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…

Well.

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.

WELL GUESS WHAT MOTHERF***ERS!!!!!!!!!!!!!!!!!!!!!!!  YOU CAN'T KILL ME OFF I'M LIKE A COCKROACH.

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.  

Now STOP.

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.

...

Aha.

www.unfamouslyjesse.tumblr.com

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 etc...it'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...















Jesse

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


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!!!  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.  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.  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:
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.