Hi everyone! Happy Easter to all!
I hope all your Easter dreams came true and stuff. Maybe you colored eggs for no apparent reason. Never really understood the fascination with coloring eggs. Or hiding them. Or eggs and Easter in general. I'm not religious but I can't imagine Jesus had eggs when he came back. He probably had a lot of stuff to do, and if he was gonna eat anything why would it be brightly colored eggs. I dunno why.
But I digress.
This weekend my boyfriend and I packed up the car at 7 am Saturday morning and trekked to Syracuse for Easter with my family and it was a loverrrly time. I don't know why but for some reason, the first thing I like to do when I come home is take a shower. There's something about taking a shower in your own home that is just sooooo comforting and I smelled like shit anyways. So that's what I did. And I'm sure you're like...ohhhkay thanks for sharing, it's really comforting that you're clean.
But I found myself in a bit of a dilemma as I was getting all primped and refreshed afterward. Ever since chemo, I've had a very keen sense of smell, and for that reason, I have a wide array of perfumes at my house...in Pittsburgh. I really don't like not having perfume on, because even my own scent can sometimes be overwhelming (even with deodorant on). Not that I smell bad but you know...I just like to smell good.
But there was only one bottle of perfume at my house in Syracuse, and there's a reason that this particular bottle stays at my house in Syracuse. The perfume is called Carnival by Paris Hilton. It's a really beautiful scent. I thought so ever since I received it. For my 18th birthday. In the hospital on 7H.
I liked it so much, that one day when I went in for a treatment, I sprayed my entire cubby with it.
My roommate that day was a girl named Robin, who had leukemia. I asked Robin if she would mind if I sprayed the bathroom with the perfume, because I would feel better about using the disgusting hospital bathroom if I knew it smelled okay. Robin didn't mind.
Robin didn't mind a lot of things. She didn't mind--err, well, I'm sure inside she did mind, but never let on--the fact that her cancer required a treatment that kept her in the hospital for months at a time. In fact, if I remember correctly, Robin was diagnosed in the beginning of March 2009, and this particular occasion was late April, and Robin had not yet been home from the hospital since initial admittance. We had been roommates before. I remember I was on the floor getting platelets one Saturday when they told me another seventeen year old had been diagnosed. The following day, I went out to Target and bought her a Caboodles case and filled it with make-up, explaining to her that in my first weeks of treatment, I felt like absolute shit--what with the hair gone, including the fine hairs on my face (which, without those hairs, one looks like a dried out fruit), all of my skin dry, my body bruising with the slightest nudge and the all-too-true fact that when you feel like shit, you don't really shower as much as you should. My note to her said I'd included some lotions, eye makeup, lip gloss, nail polish, and other beauty supplies to help her still feel like a seventeen year old girl, and not a sickly fixture of the pediatric oncology ward. I actually think my gesture helped me more than it helped her. For me, it was an acknowledgement that I was adjusting, that I was getting through, and that I could show others the way. Haha "the way." I'm like a cancer prophet.
So on this particular occasion, Robin and I were already well acquainted, and with her blessing, I drenched the bathroom in Carnival. DRENCHED. Everythinggggg smelled like Carnival. Paris Hilton would've been proud. Proud or disgusted. I dunno. To be honest I don't really care what she thinks since she can't get out of car without a crotch-shot being taken.
It was springtime, and Robin was allowed to go outside to the courtyard and get fresh air, which she did every chance she got. She and her boyfriend would wait until whatever medication or chemo she was getting was done dripping, call a nurse to disconnect her from the medicine-pole (or as I lovingly nicknamed, stripper-pole), and go outside to streak the sidewalks in chalk, and watch the stoplights. She'd be out there for hours at a time. Her mother took power-walks around the block, and would bring us pizza from Varsity on the SU hill, and always asked what she could pick up from CVS for me (this particular week, my chemo-craving was Pringles).
There's no real end or shape to this story. It's really just a memory, but a vivid one, that I constantly have connected with the scent of Carnival by Paris Hilton. I haven't been able to wear the perfume since, because I immediately think of Robin.
Which totally wouldn't be a problem if life wasn't unfair.
Robin, as I told you, was in the hospital for long periods of time, but her prognosis was a generally good one, or so I'd been told. It was just going to be a long road for her. But she dealt with it like a champ. One day, while I was in the hospital for a low-grade fever, Spybabies dress shop brought in several prom dresses for Robin to sort through and try on. Robin hung them from the curtain-rods on our windows. She wanted badly to be out of the hospital for prom, but it wasn't a possibility for her. She took it all in stride, though, and on prom night, got dressed up in the dress she'd chosen, and met her boyfriend at the top of the big staircase in the lobby of the hospital, and they took pictures. She rode her medicine pole up and down the ward like a scooter for entertainment, sat with the nurses til the early hours of the morning, and watched movies in the cubby across from me. The road was hard, but they were confident she'd make it.
And she didn't.
Maybe things with Robin weren't as promising as I'd realized. But the way I saw it, Robin and I both had cancers with a relatively good prognosis, and yet here I am. And where is she?
Where had she been?
Not to the prom. Not to the movies on the weekends. Not to the school assemblies, not to the mall, not to the parties, not to the final exams. Not here anymore.
All of those "Nots"...
I smell those "Nots" when I spray Carnival by Paris Hilton. All of them. I smell the "Nots", and I smell the prom dresses hanging in the window of our room, and I smell the chalk on the sidewalk at the hospital, and I smell the Varsity pizza and the pringles and the chemo and the Caboodles kit full of make-up and the bag of platelets I received when I first heard about Robin...
But this weekend, when I found myself confronted by the bottle of perfume, I sprayed it. On my wrists, on my neck, and then I held the bottle to my nose. Took a big ole whiff. Smelled all those things. And then it occurred to me: I was always the person who could smell the "Nots". The negatives, the bad parts. And Robin...well...if Robin came floating down to Earth and I sprayed Carnival by Paris Hilton, she wouldn't smell the "Nots."
She would smell Carnival by Paris Hilton. Because it is what it is...
Does it make sense? I don't know. But when I closed my eyes and remembered her...I realized that Robin and her sunny demeanor, and her medicine-pole-scootering, and her deal-with-it-as-it-comes attitude is something I want to be reminded of. Always.
I just might wear Carnival everyday.
Sunday, March 31, 2013
Monday, March 25, 2013
Will.i.am and JESSE BITCH!
The title of this post literally has nothing to do with anything whatsoever.
It's my friggin 22nd birthday. Can I get what what?
Yay! I made it to 22! Oh, happy, happy day bitches! Yes, yes, today, the 25th of March is the day I was born in Syracuse, NY to two parents, neither one with a history of bone cancer and yet there you have it.
---->REGARDLESS. I was a special kid. By all definitions of the word 'special.'
Naturally, I've been thinking a lot about Darwin (as one often does on their birthday), and his little theory about "survival of the fittest" or whatever that shit was. And I realized, that if we all lived in the wilderness and were monkeys or apes or what have you (like...we didn't have modern medicine and shit is what I'm trying to say), I would be dead.
And it's a funny phenomenon to think, on your birthday, that in survival-of-the-fittest-terms, you shouldn't be here...and yet you are! And it's like...this overwhelming sense of trickery. I tricked nature. I tricked the universe. It tried to pick me off, and yet here I am, turning 22, walking the streets of Pittsburgh with a plastic crown on my head eating Cadbury eggs!
Now, as I write this post, I think, "you stupid bitch, you're going to walk outside and get hit by car just for saying all of that"...and what if I did?
SO. In honor of my 22nd birthday, here are 22 significant things I would hope people remember about me if I walk outside and get hit by a Point Park shuttle.
Ahem. Here we go.
1) She had the best armpits, and everyone told her so. She'd smile modestly and say "it's the Old Spice."
2) She could smell bad breath, McDonalds, or a fart a mile away. Best sense of smell I ever encountered in a gal.
3) She wrote in her blog that she'd stop licking the salt off the bottom of the plate, but alas, she never did. She was the saltiest old bitch that you ever did see.
4) She, as a seventeen year old girl, managed to acquire a cancer that typically effects thirteen year old boys. What a wonder she was...
5) She hated the sound of children screaming in Target so much that she'd stop frozen in the aisle until it stopped.
6) She predicted that Charlie and Marnie on Girls would be in love forever and get back together, and by god, she was right.
7) Oh, boy, did she love Charlie from Girls and despise him for being a fictional character.
8) She endorsed chemo as the best acne medicine, and no one can argue that it did wonders for her complexion even if it did wreak havoc on her kidneys and destroy her soul.
9) Jesse had the best sunglasses/frameless glasses collection of anyone who ever lived, and she didn't give a shit if they took up half her face.
10) She hated Harry Potter, and I think there's something to be said about that.
11) She could punch a mean hole in the door if need be.
12) Jesse had the best advice for constipation always.
13) Jesse loved a good poop joke, and is probably laughing in heaven with the poop gods.
14) She never answered her texts because for THE LOVE OF GOD I'M DOING SOMETHING MORE IMPORTANT.
15) She never quite learned to use her iPhone, and it was one of her best qualities.
16) That bitch had short hair one day, then long hair the next, then short, then long, and then goddamnit one day she just cut it all off.
17) She knew an extensive amount about serial killers to the point where it was kind of scary because she fell asleep to BIO specials on Ed Gein.
18) She never got over her initial attraction to the cartoon Peter Pan.
19) Jesse could narrate the thoughts of the dogs and cats with impeccable insight.
20) She could perform Moritz Stiefel's pre-suicide monologue on cue.
21) She owned every decision and action she made.
22) Jesse was a disgruntled little beyotch with a twisted sense of humor.
"So, what will I say? I'll tell them all, the angels, 'I got drunk in the snow! And sang...and played pirates.' I'll tell them, 'I'm ready now!' I'll be an angel." <-----BUT NOT YET BITCHES, I'M LIKE A COCKROACH, I WON'T DIEEEEEEEEEEEEEE
----Moritz Stiefel (except for that last part)
Love,
Jesse, age 22
Saturday, March 16, 2013
I'm Back and Disgruntled-er
HI.
For real though, I'm back now. Chess is over, and I've had a week to readjust to the typical daily college life: wake up, class, maybe I sit on the bike in the gym and reluctantly move my legs, more class, Jodi Arias trial (crazy bitch, right?), sleep, and food sprinkled in somewhere. I dunno. You get the drift.
But I decided that during the weeks I am wayyyy too preoccupied with school to do this blog, so posting will now be sometime from Friday-Sunday. I mean it though. I know I've pussed out before, but I'm really gonna post each weekend and try to think of things to say about shit.
Omg I just got distracted for a few minutes because Jason DeRulo "Mmmm Whatcha Say" came on the radio, and then I had to go watch the SNL short Dear Sister. Go watch it.
I don't really have a specific topic in mind this week. I realized the other day that as I get further and further away from that disastrous year of my life, I become more and more disconnected with it. It's possibly one of the reasons I didn't make more of an effort to post in here while I was busy. Once you get in the habit of blocking that shit out, you don't really want to write about it. I get going and get busy and start to feel like a normal person again, and cancer continues to make less and less appearances in my daily thought-process.
Which is a good thing and a bad thing.
It's good because I'm not letting it drag me down and shit, and I'm becoming more and more adjusted to life without monthly doctor-monitoring.
It's bad because it's a part of who I am, and is still a big aspect of my life that other people associate with me. It's part of the reason why I stayed in my room with a book during my first two years of college. People don't connect with me very well, and I realize it's because they don't know what to say. I always preach in this blog about how people say stupid things to me all the time about cancer and death and stuff like that, and what I don't do a very good job of is trying to be understanding of how it feels to be my friend, acquaintance, what have you...because in this blog I'm always like RAH RAH RAH I'm a cancer survivor, hear me roar, tremble at the thought of my giant tumor!
Ha. Anyway.
My very best friend is going through a health crisis not quite of a 'life-and-death' nature, but scary and upsetting nonetheless, and she often tells me that she doesn't want to be weak in front of me. She sees what I've had to deal with, and tries not to complain about her struggles in front of me. This is a common problem I have with people.
I've come to the understanding, over these few years since cancer, that it is completely unfair of me to compare other people's problems to my own. Easier said than done...
Now hold on because I'm actually going to quote a book and shit and it's gonna get rulllll deep up in here but maybe a little off topic but who cares end of run on sentence.
I was reading a book by Aimee Bender, who's become one of my new favorite authors, called The Particular Sadness of Lemon Cake. And I came across a quote that summed up this abstract jealousy I had of other people when I was sick:
"It can feel so lonely, to see strangers out in the day, shopping, on a day that is not a good one. On this one: the day I returned from the emergency room after having a fit about wanting to remove my mouth. Not an easy day to look at people in their vivid clothes, in their shining hair, pointing and smiling at colorful woven sweaters.
I wanted to erase them all. But I also wanted to be them all, and I could not erase them and want to be them at the same time."
When you're very sick, you view everyone in the "outside world" as perfect. You see people going about their daily routines and think how lucky they must be--whatever their lives may contain--to not be where you are. You'd give anything to be among them.
So when I first re-entered the "real world", I was finally going to "be among them". I had this mentality that because I was no longer in treatment, because I was "normal" again, that all other problems would be easily fixable. And I was wrong. I started having "normal people" problems again...and often found myself unable to keep them in perspective with what I went through. People go through terrible periods of their life, and what might not seem so terrible to the "cancer survivor/patient," is life-changing and heart-breaking to someone else. It's taken me some time to understand that. But I think I'm becoming better at it.
It's hard for me not to compare people's problems with my battle sometimes. I won't lie. But I try, and believe it or not, really do understand deep down.
If you take anything from this post that has been really all over the place, let it be this: I understand that not everyone has problems as serious as cancer. I will not judge you, condemn you, or shame you for struggling with your own problems. You can tell me about them. I'll listen. Because while they might not seem as crucial to me, I can relate to feeling trapped by a shitty situation. Suffering is the human condition after all. Ghandi or Buddha or Lil Wayne said that shit I think.
I don't know if this post makes me seem more approachable. For the majority of these recovery years, I've kept most people at arms length, and really sheltered myself under the idea that no one will ever understand me. But I'm at the stage in my recovery process where I'm ready to make more connections with people, and ready to be a more understanding person.
That being said, try to keep all your really trivial shit in perspective, because I'm not afraid to give you a reality slap. I said I'd be more understanding. I didn't say I'd be any less disgruntled.
With that, Kelly Clarkson has come on the radio, and alas, I must go turn it off.
Jesse
For real though, I'm back now. Chess is over, and I've had a week to readjust to the typical daily college life: wake up, class, maybe I sit on the bike in the gym and reluctantly move my legs, more class, Jodi Arias trial (crazy bitch, right?), sleep, and food sprinkled in somewhere. I dunno. You get the drift.
But I decided that during the weeks I am wayyyy too preoccupied with school to do this blog, so posting will now be sometime from Friday-Sunday. I mean it though. I know I've pussed out before, but I'm really gonna post each weekend and try to think of things to say about shit.
Omg I just got distracted for a few minutes because Jason DeRulo "Mmmm Whatcha Say" came on the radio, and then I had to go watch the SNL short Dear Sister. Go watch it.
I don't really have a specific topic in mind this week. I realized the other day that as I get further and further away from that disastrous year of my life, I become more and more disconnected with it. It's possibly one of the reasons I didn't make more of an effort to post in here while I was busy. Once you get in the habit of blocking that shit out, you don't really want to write about it. I get going and get busy and start to feel like a normal person again, and cancer continues to make less and less appearances in my daily thought-process.
Which is a good thing and a bad thing.
It's good because I'm not letting it drag me down and shit, and I'm becoming more and more adjusted to life without monthly doctor-monitoring.
It's bad because it's a part of who I am, and is still a big aspect of my life that other people associate with me. It's part of the reason why I stayed in my room with a book during my first two years of college. People don't connect with me very well, and I realize it's because they don't know what to say. I always preach in this blog about how people say stupid things to me all the time about cancer and death and stuff like that, and what I don't do a very good job of is trying to be understanding of how it feels to be my friend, acquaintance, what have you...because in this blog I'm always like RAH RAH RAH I'm a cancer survivor, hear me roar, tremble at the thought of my giant tumor!
Ha. Anyway.
My very best friend is going through a health crisis not quite of a 'life-and-death' nature, but scary and upsetting nonetheless, and she often tells me that she doesn't want to be weak in front of me. She sees what I've had to deal with, and tries not to complain about her struggles in front of me. This is a common problem I have with people.
I've come to the understanding, over these few years since cancer, that it is completely unfair of me to compare other people's problems to my own. Easier said than done...
Now hold on because I'm actually going to quote a book and shit and it's gonna get rulllll deep up in here but maybe a little off topic but who cares end of run on sentence.
I was reading a book by Aimee Bender, who's become one of my new favorite authors, called The Particular Sadness of Lemon Cake. And I came across a quote that summed up this abstract jealousy I had of other people when I was sick:
"It can feel so lonely, to see strangers out in the day, shopping, on a day that is not a good one. On this one: the day I returned from the emergency room after having a fit about wanting to remove my mouth. Not an easy day to look at people in their vivid clothes, in their shining hair, pointing and smiling at colorful woven sweaters.
I wanted to erase them all. But I also wanted to be them all, and I could not erase them and want to be them at the same time."
When you're very sick, you view everyone in the "outside world" as perfect. You see people going about their daily routines and think how lucky they must be--whatever their lives may contain--to not be where you are. You'd give anything to be among them.
So when I first re-entered the "real world", I was finally going to "be among them". I had this mentality that because I was no longer in treatment, because I was "normal" again, that all other problems would be easily fixable. And I was wrong. I started having "normal people" problems again...and often found myself unable to keep them in perspective with what I went through. People go through terrible periods of their life, and what might not seem so terrible to the "cancer survivor/patient," is life-changing and heart-breaking to someone else. It's taken me some time to understand that. But I think I'm becoming better at it.
It's hard for me not to compare people's problems with my battle sometimes. I won't lie. But I try, and believe it or not, really do understand deep down.
If you take anything from this post that has been really all over the place, let it be this: I understand that not everyone has problems as serious as cancer. I will not judge you, condemn you, or shame you for struggling with your own problems. You can tell me about them. I'll listen. Because while they might not seem as crucial to me, I can relate to feeling trapped by a shitty situation. Suffering is the human condition after all. Ghandi or Buddha or Lil Wayne said that shit I think.
I don't know if this post makes me seem more approachable. For the majority of these recovery years, I've kept most people at arms length, and really sheltered myself under the idea that no one will ever understand me. But I'm at the stage in my recovery process where I'm ready to make more connections with people, and ready to be a more understanding person.
That being said, try to keep all your really trivial shit in perspective, because I'm not afraid to give you a reality slap. I said I'd be more understanding. I didn't say I'd be any less disgruntled.
With that, Kelly Clarkson has come on the radio, and alas, I must go turn it off.
Jesse
Vindication
Hello, peeps. I'm sorry it's been so long. It has been a whirlwind few weeks with tech for Chess and then opening Chess! But I finally have a mini-hiatus from the Chess world, and was able to do something I've been planning since November.
Yes. The stringy mess that grew back on my head is gone, and let me tell you it feels amazing. I always tell people not to cut their hair because they'll regret it...but in my case, I didn't know what else to do. I've been waiting since November 2nd, 2009 (the day after I finished chemo) for my thick brown hair to come back past my shoulders...and it just never did. I've spent the last four years of my life hating my hair for not growing out, and blaming my dissatisfaction with my appearance on cancer.
It wasn't until last year, when I went to speak to a psychologist who is known for working with cancer survivors that I really knew what I needed to do. I already blame enough on my cancer. She pointed out that if I made a hair decision of my own accord, then I would have one less thing that I could blame on cancer. And it took me a year to get up the courage to do it.
I had been planning on doing it before I was cast in Chess, but then had to wait. Even when they told me I'd be wigged, I was hesitant to cut my hair until after the show opened, just in case they changed their minds last minute.But they didn't...and here I am.
And it feels really good. I watched the stringy, shitty hair tumble down to the floor today, and for a second, it reminded me of the day my dad shaved my head at the hospital. But it only for a second...because today was my decision. I no longer can say that my hair is short and gross because of the chemo. It's short and beautiful because I chose it for myself.
Choices are few and far between when you have cancer. And even afterward...you can choose not to check in with the oncologist and the kidney specialist, but you also risk a sneak attack relapse, or undetected kidney failure. You can choose not to take the antidepressants and anti-anxiety meds, but you risk dealing with the flashbacks and fear.
But today I made a choice for myself...and I feel vindicated.
Love to all,
Jesse
I took back control of my appearance.
Yes. The stringy mess that grew back on my head is gone, and let me tell you it feels amazing. I always tell people not to cut their hair because they'll regret it...but in my case, I didn't know what else to do. I've been waiting since November 2nd, 2009 (the day after I finished chemo) for my thick brown hair to come back past my shoulders...and it just never did. I've spent the last four years of my life hating my hair for not growing out, and blaming my dissatisfaction with my appearance on cancer.
It wasn't until last year, when I went to speak to a psychologist who is known for working with cancer survivors that I really knew what I needed to do. I already blame enough on my cancer. She pointed out that if I made a hair decision of my own accord, then I would have one less thing that I could blame on cancer. And it took me a year to get up the courage to do it.
I had been planning on doing it before I was cast in Chess, but then had to wait. Even when they told me I'd be wigged, I was hesitant to cut my hair until after the show opened, just in case they changed their minds last minute.But they didn't...and here I am.
And it feels really good. I watched the stringy, shitty hair tumble down to the floor today, and for a second, it reminded me of the day my dad shaved my head at the hospital. But it only for a second...because today was my decision. I no longer can say that my hair is short and gross because of the chemo. It's short and beautiful because I chose it for myself.
Choices are few and far between when you have cancer. And even afterward...you can choose not to check in with the oncologist and the kidney specialist, but you also risk a sneak attack relapse, or undetected kidney failure. You can choose not to take the antidepressants and anti-anxiety meds, but you risk dealing with the flashbacks and fear.
But today I made a choice for myself...and I feel vindicated.
Love to all,
Jesse
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