the Master Builders, an architect of the Cosmos. It is a chance at last for Doddridge to get an answer to the question that plagued him for centuries, both before and after death, wondering…
“Look, did we ever, any of us, really have free will?”
Aziel the Angle (as the carpenterish angels are known in Mansoul) shook his head.
…Did you miss it?
They shared a pretty good laugh at that. I laughed, too, though my guffaw tapered off to mordant chuckle pretty quickly.
I’m not willing to totally discount the possibility of human free will, but I am pretty comfortable with the fact that most people are generally too asleep to behave in any but the most automatic and predictable ways. It may be that it takes a shock to the system to jolt any of us into some kind of truly intentional action.
Or perhaps I am more naturally dozy than most folks.
Either way, we have been afforded copious opportunity to awaken of late. Yeah, I’ve been pretty darn sick. But I had great insurance and world-class care. All indications are that I am doing great. And yeah, the house was all nasty with mold and accompanying yick, but we found good people to repair the damage (fingers crossed!) at a fair-albeit-choke-inducing price.
And yea and verily were we cast from our home, exiled into the wilderness of the Mom’s cozy-yet-more-than-adequate condo. Granted, moving in with your Ma at age 60 is more than a tad humbling, but help was available. As it seems to have been at every step of the journey. We may arrive and depart this world alone, but in between we are part of an astonishing web of human connection. If only we might see it. If only we might participate in it, no matter how humbling and scary and vulnerable it might make us feel.
One of the more staggering outpourings of help has been the damn near utterly unbelievable response to the GoFundMe campaign some fine friends launched on our behalf. The generous display of love and support from friends and family and – wow holy cow wow – people we have never met has been more than enough to undermine my well-cultivated cynicism about the state of human kindness.
I have been dangling from the psychic tenterhooks ever since the air samples were collected. Everything should be okay. But maybe not. There might well be another duration of remediation and exile. I have been consumed with dread, with the idea that I really do not think I can stand another opportunity to work on my damn self.
But as I was lying awake last night after Stanwyck shook me from a dream – a dream in which a familiar corporate drone was heaving piles of work at me over the cubicle wall. Stanwyck wondered at whom I was forcefully saying aloud, “Fuck you! Fuck YOU!” Lucky for us both, I did not act out the chestal finger jab I delivered in the dream.
But really, there it was. Bring it on, Universe. Gimme your best shot, ya bastid. I got Stanwyck and the kids and a universe of amazing friends on my side. Hit me with your best shot. I can take it. Fuck you! Fuck YOU!
Now I will go sit in a corner and tap my fingers incessantly until the call comes. Are we in or are we out? I can take it…
First things first: My one month old immune system seems to be humming along just fine, thanks. Blood counts are all close enough to normal to be considered normal. Once again I am free to shake hands and go about in public without that silly face mask.
That’s plenty okay.
I am still avoiding children as I have not yet received my childhood re-inoculations, and besides, your little dearies are seething vectors of all manner of petri dish horrors. And if we meet and you have the flu or ague or catarrh, please give me a friendly wave from no less than six feet away, thanks.
There are no apparent signs of lymphoma recurrence, and that’s plenty okay, too. The real test on that comes in December when I go in for CT and PT scans. If I notice any lumps or swelling before then, the game board changes, but so far none of that, so okay okay.
The brain and physical stamina are still gone all spritzandpoppin. But that’s just a time thing, so okay.
My appetite is back, but my taste for coffee has vanished. Bet short on coffee futures. But the one beer I’ve had tasted GREAT, so okay.
Not so much okay: When we were given clearance to leave Gainesville and return home – well ahead of schedule – we were elated. Finally, a chance to return to normalcy, whatever that might look like after all this kerfuffle. But less than 24 hours after returning home, an air quality assessment we had done on the house came back with sirens and flashing lights: Get out now, especially the guy with the new immune system.
Not so much okay so much.
The Universe is demonstrating a very sick sense of humor. We have a toxic mold issue that is dangerous to a healthy person, and life threatening to a brand new immune system. We vacated the house until we can have remediation work completed. Me and Stanwyck and the dogs are piled into my Mom’s 2 bedroom condo for nearly two weeks now, with at least another 2-4 to go.
Definitely not okay. But tolerable.
The repair work for this is stupidly expensive. Best case is that the worst of the infestation is under the house and that the mold in the living area itself is relatively mild. After scrubbing and spraying and sealing the crawl space under the house, the remediators will run several refrigerator-sized air scrubbers in the house for a few days in hopes that a re-test will come up mold-free. If not, we will have to have every item and surface in the house hand cleaned, and that includes books, and that means every surface in every book, meaning every page, one at a time, and etc. If it comes to that, the expense jumps exponentially and several hundred books are likely headed to the landfill. And the Moms will get to enjoy our company for another 6-8 weeks.
This is all so not okay I can. not. even.
But hey, not everything will be okay, but some things will, and eventually other things will sort out, too. And then the Universe will throw another spanner and you’ll either deal or you won’t, and if you don’t you’ll be dealing anyway, just without exerting the choice of sifting the ashes to find the nugget that sparks the gratitude. And really, that may be all the choice you get in some situations, so why give it away?
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.
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
Short attention span
Difficulty finding the right, uh,
Difficulty learning new skills
Short attention span
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.