Friday, November 28, 2008

where it all began

so on the advice of a friend, i've moved from simply posting occasionally on my myspace blog to a more public and (hopefully on my part) more frequently updated narrative of what i'm dealing with in living with a rare life threatening illness. i'll write a quick rundown of how all of this came to be:

about seven weeks ago i was diagnosed with a form of cancer called alveolar soft part sarcoma. it is very rare, aggressive, and difficult to treat. generally speaking, my best prognosis is about 5-6 years. on november 4, i had a tumor about the size of an orange removed from my upper right thigh. the surgery was a great success, but unfortunately this had gone unnoticed and untreated for so long that it has spread to my lungs. i have what are called pulmonary nodules spread throughout both my lungs. aside from about six weeks of radiation treatment on my leg, i also have to look forward to surgery on both my lungs, and eventually very intensive chemotherapy as well.

despite all of this, i am extremely blessed to have an incredible support system of family and friends behind me. i draw a great deal of strength from their compassion, understanding, and love. i truely would not stand a chance without them.

from myspace, nov. 24

i'm so fucking sick of fighting this world for everything i have, want, or need. everyday is a new uphill battle. the past few years have been fucking hell on earth. it never ends, one thing after another. now i'm 25, literally fighting for my life, forced to face and deal with my own mortality, and (big surprise) my insurance company is trying to fuck me out of coverage. what the fuck do i have to do to catch a break? the lawyer that my mom works for says that what they are trying to do to me is illegal, so now i might have the fight these assholes in court to get ANYTHING.

i'm this fucking close to waging war on all the trustfund babies and all the fucking spoiled brats that i see every fucking day. they have EVERYTHING they could want, never have to break a sweat, but still manage to find the most trivial, insignifigant bullshit to complain about. i say we give them something to really complain about. trash their SUV's and their fucking BMW's, smash their ugly over tanned faces with bricks. if they cant be grateful for what has wrongfully been handed to them, lets fucking take it from them. cause i'm sick of living my life the best i can, trying to be a decent human being, and watching fucking scumbags live it up on easy street.

i want to burn this fucking world to the ground.

from myspace, nov. 12

with everything going on in my life these days, i've been doing some pretty deep thinking about pretty much everything. i've really put the world into perspective, and reaffirmed the way i want to live my life. and that is to do whatever i want to do to be happy. that is the ONLY thing that matters. making every second worth while. fuck money, fuck posessions, fuck all that bullshit that you cant take with you when your time is up.

a big question i've carried with me for about 7 years now is "was dropping out of college the right thing to do?" and i finally know that it was ABSOLUTELY correct. because its not what i wanted to do. and it would have restricted me from doing so much in my life. i'd probably be stuck with some shitty 40 hour a week job in front of a computer all fucking day hating every second and every douchebag i work with. forget touring with a band, traveling, getting out and seeing the world and living free.

untimately what i want to say to everyone is this: you've heard it a million times from a million different people, but now I am telling you: life is WAY too short, and you NEVER know what may happen tomorrow. so be happy. every single day. if you are not happy, change it NOW! because one day you will regret every wasted moment of doing what you "should" be doing. doing what other people tell you is right for you. putting things off for tomorrow, next week, next month, next year. do it now! live a life worth living, have no regrets, have fun, make your life worth while.

from myspace, posted oct. 30

update oct. 30

alrighty, finally got some good news for ya'lls! i'm scheduled to have surgery on tuesday morning to remove the tumor from my leg. i'll be on crutches for about two weeks after that, and when i'm healed up and healthy enough i'll start radiation therapy. not sure how long that will take or how intensive it will be. and the two (count 'em, two!) benefit shows going down in st. louis in december are coming together. stay tuned for updates on all that jazz.

now some not-so-good news. after surgery and treatment, i wont exactly be out of the woods. i still have a whole mess of pulmonary nodules on my lungs that are slowly but surely growing. my doctors will keep a close eye on their progress, and eventually down the line i will have to undergo some serious chemotherapy to treat them. i'll be talking to my doctors soon to see if a lung transplant is a viable option when the time comes. to put it blunty, it is incureable and i will have this for as long as i am alive. the prognosis is bleak, but i'm ready to (literaly) fight for my life. and believe me, all your love and support has helped more than words can say, so keep it coming!

from myspace, posted oct. 15

so i just saw an oncologist yesterday, and this is what he had to tell me.


turns out i have one of the rarest forms of cancer around. i should be starting treatment in the next day or two. if i stay here, it will be a collaborative effort between the childrens hospital and the siteman cancer center, since my form of cancer is mostly associated with young children. i'll more or less be a guinea pig to see how to treat this in an adult.

so since this is so rare, they kind of dont really know exactly how to treat it. but it will definitely include surgery, chemo, and radiation. and there is a very outside chance i might have to go to new york for treatment at an even more advanced cancer center there.

and unfortunately, it is life threatening and it is in quite an advanced state.

so yeah... thats the deal. but i'm in good spirits. i certainly dont feel like i'm dying, so refuse to believe what they tell me about all that. i'll post bulletins and stuff with updates as much as i can. obviously, treatment will be very intensive, and it will last several months. so i'll do what i can.

so thanks for all your concern and support. the only thing that will get me through this is family and friends.