sorry again to anyone waiting patiently for an update. my internet access has be limited as of late.

i flew into new york on january 12. had an appointment on january 13 and was accepted into the study. been bouncing all over new jersey and new york crashing with family. its been great seeing alot of people i havent seen in a long time and dont get to see very often anymore.

aside from the study drug, they prescribed me medicaton for my thyroid and to manage my blood pressure, which is fairly elevated by the study drug. i also monitor my blood pressure a few times a day with a meter i bought at a pharmacy. other than that, side effects are very mild. if i take it on an empty stomach, it completely knocks me out for about two hours.

we've had a great time while we've been here. seen pretty much everything there is to see in manhattan. ate some amazing food, which is what i will miss most in st. louis! also went to a few shows, one of which was a HUGE benefit show featuring bands that will probably never play st. louis again (if they ever have.) as much fun as it has been here, i can not wait to get home and see my friends. the past week or so has been rough. i've been hit with a serious case of "home sick."

although i'll be right back in new york by february 23 for new CT scans to measure my progress. then february 27 i meet with the doctor running the study to discuss how i'm doing and what direction i'll be taking. its a double blind type study, so if the conditions are right i might end up taking a placebo for a few weeks after that. but after that, as long as its benefiting me, i'll be allowed to take the study drug again.

needless to say, with all of this coming up, sleeping gets harder and harder every night (even with the ambien i take every night.)

so we are FINALLY coming down to the wire! i fly to new york on monday with my new test results to talk to the doctor running the study on tuesday. and if all goes well i begin testing on friday! i'll be up there for 3 or 4 weeks. every friday i'll be at sloan kettering for 8 hours to be tested and whatnot. well worth it, no doubt. my mom told me about a blog she found of a man participating in this same study. for him, just like everyone else, the results are nothing short of miraculous! i am absolutely the luckiest guy on earth. this will truly be the world's next miracle drug. needless to say, my family and friends are ecstatic about all this. its a relief for me as well, but doesnt make it any easier to sleep. but at least now its because i have something to look forward to, not tossing and turning in doubt and uncertainty. not to mention i get to hang out in new york for 3 or 4 weeks with my family and my ultra-wonderful girlfriend! best city in the world, best people in the world. cant beat that.

sorry to anyone eagerly awaiting an update. i've been fairly busy/lazy these days. i've also been pretty frustrated and kind of down in the dumps lately as well. i guess it was just so much easier to keep my chin up with so much activity going on earlier in this ordeal. but as of late its been (surprise) a bunch of waiting and phone tag and bullshit. the doctor running the trial at sloan kettering wants me to have a scan of my brain to check for growths there, and also an echocardiogram to see how my heart is doing. a scan of my brain is something my parents and i have been pushing for almost since the get go, but doctors here deemed it unnecessary. apparently dr. adkins here in st. louis doesnt like to work too hard. we tried going through his office to get these tests ordered, but attempts from my parents AND dr. wexler in new york to reach him for the past two or three weeks have been fruitless. i recently visited my primary care physician, dr. rana, earlier this week because i've been having an unusually hard time sleeping as of late. thankfully she is on my side, and ordered both an MRI for my brain and an echocardiogram right there on the spot. the MRI i had done yesterday. i'll have the results in my hands wednesday morning when i go back to have my ECG. i literally owe this woman (dr. rana) my life. she cared enough to treat the initial x-ray of my lungs with the seriousness it deserved. and since day one she has been THE most helpful person. anything i need, it is done. no bullshit.

and as i hinted to earlier, all of this has been taking a great toll on me mentally. obviously the support came pouring in at the beginning of this, and perhaps i disillusioned myself into believing this would be a piece of cake. but the past couple of weeks have been very hard. as i said before, i went to my doctor because sleep was becoming a luxury to me. she offered me anti-depressants to help ease my mood and perhaps make sleep easier. but these would take about six weeks to kick in, and by then i HOPE to be in this study, and i'm certain that i will be unable to take any other medications. so she gave me ambien, which is working well. but for the rest of the day, i'm usually a wreck of nerves. anxiety is ravaging me physically and mentally. the ambien allows me to fall asleep quickly, but then getting out of bed the next day is a whole different story. my appetite (while always healthy, to put it lightly) has been out of control lately. to put it bluntly, i feel like i am losing control. i feel like my grip on life is slipping. there is also a sense of despair and helplessness from certain people's lack of interest or willingness to help or just plain do their fucking jobs. and yes, i'm pretty much exclusively talking about dr. adkins. this strikes an old nerve of dealing with people that seem to have no passion about me or my well being. this all compounds my discontent of and growing impatience to get out of the mid-west for a few weeks. i'll have to live in new york for three or four weeks for the initial phase of the trial. which will be great. all my family, my wonderful girlfriend, and the best city on the planet. i cant wait.

i've always been a pretty impatient person. when i want something, i want it now. and now more-so than ever, i want my health, i want my life, and i want to live.