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.

"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!??????????????????

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.

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:

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