Oh boy
Sometimes, I’ll be sitting around, and something will send me back: a smell, a taste, a sight. I’ll be sitting there, and out of nowhere, there’ll be a dry plastic tube dangling from my chest, an all-too-real phantom of my past. It forks just past my ribs. The little plastic clamps sway on my stomach. As I shift uncomfortably, the scratchy plastic drags across my stomach, and all of the sudden I can’t feel it anymore; it’s drifted into the scarred dead-zone that covers half of my abdomen. Even in memory, I’m numb.
I feel the sticky, static-y plastic covering the tube’s entry into my chest, a little square just above my heart. Beneath that, I feel a damp piece of gauze, pressed down into my skin. When we take it off, the imprint will still be there, like an unpleasant fossil. It’s tight under the bandage, a reassuring feeling, compared to the open air. It’s reassuring not only because I know that it means I’m relatively safe from infection or a stray tug (As I wrote that, my hand shot to my chest before I could think, holding down tubes that aren’t there anymore), but because the pressure on my chest makes me more likely forget the tube in it.
A little white tube, maybe a tad bigger than an iPod cable. Rather than bits and bytes, it traded in life and death. It was the only option, a tube right into superior vena cava, just above my heart, because the sheer amount of drugs was too much for mere veins to handle. It was better than having to be stuck with an IV every day, but not by much.
When I was getting an infusion, you could see my neck pulsate every time the IV pumped.
I couldn’t go swimming, because it couldn’t get wet. I couldn’t take a bath. I could take a shower, but I’d have to wrap your entire torso in plastic. Even with that, I’d have to change the dressing-- the bandage-afterwards. I’d have to do that every few days, anyways, and I think that was the worst part.
The bandage was a taut adhesive plastic called Tecaderm that was placed over gauze. I’d have to take it off, and it would stick like hell to my skin, a stinging, burning, horrible sensation. It was like taking off a band-aid the size of your fist. Adhesive removers would help, a little. I couldn’t just rip it off in one smooth motion, either, because the area was so damn sensitive-reasonably so, given that I had an open wound in my chest.
I think about it often, but I don’t really, because I can’t remember. I get little moments, nothing broad, nothing overarching. But that’s what my childhood was, I guess. It was tubes in my chest, in my throat, in my arms, in my legs. I didn’t come out of being a kid with the reflexes to land from a falling bike or learning how to catch a fly ball; I came out knowing how to move, how to sleep, how to react, and how to live without ripping the tube right out of my chest. I came out learning how to keep on going when you do have to rip it out.
After chemo, your blood counts plummet. You have next to no platelets, so you become a temporary hemophiliac; your blood can’t clot itself. You have even less white blood cells, so, essentially, you have HIV. When you go out to public places, you have to wear a mask, so you don’t get sick. Most of the time, you do anyways.
One time, when my blood counts were low like this, I was staying at the Ronald McDonald house, right near the hospital, basically counting the days until I got a fever. That would mean I was sick, and I’d have to stay in the hospital to be monitored and all of that. Thirty-eight degrees centigrade became a very dreaded number.
This time, though, it was bad, much worse than usual.
I don’t remember much, I remember being in a haze, a detached fogginess clouding my vision, like my eyes were really far away from my brain.
I was really sick, and maybe septic.
My Broviac, that plastic tube, that open wound, was infected, and it had to come out.
They couldn’t put me to sleep, because my blood pressure was too low; they were afraid that general anesthesia would kill me.
I cried and screamed, in mere anticipation of the pain, I couldn’t even imagine what it was going to be like. I got local anesthesia, to try and numb the area, and some sort of tranquilizer, I don’t really know.
As such, I remember even less.
But, I remember that tube that snaked into a little hole in my chest. I remember the stitches that held it in place being cut, I remember the cold metal on my skin and the how the wound opened more with every little snip.
I remember seeing my mom and Dr. Laquaglia standing above me, surrounded by more people. I remember not being able to look down,
and voices. I remember screaming and asking how soon it was going to be over, but I don’t remember the answer.
I could feel them pull the tube out of my chest. I could feel it worming it’s way out of the inside of my body, and I could feel it, slick with my own blood, on my skin.
Then, when I thought it was over, they tell my I need a new central line; this time in my thigh, in my femoral artery. It was one
more thing, another painful process I couldn’t avoid.
Right now, as I think about this, as I struggle to remember something that maybe I’d be better off forgetting, I want to curl up into a ball and never have to do anything again.
It just seems so unfair.
I feel like after all this, everything else is just…gratuitous. Sometimes I feel like yelling at everyone, “Leave me alone! I don’t
want to have to work anymore, I don’t want to have to fight for anything! I’m done fighting, I’ve done my share, why do I have to keep doing it?”
I feel like everyone should take care of me, because I’ve earned it.
But then, I don’t feel like that anymore.
No kid should ever have to go through that, go through that pain, that torture. No kid should, but so many do.
And not just kids with cancer, so many kids. Kids who’ve been hurt in wars that they don’t even understand, the kids in Iraq, the kids in Rwanda, the kids in Sudan. Kids who are starving to death while halfway around the world kids are eating themselves to death. Kids whose own parents beat the, and kids whose parents can’t do the most important job in the world and just raise them right. Kids whose parents try as hard as they can to take care of them, but their 3 jobs just aren’t cutting it. Kids whose parents think there’s anything more important than them--kids whose parents have got it all wrong.
I think about these kids, and I realize that there’s still so much I have left to fight for.
I think about these kids, these kids who want to be happy just like us, these kids who play ball, who tell jokes, who pull pranks, who smile and giggle and laugh, and when I think of them, I realize why I can’t give up fighting.
If for nothing else, if you can’t keep up the fight for all of the people who are good in the world, if you can’t take your mind off of the bad shit that everyone inflicts on one another, just think of all the little things, the little ones, that are worth fighting for.
I feel the sticky, static-y plastic covering the tube’s entry into my chest, a little square just above my heart. Beneath that, I feel a damp piece of gauze, pressed down into my skin. When we take it off, the imprint will still be there, like an unpleasant fossil. It’s tight under the bandage, a reassuring feeling, compared to the open air. It’s reassuring not only because I know that it means I’m relatively safe from infection or a stray tug (As I wrote that, my hand shot to my chest before I could think, holding down tubes that aren’t there anymore), but because the pressure on my chest makes me more likely forget the tube in it.
A little white tube, maybe a tad bigger than an iPod cable. Rather than bits and bytes, it traded in life and death. It was the only option, a tube right into superior vena cava, just above my heart, because the sheer amount of drugs was too much for mere veins to handle. It was better than having to be stuck with an IV every day, but not by much.
When I was getting an infusion, you could see my neck pulsate every time the IV pumped.
I couldn’t go swimming, because it couldn’t get wet. I couldn’t take a bath. I could take a shower, but I’d have to wrap your entire torso in plastic. Even with that, I’d have to change the dressing-- the bandage-afterwards. I’d have to do that every few days, anyways, and I think that was the worst part.
The bandage was a taut adhesive plastic called Tecaderm that was placed over gauze. I’d have to take it off, and it would stick like hell to my skin, a stinging, burning, horrible sensation. It was like taking off a band-aid the size of your fist. Adhesive removers would help, a little. I couldn’t just rip it off in one smooth motion, either, because the area was so damn sensitive-reasonably so, given that I had an open wound in my chest.
I think about it often, but I don’t really, because I can’t remember. I get little moments, nothing broad, nothing overarching. But that’s what my childhood was, I guess. It was tubes in my chest, in my throat, in my arms, in my legs. I didn’t come out of being a kid with the reflexes to land from a falling bike or learning how to catch a fly ball; I came out knowing how to move, how to sleep, how to react, and how to live without ripping the tube right out of my chest. I came out learning how to keep on going when you do have to rip it out.
After chemo, your blood counts plummet. You have next to no platelets, so you become a temporary hemophiliac; your blood can’t clot itself. You have even less white blood cells, so, essentially, you have HIV. When you go out to public places, you have to wear a mask, so you don’t get sick. Most of the time, you do anyways.
One time, when my blood counts were low like this, I was staying at the Ronald McDonald house, right near the hospital, basically counting the days until I got a fever. That would mean I was sick, and I’d have to stay in the hospital to be monitored and all of that. Thirty-eight degrees centigrade became a very dreaded number.
This time, though, it was bad, much worse than usual.
I don’t remember much, I remember being in a haze, a detached fogginess clouding my vision, like my eyes were really far away from my brain.
I was really sick, and maybe septic.
My Broviac, that plastic tube, that open wound, was infected, and it had to come out.
They couldn’t put me to sleep, because my blood pressure was too low; they were afraid that general anesthesia would kill me.
I cried and screamed, in mere anticipation of the pain, I couldn’t even imagine what it was going to be like. I got local anesthesia, to try and numb the area, and some sort of tranquilizer, I don’t really know.
As such, I remember even less.
But, I remember that tube that snaked into a little hole in my chest. I remember the stitches that held it in place being cut, I remember the cold metal on my skin and the how the wound opened more with every little snip.
I remember seeing my mom and Dr. Laquaglia standing above me, surrounded by more people. I remember not being able to look down,
and voices. I remember screaming and asking how soon it was going to be over, but I don’t remember the answer.
I could feel them pull the tube out of my chest. I could feel it worming it’s way out of the inside of my body, and I could feel it, slick with my own blood, on my skin.
Then, when I thought it was over, they tell my I need a new central line; this time in my thigh, in my femoral artery. It was one
more thing, another painful process I couldn’t avoid.
Right now, as I think about this, as I struggle to remember something that maybe I’d be better off forgetting, I want to curl up into a ball and never have to do anything again.
It just seems so unfair.
I feel like after all this, everything else is just…gratuitous. Sometimes I feel like yelling at everyone, “Leave me alone! I don’t
want to have to work anymore, I don’t want to have to fight for anything! I’m done fighting, I’ve done my share, why do I have to keep doing it?”
I feel like everyone should take care of me, because I’ve earned it.
But then, I don’t feel like that anymore.
No kid should ever have to go through that, go through that pain, that torture. No kid should, but so many do.
And not just kids with cancer, so many kids. Kids who’ve been hurt in wars that they don’t even understand, the kids in Iraq, the kids in Rwanda, the kids in Sudan. Kids who are starving to death while halfway around the world kids are eating themselves to death. Kids whose own parents beat the, and kids whose parents can’t do the most important job in the world and just raise them right. Kids whose parents try as hard as they can to take care of them, but their 3 jobs just aren’t cutting it. Kids whose parents think there’s anything more important than them--kids whose parents have got it all wrong.
I think about these kids, and I realize that there’s still so much I have left to fight for.
I think about these kids, these kids who want to be happy just like us, these kids who play ball, who tell jokes, who pull pranks, who smile and giggle and laugh, and when I think of them, I realize why I can’t give up fighting.
If for nothing else, if you can’t keep up the fight for all of the people who are good in the world, if you can’t take your mind off of the bad shit that everyone inflicts on one another, just think of all the little things, the little ones, that are worth fighting for.