Saturday, February 7, 2009

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.)

Friday, January 9, 2009

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.

Saturday, January 3, 2009

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.

Tuesday, December 16, 2008

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, 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.

Sunday, December 14, 2008

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.

Thursday, December 11, 2008

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.

Saturday, December 6, 2008