okay....here's the scoop....finally.

after some of you read this, i hope you will be able to understand just a little why i have not been able to write or talk to most of you. i truly have been having the hardest time with this recovery, no bullshit. i will go over what else i have been dealing with since the last posts about my injured piriformis muscle.

also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so, enough about that...i am not going to say any more about it except to state that i hope that the person that left the comment has since removed the link to my blog and does not continue to delude themselves that they are a caring person because they think they feel empathy for my pain.
In case some of you are wondering what comment i am referring to, it is in the comments section (anonymous comment #2) of the April 19th post "speedbump within the speedbump ... :(."

okay, on to other news....

percocet used to be my friend...then it started to make me sick. i could barely eat, it made me nauseous just to think of food...i was dehydrated cuz i could barely keep anything down. over a weeks time, i got my percocet dose down to 2.5 pills a day, then i went off it completely. i felt like i was detoxing off of meth or something. it was horrible. i was sick as a dog for 4 days....felt like johnny cash in "walk the line". couldn't move from one room to the next without running for the bathroom to dry heave.

after i made it through those 2 weeks of hell and was completely off of the percocet, i was finally able to start trying to eat normal food again...it was very hard and i had to force it down. one night my stomach ballooned up and we called the dr. the next day. Because of the timing, the nurse thought it was gas issues because the percocet had messed up my system. so, they told me what to eat and what not to eat...also to try to add probiotics back into my system to help my stomach learn to digest again....this went on for another week. my belly looked like i was 4 or 5 months pregnant and it was extremely painful. i was scheduled for a ct scan on May 12th and a follow up appointment on May 13th with dr doom to discuss next steps. well, when they scanned me, they told me that i had a bunch of fluid in my belly and it wasn't gastrointestinal problems at all. they called dr. doom and wanted to do a paracentesis right away to get the fluid down. i was not at my usual ct scan place cuz they were all booked, so i was at mercy instead of main or the other option i use sometimes. the dr at mercy started to drain the fluid and there was blood in it so he stopped and called my dr. again. dr. doom said to stop and have me come over to his offices right away. at this point, i knew he was going to admit me to the hospital. we left and went to dr dooms and after a short wait in the infusion center, i was admitted to the hospital.

so....i was in the hospital again....for 5 days.
the fluid build up was due to a couple cancer nodules that have attached themselves to the outer lining of my stomach....in the cavity of your torso where there is a lot of room for fluid to build up. i really looked like i was 4 or 5 months pregnant. it was extremely painful....

they drained 8 liters of fluid off of me....2 gallons...16lbs! 4 during each session over 2 days. since i have never been drained before, they only do 4 liters at a time so your body doesn't go into shock and you end up in ICU. it felt so much better after they drained it. then i was in extreme pain a few hours after they drained it cuz my body didn't know what to do with the extra room and it was killing me. a couple nights in the hospital like that and i was about to lose it. one funny story the tech told me was that he had a little old lady in there one night and they were draining her belly...he said they were on their 10th liter....that's over 20lbs of liquid! anyway, he said she had been really quiet and finally said "wow, now i know who's causing the drought around here!" hahaha...i was cracking up.

the whole time in the hospital i was still battling nausea and pain and not being able to sleep, then ONLY being able to sleep. i was released on Friday may 16th and have been getting better every day now that i am home again. my belly is still sore from the surgery and the fluid drain, but i am finally on the mend...i can finally see the light at the end of the tunnel. it has been a long and bumpy road.

i have an appointment tomorrow to talk next steps in treatment finally. they are going to start me back on the sutent as soon as possible to take care of the weeping cancer nodules in my belly. right now i am on steroids to try to help control the inflammation and weeping of fluid.

that is the only progression of the cancer during this whole recovery....the rest of the area that had been reduced already showed little change, so that is really good that it didn't come back like gangbusters while i was down and out.

luckily, CDRCC (what they finally determined i had) responds to sutent the same as the most common type, clear cell. BUT, it also has shown some response to a nexavar and chemo cocktail combo that other RCC types do not respond to....so, i actually am rare as shit, but have a couple more options now for treatment that i didn't have before.