just got back from new york a few hours ago. it is easy to say that this was probably the smartest decision we could have made. we met with dr. leonard wexler at Memorial Sloan Kettering Cancer Center in Manhattan. we unfortunately walked in with a bad impression of him, given by the head of cureASPS.org, who said his number one priority would be reasearch with little regard for my well being.

we were pleasantly surprised to find that he was the answer to all our prayers. he has the distinguished privilege of being a part of what is probably the number sarcoma treatment center in the country. therefore, unlike the doctors i've been seeing here, he is greatly in tune with the latest treatments and information. aside from that, he exuded the quality that i felt was so utterly lacking in anyone else i've talked to: he gives a shit. simple as that. the amount of preparation done in anticipation of our arrival was impressive to say the least. it seemed like a tidal wave of the most valuable information we could hear that had seemed to be avoiding us this entire time. seeing as my particular cancer is mainly prevalent in children, he deals mostly with very young patients. his compassion and caring overflows from his tiny consultation room, with toys scattered about and the walls plastered with pictures of children (i assume) he has treated. one thing in particular caught my eye: next to the door was a picture of ernie from sesame street torn out from a coloring book. written neatly across the top in red crayon was "to: dr. lenny."

in his no frills method of approach, he proceeded to tell us that most of what we have been told is slightly incorrect to totally wrong. the prognosis of 5-6 years that i had been given was described as "wildly optimistic", and that the treatment plan laid out by my oncologist in st. louis would be of no help except to make me sick as a dog and just as miserable. he instead told us of a new clinical trial being performed at Sloan Kettering and also MD Anderson in houston. the trial is for a new drug which shows great promise in treating exactly what i have: metastasized masses from alveolar soft part sarcoma. there was a seminar in london less than a month ago, in which the results of a first clinical trial were presented. 7 patients with various metastasis were given the new drug. ALL showed vast improvement, such as significant shrinkage or growth stoppage. the pictures of the before and after CAT scans were more than enough to convince us that this was the right course. my mom was prepared to sign me up and leave me right then and there.

i should begin the trial sometime next month. initially, i may have to be in new york for up to a month straight. then, depending on the results and how i react to the drug, it may be reduced to just one visit a month. thankfully my dad's airline benefits and my entire family being in brooklyn/queens/staten island will make all of this incredibly easier.

after so much bad news, bad info, and just plain bullshit, this was a refreshing breath of hope. finally something we can feel confident in, with significant evidence and research to back it up. finally we met someone who can help who's passion to see me live seems to be on par with mine. the days keep getting better and better.

yesterday there was a benefit show in my honor here in st. louis. it was a phenomenal experience. i was nearly overwhelmed by the entire thing. so many people doing so much for me. it was almost too much to handle. thankfully i managed to keep myself together all day. it was very special to see people i hadnt talked to in ages, but even more moving to see and talk to perfect strangers who cared enough to come out and help. it has me all the more excited for round two this wednesday. it'll be a great homecoming after i get back from my appointment in new york on tuesday.

alright, so i saw my oncologist earlier today. it was a big important meeting about what path i'll be taking as far as treatment goes.

we compared my CAT scan from late september to the one i just had yesterday. in addition to some of the nodules growing at a fairly steady rate, it appears that new ones have formed as well. two of which are quite large, one being almost an inch wide. thankfully they are not close to any major airways, which could eventually cause serious breathing problems. he once again gave his opinion that surgery would be of little benefit given the number of significantly larger nodules. we also posed to him the theory of lung transplant, but unfortunately with as advanced as the cancer was when first discovered, it is quite likely that it will simply show up again in my lungs or another vital organ. so as he had made clear to me earlier, i will probably be dealing with this in one form or another for the rest of my life.

so it seems the best avenue is to begin chemotherapy. i'll know for certain if this is what will happen after i see a doctor at the sloan-kettering cancer center in new york on tuesday. unless his opinion greatly differs from that of my oncologist here, i will get the ball rolling on chemo before the end of the year. financially its better, since i've obviously already met my deductible amount for this year and might as well get as much out of it as i can.

the chemo drugs recommended to me wont be too extreme, but there is the possibility of the usual side effects (nausea, fatigue, hair loss). yes, hair loss. yes, my beard. i'm not too siked about that one. but i guess i gotta suck it up.

obviously its not the best news in the world, but this puts my impatience at rest for the moment. probably the most frustrating thing for me personally is the seemingly crawling pace of this entire process. i really felt things were moving quite nicely in the beginning, especially around the time of my surgery. but since then its been a lot of waiting and bouncing from one doctor's office to another. but i can take some comfort in knowing almost certainly what exactly i have ahead of me in the near future.

not to mention i now know just what to tell all my amazing friends showing their overwhelming concern and compassion for me through all of this. its simply indescribable to hear from and about perfect strangers doing their part to help me through this. in such a dark moment as this, it would be easy to hold my head in my hands and cry "why me?" but i havent let myself do that yet. those two words (why me) would simply drive me crazy if it let them. but it is this tidal wave of support and love that has re-affirmed my once dying beliefs in karma and the good nature of people. i can not think of any point in my life where i deliberately tried to infringe on the happiness of someone else who did not TRULY deserve it. and i think that all the good i have done in the past is now coming back around for me at the time where i absolutely need it. i've never been the most optimistic person around, but i guess i was just saving all that positivity for right now.

if you can help....

sweet. another CAT scan next week. i puked my guts out after the first one. they make you drink this bottle of barium sulfate suspension, and youre not allowed to eat or drink several hours before your scan, and can not eat or drink after the yummy barium sulfate. which is bad news for me. if i dont eat immediately when i need to, i get bad headaches, nausea, and basically shut down.

but at least i get to see the main oncologist who is kind of running the show and calling the shots for me next week as well. got lots of stuff to talk about with this guy.

i'm fortunate to say that i've been doing a hell of a job keeping my chin up through all of this. but this is certainly not getting any easier. as i said in an earlier post, there were possible troubles ahead with my insurance. turns out that i now have to pay an insurance premium thats over twice of what it previously was, becuase i'm unfortunately not a robot, and was unable to keep an average of 30 hours a week at work while seeing almost a half dozen doctors and then having surgery on my leg, which i still have not fully recovered from. i guess thats health care in america these days. "congratulations, you are eligible to pay for health care benefits. just dont get too sick or we'll make you pay a whole lot more, or just drop you like a bad habit."

i have to admit, i hadnt shed a single tear until last week. when i heard the news about this insurance scheme, i was furious. i called my mom to make her aware of what was going on. in the course of our conversation, she mentioned that one of my grandmothers is so upset by this whole situation that she cant bring herself to even speak of it. i began to choke up, but held back since i was at work at the time. my dear friend scott read my blog post on myspace about the whole situation, and told me i could drink on his dime that night. naturally, i took him up on his offer and got plastered. a healthy combonation of whiskey and good friends took me away from all the frustrations i was feeling. driving back from the bar, i remember babbeling about all of this to my girlfriend. i'm not sure what set me off (i believe it was mentioning my grandmother), but all of a sudden the waterworks kicked on in full effect. it was a culmonation of the weight i've been bearing since being diagnosed coupled with realizing how many people cared for me so deeply. it was the first time in years i had cried, and it was one of the most cathartic experiences of my life. it was a beautiful thing, to know that depsite whatever i may be facing, i have great and loyal friends who can take me away from any pain i may be suffering and put a smile on my face.

ever since that night, i can feel myself getting a little verclemped when i think about all the things that the people around me are doing. the people and bands involved in my benefit shows is a great example. i have a terrible feeling that i'll be sobbing like a baby when those shows come around. but its alright. aside from my drunken epiphany, i really cant think of any other instances in my life when i shed tears of joy. its a powerful and beautiful thing that i can not say i am ashamed of.

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.