Friday, September 13, 2013
Wednesday, June 26, 2013
The Song of Purple Summer: THE END.
When I was first admitted to the hospital, I had a "thing" about needles.
I didn't want them. No needles for me.
But I quickly came to understand that needles were now a part of my daily life. Every few days I would go and get blood drawn, and for the first few weeks it was an ordeal every time. My dad would come in and sit with me, holding my hand, and the nurse's would hold their breath, hoping they didn't get messed up, as I was a bit of a loose cannon which is a nice way of saying huge bitch asshole. They'd bring in the IV team, and even they had trouble because I couldn't relax, couldn't stay calm, couldn't keep from getting worked up.
Once, when we were on our way in to check counts, my dad suggested I find a song that made me relax, and play it on my iPod while they drew my blood. Well, at this time, all I listened to was the original cast recording of Spring Awakening. It was the perfect blend of anger and hope for a teenager going through hell. And so I took in my iPod and played "The Song of Purple Summer"--the final song in the show.
A summer's day a mother sings a song of purple summer
through the heart of everything. And heaven waits, so close, it seems
to show her child the wonder of a world beyond her dreams.
The earth will wave with corn
The day so wide, so warm
And mares will nay with stallions that they mate,
foals they've born. And all shall know the wonder
Of purple summer.
Listening to the words, I opened my eyes to realize that the tourniquet was off, the band-aid in the nurse's hand, and my blood in tiny vials on the desk. It was over.
I didn't have much trouble with needles from then on. I played "The Song of Purple Summer", and closed my eyes, and it was over before I knew it.
"Those You've Known" became my anthem for my fallen friends, "Bitch of Living" for all those times I wanted to kick people in the face, rip out the tubes, and give up.
The Make-A-Wish Foundation, being that I was 17 at the time of diagnosis, was generous enough to offer me a wish. I had only one. I wanted to just get to audition for the show. I knew they probably weren't looking for replacements, and I knew it was a long shot anyway that I'd actually be cast in the show. But the music of the show was so much a part of my treatment that it was in my blood now--really, though. I just wanted to get to sing it, and live it.
That, or Disneyworld. That's what I told them.
But the Make-A-Wish foundation made it happen, and the entire creative team of Spring Awakening was kind enough to dedicate an afternoon to audition me in New York City, three months after my treatment ended.
Well, I was absolutely terrified, and the day of the audition, I couldn't believe what was happening. It was such a liberating day. I worked with everyone: the casting director, the director, the music director, learned choreography, worked on music, read scenes...
A month later, I received word that they were extremely impressed with my audition and that the tour was coming to Rochester, NY...and would I do the ensemble track for a weekend of shows? You don't say no to that...it was so unreal.
On a Friday morning I drove up to Rochester and spent five hours going over harmonies, learning music, choreography, movement, and staging.
And that evening, I had my opening night with the cast. Everyone on the tour--the cast, the stage management, the crew--everyone involved was so unbelievably welcoming and kind to me, and there were so many experiences from that weekend that I will never be able to forget.
But one of those moments that stuck out the most was during my last performance. During "The Song of Purple Summer" there is a moment when the ensemble stands on the chairs and sings the chorus a capella, before swelling into the final section. And as I stood on my chair singing those words, it was like a slow motion scene in a movie. It became hard for me to sing, and all of a sudden I could feel tears stinging my cheeks. The ensemble members on the other side of the stage must've seen, because they smiled at me as they sang, and I even saw a few of the characters onstage tearing up--that moment was mine.
Because in that moment, I realized how I'd come full circle. I'd been a sickly little girl listening to this song, squeezing her dad's hand through pinpricks and spinal taps, injections and MRI's, chemotherapy and radiation...and here I was, on this big stage with some of the most talented theater performers, singing "The Song of Purple Summer", doing what I've wanted to do since I was young. I kept asking myself, did you ever think in a million years when you were laying in that hospital bed that one year later, you would be here, singing this song onstage with the national tour of Spring Awakening, a cancer survivor?
That moment...marked the real ending of my cancer experience. As cheesy as it sounds, it was my liberation from the dark year of 2009.
This post is my "Song of Purple Summer." It's the end. When I started this blog one year and forty posts ago, it was a healing tool. It allowed me to get all of my frustration, anger, and triumph out of my head, and filed away somewhere.
But I feel it becoming more of an obligation than an outlet. Because now I've outgrown it. This blog has served its purpose in my life. If I continued this blog, I would be dwelling in the past.
So that's all there is, folks. Jesse doesn't want to be disgruntled anymore--and it's a good thing. It's a milestone. I'm graduating from college in December, and I'm really ready to start fresh.
The blog won't be gone. It'll be here. Every once in a while you'll hear from me. But right now, I'm done confessing.
I want to thank you all for supporting this blog. I never imagined it would gain the following that it has, and I'm extremely grateful--and of course, any of my fellow cancer fighters who need somebody to shoot the shit with (and really, anyone in general), can contact me by email (jesspardee@yahoo.com).
Now, my children, go forth, and listen to some Lana Del Rey.
Much Love,
Jesse
And that evening, I had my opening night with the cast. Everyone on the tour--the cast, the stage management, the crew--everyone involved was so unbelievably welcoming and kind to me, and there were so many experiences from that weekend that I will never be able to forget.
But one of those moments that stuck out the most was during my last performance. During "The Song of Purple Summer" there is a moment when the ensemble stands on the chairs and sings the chorus a capella, before swelling into the final section. And as I stood on my chair singing those words, it was like a slow motion scene in a movie. It became hard for me to sing, and all of a sudden I could feel tears stinging my cheeks. The ensemble members on the other side of the stage must've seen, because they smiled at me as they sang, and I even saw a few of the characters onstage tearing up--that moment was mine.
Because in that moment, I realized how I'd come full circle. I'd been a sickly little girl listening to this song, squeezing her dad's hand through pinpricks and spinal taps, injections and MRI's, chemotherapy and radiation...and here I was, on this big stage with some of the most talented theater performers, singing "The Song of Purple Summer", doing what I've wanted to do since I was young. I kept asking myself, did you ever think in a million years when you were laying in that hospital bed that one year later, you would be here, singing this song onstage with the national tour of Spring Awakening, a cancer survivor?
That moment...marked the real ending of my cancer experience. As cheesy as it sounds, it was my liberation from the dark year of 2009.
This post is my "Song of Purple Summer." It's the end. When I started this blog one year and forty posts ago, it was a healing tool. It allowed me to get all of my frustration, anger, and triumph out of my head, and filed away somewhere.
But I feel it becoming more of an obligation than an outlet. Because now I've outgrown it. This blog has served its purpose in my life. If I continued this blog, I would be dwelling in the past.
So that's all there is, folks. Jesse doesn't want to be disgruntled anymore--and it's a good thing. It's a milestone. I'm graduating from college in December, and I'm really ready to start fresh.
The blog won't be gone. It'll be here. Every once in a while you'll hear from me. But right now, I'm done confessing.
I want to thank you all for supporting this blog. I never imagined it would gain the following that it has, and I'm extremely grateful--and of course, any of my fellow cancer fighters who need somebody to shoot the shit with (and really, anyone in general), can contact me by email (jesspardee@yahoo.com).
Now, my children, go forth, and listen to some Lana Del Rey.
Much Love,
Jesse
Wednesday, June 12, 2013
OMG I'm So Sorry! I Didn't Realize Your Life Was So Hard!
If you haven't figured it out by now, I sort of post whenever the hell I feel like it so...yeah.
To be honest, I've just been a little depressed lately what with the Jodi Arias trial not resuming until July 18th...it's really got me down, and my thoughts have been so all over the place--I just couldn't possibly bring myself to post on time when my whole life is on pause. But no worries, I'm getting my shit together. Bad Girls Club All-Star Challenge will keep me going.
But on to cancer--you know, my most identifying quality. One of the most common phrases I hear on almost a regular basis goes a little bit like this: "I'm so sorry, I shouldn't be complaining to you." To which my mental response is usually, "And yet you are..." BUT I would never say that aloud, and I do a pretty good job of reminding myself that not everyone has had to deal with something as awful as cancer, and that I should be understanding and so on and so forth.
During my treatment, however, I was not so understanding. As I've said countless times, I was a nasty ass bitch that entire year, and chances are pretty likely that if you were facebook friends with me at the time, I read your statuses and judged you by how petty and trivial your problems were. For example, someone might post the following:
Just dont knoww wut 2 do anymore. It's lykke y do i even try??? </3
To which I would say/think (and in some cases actually post):
OMG I'm so sorry! I didn't realize your life was so hard! Yeah, while I was getting my 3rd dose of toxic chemicals this morning, I was thinking about how you bought the perfect thong at Charlotte Russe so you could wear your pants too low and get Johnny's attention--and clearly by the tone of your status, I see that it didn't work! How will you ever find happiness? I literally didn't realize that your life was so hard. Excuse me while my dad gives me this injection--but please, by all means, keep me posted! I'll be on the toilet for the next 12 hours with severely painful constipation but I need to know that you're doing okay!
I did that. Every night. And I know. It's despicable. But you'd be surprised how exhilarating it was. Because its what many people expect I already do, and because I sometimes miss this healthy release of anger, I decided that for this one blog post, I would allow myself the pleasure of that kind of bitter judgement and self-pity. So here we go:
But then [Justin Bieber] took a stand, letting loose with this instantly-infamous statement: “I really just want to say, it really should be about the music. It should be about the craft that I’m making. This is not a gimmick, I’m not — I’m an artist, and I should be taken seriously. And all this other bull should not be spoken of.” (Entertainment Weekly)
OMG I'm so sorry! I didn't realize your life was so hard! People aren't taking you seriously??? With musical masterpieces like "Baby", "U Smile", and "Beauty and a Beat"??? You must be kidding! You poor, poor thing. No wonder you drive your disgustingly expensive car at 100 mph in the middle of the night down your disgustingly up-scale neighborhood! Maybe once you kill an innocent civilian in your ridiculous f**king car, avoid jail-time because of your celebrity status and high-paid attorneys, and make ANOTHER BRILLIANT FILM about your wise, 19 years of life-experience starring you, your pet monkey and your girlfriend who used to be on Barney...MAYBE THEN PEOPLE WILL TAKE YOU SERIOUSLY!!!!!! Until that day though, dear Justin, I'll be here taking my gigantic horse-pills waiting for that crazy dialysis contraption. You just keep on keepin' on, Justin!!! NEVER SAY NEVER!!! I literally didn't realize that your life was so hard.
"For years I've always been so gracious," Kim [Kardashian] writes. "Every shot they take now just isn't flattering & crazy stories get made up, so why would I willingly just let them stalk me & smile for them?" (iVillage)
OMG I'm so sorry! I didn't realize your life was so hard! Why would someone who willingly allows cameras to record her every move ever be okay with so much attention? It's not like you can just deal with the paparazzi and escape to your enormous mansion with the bowling alley! People seriously need to be a little bit more understanding about your needs. I mean, gracious is an understatement! You're so gracious, in fact, that you've been goodly enough to allow men and women everywhere to watch you have sex with Ray-J! And goddamn, if only pregnancy were more flattering, maybe the pictures would be better...I just wish pregnancy could be easier for you Kim, I really do. I mean I've seen my share of suffering--hell, I've seen a six year-old suffer a stroke! But nothing could come close to the pain you must be feeling when you open a magazine and see a picture of your pregnant belly! So unflattering...you'd think after all these years of human existence, they could at least come up with an easier method for people who are filthy rich. My thoughts are with you. After I send out my positive energy to the victims of Oklahoma, Hurricane Sandy, Boston Bombings, The Newtown Massacre, and all of the sick and suffering, I say a little a prayer for you, Kim. I literally didn't realize that your life was so hard.
“People will stare at me no matter what and it’s the most irritating thing in the world. I got so much attention from all the guys, but I didn't get along with any of the girls. They were extremely jealous of me....when you look like me, it's not easy." --True Life, I'm Too Beautiful
OMG I'm so sorry! I didn't realize your life was so hard! How do you even get out of bed in the morning? I mean, I would look in the mirror and just start sobbing big wet tears of disdain at my perfectly tanned face and slender cheekbones. People never think about how miserable it must be to have long beautiful hair, perfect skin, and gigantic boobs! I mean, for people to force you to wear all those revealing outfits...is just--god it makes me so angry! Don't they know you don't want attention? Oh wait...no one forced you? You mean you voluntarily flash your breasts in everyone's face, and take place in female wrestling? Well...no. NO. YOU are the victim in all this, you gorgeous outcast, you. I truly hope I run into you sometime at the hospital while I'm getting my X-rays and you're getting your new tits. We can grab lunch and talk about how difficult it is for you to be a young, attractive, white female in 2013 society. Good luck and godspeed. I literally didn't realize that your life was so hard.
WOO! That felt good. I will now reassemble my positive outlook, and remind myself that the problems of one, however great or small, can be just as trying as the problems of another.
But sometimes celebrities deserve it...
OK I SWEAR I'M DONE <3
To be honest, I've just been a little depressed lately what with the Jodi Arias trial not resuming until July 18th...it's really got me down, and my thoughts have been so all over the place--I just couldn't possibly bring myself to post on time when my whole life is on pause. But no worries, I'm getting my shit together. Bad Girls Club All-Star Challenge will keep me going.
But on to cancer--you know, my most identifying quality. One of the most common phrases I hear on almost a regular basis goes a little bit like this: "I'm so sorry, I shouldn't be complaining to you." To which my mental response is usually, "And yet you are..." BUT I would never say that aloud, and I do a pretty good job of reminding myself that not everyone has had to deal with something as awful as cancer, and that I should be understanding and so on and so forth.
During my treatment, however, I was not so understanding. As I've said countless times, I was a nasty ass bitch that entire year, and chances are pretty likely that if you were facebook friends with me at the time, I read your statuses and judged you by how petty and trivial your problems were. For example, someone might post the following:
Just dont knoww wut 2 do anymore. It's lykke y do i even try??? </3
To which I would say/think (and in some cases actually post):
OMG I'm so sorry! I didn't realize your life was so hard! Yeah, while I was getting my 3rd dose of toxic chemicals this morning, I was thinking about how you bought the perfect thong at Charlotte Russe so you could wear your pants too low and get Johnny's attention--and clearly by the tone of your status, I see that it didn't work! How will you ever find happiness? I literally didn't realize that your life was so hard. Excuse me while my dad gives me this injection--but please, by all means, keep me posted! I'll be on the toilet for the next 12 hours with severely painful constipation but I need to know that you're doing okay!
I did that. Every night. And I know. It's despicable. But you'd be surprised how exhilarating it was. Because its what many people expect I already do, and because I sometimes miss this healthy release of anger, I decided that for this one blog post, I would allow myself the pleasure of that kind of bitter judgement and self-pity. So here we go:
But then [Justin Bieber] took a stand, letting loose with this instantly-infamous statement: “I really just want to say, it really should be about the music. It should be about the craft that I’m making. This is not a gimmick, I’m not — I’m an artist, and I should be taken seriously. And all this other bull should not be spoken of.” (Entertainment Weekly)
OMG I'm so sorry! I didn't realize your life was so hard! People aren't taking you seriously??? With musical masterpieces like "Baby", "U Smile", and "Beauty and a Beat"??? You must be kidding! You poor, poor thing. No wonder you drive your disgustingly expensive car at 100 mph in the middle of the night down your disgustingly up-scale neighborhood! Maybe once you kill an innocent civilian in your ridiculous f**king car, avoid jail-time because of your celebrity status and high-paid attorneys, and make ANOTHER BRILLIANT FILM about your wise, 19 years of life-experience starring you, your pet monkey and your girlfriend who used to be on Barney...MAYBE THEN PEOPLE WILL TAKE YOU SERIOUSLY!!!!!! Until that day though, dear Justin, I'll be here taking my gigantic horse-pills waiting for that crazy dialysis contraption. You just keep on keepin' on, Justin!!! NEVER SAY NEVER!!! I literally didn't realize that your life was so hard.
"For years I've always been so gracious," Kim [Kardashian] writes. "Every shot they take now just isn't flattering & crazy stories get made up, so why would I willingly just let them stalk me & smile for them?" (iVillage)
OMG I'm so sorry! I didn't realize your life was so hard! Why would someone who willingly allows cameras to record her every move ever be okay with so much attention? It's not like you can just deal with the paparazzi and escape to your enormous mansion with the bowling alley! People seriously need to be a little bit more understanding about your needs. I mean, gracious is an understatement! You're so gracious, in fact, that you've been goodly enough to allow men and women everywhere to watch you have sex with Ray-J! And goddamn, if only pregnancy were more flattering, maybe the pictures would be better...I just wish pregnancy could be easier for you Kim, I really do. I mean I've seen my share of suffering--hell, I've seen a six year-old suffer a stroke! But nothing could come close to the pain you must be feeling when you open a magazine and see a picture of your pregnant belly! So unflattering...you'd think after all these years of human existence, they could at least come up with an easier method for people who are filthy rich. My thoughts are with you. After I send out my positive energy to the victims of Oklahoma, Hurricane Sandy, Boston Bombings, The Newtown Massacre, and all of the sick and suffering, I say a little a prayer for you, Kim. I literally didn't realize that your life was so hard.
“People will stare at me no matter what and it’s the most irritating thing in the world. I got so much attention from all the guys, but I didn't get along with any of the girls. They were extremely jealous of me....when you look like me, it's not easy." --True Life, I'm Too Beautiful
OMG I'm so sorry! I didn't realize your life was so hard! How do you even get out of bed in the morning? I mean, I would look in the mirror and just start sobbing big wet tears of disdain at my perfectly tanned face and slender cheekbones. People never think about how miserable it must be to have long beautiful hair, perfect skin, and gigantic boobs! I mean, for people to force you to wear all those revealing outfits...is just--god it makes me so angry! Don't they know you don't want attention? Oh wait...no one forced you? You mean you voluntarily flash your breasts in everyone's face, and take place in female wrestling? Well...no. NO. YOU are the victim in all this, you gorgeous outcast, you. I truly hope I run into you sometime at the hospital while I'm getting my X-rays and you're getting your new tits. We can grab lunch and talk about how difficult it is for you to be a young, attractive, white female in 2013 society. Good luck and godspeed. I literally didn't realize that your life was so hard.
WOO! That felt good. I will now reassemble my positive outlook, and remind myself that the problems of one, however great or small, can be just as trying as the problems of another.
But sometimes celebrities deserve it...
OK I SWEAR I'M DONE <3
Sunday, June 2, 2013
They Tried to Make Me Go to Rehab but I Said Probably Next Year
Hello, my name is Jesse, and I'm afraid of brushing my teeth.
The idea of tasting the toothpaste, feeling the bristles, spitting in the sink, brushing my tongue...it is all absolutely terrifying. It is the absolute last thing I do in the morning, and I procrastinate until the very last second--really until I have to leave the house.
You see, when I first began chemo, I was very, very pukey all the time, and brushing my teeth would always make it worse--you swallow a little bit of toothpaste here and there, it mixes with the nausea you're already feeling, or the toothbrush triggers your gag reflex...it's a terribly dangerous game, the brushing of the teeth is.
It is one of many things that plague me to this day. I just can't brush my teeth with the same whimsical innocence anymore try as I might. I've tried it all too--I bought a fun mechanical toothbrush...to no avail. I even use Dora the Explorer Bubblegum Orajel training toothpaste to improve the taste of tooth-brushing--no luck.
I need help. I need professional help for my fear of tooth care, my chemo brain, and the suppressed memories that I refuse to call post-traumatic stress disorder.
BUT. I miscalculated. I miscalculated in the worst way. You see, in all my cancer power and warrior-ness, when treatment ended, I thought I could close that chapter of my life for good. Write it off as a terrible experience that I can tuck away in the depths of my brain for another day--I didn't need therapy right now. I'd look to get therapy once I'd restarted my life. It's something to decide upon later.
I saw a few counselors here and there...but have been reluctant to see anyone steadily because I know I'm going to have to unlock certain parts of my brain that I've tried like hell to keep quiet.
I love my family, and I can't blame us for the way we tried so hard to resume a normal life immediately after my treatment. It was what we fought for for so long...to be "normal". To go to the grocery store and not be bombarded by people asking about my health, to go wherever we wanted without having to worry about germs, or blood counts, or white cells, to have the ability to make plans that aren't scheduled around chemo dates, radiation times, and neupogen shots. As soon as we got the all clear...we tried to wipe the slate clean.
And I can't speak for my entire family...but I can tell you that at numerous times during my treatment, I thought they were going to have to take me to Psych. Whenever we drove out of the Upstate Hospital parking garage we would drive past Hutchings Psychiatric Hospital, and each time I'd point out the window and say, "you're gonna have to put me there. As soon as we're done at Upstate, you're gonna put me in there." I was mostly joking. But not entirely.
I know it's not entirely surprising that I was severely depressed during my treatment. I probably suffered more mentally than I did physically if we're being totally honest. Looking back, I understand that in many ways the depression caused more damage than the chemo...sure, the chemo did it's job, and totally wrecked my body, my cells, my organs. But it's absolutely amazing, the ways of the human body. The way our bodies are programmed to endure, to replenish, to fight, and to survive.
But the mind? The mind is another story, the mind is trickier...and I severely underestimated its power. Because while the body has that amazing ability to recover, the mind has the ability to recall. And sometimes what the mind can recall--consciously and subconsciously--can be just as dangerous. I have vivid memories of locking myself in the bathroom, sitting on the floor, crying and banging my head against the wall. I have nightmares about the tiny hall washroom where my mother held my hand as my father shaved my head. Squeezing my eyes closed so I couldn't see the hair falling...the tears that seeped out no matter how tight I shut them them. They were absolutely the darkest times of my life. Dark, icky, and not fun to remember.
I've been lucky in a lot of ways, because even though I tried to skip over the "mental recovery" phase, I've been able to keep myself in check. But a lot of comments I get from friends and in emails are compliments on how put together and well-adjusted I seem in my blog. And while I appreciate it...I have to say that I've fooled you.
I'm not all that okay. I'm messed up in the head. Pretty bad. It just hasn't been something I really like to talk about because it's important to me to appear strong. Sure, I've talked about my anxiety, my OCD, my antidepressants.
But I think it's important for me to lay it out in black and white. So here it is. I suffer mentally. I really, truly do...and I think most cancer survivors would agree that some of the biggest scars are the ones they've endured in the mind.
Mental illness is still such a taboo topic in society, and when I was a younger girl dealing with OCD it was something I wanted to keep hidden from everybody else. But as soon as my physical ailments became public knowledge--all discretion went out the door. I don't care who knows:
The idea of tasting the toothpaste, feeling the bristles, spitting in the sink, brushing my tongue...it is all absolutely terrifying. It is the absolute last thing I do in the morning, and I procrastinate until the very last second--really until I have to leave the house.
You see, when I first began chemo, I was very, very pukey all the time, and brushing my teeth would always make it worse--you swallow a little bit of toothpaste here and there, it mixes with the nausea you're already feeling, or the toothbrush triggers your gag reflex...it's a terribly dangerous game, the brushing of the teeth is.
It is one of many things that plague me to this day. I just can't brush my teeth with the same whimsical innocence anymore try as I might. I've tried it all too--I bought a fun mechanical toothbrush...to no avail. I even use Dora the Explorer Bubblegum Orajel training toothpaste to improve the taste of tooth-brushing--no luck.
I need help. I need professional help for my fear of tooth care, my chemo brain, and the suppressed memories that I refuse to call post-traumatic stress disorder.
BUT. I miscalculated. I miscalculated in the worst way. You see, in all my cancer power and warrior-ness, when treatment ended, I thought I could close that chapter of my life for good. Write it off as a terrible experience that I can tuck away in the depths of my brain for another day--I didn't need therapy right now. I'd look to get therapy once I'd restarted my life. It's something to decide upon later.
I saw a few counselors here and there...but have been reluctant to see anyone steadily because I know I'm going to have to unlock certain parts of my brain that I've tried like hell to keep quiet.
I love my family, and I can't blame us for the way we tried so hard to resume a normal life immediately after my treatment. It was what we fought for for so long...to be "normal". To go to the grocery store and not be bombarded by people asking about my health, to go wherever we wanted without having to worry about germs, or blood counts, or white cells, to have the ability to make plans that aren't scheduled around chemo dates, radiation times, and neupogen shots. As soon as we got the all clear...we tried to wipe the slate clean.
And I can't speak for my entire family...but I can tell you that at numerous times during my treatment, I thought they were going to have to take me to Psych. Whenever we drove out of the Upstate Hospital parking garage we would drive past Hutchings Psychiatric Hospital, and each time I'd point out the window and say, "you're gonna have to put me there. As soon as we're done at Upstate, you're gonna put me in there." I was mostly joking. But not entirely.
I know it's not entirely surprising that I was severely depressed during my treatment. I probably suffered more mentally than I did physically if we're being totally honest. Looking back, I understand that in many ways the depression caused more damage than the chemo...sure, the chemo did it's job, and totally wrecked my body, my cells, my organs. But it's absolutely amazing, the ways of the human body. The way our bodies are programmed to endure, to replenish, to fight, and to survive.
But the mind? The mind is another story, the mind is trickier...and I severely underestimated its power. Because while the body has that amazing ability to recover, the mind has the ability to recall. And sometimes what the mind can recall--consciously and subconsciously--can be just as dangerous. I have vivid memories of locking myself in the bathroom, sitting on the floor, crying and banging my head against the wall. I have nightmares about the tiny hall washroom where my mother held my hand as my father shaved my head. Squeezing my eyes closed so I couldn't see the hair falling...the tears that seeped out no matter how tight I shut them them. They were absolutely the darkest times of my life. Dark, icky, and not fun to remember.
I've been lucky in a lot of ways, because even though I tried to skip over the "mental recovery" phase, I've been able to keep myself in check. But a lot of comments I get from friends and in emails are compliments on how put together and well-adjusted I seem in my blog. And while I appreciate it...I have to say that I've fooled you.
I'm not all that okay. I'm messed up in the head. Pretty bad. It just hasn't been something I really like to talk about because it's important to me to appear strong. Sure, I've talked about my anxiety, my OCD, my antidepressants.
But I think it's important for me to lay it out in black and white. So here it is. I suffer mentally. I really, truly do...and I think most cancer survivors would agree that some of the biggest scars are the ones they've endured in the mind.
Mental illness is still such a taboo topic in society, and when I was a younger girl dealing with OCD it was something I wanted to keep hidden from everybody else. But as soon as my physical ailments became public knowledge--all discretion went out the door. I don't care who knows:
I'm depressed. I'm anxious. I'm damaged. I'm angry.
And I'm not ashamed. Not one little bit.
Whether you've had cancer or not, life is often a heap 'a shit. I firmly believe that suffering is not the human condition. Living is the human condition. If I've learned anything of substance from my experience, it's that the most important thing to worry about is waking up tomorrow. When I have rough days...I take a step back and ask myself how I'm going to get myself to tomorrow. And tomorrow, I'll figure out how to get to the next day.
I neEd thaaa rehAbBb lyKe mAhh GurL aMy. (R.I.P.A.W)
Not only because I'm afraid of brushing my teeth...there are a slew of other quirks that have come up as a result of chemo. Certain smells set me off...I have to drown myself in perfume sometimes to rid myself of a certain stench. I was in someone's car last week and it smelled so vividly like ifosfamide and I thought I was going to punch a hole through the dashboard and escape down the highway. There's nightmares...there's survivor's guilt...I'm gonna be a messed up crazy bitch for the rest of my life.
Now that I'm almost a 5 year survivor...it's time to take care of myself mentally...time to deal with the demons. This summer, I'm planning to see a woman who works specifically with people who have been touched by cancer. I talked with her once before, and left her office feeling a million times better.
It's never wrong to need help. No one should live in fear of the toothbrush.
Jesse
PS:
On an unrelated note, I would like to take this opportunity to tell you all that unless you have had the responsibility of taking care of a long blonde wig, then you have NO idea how unreasonable it can be. THAT SHIT IS HIGH MAINTENANCE MY FRIENDS, and when you're caught off guard and told you're being arrested...there is absolutely NO TIME to fix it up...it's just not realistic. Everyone needs to take a STEP BACK and re-examine the critiques they are making on Amanda Bynes' recent hairdo. Because it can AND DOES happen ALL THE TIME:
(Amanda Bynes) (Umm. Unknown female.)
The way I see it is Amanda can wear whatever the hell she wants because she's young, she's rich, and she's livin' it up. So. There. She's doing better than I am, if that means anything to her. She probably reads my blog all the time...
Tuesday, May 28, 2013
4.5
It's official friends. I had my tests done last week, and I am now a four and a half year cancer survivor. In December, I'll reach that big ole five year milestone and I guess really be considered "cured". It's an odd way to look at it, because it means that these past four years since treatment, I have not been considered "cured", and therefore it can be assumed, was still ultimately a cancer patient...
But to be honest, although I posted a facebook status and tweeted about my good news, I wasn't all that excited. That sounds so bad. I was--and am--so grateful to be healthy, and of course, I was quite relieved. But I can't honestly say that I was overly thrilled by the news. Which sounds bad however I try to justify it, but still.
I think part of it has to do with an experience I had in the waiting room.
Going to the hospital to have those tests done is always a little bit odd. I still feel like I know that place better than anyone, even though it's been so long. I decided a while ago that I would go to my follow up appointments alone. When you bring your entire family with you, it feels like a big deal. I mean, it is a big deal. But it feels like LESS of a big deal if I go alone. I clearly play a lot of mind games with myself.
I always stand in line to get my hospital badge printed wondering if it's going to be an easy or difficult ordeal. If it's an easy ordeal, the lady at the desk simply asks for my driver's license, prints the badge, and hands them both back to me, sending me on my way to 4A. If it's going to be a difficult day, it means that the lady at the desk has decided to be a pain in the ass and send me to wait in line at registration. I don't know which one is protocol because it is so inconsistent each time. If it's protocol to have to wait in line at registration even though you've visited the hospital more times than you care to remember, that's fine. I just wish they would decide, and accept the fact that I'm going to huff and puff because I've earned the right to act like a bitch at the hospital--a right that doesn't matter at all, because I've always acted like a bitch at the hospital.
The bitchiness consumes me. I can't stop it. Unless you've taken care of me before--my doc for example, the woman who draws my blood every time, my oncologist's nurse--god protect you.
I immediately get this pissed off heir about me, and respond to all questions as though you're really really annoying me. I won't make eye contact with you. God forbid you ask for a urine sample. God forbid you make me list my medication more than once. God forbid you even look at me funny. AND YOU BETTER MAKE YOUR PEACE if you ask me how to spell Fanconi's syndrome. This ain't no spelling bee.
The X-ray technicians always try to play cute. I guess they're used to most people being like "yeah, my doc sent me for X-rays, but I dunno why, and I dunno what I'm having X-rayed." Anywho, the technician will be like "OK, Jesse, can you say you're date of birth for me? And do you know what we're going to be doing today?"
The answer: "3/25/91. You'll be taking four pictures--two of my chest to look at my lungs, and two of my pelvis. First you'll look at the floor and ashamedly ask if I'm pregnant. I'll say no. You'll tell me to look straight ahead at the sticker on the wall, hold the bar above my head, take a breathe, hold it, let it out. Repeat with variations. You'll ask me to wait for a minute while you look at the slides to make sure you got good pictures. If you haven't, we'll have to do it all again, and if you have, I can get the hell out of here. BAM. "
I'm a master of blood tests. Prick my finger, poke my veins, it doesn't phase me anymore. As long as you give me a little "one, two, three, poke", I'm good. Bleed me dry. Have a ball.
A nurse will tell me to hop on the scale. She's measuring in kilograms. She'll awkwardly ask if I'd like to see what it is in pounds, to which the answer is "that's really quite alright, but thanks." She'll ask me if I'm in pain, and by some lucky twist of fate, the answer is no. I'm not in any pain. I'm almost back to maximum flexibility, I'm able to exercise with no restrictions and not feel any sort of pain whatsoever.
It's all gotten so routine for me that I numb myself to the process. I bring in my book and tune everything out until I'm spoken to, until I'm called, until it's my turn. When it's done, I get my parking validated, take the stairs to the ground level, get in the car and go to McDonalds, because there's no better way to celebrate a positive doctors appointment than with terrible, delicious food that will eventually give me a heart attack, thus making all the chemo and radiation irrelevant.
But last week, I broke my routine numbness. I was sitting in the waiting room, reading. I'd already run into the doctor on the elevator and was feeling pretty at ease. Across from me is a young girl, probably twelve or thirteen, and beside me is her mother. The girl is eating some cheese and crackers, and is watching "Say Yes to the Dress" on the waiting room TV.
Occasionally, the mother comments on things going on around us. She tells her daughter that she should probably have eaten a better meal before she came, because cheese and crackers isn't enough. The girl says that if she was in school today, she'd already be at lunch. Her mother says she remembers how they watched "Say Yes to the Dress" over and over again when they were in the hospital, and says how funny it is that it's always on when they're here.
A pump goes off in the other room. If you've ever been in the hospital for any extended period of time, then you might be familiar with the beeping sound that fills the room whenever the pumps go off. For me, it conjures up memories of tubes becoming twisted, the pump needing to be charged, a chemo bag empty, fluids needing to be replaced. The beeping apparently reminds the girl in the waiting room of when you obstruct the needle by moving a certain way, causing the flow of medicine, blood, etc to be obstructed. She says, "someone must have twisted the wrong way", and her mother agrees and they both remember all the times it happened to them.
Their remembering aloud distracts me from my book, and I start remembering, too. I ask them if they're also former patients.
They are and they aren't.
The mother asks me if I have a blood disorder, too, and I tell her no, I had bone cancer. She asks me the typical curiosity questions, and by the end of our conversation, they are being called in to their appointment. The mother stands, and for the first time I see the two giant bags of clothing and supplies she's carried with her. "Just in case," she says. "We're prepared this time."
They're prepared just in case they have to stay over night. It makes me want to cry.
I remember bringing in huge bags of "stuff" just in case my blood tests came back poorly and I had to be transferred to the inpatient floor. Just in case my quick doctor's appointment turned into a long stay in a hospital bed.
I realize I'm lucky in many ways. I'm lucky that I don't feel pain anymore. I'm lucky that I'm healthy. And in that moment when she asked me if I had a blood disorder, I actually felt lucky to be able to say "no, just cancer."
Because with cancer, all that medical poking and prodding--it's temporary. You either endure and be cured, or you endure and then die.
But there are people like this young girl...for whom hospital stays and needles and blood transfusions and platelet transfusions---all these things are the norm. They're all they've ever known. The struggle is ongoing.
I dealt with this shit for ten months and thought it was pure hell. She's been dealing with it her entire life, and will continue to deal.
It really changed the way I saw everything--and I'm not sure how or in what way. But the news that I'm still in remission...it's wonderful...but I can't get that girl in the waiting room out of my head. And all I can think about is how immensely and intensely human beings suffer. This world is an incredibly unfair place, and many don't even realize it. It's so easy for me to cheer and celebrate my remission and then resume my "normal person" life and forget. Which, to be honest, is what I've done. I've turned my back on that part of my life because it's too icky and painful to deal with...and that's not right.
I don't quite know what I'm getting at here. Just that I really feel a lot of anguish that 95% of the world has no idea how lucky they are. No idea whatsoever.
And I can't end this entry on a positive note for some reason. Because there's no positive ending for it. Everybody stop and take the time to really understand just how good you have it right now, and ask yourself what you really, really want. And if the answer is not to wake up in the morning and see the people who love you...then maybe it's time to re-evaluate your priorities.
But to be honest, although I posted a facebook status and tweeted about my good news, I wasn't all that excited. That sounds so bad. I was--and am--so grateful to be healthy, and of course, I was quite relieved. But I can't honestly say that I was overly thrilled by the news. Which sounds bad however I try to justify it, but still.
I think part of it has to do with an experience I had in the waiting room.
Going to the hospital to have those tests done is always a little bit odd. I still feel like I know that place better than anyone, even though it's been so long. I decided a while ago that I would go to my follow up appointments alone. When you bring your entire family with you, it feels like a big deal. I mean, it is a big deal. But it feels like LESS of a big deal if I go alone. I clearly play a lot of mind games with myself.
I always stand in line to get my hospital badge printed wondering if it's going to be an easy or difficult ordeal. If it's an easy ordeal, the lady at the desk simply asks for my driver's license, prints the badge, and hands them both back to me, sending me on my way to 4A. If it's going to be a difficult day, it means that the lady at the desk has decided to be a pain in the ass and send me to wait in line at registration. I don't know which one is protocol because it is so inconsistent each time. If it's protocol to have to wait in line at registration even though you've visited the hospital more times than you care to remember, that's fine. I just wish they would decide, and accept the fact that I'm going to huff and puff because I've earned the right to act like a bitch at the hospital--a right that doesn't matter at all, because I've always acted like a bitch at the hospital.
The bitchiness consumes me. I can't stop it. Unless you've taken care of me before--my doc for example, the woman who draws my blood every time, my oncologist's nurse--god protect you.
I immediately get this pissed off heir about me, and respond to all questions as though you're really really annoying me. I won't make eye contact with you. God forbid you ask for a urine sample. God forbid you make me list my medication more than once. God forbid you even look at me funny. AND YOU BETTER MAKE YOUR PEACE if you ask me how to spell Fanconi's syndrome. This ain't no spelling bee.
The X-ray technicians always try to play cute. I guess they're used to most people being like "yeah, my doc sent me for X-rays, but I dunno why, and I dunno what I'm having X-rayed." Anywho, the technician will be like "OK, Jesse, can you say you're date of birth for me? And do you know what we're going to be doing today?"
The answer: "3/25/91. You'll be taking four pictures--two of my chest to look at my lungs, and two of my pelvis. First you'll look at the floor and ashamedly ask if I'm pregnant. I'll say no. You'll tell me to look straight ahead at the sticker on the wall, hold the bar above my head, take a breathe, hold it, let it out. Repeat with variations. You'll ask me to wait for a minute while you look at the slides to make sure you got good pictures. If you haven't, we'll have to do it all again, and if you have, I can get the hell out of here. BAM. "
I'm a master of blood tests. Prick my finger, poke my veins, it doesn't phase me anymore. As long as you give me a little "one, two, three, poke", I'm good. Bleed me dry. Have a ball.
A nurse will tell me to hop on the scale. She's measuring in kilograms. She'll awkwardly ask if I'd like to see what it is in pounds, to which the answer is "that's really quite alright, but thanks." She'll ask me if I'm in pain, and by some lucky twist of fate, the answer is no. I'm not in any pain. I'm almost back to maximum flexibility, I'm able to exercise with no restrictions and not feel any sort of pain whatsoever.
It's all gotten so routine for me that I numb myself to the process. I bring in my book and tune everything out until I'm spoken to, until I'm called, until it's my turn. When it's done, I get my parking validated, take the stairs to the ground level, get in the car and go to McDonalds, because there's no better way to celebrate a positive doctors appointment than with terrible, delicious food that will eventually give me a heart attack, thus making all the chemo and radiation irrelevant.
But last week, I broke my routine numbness. I was sitting in the waiting room, reading. I'd already run into the doctor on the elevator and was feeling pretty at ease. Across from me is a young girl, probably twelve or thirteen, and beside me is her mother. The girl is eating some cheese and crackers, and is watching "Say Yes to the Dress" on the waiting room TV.
Occasionally, the mother comments on things going on around us. She tells her daughter that she should probably have eaten a better meal before she came, because cheese and crackers isn't enough. The girl says that if she was in school today, she'd already be at lunch. Her mother says she remembers how they watched "Say Yes to the Dress" over and over again when they were in the hospital, and says how funny it is that it's always on when they're here.
A pump goes off in the other room. If you've ever been in the hospital for any extended period of time, then you might be familiar with the beeping sound that fills the room whenever the pumps go off. For me, it conjures up memories of tubes becoming twisted, the pump needing to be charged, a chemo bag empty, fluids needing to be replaced. The beeping apparently reminds the girl in the waiting room of when you obstruct the needle by moving a certain way, causing the flow of medicine, blood, etc to be obstructed. She says, "someone must have twisted the wrong way", and her mother agrees and they both remember all the times it happened to them.
Their remembering aloud distracts me from my book, and I start remembering, too. I ask them if they're also former patients.
They are and they aren't.
The mother asks me if I have a blood disorder, too, and I tell her no, I had bone cancer. She asks me the typical curiosity questions, and by the end of our conversation, they are being called in to their appointment. The mother stands, and for the first time I see the two giant bags of clothing and supplies she's carried with her. "Just in case," she says. "We're prepared this time."
They're prepared just in case they have to stay over night. It makes me want to cry.
I remember bringing in huge bags of "stuff" just in case my blood tests came back poorly and I had to be transferred to the inpatient floor. Just in case my quick doctor's appointment turned into a long stay in a hospital bed.
I realize I'm lucky in many ways. I'm lucky that I don't feel pain anymore. I'm lucky that I'm healthy. And in that moment when she asked me if I had a blood disorder, I actually felt lucky to be able to say "no, just cancer."
Because with cancer, all that medical poking and prodding--it's temporary. You either endure and be cured, or you endure and then die.
But there are people like this young girl...for whom hospital stays and needles and blood transfusions and platelet transfusions---all these things are the norm. They're all they've ever known. The struggle is ongoing.
I dealt with this shit for ten months and thought it was pure hell. She's been dealing with it her entire life, and will continue to deal.
It really changed the way I saw everything--and I'm not sure how or in what way. But the news that I'm still in remission...it's wonderful...but I can't get that girl in the waiting room out of my head. And all I can think about is how immensely and intensely human beings suffer. This world is an incredibly unfair place, and many don't even realize it. It's so easy for me to cheer and celebrate my remission and then resume my "normal person" life and forget. Which, to be honest, is what I've done. I've turned my back on that part of my life because it's too icky and painful to deal with...and that's not right.
I don't quite know what I'm getting at here. Just that I really feel a lot of anguish that 95% of the world has no idea how lucky they are. No idea whatsoever.
And I can't end this entry on a positive note for some reason. Because there's no positive ending for it. Everybody stop and take the time to really understand just how good you have it right now, and ask yourself what you really, really want. And if the answer is not to wake up in the morning and see the people who love you...then maybe it's time to re-evaluate your priorities.
Sunday, May 19, 2013
"Penny"
Hello good peeps,
I said last week I'd be including one of my short stories in this weeks' post. It's a true story from my cancer experience and is about one of my many heroes from my stays in the hospital (although I changed the name). It's an early draft, and far from perfect, so don't judge, bitches.
Hope you enjoy it, and don't get bored and stop reading because its kind of long. BUT READ IT ALL!
Please.
PENNY
by Jesse Pardee
Penny is coming.
She waddles into my hospital room on Christmas with her
mom, and is without a doubt the most precious bald kid I’ve ever seen. She’s tiny and bouncy and apparently she runs this place, or so I’ve heard.
She’s three. She
has leukemia.
It is only my third day in the hospital and Mom tells
me Penny has been here for over a month. We
are the only patients on the pediatric oncology ward today, which I guess is a
good thing; apparently this place is usually crammed full of little kids here
for their chemo and their blood transfusions, their throat sores and their skin
reactions, their radiation and their fevers, their low platelets and their depleted
white cells.
But it’s just Penny
and me at opposite ends of the hall on this Christmas Day.
Penny clings to her mother’s hand as they round the
corner into my hospital room. Her mom
greets mine, and asks if it’s okay to come in. Mom looks at me and I manage a small nod. As they approach, Penny and I lock eyes.
She has the glare
of a deadly assassin.
She’s sizing me up.
I’ve heard about Penny from one of the nurses, the one who keeps
trying to make me walk: “Penny wants to meet you. She likes to know everyone.”
I know what this
is really about. Penny wants to check out
the fresh meat. I need to be on my A game.
Penny has bruises up and down her arms and legs. From what I’ve learned about cancer so far,
the bruises must be from running around the playroom with low platelets—but I
have my own theory: she’s the Keeper of Pediatric Oncology. She’s been cracking skulls.
Yes, yes. She has
most definitely been cracking skulls.
Her mother is talking to me but I’m not actually
listening. I’m a little bit high on
morphine, a little bit queasy, and slightly terrified of this three year-old who refuses to look away. Just keeps glaring at me,
standing there with her little bald head, in her red and green outfit and
Christmas socks.
Penny has blue eyes. She has no eyelashes. She has
no eyebrows. I think I spy a few sparse
blonde hairs on her head, but I dare not look away from her face.
And so we stare,
challenging each other, daring the other to move. Little does she know I can hardly move anyway
because of the catheter.
I’ve decided I really like my catheter. I’ve befriended the catheter. It allows me to lie in bed and feel sorry for
myself all day long, living in my own mental shit-storm. I can stare out the window at the skyline, at
the wreath hanging on the other side of the building, at all the cars carrying
people who are going anywhere but here.
I can wallow all day...and I never have to get up to pee.
It’s liberating.
I never realized how enslaved I was by my own bladder—by that great oppressor, the toilet.
I’ve decided I
think everyone needs to experience a good catheter once in their life, if only so
they can know the glorious phenomenon of drinking six glasses of OJ without
even the slightest pressure on the bladder.
Disgusting and fantastic.
My mind is wandering back into pity mode. There are so many things to cry
about—anything really, from the pain to the suddenly very real concept of my own
mortality.
Just as I think I might roll over and stare pathetically
out the window for a little while, Penny makes a sudden move of the arm and I
snap out of it. She dangles a string of
beads in front of my face. She made it
for me.
It’s a bracelet, but not really because it’s actually just a string of rainbow colored beads on a frayed black string knotted at both
ends.
It’s my Christmas present.
Penny hasn’t stopped staring at me. I cock my head to the side and reach for the
beads. A non-verbal agreement has been
made.
Touche, Penny. I
accept.
My extended
family and some friends visit me in the hospital and bring Christmas
presents. They smile but the smiles seem
horribly out of place. There’s no
masking this. There’s no rose-colored glasses. This shit is real.
Before they arrived, I dolled myself up for the first time since I'd been here. I put on eye-shadow, mascara, lipstick…studied my face and pretended that just for a moment I was the same girl I’d been a month ago. Then I brushed my hair for both the first time in days and the last time for a while.
I
tell them all about my catheter and how much I like it, but I’m sure they
dismissed it as morphine-induced babbling.
Later
on, I’m relieved that they’re gone--especially my friends. I don’t want anyone to know that I’m weak,
that I’m capable of crying, of being scared; if they stayed too long, they were
bound to find out.
Penny
must’ve noticed it right away. I know
she did. She was tough as nails, this
three year-old and she could smell my weakness, I was sure.
I
hate my weakness, but I don’t care enough to change it. I still refuse to walk. There’s
no point. “Will you just walk to the end
of the hall? Will you walk to the
dayroom ? Will you literally take two steps outside the room?”
No. I won’t.
Stop. Asking.
Mom
comes in with my apple juice. She’s
tired, I can tell. Mentally and
physically. Every once in a while she
looks around the room at the pukey walls and the buzzing machines and the two
bags of poison hanging from the medicine pole.
It hasn’t sunk in yet for her.
Dad
is watching TV in the chair next to me, and has been trying to keep me and my
sister laughing.
My
sister is mad about Christmas. She keeps
asking if we’ll have our own Christmas when we get home, with our Christmas
tree, and our stockings, and our own surroundings. Mom tells her yes, but I know that we won't feel like celebrating when we get home.
I haven’t even thought about home.
It requires thinking about life without my catheter and I’m not ready to accept it.
Mom
puts a straw in the apple juice and holds it up to my lips. My
lips are dry and cracked again and the straw feels funny against them. I take one sip, then two, but refuse to have
too much at once. I’ve heard about
chemo, I’ve heard about the puking, and I’ve vowed to keep my stomach as empty
as possible--against everyone's wishes.
But the docs insisted I have apple juice and Miralax because apparently
bowel movements are a big deal here. They’re
the cancer equivalent of a touchdown.
Unfortunately the catheter isn’t equipped for that. A serious flaw in my new friend.
Mom
sits down on the empty bed next to mine—the first time she’s attempted to relax
all day. She takes off her sneakers and
puts her feet up. She’s trying to look
comfortable but I know she’s far from it.
She smiles at me, but it takes effort.
“Isn’t
that Penny adorable?” she asks.
“She
doesn’t like me,” I say.
“She’s
three years old. She doesn’t know what
she likes.” Dad.
“She
stared at me the whole time like I was a disgrace to cancer patients
everywhere.” I knew, of course, that at
three she was incapable of making a judgment of this sort, but I couldn’t shake
the feeling that I’d let this little girl down.
That she’d expected to meet someone like her—someone courageous and
playful, and above her disease—only older and braver.
But
I was older and pathetic. Pitiful,
really, lying their basking in my catheterization and self-loathing, playing the poor little victim.
“I know why she was staring at you,” Mom says.
“Her mother told me out in the day room.”
“Told
you what?”
“When
they left our room, Penny asked her mother why she didn’t have pretty hair like
yours. She was mesmerized by it.”
My
hair? Penny was staring at me because
she wanted my hair? So she wasn’t
condemning me for being a self-pitying martyr with no balls?
There
was a strange silence in the room. I picked
up the string of beads from the bedside tray where I'd left them.
I began to cry.
“It’ll
grow back, honey. It’ll grow back when
you beat this.” But I wasn’t crying
about the hair. I wasn’t crying about
the cancer.
I
don’t know what I was crying about.
The
pain is gone. They’ve taken away my
catheter. They say I don’t need it. My condition is improving quite rapidly, and
the tumor isn’t pressing on my nerves anymore.
It’s been three weeks
since I started chemo, and I’m back for more; but this time, I don’t have the
luxury of my own room. This time I have
a roommate.
Penny
is in the cubby across from me, where she’s been since Christmas. Where she’s been for over six weeks.
Penny likes Dora the Explorer. Penny likes Dora the Explorer a lot.
It plays on her TV from early in the morning until late at night, and
since I still refuse to leave the room, I’ve learned a lot of Spanish.
“Duerme”
means sleep, which is all I do.
And
while I “duerme”, my “familia” plays with Penny in the dayroom. Penny balances toys on her head. She tells you where to put your pieces in
Candyland. She cheats at cards. All this I’ve heard, but don’t know firsthand
because I never stop sleeping and I’m still afraid of Penny.
But
this particular afternoon, I’ve been puking like a fiend, and am unable to
sleep. Mom has gone to the nurse’s desk
to see if my anti-nausea meds have arrived, and Dad is home with my
sister. I’m alone, for the moment. “Dora” is not playing across the room, so I
assume that I’m truly alone.
I’m
wrong.
Out
of nowhere, Penny’s bald head peeks around the curtain. She glances briefly over her shoulder to make
sure her mother isn’t there to stop her, then tiptoes to my bed. There’s a band-aid on her forehead and one on
her elbow.
“What are you doing?” she demands
I
smile. “Throwing up.”
“For
what?”
“From
my treatment.”
“For
what?”
“For
my cancer.”
Silence. She leans on the bed, and the movement of the
mattress makes my stomach churn.
“Where’s
your hair?”
My
heart drops. It’s only been a week since
we shaved it off. I forget that it’s gone
sometimes, until I run my fingertips along the rough skin on my scalp. I refuse to look in the mirror.
“I
lost it.”
“For
what?”
“From
my treatment.”
“For
what?”
“For
my cancer.”
Silence. I’m sensing a pattern. She’s reminded me of my bald head but I’m not
mad. I smile at her. Penny smirks.
Just
then her mother returns, and tells her to stop bothering me. I say it’s no problem, but Penny’s mother
knows I’ve been throwing up all morning.
She
and Penny return to the cubby and I hear a “Dora” episode begin on the TV.
A nurse comes in
and asks Penny if she would please have some water, some Kool-Aid,
something. Anything.
“She
hasn’t had anything to drink today. Her
counts are coming up, and she’s ready to go home soon—but if she doesn’t have
something to drink, we’ll have to put her on fluids, and she’ll be here another
couple of days.”
Penny
still refuses. Her mother implores her
to have just a sip of her Kool-Aid but she won’t budge.
I
consider going back to sleep, since it’s been a good fifteen minutes since my
last hurl. My eyes are heavy and I know
that as soon as I close my eyes I’ll be out like a light.
But
all at once, I’m pressing the button for the nurse. When she arrives she’s surprised to see me
awake, and I ask her if she can bring my Snapple from the fridge in the day
room—my Snapple and a paper cup with ice.
She smiles, glad that I’ve decided to rejoin the land of the living,
even if it’s only for something to drink.
“Penny!”
I call out. I’m surprised by the sound
of my own voice, which hasn’t been raised above a pathetic croak in weeks. I still feel like shit, and want nothing more
than to go back to sleep, but something stops me. Something is different.
Penny
scurries over to my bedside, and I sit up.
I realize she’s never seen me sitting up before, only lying down,
wallowing in my self-pity.
“What?”
she demands.
“You
don’t want anything to drink?” Penny
shakes her head ‘no,’ just as the nurse returns with my Snapple. She sets it on my tray and I begin to pour it
into the paper cup.
Penny
watches me with sheer curiosity. This is
the most movement, the most speaking, the most interaction we’ve had, and she’s
seems taken aback.
“That’s
too bad,” I say. “Because I was going to
bet you that I could drink this Snapple faster than you can drink your
Kool-Aid.”
Penny’s
eyes grow wide and she shakes her head furiously. “No you can’t!”
“Hmmm. I’ll bet I can.”
Penny
is across the room and back in less than ten seconds, cup in hand, Kool-Aid
spilling out the top.
We
stare each other down one last time.
This time the playing field is different. We’re two baldies in this crazy cancer game
together. We’re equals.
We’re
warriors.
On
the count of three, we tip back our cups.
I sip mine slowly and Penny drinks hers fast, eyes still locked on mine. She slams her cup down victoriously, and
crosses her arms, proud of her win. She
grins, and her teeth are stained red with Kool-Aid.
“TOLD
you!” she gloats. “Now what?!”
“Well,”
I glance over my shoulder at my pillow, tempted to slip back into my
denial-sleep.
I look back at Penny and sigh. “I hear you cheat at cards.”
HOPE YOU ENJOYED!
JESSE
PS>>OMG JODI ARIAS, RIGH!??????????????????
Thursday, May 16, 2013
Twenty-Five Things Rebooted
Recently, when I was on facebook at 3 am wondering how I had become an internet-facebook-stalking statistic, I cam across this little ditty I had so eloquently composed a month and a half after I began chemotherapy. It is a note titled, "25 Things--Because I Know You Guys Are All Nosy About What's Going on in My New Fun-Filled Life". It was back when everyone was posting notes called "25 things" under the assumption that people wanted to get to read twenty five things about them because apparently we're all so interesting. I jumped on this bandwagon, clearly, as I still assume I'm super interesting. I might be a sociopath, I dunno, I'm looking into it.
If you're interested in reading the note, by all means go ahead. It drips with self-pity and mean-spirited quips.
So I decided today that I would re-do the twenty five things, with a focus on non-cancer things. Because as much as cancer is a part of me, it is not who I am. By reading this blog, you get 95% cancer-Jesse and only 5% real Jesse.
Here we go. It's not too late to stop reading.
1. I absolutely love serial-killer shows. Y'know like those documentary shows about murder and DNA and stuff like that? When I was in middle school my second choice dream job (second to being Kristin Chenoweth) was to be a DNA specialist and work on crimes. I like to fall asleep to these shows because it makes me feel safe, because I like to tell myself that I'm safe in my bed and not getting murdered by Ed Gein. I dunno. Like I said, I might be a sociopath. But I won't kill anyone, I promise.
2. This might sound obvious, since I've been writing this blog for almost a year, but I love to write. I've always had a knack for it, but it got overshadowed by my musical theater goals. Recently, I took up an English minor, and am really enjoying writing short stories, and short plays. I'm 85% finished with my first full-length play based on my experiences. (KEYWORD=BASED, because there are aspects of the story that are NOT AT ALL based on my own experiences). I'm planning on giving it a go in NY after I graduate in December of 2013, but am also considering grad school for play writing (but not for a long, long time since I'm poor).
3. I love dogs. I know everyone says they love dogs, but I also enjoy creating personalities and voices for every dog I meet and they are usually spot on, you can ask my boyfriend.
4. On that topic, I've been dating my current boyfriend Matt since January 23rd, 2012, and I love him verrrrry much.
5. I have one sister named Jackie who I've written about before. She's 17, stunning, and multi-talented and she just might have to give me a kidney which she's already agreed to SO YOU CAN'T TAKE IT BACK JACKIE.
6. I'm waiting for the comeback of Gigapets.
7. People always ask me what my favorite musical is, and being in theater school has made me feel like it's a crime to love this musical. But I'm not ashamed. My favorite musical is The Phantom of the Opera and I'll defend it to the death. It was the first big musical I saw that I can remember. I was 10, and knew then and there when those candelabras rose from the stage that I wanted to be a performer. I was also so devastated by the ending that I took my mom's cassette recordings into my bedroom and played the ending over and over again while I cried for hours and hours. I still do that sometimes. I'm very sensitive.
8. My favorite book is a Tale of Two Cities, and I know it sounds like I'm being pretentious, but if you haven't read it, it's probably a free ebook, so you should get it. Sit down in a quiet area because you will really need to focus--but it will change your life. Give it a chance.
9. I LOVE reality TV. The more ridiculous the better. My role model is Asia from Dance Moms.
10. I work at The Limited and I get an employee discount which is extremely difficult in its temptation to just buy everything in sight.
11. I hate Harry Potter. That's all I'm gonna say about that.
12. I liked Twilight before the film industry destroyed it. It is my personal opinion that Twilight should have just been a single book. No series. No movies. Just the first book. Because I really enjoyed the first book and I'm not afraid to say it.
13. Matt has been trying to get me into Doctor Who, but I'm really on the fence so far.
14. Tabatha's Salon Takeover and Tabatha Takes Over are the greatest shows on television.
15. I'm also writing an autobiographical collection of short stories called "Shit That Happened to Me Once". I'm going to be posting one of the stories on here next week!
16. I don't watch Glee or SMASH (even though Andy Mientus is on SMASH and I love him and I hope he's having lots of fun). Don't assume that all theater peeps watch them. We get enough theatrics in our daily lives. Nothing against them. I'm sure they're great.
17. I'm a Hunger Games fan only via the movie. Never read the books, no intention of reading the books. But I'm excited for the next movies.
18. My favorite favorite favorite short story is "The Rememberer" by Aimee Bender. Google it, you can probably find it online. It's amazing.
19. I miss Amy Winehouse every day. I love her. I also listen to Marina and the Diamonds and One Republic.
20. My favorite movie of all time is Heathers. It's on netflix, go watch it.
21. After I saw Super Size Me I became disgusted with the fast food industry and decided to be vegan.
22. Just kidding. I love McDonalds and I love chicken nuggets and if that's what gave me cancer, so be it.
23. I have a terribly dark sense of humor if you couldn't tell.
24. After wearing wigs for a year, I get bored with my hair every 2 months and change it.
25. I like to think I'm a good time.
So there ya go. 25 things about me. If you read them all, KUDOS.
I'm not all that interesting...
Which is why I'm asking for some help. I could write endlessly about everything I think about cancer and about the world and about my post-cancer world. But I'm curious to know what people think about my blog and what they'd like to have me talk about. I was trying to figure out a way to get an anonymous/private question box thing going but I gave up because it was too hard. Which in and of itself is quite ironic.
SO.
I'm asking you.
Please don't be shy and email me questions, suggestions, etc. I will keep them private!
jessepardee@gmail.com
---*If anyone wants to sell me a Gigapet, I'm interested.*--
I'll be writing on Mondays again now that it's summer and stuff. So yeah. Keep reading, folks, I haven't given up on this thing yet.
If you're interested in reading the note, by all means go ahead. It drips with self-pity and mean-spirited quips.
So I decided today that I would re-do the twenty five things, with a focus on non-cancer things. Because as much as cancer is a part of me, it is not who I am. By reading this blog, you get 95% cancer-Jesse and only 5% real Jesse.
Here we go. It's not too late to stop reading.
1. I absolutely love serial-killer shows. Y'know like those documentary shows about murder and DNA and stuff like that? When I was in middle school my second choice dream job (second to being Kristin Chenoweth) was to be a DNA specialist and work on crimes. I like to fall asleep to these shows because it makes me feel safe, because I like to tell myself that I'm safe in my bed and not getting murdered by Ed Gein. I dunno. Like I said, I might be a sociopath. But I won't kill anyone, I promise.
2. This might sound obvious, since I've been writing this blog for almost a year, but I love to write. I've always had a knack for it, but it got overshadowed by my musical theater goals. Recently, I took up an English minor, and am really enjoying writing short stories, and short plays. I'm 85% finished with my first full-length play based on my experiences. (KEYWORD=BASED, because there are aspects of the story that are NOT AT ALL based on my own experiences). I'm planning on giving it a go in NY after I graduate in December of 2013, but am also considering grad school for play writing (but not for a long, long time since I'm poor).
3. I love dogs. I know everyone says they love dogs, but I also enjoy creating personalities and voices for every dog I meet and they are usually spot on, you can ask my boyfriend.
4. On that topic, I've been dating my current boyfriend Matt since January 23rd, 2012, and I love him verrrrry much.
5. I have one sister named Jackie who I've written about before. She's 17, stunning, and multi-talented and she just might have to give me a kidney which she's already agreed to SO YOU CAN'T TAKE IT BACK JACKIE.
6. I'm waiting for the comeback of Gigapets.
7. People always ask me what my favorite musical is, and being in theater school has made me feel like it's a crime to love this musical. But I'm not ashamed. My favorite musical is The Phantom of the Opera and I'll defend it to the death. It was the first big musical I saw that I can remember. I was 10, and knew then and there when those candelabras rose from the stage that I wanted to be a performer. I was also so devastated by the ending that I took my mom's cassette recordings into my bedroom and played the ending over and over again while I cried for hours and hours. I still do that sometimes. I'm very sensitive.
8. My favorite book is a Tale of Two Cities, and I know it sounds like I'm being pretentious, but if you haven't read it, it's probably a free ebook, so you should get it. Sit down in a quiet area because you will really need to focus--but it will change your life. Give it a chance.
9. I LOVE reality TV. The more ridiculous the better. My role model is Asia from Dance Moms.
10. I work at The Limited and I get an employee discount which is extremely difficult in its temptation to just buy everything in sight.
11. I hate Harry Potter. That's all I'm gonna say about that.
12. I liked Twilight before the film industry destroyed it. It is my personal opinion that Twilight should have just been a single book. No series. No movies. Just the first book. Because I really enjoyed the first book and I'm not afraid to say it.
13. Matt has been trying to get me into Doctor Who, but I'm really on the fence so far.
14. Tabatha's Salon Takeover and Tabatha Takes Over are the greatest shows on television.
15. I'm also writing an autobiographical collection of short stories called "Shit That Happened to Me Once". I'm going to be posting one of the stories on here next week!
16. I don't watch Glee or SMASH (even though Andy Mientus is on SMASH and I love him and I hope he's having lots of fun). Don't assume that all theater peeps watch them. We get enough theatrics in our daily lives. Nothing against them. I'm sure they're great.
17. I'm a Hunger Games fan only via the movie. Never read the books, no intention of reading the books. But I'm excited for the next movies.
18. My favorite favorite favorite short story is "The Rememberer" by Aimee Bender. Google it, you can probably find it online. It's amazing.
19. I miss Amy Winehouse every day. I love her. I also listen to Marina and the Diamonds and One Republic.
20. My favorite movie of all time is Heathers. It's on netflix, go watch it.
21. After I saw Super Size Me I became disgusted with the fast food industry and decided to be vegan.
22. Just kidding. I love McDonalds and I love chicken nuggets and if that's what gave me cancer, so be it.
23. I have a terribly dark sense of humor if you couldn't tell.
24. After wearing wigs for a year, I get bored with my hair every 2 months and change it.
25. I like to think I'm a good time.
So there ya go. 25 things about me. If you read them all, KUDOS.
I'm not all that interesting...
Which is why I'm asking for some help. I could write endlessly about everything I think about cancer and about the world and about my post-cancer world. But I'm curious to know what people think about my blog and what they'd like to have me talk about. I was trying to figure out a way to get an anonymous/private question box thing going but I gave up because it was too hard. Which in and of itself is quite ironic.
SO.
I'm asking you.
Please don't be shy and email me questions, suggestions, etc. I will keep them private!
jessepardee@gmail.com
---*If anyone wants to sell me a Gigapet, I'm interested.*--
I'll be writing on Mondays again now that it's summer and stuff. So yeah. Keep reading, folks, I haven't given up on this thing yet.
Tuesday, May 7, 2013
Fighting for a Cure vs. Fighting Cancer
Hi friends. I'm sorry. It's been awhile. Finals week(s). You understand. For some reason I'm really feeling these short, broken up sentences. Except for that last one. I used a comma. It wasn't short. I'm sorry. I'm feeling tired. I'm not quite up for this right now. But I feel like a bad blogger for disappearing on you, and so here I am. Hopefully, as the post progresses, the sentences will become longer and more well thought out. I guarantee you nothing. I'm not your puppet. I've always wanted to say that.
Right now I'm watching Bob's Burgers. It's really funny. I knew what I was going to write about but then I started getting distracted by this show because it makes me laugh while simultaneously making me extremely uncomfortable. I dunno, I think that's quite an accomplishment.
I guess it kind of leads into my topic for today (not really, but bear with me) which is something that makes me super uncomfortable on two levels. The event makes me uncomfortable, for one thing. But I am also very uncomfortable with expressing my dislike for this event because I feel like people want to crucify me and jump down my throat about it. But here we go. I'm just going to say it:
Maybe you disagree with me. You probably do. But that's how I feel. I fought cancer, and it was an experience that anyone who hasn't had cancer could never, ever understand.
Right now I'm watching Bob's Burgers. It's really funny. I knew what I was going to write about but then I started getting distracted by this show because it makes me laugh while simultaneously making me extremely uncomfortable. I dunno, I think that's quite an accomplishment.
I guess it kind of leads into my topic for today (not really, but bear with me) which is something that makes me super uncomfortable on two levels. The event makes me uncomfortable, for one thing. But I am also very uncomfortable with expressing my dislike for this event because I feel like people want to crucify me and jump down my throat about it. But here we go. I'm just going to say it:
I do not like the Relay for Life.
I don't. I super super super DON'T.
NOW--hear me out before you throw your laptop or monitor or phone or tablet or any device used for viewing the internet across the room, because I know Relay for Life raises lots of money for cancer research and that many people enjoy it and feel that its a wonderful organization. And don't get me wrong, any organization that raises money for research and cancer awareness is great, and I appreciate it for that.
But let me tell you a little story. A few months after I finished my treatment, I went to a meeting for Relay for Life because my family and I wanted to give back and do something for the cancer community. We sat down, and a woman told everyone who was a cancer survivor to stand up. Several people around me who knew who I was (since apparently everyone in the CNY area heard about Jesse Pardee, Cancer Extraordinaire), stared at me expectantly, smiling, WILLING me to stand up. But I didn't want to.
It's like this: I have this jaded perception of the world around me, and I felt like I was joining some sort of freak show by standing up. Because you have to admit--no matter how you view yourself and the world around you--that when a whole bunch of people who had a deadly disease stand up in a room, a part of you goes "Ooooh, ahhh, sucks to be them." Maybe you talk that part of you away. Maybe it manifests as "wow, how horrible for them", or "oh dear, poor thing". Regardless. You do.
At this point in my recovery, I was tired of being identified by my cancer. SO the fact that the Relay meeting was asking that I stand up, thus exposing one of the most personal, raw, and f**ked up parts of my life to a room full of strangers to gawk at really irked me. AGAIN--I know that many of you are thinking "They wanted to celebrate you!" I understand where you're coming from. But you're not me, and this is my account. So shush. This is Jesse's account of things--Jesse, who had her own personal battle with cancer and is the only one who knows how she feels and thinks. Jesse, who will cease to speak in third person NOW.
It's my unique perspective. So don't freak out on me.
Then we watched a film about past accomplishments of the Relay for Life. And they were impressive. The first few times around. But the more and more things progressed, the more it felt like everyone was just giving each other a big pat on the back for...for what? And then they told us: Relay for Life, and all of its participants--were fighting cancer. No, not "fighting for a cure". Not "fighting for change", "fighting for answers", "fighting for progress"---THESE were not the terms used.
The term used was fighting cancer.
Wait. What? Who was fighting cancer?
Peeps, this is where I gotta become a crazy cancer bitch for a second, and stand up for my cancer brethren. Walking around a track for twelve hours is not "fighting cancer."
THE FOLLOWING PEOPLE FIGHT CANCER:
*The little girl in the Dora the Explorer Pajamas puking in a little pink bin fights cancer.
*The Mom who washes your wigs in the sink, conditions them, and buys wig heads and wig stands for you fights cancer.
*The girls who has a fake prom and takes pictures on the hospital staircase fights cancer.
*The boy who can't play with the neighborhood kids because he has low platelets today fights cancer.
*The woman who has her breasts removed and feels like she's been stripped of her womanhood fights cancer.
*The man who jokes around about having one testicle even though it really emasculates him and makes him feel self conscious fights cancer.
*The boyfriend who sits by your side watching Family Guy day in and day out while all of his and your friends continue on with their lives and stop inviting you places fights cancer.
*The man who chooses to stop treatment and live out the rest of his days to the fullest, fights cancer.
It's the victims. It's the caretakers. It's the people who face the disease head on--the people who have everything to lose--THEY FIGHT CANCER.
You can fight for a cure. You can fight for awareness. You can fight for progress, for research, for change...but if you don't have that disease wreaking havoc on your body, within your CLOSE loved one...you're not fighting cancer.
Maybe you disagree with me. You probably do. But that's how I feel. I fought cancer, and it was an experience that anyone who hasn't had cancer could never, ever understand.
We cancer patients don't have a lot that we'd like to brag about. Being a survivor is great, sure, but at what cost? Let us have this:
WE FIGHT CANCER.
Needless to day, after that meeting, I was really upset and angry. I cried for awhile. My family got kind of mad at me. They thought I was being totally unfair in my assumptions and I admit that I probably am. I can see why people want to do something, why people want to help. I really can. I just feel like to say you fought cancer--man you gotta really earn it. Because when you actually have cancer, you really are fighting with every fiber of your being. It's absolute hell. It's truly a personal war.
As you might have guessed I decided then that the Relay for Life wasn't for me.
Ultimately, I decided that being active wasn't for me. Not yet. I needed time to settle.
I made some appearances at the local Relay to sing the National Anthem, and to help a close family friend with cancer.
But I never stay. I could never participate. Because to me---it's a social event. A social event with disturbing posters to remind you why you're there as you chat with your friends walking around a track. Signs that offer facts about all the possible cancers that you could get. Feeling tired? Take a little break and read about throat cancer! Got a free moment? Look at this information about mouth cancer!
I will say, the ceremony is beautiful. I'll give them that.
But I dunno folks. I respect y'all for doing Relay, but I don't get it. No matter what people say, I just don't. I know people like to feel like they're giving back--but one night a year? One night a year and a video claiming "you fought cancer"? That's not fair. At the event I attended, someone said over the loudspeakers that when you're in the middle of the relay and it's four in the morning and you're tired, and want sleep...you know the struggle of a cancer patient.
Oh hell, no you don't.
I obviously don't need to reiterate my point that I don't like the Relay for Life. I respect what it's accomplished, and its intentions. But if you really wanna make a difference--if you really want to help out in the cancer community, don't walk around a track for one night a year and call it "fighting cancer."
I'm sorry folks. But it's that time of year, and it's something that really bugs me. This is my blog. These are my opinions. I hope you'll respect them, and know that these are only my personal feelings, and no mean comments or retaliatory remarks will change them. I have a right to feel this way, and you have a right to disagree. But do it on your own blog. This one's mine.
Hope I didn't gain any enemies from this post. I know many people who really love the Relay and that's fine. But I promised to be honest with this blog.
And so, ladies and gents, I give you honesty.
Jesse
Sunday, April 14, 2013
To be (cancerous)...or not to be (cancerous)
Ladies and Gentlemen....it is time to PANIC!!!!!!!!!!!!!!!!!!!!!!!!!
The day is almost here--the day when we find out just how cancerous I am...or am not (grammar???)
Listen up.
I had a dream last night. A dream that reminded me that I can never get too comfortable, because my body is a freaking landmine.
In said dream, I was sitting in a Wal Mart (yes, sitting) on the floor in front of some display. Now, if I had simply been sitting in Wal Mart in front of a shelf, I would not have been able to make any sense of the dream. But in the dream, I was bald. Not only was I bald, but I was wearing my blue dress.
The blue dress! The SUNY Upstate-ugly-bald-chick-radiation-burn-chemo-vomit-sleepy-oxycodone-kidneyfunction-injection-fritos-pizza-nurses-nerfgun-hospital-smelly-get-out-of-my-room-I'm-too-old-to-trick-or-treat-around-the-cancer-ward-blue dress.
It wasn't really a dress so much as it was like...a nasty nightgown type thing that you could pass off as a dress for someone who has no fashion sense whatsoever.
I had the dress in blue and yellow. I can't remember which came first, the blue or the yellow, but I remember my mom asking me if I'd like her to pick up another one, because it worked so perfectly in the hospital. It hung low enough that my port was easily accessible, and didn't stick to the tape on my chest, or cause it to peel. It was easy to maneuver around tubes and medicine poles, didn't irritate my skin, and was very convenient when the nurse came in every two hours to make me take a leak. You see what I mean.
When I finished chemo, I told my mom that the dresses needed to go. They were so depressing, and not conducive to a girl who is trying to pretend that the past year of her life didn't happen. So they were disposed of post haste.
But apparently, my subconscious remembers them well. Because in the midst of final exams, final performances, final presentations, my brain reminded me that it's about that time again...it's scannin' time bitches!!!!
The dream makes sense. The blue dress, the bald head, the Wal Mart (I have a ritual the night before scans--my mom gives me twenty bucks and I go explore Wal Mart...gets my mind off things)--a brilliant reminder from my subconscious that its time to start panicking!
Now, the most rational way of dealing with scannin' time is to look at the facts:
*I feel fine! (and I'm sexayyyyy!)
*No pain.
*Hips doing fine.
*Bruising down to a minimum.
*Stronger than I've been in a long time.
*Pooping normally (the most important aspect of them all)
Reason would tell us that there's no reason to worry, right?
WRONG!
Over the next few weeks, I will look for as many reasons, signs, omens, etc, that my cancer is back, because it is clearly the most reasonable thing to do. By the time I get to the doctors, I will be so thoroughly convinced that I've relapsed that any other result will be utterly shocking!
You see, I have to convince myself the cancer is back. It's the only mechanism I have for getting myself through the crazy interim waiting period between now and my scans.
It works like this: In my brain, I say "Jesse...it's bad news. The cancer is back."
I have to expect the worst...it's in my nature...I'm a pessimistic, angry, easily annoyed, frustrated bitch.
In this case however, I find that it works to my advantage. It forces me to examine how I would deal with things if the cancer is back---and also helps me realize that it wasn't all bad:
I have to admit--it wasn't all bad. Just mostly bad.
Once I remember these few good aspects, I know I can handle anything--either outcome.
----->If there's no sign of cancer--amazing! I'm a lucky, lucky girl.
----->If there is...DING DING DING! bring it the f*** on. Round 2 bitches, here we go. Because the truth of the matter is, I can do it again.
And what choice would I have? It's something I think that only people who've been seriously ill could ever understand. People say to us "you're so strong, you're so brave." But there is no other choice. You just do it. The doctor says chemo, and you get chemo. The radiologist says radiation, you do radiation. The nephrologist says kidney transplant, you beg your sister for her kidney. There's never really this ultimate inner debate that people assume you have. There's not usually a point when you say "I choose to be strong." You just do it.
I guess in actuality I'm just preparing myself for the worst. Is it a fool-proof method? Probably not. It'll still be devastating if there's bad news. But at least I've prepared myself. I know what to cling to, I've thought it all through.
Just when you think everything's fine and dandy, you dream about a blue dress and everything's crazy again. Everybody has their cross to bear, and this is mine.
Life sucks. It's true. Everyday is just a new set of hours in which we all just deal--some days are better than others, some easier, some harder...
Good or bad...we deal. (drugs)
Just kidding, I don't deal drugs.
The day is almost here--the day when we find out just how cancerous I am...or am not (grammar???)
Listen up.
I had a dream last night. A dream that reminded me that I can never get too comfortable, because my body is a freaking landmine.
In said dream, I was sitting in a Wal Mart (yes, sitting) on the floor in front of some display. Now, if I had simply been sitting in Wal Mart in front of a shelf, I would not have been able to make any sense of the dream. But in the dream, I was bald. Not only was I bald, but I was wearing my blue dress.
The blue dress! The SUNY Upstate-ugly-bald-chick-radiation-burn-chemo-vomit-sleepy-oxycodone-kidneyfunction-injection-fritos-pizza-nurses-nerfgun-hospital-smelly-get-out-of-my-room-I'm-too-old-to-trick-or-treat-around-the-cancer-ward-blue dress.
It wasn't really a dress so much as it was like...a nasty nightgown type thing that you could pass off as a dress for someone who has no fashion sense whatsoever.
I had the dress in blue and yellow. I can't remember which came first, the blue or the yellow, but I remember my mom asking me if I'd like her to pick up another one, because it worked so perfectly in the hospital. It hung low enough that my port was easily accessible, and didn't stick to the tape on my chest, or cause it to peel. It was easy to maneuver around tubes and medicine poles, didn't irritate my skin, and was very convenient when the nurse came in every two hours to make me take a leak. You see what I mean.
When I finished chemo, I told my mom that the dresses needed to go. They were so depressing, and not conducive to a girl who is trying to pretend that the past year of her life didn't happen. So they were disposed of post haste.
But apparently, my subconscious remembers them well. Because in the midst of final exams, final performances, final presentations, my brain reminded me that it's about that time again...it's scannin' time bitches!!!!
The dream makes sense. The blue dress, the bald head, the Wal Mart (I have a ritual the night before scans--my mom gives me twenty bucks and I go explore Wal Mart...gets my mind off things)--a brilliant reminder from my subconscious that its time to start panicking!
Now, the most rational way of dealing with scannin' time is to look at the facts:
*I feel fine! (and I'm sexayyyyy!)
*No pain.
*Hips doing fine.
*Bruising down to a minimum.
*Stronger than I've been in a long time.
*Pooping normally (the most important aspect of them all)
Reason would tell us that there's no reason to worry, right?
WRONG!
Over the next few weeks, I will look for as many reasons, signs, omens, etc, that my cancer is back, because it is clearly the most reasonable thing to do. By the time I get to the doctors, I will be so thoroughly convinced that I've relapsed that any other result will be utterly shocking!
You see, I have to convince myself the cancer is back. It's the only mechanism I have for getting myself through the crazy interim waiting period between now and my scans.
It works like this: In my brain, I say "Jesse...it's bad news. The cancer is back."
I have to expect the worst...it's in my nature...I'm a pessimistic, angry, easily annoyed, frustrated bitch.
In this case however, I find that it works to my advantage. It forces me to examine how I would deal with things if the cancer is back---and also helps me realize that it wasn't all bad:
*My family was closer than ever.
*I got to eat whatever I wanted.
*I got lots of time to read and write.
*Showering took less than a minute.
*No shaving required.
*Always had an excuse to take a nap.
*I met some of the most selfless people.
*I had a very wise sense of perspective, which I easily lose sight of now that I'm "normal."
I have to admit--it wasn't all bad. Just mostly bad.
Once I remember these few good aspects, I know I can handle anything--either outcome.
----->If there's no sign of cancer--amazing! I'm a lucky, lucky girl.
----->If there is...DING DING DING! bring it the f*** on. Round 2 bitches, here we go. Because the truth of the matter is, I can do it again.
And what choice would I have? It's something I think that only people who've been seriously ill could ever understand. People say to us "you're so strong, you're so brave." But there is no other choice. You just do it. The doctor says chemo, and you get chemo. The radiologist says radiation, you do radiation. The nephrologist says kidney transplant, you beg your sister for her kidney. There's never really this ultimate inner debate that people assume you have. There's not usually a point when you say "I choose to be strong." You just do it.
I guess in actuality I'm just preparing myself for the worst. Is it a fool-proof method? Probably not. It'll still be devastating if there's bad news. But at least I've prepared myself. I know what to cling to, I've thought it all through.
Just when you think everything's fine and dandy, you dream about a blue dress and everything's crazy again. Everybody has their cross to bear, and this is mine.
Life sucks. It's true. Everyday is just a new set of hours in which we all just deal--some days are better than others, some easier, some harder...
Good or bad...we deal. (drugs)
Just kidding, I don't deal drugs.
Monday, April 8, 2013
Confessions of a Disgruntled Second Grade Future Cancer Survivor
The following passages were found in a red composition notebook in the basement of Jesse's house. The words (spelling, capitalization, and punctuation) appear EXACTLY as they are in the document--they have not been altered.
They are published here for your entertainment. And if you pay attention, you might just learn something from them...but probably not.
I give you:
They are published here for your entertainment. And if you pay attention, you might just learn something from them...but probably not.
I give you:
Confessions of a Disgruntled Second Grade Future Cancer Survivor
September 18, 1998
My favorite time of the day is dinner. I do it with my family. END OF ENTRY
----------------------->Fatty.
September 25, 1998
My favorite clothes to were are my blak pants and my purpul shirt. I got it at the gap. I wear it to school. It is a nice outfit. END OF ENTRY
September 28, 1998
Usually I am happy in the morning first I get dressed. Next I eat breakfast. Finally I go. END OF ENTRY
--------------------------------->Glad we got that cleared up.
October 7, 1998
I would never play with maches or lighters. Why? because you could get really hert. So never touch enyting that can case a fire. END OF ENTRY
------------------>I touched a stove once to see if it was on. And it hurt. I was right.
October 15, 1998
We watched a movie called Miss Nelson is missing. It's about a very noisy class. Our class is noisy I am somtimes I talk with my nibor but I get quieter. Even no wear noisy I like school. END OF ENTRY
--------------->My talking with my "nibor" I meant plotting with the person who sat next to me about ways to get the girl who sat across from us in trouble (Sorry Britt.)
November 5, 1998
When the rain hits my face I think it feels like cold snow hitting my face. END OF ENTRY
------------------------->I was always very intuitive.
December 2, 1998
My least favorite food is limae beans. I throgh up. But my dad made me eat them once. END OF ENTRY
-------------------->He said we wouldn't go to the mall until I had a bite. Meanest father.
January 8, 1999
Last year I got a spice girls watch. And when I brought it out for play everyone wanted to play spice girls. And two peopole wanted to be baby spice. Then everyone started quitting. And all Who was left was my friend Amber. We were really mad at eahother. But we made up. END OF ENTRY
---------------------->Amber, if you're reading this, thanks for sticking around til the end! I know how overwhelming that game could get.
February 4, 1999
This month you should be honest and truthfull to all. It sometimes is hard to tell the truth because your afraid you'll get in trouble. But sometimes when you tell the truth you won't get in trouble. The person will be greatfull you told the truth. END OF ENTRY
February 10, 1999
I had a poptart a big glass of mdecided to wear my teddy bear sweater and my bellbottom jeans with the black stripe down the middell and then I washed my face. END OF ENTRY
------------------------------>Those bell bottoms were the shit. I was all about bell bottoms.
March 10, 1999
Dinosaurs have been around about 200 years ago. No people were around by that time. Some people think they just got old and died. END OF ENTRY
----------------------------->This is the most brilliant thing I've ever said.
March 15, 1999
I had a GREAT sunday. It was my birthday. I had 5 favorite presents. One was a secret diary, It's like a computer diary. It's really neat. Another one was a flashlight fun Stacie and pooh doll. The flashlight really works. And this art set it's called Thumthings. And a thing were you paint frams. And the last one was a little baby dressed as a bunny. END OF ENTRY
March 24, 1999
My best singer is Brittany Spears. She sings, Baby one more time. She is a good singer. END OF ENTRY
May 3rd, 1999
My mom went to NYCity. I went to the carnival with my sister and my dad. We all went on Spin the Apple, the Fun Slide, and all sorts of things. Then that night my mom came home. She bough me a beanie baby and cats cradle. END OF ENTRY
May 17, 1999
On Saturday I went to my friends new house. We played in the fort. We saw a real rabbit hole. And a dead pig barried in leaves. And on Sunday my dad brought me to the store and gave me a choice. I could get the beanie baby Kicks or the Hope. I got Hope. I really like it. The end. END OF ENTRY
------------------------------------->I haven't seen a dead pig in my entire life.
May 24th, 1999
It is a cloudy day. We will go outside for play. I hope it rains in the evening. The flowers need rain so they can grow. They also need END OF ENTRY
------------------------------------------------------->WHAT ELSE DO THEY NEED??????
June 1st, 1999
On momorial day at 18:15 AM My dog had a baby. I named the baby Bouncer. And I march in the parade with my soccer team. It was lots of fun. END OF ENTRY
--------------------------------->I didn't have a dog until I was 18, and never went by military time.
Love
This Bitch
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