I was watching “Everest” the other night, an old IMAX documentary on a crew that summited during the disastrous 1996 season, and an image stuck in my head of the climbers taking those last plodding steps to the summit. Although I have no desire to ever do something like that I’ve watched enough docs and interviews with climbers to know that at that point it’s more about human will and less about conditioning or technical ability … just a personal struggle to take the next step when everything in the universe is screaming at you to turn around and your body is actually dying due to the lack of oxygen above 26,000 feet. One more step. Then another. Then another.
I feel something similar in that reason and hope have fled the building and now I just go through the motions trying not to think, trying to take the next step and then the next through the side effects and the test results and the promise of nothing but more of the same, or worse, to come. But that last week in the hospital really beat me up not just physically but mentally and emotionally as well, and I still feel off-balance because of it. Something has changed, and not for the better and I’m now focusing on each step to the detriment of the journey itself, which I find myself constantly questioning now.
First let me say I don’t feel good. I would have updated sooner but as some of you reading this know the effects (side) of chemotherapy is cumulative. The last cycle sucked, but this one? Jesus. VTD-PACE week went fine, or as fine as getting six different chemos at once while being isolated in a hospital can go. I’ve found with the frequent cancer-related transformations of the horrific into the commonplace comes a difficulty in not thinking about what’s going on. As I’ve written before I tend to survive in a state where I just meander through life’s turns and try not to think too far ahead to maintain my sanity. When you are alone in a hospital in the midst of 96 hours of chemotherapy, however, that becomes impossible. It waits for you around the next corner on your nightly walk in circles around the unit, always ready with the same question when you least expect it.
How the fuck did I get here?
I kept asking myself unanswerable questions like this, over and over and over again until it became some odd soundtrack in my life that I couldn’t turn off. It’s like the cancerous version of being trolled with Rick Astley.
I had … a life. I’m convinced, the more I look back on it (a standard practice for the Doomed) that I’ve monumentally squandered it at key points, but I can’t fix that now — the uselessness of rear-view mirror epiphanies, right? And for the past four-ish years I’ve dealt with this diagnosis at somewhat of an arm’s length. Knowing, processing, but not BELIEVING. Huge difference as it turns out.
Is this it?
I feel like I’m dying, in earnest. It’s all so tiring. Soul-tiring. This meat popsicle I’m wearing has had about as much as I can dole out, I think. Everything hurts, or tingles, or feels numb. Thanks to the massive amount of steroids I can’t shake a cold I entered the hospital with which isn’t helping either, but this is a tired that goes to the bone and beyond (ironically, being that I have Myeloma). It’s been a hell of a battle so far but not only do I not feel right now that I’m winning, I feel that I’m accelerating losing. And when I stare down the barrel at possibly doing one more cycle of this and then something even more hardcore like another stem cell transplant right after, then CAR-T, then God knows what’s next, I feel less like a human and more just like a science experiment or a cautionary tale about karma and random chance.
If I’m honest I’m just not sure I have much more left to fight this, and as the treatments become more intense I’m not sure what the fucking point is either. When does it end? Quality of life went out the window a long time ago, and given current debates I wonder if I’m just another drag on the system, the thin edge of a bell curve that needs to be snipped off by statistical certainty to make the credits and debits columns balance again. I get that I’m fighting to spend more time with my daughter but even she knows something is badly off the rails at this point. I love that kiddo fiercely but I just am not sure I’m equipped to keep fighting just for her. I hate that admission but there it is — I’m just human. Less than human right now, or at least it feels that way.
Everything feels “off” to me — I’m not even sure how to describe the feeling, but as an example I’ve had to sit myself down to do reality checks on whether I’m even here anymore. How weird is that? I feel like a ghost in my own life right now, isolated, interacting but not being interacted with, observing but not participating, loving but unloved. Everything feels tiring and holds no interest for me; it’s like a dam burst and the sickness, all of it, has poured out and tainted everything in my life suddenly. It all tastes sour now.
What’s more I’m really feeling like an inconvenience. That’s one of the gifts a terminal disease gives you that people don’t really talk a lot about. Sure, people who don’t know their ass from a hole in the ground write pretty pieces about how when one of us gets cancer we all get it and blah blah blah, but when’s the last time you read about what it’s like to be that person in the middle? I’ve done the group thing and seen the looks the Doomed give their caregivers — it’s not puppies and sunshine. It’s furtive glances filled with crippling fear, monumental guilt, and horror at what our disease has wrought both to us but also AROUND us, the collateral damage of something we couldn’t control that has gone south in ways we couldn’t have possibly predicted.
Then again part of that may be just me projecting. I’ve led a mostly pragmatic, passion-less life, so should I be surprised at the end when the pragmatism of those around me is reflected back at me? Dunno. Shit I would just like a hug occasionally or the right question.
On that note, however, several friends visited me in the hospital which was a welcome surprise, especially when my own family didn’t. I’m not used to that but it meant the world to me and I didn’t want to come across here as not appreciating every second of their taking time to spend with me. “Thanks” doesn’t cut it, but thanks all the same.
I’ve spent four years watching death come for me at five fucking miles an hour and now it’s filling the rear-view mirror. What’s more it’s apparently forcing introspection and analysis of my life I’m just not prepared to do, a pre-St. Peter at the Gates review that is leaving me feeling empty and meaningless as a human being. I’m trying to come to grips with who I am in the waning moments of life and finding the emptiness I knew was there, trying to reconcile who I am/was with what I wish I was/had been and finding it all wanting.
It’s a little too much.
So yeah, feeling a bit defeated right now, beaten down and left in a ditch with no clear path back into the sunlight. So I take more plodding steps towards a summit I no longer, if I really ever did, believe exists, and now I’m questioning whether it’s worth it. I guess I find out Friday when I see preliminary results on my numbers and meet with my oncologist. Another step. And another after that, whatever it will be.
Incoming pithiness to irrelevance transition … on the bright side I did find a really good hot dog place to order from when I’m hospitalized, so there’s that. Even the nurses were jealous of the smell. Probably not so much of my breath the rest of the day thanks to the onions, but I’m sure they’ve smelled worse in a cancer ward.
Sometimes life just needs a good Chicago dog (hold the tomato) with a side of fries.