Monday, April 20, 2015

Part One TFIS

Oh jeez.

Okay.  Well...I really, really, REALLY wish I could just shock the hell out of everyone and say that I love this book.  You have no idea how badly I've been TRYING TO LIKE THIS BOOK.

But alas.


I hate this book...

However.  Instead of jumping head first into everything I disagree with and shake my head about, I'm going to begin with a few of the positives...because I will say I do have SOME positive things to say so far.

For those of you who told me that Hazel's thoughts and narration remind you of are right. I was actually shocked by certain passages because I thought it sounded so much like me or like something I would say.  Although Hazel is a lot more polite to her doctors and staff, and does not swear at them or try to make the med students cry.

She has this dark, kind of twisted sense of looking at people's treatment of her which totally rang true for me.  She acknowledges how sorry people feel for her, but she also comes right out and talks about how illness repulses people, which in turn, makes her feel repulsive.

It's something icky that no one addresses.  Illness is gross, and seeing it plays psychologically on people's fears about themselves  And not just in the whole constipated, throwing-up, there's-a-bag-of-my-piss way.  The body is sick. There's shit wreaking havoc--tumors, bacteria, infection, unclean's disgusting. (Plus, you never know which patients have refused to brush their teeth for the past few weeks...Tons of gross, zero cavities, thank you very much :D

I remember laying in bed at the hospital when anyone other than my family came to visit, half of me pretending I liked the person, the other half wondering what they were actually thinking.  Quite likely, they wanted to be anywhere but standing next to my bed surrounded by other sick people.

Illness repulses.  It's true.  Even if they say it's not... people STILL act like it might be "catchy".  I was glad that statement was made for some reason.  Maybe because sometimes I feel gross myself (even though I DO brush my teeth regularly now  YAY GOOD JOB JESSE!!!!!).

Moving along...

"...she seemed to be mostly a professional sick person, like me, which made me worry that when I died they'd have nothing to say about me except that I fought heroically, as if the only thing I'd ever done was Have Cancer" (Green 100)  <--------LOOK AT THAT CITATION!  THANKS SCHOOL!!!!

I decided to include this quote because next to it, I have written"YES! YES!  FINALLY, YES"

Apparently I was quite taken with this paragraph.  And as I recall, this is the section of the book where Hazel Facebook stalks the dead girlfriend of Augustus Gloop--a character who has had the dreadful misfortune of losing a limb to Osteosarcoma and dating not one but TWO cancer chicks!  Good for you, Augustus.  If only you didn't talk like fucking Socrates.

Err.  Sorry.  We were talking about a POSITIVE thing.  Okay.  I liked this section of the book because sometimes it really does feel like the only impressive thing I've done in my life is beat cancer.  And I know this is kind of different because she's talking about what people will say after she's passed, but I think it's a pretty relevant topic to anyone who's had cancer as a young adult.  You haven't done shit with your life yet, but you didn't die so that's good.  Bravo.

And not for nothing, if I were to die tomorrow, I know for a fact that it's the biggest thing I'd be remembered for.

Hazel and Augustus' cute actually.  I like it, although I hate their dialogue (more on that later).  I'm not totally sold on the whole "going to Amsterdam to ask questions about a book" thing.  It seems a little silly to me...but hey, what the hell.  I like the characters together, and in some ways, they remind me of my ex and I when I was sick.  It's an honest depiction of two kids in love dealing with something that's totally beyond anything they can handle or comprehend---which means, of course, it can't end well.

And last on my list of positive things...

I really liked Hazel's little breakdown when she started screaming that she was a grenade.  I, too, have felt like a grenade.  Not a Jersey Shore grenade, though  OBV.  A grenade in the sense that my impending death could at any time wreak havoc on the people around me.  Well, the people who really care--not just the people who pretend to--(THAT'S RIGHT SENIORS '09! I KNOW YOU ONLY CLAPPED FOR ME AT GRADUATION BECAUSE I WAS THE SICK KID!!!!!)

Hazel's whole meltdown in general was totally on point. Every single fucking cancer patient over the age of 12 has had the epic meltdown.  It's completely true.  Whether its brought on by the thought of ruining everyone's life, or the fact that you're still on chemo after X amount of months, or your mom gave you Pediasure to make you fat and told you it was a protein shake and you gained 10 pounds (MOM)...the epic meltdown is a token of cancer-dom, and John Green constructed it perfectly in this book.  It resonated.

I had a little loveeeee now I'm back for moreeeee.

I'm listening to Spice Girls.

Okay.  My first problem with this book so far:

Where the fuck did Hazel find this perfect support group?

I just find it hard to believe that there just happened to be this perfect support group for cancer kids from age 12-18 that meets EVERY WEEK right where she lives.  It's too convenient.  It's also pretty convenient that THIS MANY people attend...because, well, they're teenagers.  I know my parents wouldn't have made me go, and I certainly wouldn't go willingly because I wasn't mentally healthy enough to take on the troubles of all of these other cancer kids plus my own, plus the other kids on my ward.

And really?  They list the dead at the end of every meeting?  That's pretty bleak...

I also had a huge problem with the following passage from Chapter 1:

Once we got around the circle, Patrick always asked if anyone wanted to share.  And then began the circle jerk of support: everyone talking about fighting and battling and winning and shrinking and scanning.  To be fair to Patrick, he let us talk about dying, too.  But most of them weren't dying.  Most would live into adulthood as Patrick had.

(Which meant there was quite a lot of competitiveness about it, with everybody wanting to beat not only cancer itself, but also the other people in the room.  Like, I realize that this is irrational, but when they tell you that you have, say, a 20 percent chance of living five years, the math kicks in and you figure that's one in you look around and think, as any healthy person would: I gotta outlast four of these bastards.)

Underneath this passage, I have written Never, never, never.  Not cool.

This passage made me tear up over my queso (I was reading at Moe's).   It also, being on page 5, made me nearly give up on the book before it had even really begun.  

This is just so, so wrong, and I don't say this to sound like Mother Theresa because we all know from this blog that when it comes to cancer, I'm like the spawn of Satan.  When I looked around that cancer ward from day to day...I never once...NEVER ONCE had any INKLING of competition.  There was only sadness for EVERYONE there.  

And when my friend Heather died...

Whoa, Nelly, let me tell you I wished it was me.  And that goes for everyone who followed: Robin, Amber, Trystan, Caitlin, Ashley...I'm actually getting emotional as I type this.  Because I still wish we all could have made it.  It's not fair.  It makes me sad that anyone, any person, any author would think that cancer patients feel like they're competing against each other...because we were a team.  Everyone was on the same team.  And as soon as we lost one, the survivor's guilt greeted us like a freaking bat outta hell.  There was never a thought such as "I gotta outlast four of these bastards."

Even as a joke, it's not funny.  This actually offended me.  And while I knew this book was going to be difficult for me, I didn't think there would be aspects that ACTUALLY made me--no pun intended--sick.

Augustus is a little ridiculous for me.  He is the stereotypical wise-after-cancer paragon of wisdom, even though he's really just a horny sixteen year-old.  He speaks like he's 40 years old, and his interaction with Hazel feels like Gandhi and the Dalai Lama out for coffee.  They just sound like they're way too old, which could be one of two things:  1) the author just makes these characters sound too mature because he's not sure how teenagers talk  or 2) his characters are "worldly-wise" fountains of knowledge because they've had cancer.

I tend to think it's the second option because I know John Green writes essentially for teens.  And if it is the second option...just, no.

I'm gonna wrap this up because frankly, I need a little break from this lit.  

John Green's dialogue between characters at this perfect little teen cancer support group sounds like someone said, "Hmmm...what do I think two kids with cancer would talk about?  They probably talk about this...."   To me, it feels awkward.

On a personal note, I have been struggling a little bit with the book.  To his credit, Green writes Hazel's parents very well.  They remind me of my parents, and so reading about their suffering is very difficult.  As I mentioned, the part about everyone competing with each other made me emotional because I was so strongly in disagreement...and I'd be lying if reading about people's odds in this book didn't make me start googling shit about my own cancer--something that's never good for anyone.  Google is not a cancer patient's ally.  

But for the most part, I'm enjoying the whole "experiment" of it.  I don't like the book so far, and let's be honest:  we all know I'm totally biased.  But hey.  I still haven't given up hope that in the end, I'll be glad I read it.



PS.  If I read "That's the thing about demands to be felt" one more time, I may just have to close the book.  

Monday, April 13, 2015

You Asked For It...

Throughout the past year and a half, I've been asked countless times by family, friends, blog-readers, and other cancer survivors if I have read or seen The Fault in Our Stars by John Green.

The answer has always been an unenthusiastic and definitive NO.

I've been completely against this book/movie from the moment I heard of it.  In the beginning, it came from a fear that media and Hollywood would essentially "glamorize" young adult cancer in a sense.  Make it "popular" in all the wrong ways.

Let me give you an example that may or may not clarify things for you, but that I will thoroughly enjoy, because it's my blog and I'm selfish:  ya know how in the 80's classic dark comedy/cinematic masterpiece Heathers,  JD and Veronica kill the popular kids and make it look like a string of suicides in an attempt to rid the school of bullies?  But they inadvertently turn suicide into a really cool and popular thing to do? Yeah.  I guess I thought that by mainstreaming young adult cancer by throwing it into a "star-crossed lovers" situation, it was totally going to ruin the seriousness and credibility of young adult cancer and the need for more awareness and funding.  I mean, teen girls ruined Twilight for all of the people who ACTUALLY ENJOYED THE BOOK.  (YES I ENJOYED THE BOOK TWILIGHT.  I'M A CLOSETED TWILIGHT FAN.  #TeamJacob).  I honestly thought that this book and its Hollywood counterpart would mishandle the seriousness of young adult cancer.  Because it's fucking serious folks.  We need funding.  We need even MORE awareness.  Can you blame me for being skeptical?

So that was strike one for me.   No way was I giving this a chance.

Strike two:  the ASSUMPTION by others that I was a fan of this book/movie simply because I had cancer.  You know the cliche about assumptions?  Well, in this case, the assumption made an ass of U.  Period.

And time went on...I realized that another reason I refused to give this story a chance is because I felt that someone else was trying to tell my story. I, selfishly, wanted to be the authority on young adult cancer, and I was not happy to have some sappy love story come in and essentially become the current go-to story for young adult cancer.  The thought process:  Who the fuck is John Green?  Did he have cancer?  Has he ever been a 17 year old girl who lost her hair?  Lost her normalcy?  Lost about a year of her life?  I have.  This is MY story to tell.  Not some 35 year-old dude writing stories for hormonal girls with pimples.  And isn't Shailene Woodley the pregnant girl from the pregnancy show where everyone is pregnant?

This is where I went wrong.  This is not fair of me.  This assumption...made an ass of ME.

So now what?

Well.  I'm going to read it.  I'm going to read it and chronicle my thoughts right here on this blog.   (And also I'm reading it with a highlighter in my hand so you know I mean business.)  Isn't it about time that a girl who had cancer at 17 shared her thoughts on this book about a girl who had cancer at 17?    I think so.

Be prepared.  If you like this book, and have read this blog before,  then you know there's a chance I'm going to totally trash it with curse words galore.

But I'm going to try to give it a fair shot.  It's 25 chapters so I'm breaking it up into three parts.

Part One: Ch. 1-9  (by 4/20)
Part Two: Ch. 10-17  (by 4/30)
Part Three: Ch. 18-25  (by 5/10)  ----------------I'm a slow reader, okay peeps? 

Lastly, and perhaps most importantly:

When I picked this book up today in Walmart surrounded by the beautiful and majestic creatures who often frequent that glorious place,  I read the first 5 pages or so.  And it struck me out of nowhere:  are you capable of reading this, Jesse? Are you going to be okay?

I don't know.  This book might be very, very difficult for me to read.  I want to do it because I want a young adult voice--a young adult who can seriously identify with this character--to provide an opinion on this book.  Because whether you think so or not, this book is now looked at as an account of young adult cancer.  And while it is not my story, it is now a popular representative of my story, and at this point, it doesn't matter if the story of so and so (I just bought the book--I have no idea what the characters name is...oh Hazel.  Hazel?  Furrreal?) is an accurate account of a young person with cancer, my story is.  If this book...these shows (Chasing Life, Red Band Society),are going to represent me, then I owe it to myself and the young adult cancer community to speak out about what I think.

The point of that was, whether or not you agree with my thoughts on this book, I ask for your respect. This story, whether I like it or not, WILL hit close to home for me, even if its crap.  Perhaps, deep down,  that's another reason I've avoided it.

We'll find out. 

Be back soon bitches,

Thursday, March 19, 2015

A Note from Courtney

Hello all.

Today I wanted to share with you a message from one of my very best friends.

Courtney and I originally bonded over our cancer journeys.  We are both 23, both diagnosed at a pretty messed up time in a persons life without a dose of cancer.  But I think pretty quickly, we realized we had a lot of the same traits, health issues aside.  Through all of our discussions, it's become clear that we're both headstrong and stubborn, proud of our talents, and eager to share those talents with the world in some way, some how.  We're competitive, in ways that sometimes make us a little nuts, but that propel us forward.

Forward is the motion we both want to go in our lives.  Forward from cancer, forward from pity.  Forward from letting our compromised health define our future, threaten our goals, and take away anything from us that a "normal" person would be able to have a lot more easily.

Except these past few months, Courtney's cancer has progressed significantly, and her condition has declined rapidly even just these past few weeks.

We've talked at length about why.  We have no conclusions.

We've talked about how this could happen...again, nothing.

We've talked about how this process could be made as painless and annoyance free as possible.  There doesn't seem to be a fool-proof way about that either.

So I asked a few months back if she'd ever considered writing.  She said she had, but was wary of
posting anything herself.  She didn't want to come off as attacking of others, or complaining, or pathetic in any way (all things I assure you, she is not).  Luckily, I told her, I am perfectly okay with attacking, complaining, and being pathetic--all things I do and am n this blog.  I told her if she ever felt like venting or just putting something out there, she could always use this blog as an outlet.

Today she sent me something she'd like me to share with you.

Here we go.  A note from Courtney:

Let me preface this by saying not only did it take me days to come up with all of the correct words to express these thoughts, but without the help of my friends and nurses I could never have remembered and typed them all down correctly. So thanks to those wonderful people. Below is a bit of a rant,
which I am adamantly against doing on social media (whine on your own time people!) however I am
making an exception to my own rule. Maybe it will be insightful for some, maybe it won't be, maybe you will think "what the fuck?" and just scroll on. Either way, it feels good to have put this all out in black and white.

I've learned so much in the past few weeks, things about myself that I never thought I needed to learn. But I did. I needed to know that I could be on my own again (internally I mean), that I could stand on my own two feet (not literally of course). Just because you have come to depend on certain people, doesn't mean that you have to. Just because you consider them your best friends doesn't mean that they consider you theirs, and it definitely doesn't mean that you have to keep calling them yours even when they act like assholes. 

Wow.  That was refreshing.  Yes, some of you are assholes. Maybe that makes me an asshole for saying it, but whatever, zero fucks given.

It's OK for things to change. Memories can just be memories, they can be happy, they can be good times, but that doesn't mean that you shouldn't love and appreciate what God has given you right matter how different of a dynamic it may be.

Sometimes you grow up and other people don't. Sometimes you are FORCED to grow up and see 
situations differently, and sometimes when people can't see something from the more mature perspective and still act young and impulsive when they're older than you, it's going to piss you off.

There are moments, days, weeks, where I have been inordinately saddened by the fact that my life is not what that of a normal 23 year olds should be. I don't go out on the weekends, I can't even really get out of bed. I'm--as Carrie Bradshaw would say--"the last single girl" and believe me with zero libido, a butch hair cut, and the fact that I can't lift myself up right now that isn't going to change. I was always at the top of everything, top of my class, smarter than some (OK MOST) of my professors and now I see people who I know didn't work as hard as I did and who were less intelligent than I am getting jobs and interviews I had dreamed of. I see people landing dream jobs in
NYC with arts administration or dancing for ballet companies and genuinely enjoying their work. And I hate it because I am jealous and bitter. I've always been a jealous person, but I've used it to my advantage, to push harder; now that I'm no longer able to do that I just have to sit back and bitterly watch all of you have the happiness that I feel I deserved too. But maybe I don't. Who knows, that really isn't my call to make.

When I'm not having one of these miserable self-loathing days I have learned to be at peace with myself. Just me. It's OK to like quiet, to just breathe. Inhale....exhale.

Not everything is forever, but some things are. And those people and those feelings are the ones you should cling to with your whole entire heart, because they are the ones that mean it when they say I love you and that love you every second even when they aren't saying it. I finally know what that feels like. And it feels AMAZING. I wouldn't trade it for all of the fun, "friends", adventures, in the world, because let's be honest....I've already forgotten half your names anyway. FINI.

Bitch here again.  I'd just like to say...treat the people who matter to you, like they actually matter to you.  Don't pretend they know.  Make them know.


Wednesday, November 12, 2014

Crows and Things

When I was very young I picked up a dead bird.

I don't really know why I picked up a dead bird.

I can speculate as to why I picked up a dead bird.  I saw it there near this big patch of rocks by my driveway which I had cleverly called "the rock pond." I was playing a game I called "Rebecca" in which you pretend you are a girl named Rebecca and essentially that is how you play the game "Rebecca."

I digress.

So I'm playing the game "Rebecca" and Rebecca notices a stark black "thing" at the edge of the rock pond near the telephone pole (near a telephone pole no less!)
  NOTE: I am going back to first person now. I just want it to be clear that I am Rebecca and Rebecca is me and we are one and the same according to the rules of Rebecca.

So yeah, I notice this black thing and just casually make my way over to it and realize it is this big ole black crow totally frozen with rigor-mortis, belly up.

Disgusting right? Well nothing is too disgusting for Rebecca. Who is me.

I'd never seen anything dead before, and don't think I actually knew what "dead" meant.  The word didnt exist to me yet...but this bird...I knew it wasn't fake...a Halloween decoration or a toy. To me it was just a bird that was no longer living. I dunno what it was doing.

I had no concept of death at this point in my life. To me this crow was not dead. It was just not alive. It was not breathing or cawing or flying or being actively ugly rather than passively ugly.

For whatever reason, I knew I had to pick it up.  I brought it up the steps of the porch to show my dad who I instinctively knew would yell at me. But I strutted down the breezeway like I was hot shit and shouted for my dad to "come look at the stick I found!"

Oh yeah. A stick. Real smooth.

He came to the door and looked at me like I was bleeding out or something, shouting for me to put it down and carrying me to the sink to SCRUB my hands.

He, of course, explained to me that this was not a stick (which I'm pretty sure we both knew I was aware of before) and that it was dead.


Now I knew "dead".  You could be alive and you could be dead. Simple enough. Thanks, Dad!

This memory comes back to me a lot.  I've thought of it more and more since my spin in the cancer boat.  With all of the death I had going on around me, I had to approach my thoughts about death in a different way.  Especially because until this point, it wasn't really something I had to think about too often with regards to my own death.

These were kids dying around me.  Kids I was sitting beside one moment and then...gone.

The idea of a "higher power" putting people through this and then making them "dead" didnt make sense to me. I dont know what I believe in...but if there is a higher power, then I couldn't accept that he (or she) was just making them "cease to exist."  So I started reminding myself that I just don't know what happens-what the opposite of "alive" truly entails.  My coping mechanism has been to stop thinking of them as "dead" when all I really know about their state of being is that they are not alive.

Like the crow...brilliant right, see how I tied it all together?

I write this post from a pancake house in Virginia at 6:15 am. I am sitting next to a guy named Chip and jot down these thoughts in a composition notebook covered in Strawberry Shortkake glitter stickers. (You'll have to forgive me friends. I'm currently reading Lena Dunham's memoir and she is a huge fan of random, quirky details that don't necessarily contribute importance but do make the sentence unnecessarily long.  Love you Lena. Yes, I am jealous).  I came to the pancake house right when it opened at six, following the news that my Godfather passed away just around 4:15. My uncle Harry. Lovingly referred to as simply Harry.
     I hadn't been sleeping anyway because I knew that this news was short on it's way.  I'm on a six week contract in the middle of what feels like nowhere without a single person to cry on or to, so what else would I do but write over French toast next to Chip?  Thinking about dead crows that aren't dead...or are they?

   I don't friggin know.

   My Godfather and I go way back.  Yes, all the way to my baptism back, but also to a day that in my mind was an even bigger moment for me both because I actually remembered it and because it was Spice Girls related.

   I was very young--somewhere in my Rebecca and the crow days. I was at the mall with my parents, my aunt,
and with Harry, when I happened upon a pink and white Spice Girls watch with an elastic wristband. I had lived long enough to know that I was probably gonna grow up to be Scary, Baby, Ginger, or Poshy (yeah, I insisted on calling her Poshy for awhile until she cut her hair and then for some reason something changed in me).  But I would obviously need this watch to be whoever it was I was supposed to become and fulfill my platform boot destiny (oh yeah I was very philosophical in those days).
    My parents, cruel as they are, told me that it was too close to Christmas for little gifts like this, and that I'd have to wait.  But I knew in my heart that the watch wouldn't wait.  It'd be gone.  So I cried and sulked the rest of the outing while frantically humming "Saturday Night Divas" as a means of calming myself down (I had Spice Girl schizophrenia).
     When it came time for us to part ways with Harry and my aunt, Harry grabbed my hand and pressed the watch into it. He grunted, "here."

      It was a Spicy miracle.

      But what it really, truly did was set the tone for our relationship.  I was his Goddaughter, and that
made me special, he was my godfather and that made him special.  There was a smile and twinkling of the eyes that was reserved only for me.  This was something we always shared.

     One year ago, we came to share another thing.
     We shared cancer.
     Of course, everyone's battle is their own, and no two could ever really be alike, but just as my baptism linked us, our cancers linked us.
     It's tricky though.  Being a 23 year old whose been around the block with cancer before, to then encounter someone older than you being diagnosed--let alone a family member you look up to.  You dont know how to be.  You want to say, "hey I can kind of relate to some of the things that you are going through, but I'm not going to tell you that because why would you want to hear from a stupid twenty-something how she relates to what you're going through"?

    But the first time he saw me after his diagnosis, he called me over and said "hey, I need a hug from YOU."  And I knew that that's how our odd similarity would be acknowledged.  I'd take my cues from him.
     Our "cancer talk" was always very hush hush.  Our chemo banter very staccato and quick:
                "Head gets cold."
                "Fingers are tingly."
                "Oh yeah."
                "Can't taste cake."
                "The ice tastes like--"

That was all.  That was all it took.
    I've been feeling so guilty about how happy these conversations made me feel.  Over the years our family has gotten bigger, Harry has grandchildren now, and I know that goddaughters and granddaughters are very different.  Not to say I was no longer important--but you know what I mean.
    I wish the content of the conversations was a bit cheerier  but it made me really happy in a sorts that my having had cancer before gave us those little conversations.  They were quick and brief but made me feel helpful in a way that I don't really understand but am actually grateful for. They're some of my last conversations with him.

     People talk about survivors guilt.  Yeah it exists but I didn't feel that with Harry.  I felt glad that we could have the connection.  And maybe a little guilt.

Because its there somewhere inside you.  The guilt exists.  I sometimes wake up, and touch my cheekbones with the flats of my hand and say, "you still here?"

I'm still here.

Minus one.
Minus a crow.
Minus a watch.

Rebecca taught me that just because something is no longer living that doesnt make it dead.

Words of a Spice Girls schizo...but still...

Ps. Harry--may your head be warm, your fingers untingly, may the cake taste sweet and the ice cubes fresh as a fountain.  I love you.

Tuesday, October 21, 2014

Resurrecting a Little Something

Came across a scholarship essay I'd written a while back. Perfectly sums up how I've been feeling lately and just wanted to put it out into the universe again:

    I’ve wanted to record my experiences for quite some time now.  I refer to bits and pieces of it all the time, whether they are sensory memories or just through storytelling and what not, it seems to come up--at least in my mind--on an almost daily basis.  Even my closest friends only know the “shell” of the story.  The frame-work.  And that’s not because I hold back when I discuss it with them.  It’s because there is really so much to it all that it is just impossible for me to say what I want to say and keep it in the context of a conversation. 
   I was only seventeen.  Seventeen.  And yes, I am aware that teenagers deal with this “stuff” a lot--more than I really care to think about—but what people don’t realize is that because I was seventeen when I was given the big C-word (not that C-word), it shaped who I am almost entirely.  When a forty year-old woman is diagnosed with breast cancer, and embarks on the war-like journey of chemotherapy, radiation therapy, etc, she is already whole.  Meaning she knows who she is.  She has experienced life and gotten to know herself as a person—separate from cancer and sickness. 
   When a young child is diagnosed with leukemia, they will (hopefully) be cured by the time their id really starts to develop.  The experience will already be over and done with to the point where a) they were so young that they won’t remember, or b) they are young enough to be able to leave the majority of the experience behind as a part of their childhood.
    But a young adult who suffers from a debilitating disease such as cancer—well, he or she is branded for life.  Not necessarily in a bad way, no.  It depends on how they mold the experience.  But because they dealt with it during the time in which they are having their initial bouts of self-discovery…wham, bam, thank you ma’am—it’s who they are.  What I learned from my experience with cancer as a young adult has directly lead me to who I am today, and plays a role in every thought I have, every decision I make, and every word I say.  And it always will.  Not to say the woman who defeats cancer at age 40 is not significantly changed—because she is—but she knows who she is separate from her illness.  And a child who beats cancer—well, they have a lot more time to develop and to move on.
    Not me.  I am my cancer, through and through.  And let me tell you—I am DAMN proud.
    Often, when I talk with people, I just naturally refer to a time ‘in the hospital’ or ‘during treatment’.  And half-way through the statement I think “shut up, Jesse, no one wants to hear about that.  It’s so depressing.”  But it is SO much a part of who I am.  It was my entire life for a year and a half.  
    When I say ‘I am my cancer’, it is not because I want everyone to look at me and think ‘poor baby, she had cancer’ or ‘there’s that girl who had cancer’.  No.  It is because the person I am today is a direct reflection of what I went through.  And I say I’m proud because I am.  I am so proud of myself.  I went from a girl who had to have twenty four hours to mentally prepare before a flu-shot to a badass chick who bit her lip every fucking night while her father injected her with two intramuscular shots in the leg (and mad props to you too, Dad).  I went from a girl who thought her life revolved around becoming some famous big-shot to a girl who realized...famous to whom?
   I will not, however, claim to be some perfect human being, though.  While I do consider myself a strong person, there are little things that I still can’t seem to shake.  Growing up—for some God-damned reason—I let society convince me that looks are important.  So when I lost my long brown hair, shit hit the fan.  I never, ever, not ONCE, went out in public without a wig on.  Now, part of that was because I never wanted any pity from anyone, and I’ll be the first to admit that the thought that immediately pops into my head when I see a bald chick walking around is---‘oh my gosh, I feel so sorry for her’.  But the majority of my reasoning had to do with vanity.
   Today, my hair is back, but very short still—and I give myself a really hard time everyday when I look in the mirror, wishing it was long again.  And I know…it’s just hair.  But that’s the thing…cancer attacks the things that seem unimportant to you.  Including  your overall health (ahhhemmm, this is dedicated to teenagers and other young adults who insist on filling their lungs with smoke,  obliterating their livers, getting high, and then driving a fucking car).   It was just hair, it was just my last performance in high school, it was just awards night (that I wasn’t even informed about—thanks West Genesee).  The only reason I even got to go to prom was because the freaking nurses worked around the clock to make sure all my chemo was given at precisely the right time, that I was tanked up on blood and platelets, and that my kidneys weren’t going to shut down in the middle of the event---yeah how’s that for pre-gaming before prom!  Woo!  (Another thing…nurses.  So freakin’ underappreciated.  High five, nurses).
    And family.  Maybe you’re surprised that I include family in a list of things that seem unimportant.  Well.  Don’t you think you take them for granted?  Pretty sure I did.  Until it was a possibility that my time with them was limited.  Give your loved ones a freakin’ hug.  Seriously.  Go, do it.
      I think you can clearly see that these events are fresh on my mind.  I remember every detail.  So when I stop myself from talking about stuff that happened to me during my illness—I have to think about it for a second, and then I let myself continue.  Because just as the things that have happened to you in the past few years are some of the freshest memories you have…I spent a lot of time battling this illness.  So many young people do.  Too many young people do.  So when you hear me, or someone like me, refer to my experience it’s not because I want your pity (trust me, if you look/talk to me like I’m a freakin’ helpless puppy, you are GOING to get called out on it), and it’s not because I want attention.  It’s because it’s who I am.  It was my life during a critical period of self discovery.  I am my cancer—whether I like it or not.  I kicked the shit out of my cancer, and I’ll do it again if I have to.  But the things I learned from it made me who I am.  

Thursday, May 1, 2014

Inspiration and Respect

About a month ago, I wrote up a nice little post about a boy from my past who I believe only liked me for my cancer.  Pretty much.

It sounds ridiculous, but when I look back on my life post-treatment I have to hand it to myself:  I’m f*cking fascinating.  I have all these quirks, and strange habits, and fears, and I go about my everyday life as if all of those things don’t exist.  As if 2009 never happened.
When I think back to that year, there’s kind of a haze over the memory.  The year as a whole, that is.

What I mean to say is that the year as a whole seems to have this foggy amnesia-like cloud over it.  It’s a blur.

But a specific memory—a perfume scent, a beeping sound at 3 am, the soapy taste of Ifosfamide, holding my breath while the nurse plunged a needle in my chest, cursing at people who were just trying to help—that is all as clear as the deep blue sky.

But it’s not every day that I’m accessing these memories—it’s every day that I’m accessing the fog.  I don’t really know if that makes sense.  But every day I’m aware of that foggy cloud over my shoulder whispering question marks and threatening to toss out one of those memories.

Again.  It truly is fascinating.  I’m fascinating.  I’ll say it—it’s my blog, screw humility. 

But the fascination people have with me—the fascination with my story, with memories…with those quirks and strange habits—well, I’m afraid people often confuse it with who I really am, and it blurs their judgment. Confuses them.

At least that’s the way I thought it happened with that boy.  Looking back I fear that he confused his feelings of fascination with feelings of affection. With FEELINGS feelings.
I wrote a blog post about it, but I’m pretty sure my approach in writing it was all wrong.  I showed it to him beforehand, because I felt guilty.  And he asked me something that I know is meant as a positive testament to who I am—but that could not be further from what I want from people.

He asked me why it was that he was not allowed to be inspired by me.  What was so wrong with thinking that I’m inspiring.

You may be thinking NOTHING.  NOTHING is wrong with being inspiring.  What could she possibly have against being inspiring?

But what I think…


What I feel…

Is that foggy little cloud over my shoulder.  Constantly pricking at my back, threatening to swallow me, lording it’s power…and I can’t help but think…this foggy cloud inspires you?  This awful black hole that brings so much pain and uncertainty into my life…is your inspiration?

And of course…you’re probably thinking “no, Jesse.  It’s you.  It’s the fact that you put up with that cloud that makes us inspired.”

Well, let me tell you—I wasn’t given much choice.

I’ve run all the scenarios through my head so many times.  Thought to myself…you can’t just let people do what they do?  You can’t let them spin something positive out of your experience?  They just want to be inspired.

Well, as a close friend of mine would say:
Go inspire yourself.

What I want?  Is your respect.

I don’t want to know if you’re inspired by me.  Inspiration is something that occurs within you, and if you find it in my sad little tale, then that’s great.  Keep it to yourself.
I’m after your respect.

Show me some respect, and we can be friends.

Wednesday, March 26, 2014

I'm a Cockroach

Yesterday I turned 23 years old.

5 years ago I turned 18, and wondered if it might be my last birthday.


I'm a five year cancer survivor now--and yeah go ahead, have a "good for her she's inspiring" moment, I won't begrudge you that.  


One of my goals as a 23 year old bitch who is officially cured of cancer is to revive this blog.  I've had my time away from it, which I desperately needed; it got to a point where I felt like each week I was saying "Okay, Jesse.  Let's delve into the deepest darkest memories you have of your illness, add some wit, swear words, and bold lettering, and make some piece of shit blog post."

No more. 

You may be thinking--well why then, Jesse?  Why don't you start a new blog about something else?  The answer is very simple and complicated: cancer would simply keep coming the f*ck up!  It's still a pretty present aspect of my every day life, and when I ended this blog, I thought perhaps it wouldn't be so THERE all the time.  And I was wrong.

I had cancer, and it still wreaks some havoc, my friends.  But wtf am I supposed to do about it?

Well, for one thing, I'm bringing blogging back.   It will not be a weekly thing.  Probably more monthly, bi-monthly if that's a thing.  And it might not always be totally cancer focused because it really does get super depressing. At the moment I have a love-hate relationship with blogging, but I need to write to get shit out of my head, so here we are.  

You may also recall that about a month ago, in the midst of working two jobs, I tried to start a tumblr.  I posted one little thing and then disappeared.  

No more. 

 I will be posting just some of my self-indulgent little essays and such on there.  I can't even remember what the tumblr was called or what the link was.  Hold up.  I'm gonna look into it.



My own insecurities are urging me to inform you beforehand that I have less than ten followers.  I would rather you hear that from me than log on and say to yourself "oh wow, Jesse has less than ten followers."  ...I feel as though it softens the blow if I tell you ahead of time.

I'm excited to bring this thing back because I really do have things I want to bring forth that I feel are important aspects of living as a female young adult cancer survivor--because there are a lot of differences and separate issues that come up when you look at each demographic separately.

Some of my ideas I believe are going to make people mad.  I've decided that I need to get over that.  I was always that girl who would do or be anyone so long as no one was mean to me.  Middle school, high school, college...I just never wanted people to be mean.

But ya know what?  F*ck that too.  This blog is back, and it's gonna get heated.  Maybe.  Maybe what I think of as heated is not what you think of as heated, because on a heating scale, my tendencies are lukewarm at best...but we'll see.

What the hell am I talking about.

Who knows.

So to get this revival started on the right foot,  I decided to leave y'all with an actual list  (not a cutesy, joking, sarcastic list) of things I believe have helped me become a semi-functioning cancer survivor who doesn't curl up in a ball in the corner of the room rocking back and forth reciting the steps to safely heparin lock an IV or bloodline:

10.  There is no fixed timeline for your life.  It doesn't all have to happen by such and such a point in your life.

9.  You have to find a decent balance between health and happiness.  You can worry your pretty little head day in and day out about preventing illness, having a perfect body, doing cleanses, keeping up with the latest cancer-causing products and avoiding them like the plague--but sometimes things happen that are just unpreventable and out of your control.  So go ahead.  You can have MacDonalds on a Monday.  Just don't have it Tuesday-Sunday.

8. You are never going to find someone who fully understands and comprehends the things you are going through.  When they try, take it easy on them.

7.  You are never going to be able to fully understand and comprehend the things that other people are going through.  You can try, but take it easy on them.

6.  "One day..." has to become today.  It just has to.

5.  You cannot be mean to yourself.  Whatever that means to you.  I don't care how nice and kind you are to other people, or how self-centered this sounds.  I thought for a long time that I hated who I was.  And then one day, I was contemplating death--as a cancer-survivor often does--and I realized that I would miss myself.  I would miss having my mind, thinking my thoughts, spewing my sarcasm, and just being Jesse Pardee.  I realized then that I like the person I am.  It was a really big moment for me.

That's why I go out by myself sometimes.  I'm a great date.  Which brings me to...

4.  Never be afraid of alone time.  You're not a loser.  You're not a hermit.  You're not weird.  It doesn't have to be a scary or sad thing.  Make it a therapeutic thing.  You have that power.
3.  Night time is not solve-all-your-problems time.  Shut the f*ck up, take an ativan, and go to bed.

2.  Look out the window once a day and take a mental picture of your surroundings.  Realize that your life is not something that exists only when you have achieved a certain dream, or become successful, or found love, money's right now.  It's you and that window in that setting in those surroundings.  Now.

1. Your family can become your very best friends.  Your very best friends can become your family.  Let them :)

Until next time...whenever that may be...