I don't think I would have thought a few months ago that I would miss how hard it was, but in an odd way, I do.
But first, the torn landscape you see above you.
The really obvious slash is where they put in--and then later took out--the port. The Surgeon did not take me up on my suggestion to cut perpendicular so I'd have an an itersection adorning me. Ah, well. There is still dura-bond on the slice--the medical term for superglue that was actually supposed to stick your skin together. There are internal stitches that are supposed to melt away. Though with my hernia and when the port went in it didn't really work like that, and the NP at the city-state had to tweeze and pull to slide the not-disintegrated thread out of the holes. Very weird feeling--but not completely unpleasant. I think it resides in the same category as scab-picking.
Anyway...sorry. Got distracted. 'Distraction' actually comes from the Latin for 'scab picking.'
Did you know that if you pick a scab and put it in your mouth, but DON'T CHEW IT!, it will eventually become almost completely clear? I shit you not. Takes about as long as it does to get to the center of a Tootsie Pop.
OK, that was another tangent. I'm gonna blame the pred. Sorry. Back to the photo.
The two round red lumps below the slash are where the rattlesnakes went in over and over for nine months. Though the port wiggled a bit and was never absolutely locked down, it was always within a centimeter or so of the same spot, so the target area for the rattlesnakes was always pretty much the same. Hence the spots from all the poking. Not sure how much they will fade, or how long that might take.
Above that on my neck is the slowly healing scar from the removal of the lymph node in April for testing. That lymph node came back non-cancerous, but I guess they don't put them back in--it's not like a spark plug that turns out not to be fouled.
And just under my chin there's another scar.
No idea.
I thought that was where Lugnut--our dog who mercifully died before having to smell cancer on me or sense our devastation without being able to tear and kill what attacked--validated my jaw while we were playing once.
But I found that scar farther along my jaw, closer to my right molar.
This scar under the chin could also be dog-play related, but the list of possibles is just too long. Could be bike handle-bars. Gravel. Pavement. The head of a guitar. Anything, really.
Once when I was a tween I was lying on a skateboard as it sped down a hill, and the laces from my sweatshirt hood got caught under the front wheels--sucking my chin to the pavement at twenty miles an hour with an offensively efficient yank. But I guess skin bounces back when you are young, and there's no poison slowing down all your self-preservation systems.
Oh, and the talisman. I mentioned that a while back and then never returned to it. My bad.
The therapist suggested that, as maintenance started to envelope me and I kept pushing at the bounds of my health and wanting things to get better faster, maybe I should find or create some symbol that I could refer to in order to ground me. I originally planned a tattoo around the port slash--and will still get it--but my platelets stay depressed by the maintenance chemo, and so now is not the best time to go get a million needle holes plugged full of ink.
Even though I would return to Dragon Moon in Glen Burnie (one of the many Baltimore outliers with names significantly prettier than they are) where Mick would hopefully oblige me yet again with her skill with the paint-dagger. Other than the addition of some dates to my back, I have gotten all my tattooing there, and the place is clean and sterile and well-run.
But still, I see what the Drs are saying, so I'll wait...a little.
Until then I have my talisman. The silver tube has some stuff in it that is greater than I am. It's not worth getting into, and is totally personal to me and my take on things. It doesn't really matter what's in there; it could and should be different for everyone. It is just that it is something that has the power to make me take pause. Step back. Calm down.
You see, the nine months of main chemo protocol were a dragon. Legions of dragons, spitting fire and armored and cruel and powerful. Swooping above me, blocking out the sun, leathery wings reeking of brimstone and gore. I could point at their silhouettes against the sky over Long Island. I could hear their screeching shrieks. I could see the gouts of flame reflected in the East River.
In that sense, main chemo is easy (pause to observe a sentence I will probably never write again).
Main chemo is an enemy, and a time-frame, and distinct lists of shit that can and might go wrong with you. Demarcated catalogs of exactly what organs might shut down, what components in the blood might fail or turn into hydraulic fluid, what four days would probably be spent sitting or kneeling in the smallest room in the house.
There was a clarity. A battle plan. Even if you were losing, you knew where you were.
Maintenance is...is...
...is like trying to punch fog.
Everything is better, but there's nowhere to hang your hat. Its very strange.
I feel a little off--is it chemo, is it fatigue, is it a regular throat cold? My stomache is roiling a bit--did I eat the wrong thing? Is the methotrexate scouring my guts...again? Should I take a preemptive Immodium and not leave the apartment?
Two and a half years.
Too many if's and what's. Too much goddamn subjunctive tense.
I know that it is a fabulous benchmark, and overall I know that it is progress. But the first weeks and months of switching from watching for dragons to swinging at mist are surprisingly difficult.
Which the therapist knew. Hence the suggested talisman. And so far, it's working a bit.
I just place a hand on it--the gesture of quickly putting my hand to my sternum is new in the household and still freaks N out, as she thinks maybe my heart just blew a valve or something, but she's getting used to it.
No mumbo-jumbo, no quasi-religious or faux-karmic interlude. Just a very simple grounding of myself back to the couch, or the bus, or wherever I am.
Anyone who's been reading along these months will know that the second most dangerous threat to me--behind the, uh, cancer--is me. Between thinking that eating a baby's weight in steak will fix anything and spinning my wheels in my head so fast you can smell burnt rubber on my breath, I am still my greatest obstacle.
And when I get to feeling like I don't know what is an ailment and what is natural and what is main-chemo hangover and what is maintenance-chemo malaise and what is what is what is what the fuck is happening!?...
I just tap the silver bullet (heh heh, just thought of it that way for the first time) and hit the reset button on this jangling stew of a mind.
Doesn't work every time, and N and I are still trying to sort of lift me out of the doldrums of this first month. But I'm getting there.
I don't have any goddamn eyebrows yet. But I'm getting there.
And as for the demotion in the post's title: I am not interesting to the Drs any more. Hurts my ego, but it is a good thing:
Today the latest bone marrow biopsy came back completely clean...again.
My blood counts are all exactly where they want them to be.
They don't need to see me for two weeks, and then just to check blood again to make sure it is all going according to plan.
I had to get stuck twice for bloodwork and vincristine today, and I had to take Zofran in case the chemo dug into my guts, and I will be on (a mildly smaller dose of the) pred starting today and through Monday.
But you know what? That's all par for the course. And more than that--it's what happens when it is going well.
The Dr was downright dismissive, in a proud and happy-for-me way: "OK, you're fine. Now get the fuck out of here because we have sick people to see. Congrats!"
That's a wildly hyperbolic paraphrase, and if the Dr used the language I use I think I'd shit my pants. But you get the idea.
He and the NP were annoyingly mellow about the good biopsy report; "Oh yeah, that was fine. All fine. Sheesh, how 'bout this weather, huh?"
Again, I get it, and I appreciate that this is not a major event to them because this is what they have been working toward. But I'm a dancing bear; I get a little sad when the drama goes away...little drama bear sad face.
So, tapping the silver bullet, let's ground this bastard in reality and then go to bed:
Molecular remission. All on schedule. No organ failure. No arc-vomiting or bowel wars. I ran four miles Sunday and four miles Tuesday. I'm working out on TRX bands three times a week, hanging from the door of the apartment, sweating like a whore in church.
And, oh yeah, I'm not dead.
Left foot. Right foot. Repeat.
