Thursday, April 4, 2013

Cold Reality

  I don't really know where to start...
I have had a very bad few weeks..   I found out on Monday after a cat scan that the chemo I have been hoping was working is unfortunately not.  The tumors have grown and my odds keep dropping. I'm still fighting and have started a different chemo regimen of Temozolomide, Irinotecan, and Vincristine.  It is two weeks long and after only 3 days so far I already feel horrible.  My body is weak,  I'm nauseous, and my throat and jaw hurt making it hard to swallow.  In the past few days I have become a lot less optimistic about any kind of future and am becoming a lot more realistic.  If this chemo doesn't work either, there are clinical trials, after that nothing..

  I hate that I've started noticing that my presence makes people uncomfortable and uneasy.  I get it.. I'm a perpetual bummer whether I like it or not.  I remind people of things that they don't want to think about.   I scare people.

  My days consist now of waking up, vomiting, getting in a car to Sloan, spending around  45 dollars a day in cab fare to and from Sloan.  Spending my day getting infused with poison inside a hospital.  I'm always in a hospital.  It's crazy to me now that most of my friends only have to go to a hospital once a year for a check up-  I cant imagine!!!  Once we get home I usually pass out from the fatigue.  It is very lonely.  Thank god, I have Kaylin who is suffering from the same drugs ( we have the same cancer, chemo drugs, and Doctor).  Its pretty crazy.  Everyone thinks we are sisters.   we sit and listen to kids with cancer srceaming with pain.  It is hard to hear.  Today we got our own room and brainstormed about ideas for a charity art show we want to put on while we were being infused.  We've come up with some really cool concepts and see it as our life's work.  It might be the last thing I have to show and its all I have now to focus on now.

  I'm sad that I'll most likely never be in love again or have a boyfriend.  This is really hard for me but who would voluntarily be a part of this world?  I'ver learned the hard way.   I will never accept death but I am so sick of living this way.  It is not a life.  I hate that I have become Cancer Girl to certain people and perhaps a story they can tell others about.. an oddity/ an untouchable.  Someone that Isn't taken seriously or like a normal person.  Its amazing to me how selfish people can be and after really letting them into my world they still don't get it.  Why would you waste someone's time that probably doesn't have a lot of it?  I have to remember that after all the kindness I've been shown from people there are good people and not so good out there.

  After my recurrence in January I started to realize that I will never have a long life.  It would be a miracle to see age 40.  It became clear to me around this time that I will never get married or have a kid which I had taken every precaution to preserve this right during my previous treatments.  Ewing's almost always comes back I've realized.  Now the farthest I can focus on is this summer.  I hope that death is a lot like being a asleep and it won't bother me like before you are born.  I feel the worst for my parents they never deserved this sadness.  I am really scared of the suffering that comes with dying from cancer.  I have seen it and it terrifies me.  It is slow, painful, and scary.

  Despite all of this sadness and suffering I am trying to find what happiness can be found.  I am going to Vegas with my cancer friends for a weekend at the end of April to shoot guns in the desert and take some aggression out.  Lately,  I have been fantasizing about smashing mailboxes out of a car window ...Never did that in High school.  We will also be attending this Stupid Cancer Event that one of my chemo bff's, Suleika, is speaking at and the NY Times wants to film our trip.  Why not?  I got nothing to lose.

Cancer buds, Kaylin Andres, and Suleika Jaouad
  I hope my friends understand that I'm too sick now too go out that much but would love for them to come over and just hangout.  It means the world to me and who knows how long we have left together.       Also I'm getting cable so that will be more fun for people. You wouldn't know it from my posts which i come to vent but I think I have still kept my sense of humor through all of this.  I do spend a lot of my time joking around when I can.  You have to find humor in everything.  I know this must be a very depressing post for people to read but remember this is actually my reality. I know it must be so unrelatable but I still can't even believe this is my life.  There's actually a split second when i wake up in the morning that I am "normal" am groggy and have forgotten.   I am my old self without these problems but then in one second it hits me like a brick.. oh yeah my life is fucked.  Other than that cancer is always on your mind.  I haven't given up all hope or I wouldn't be torturing myself with chemo.   I have just learned that hoping, wishing, and dreaming too much heartbreakingly hurts when they are crushed and I am just exhausted by this.  I'm not looking for pity, that's the last thing i want.  I just want people to be aware of what someone with cancer goes through.