Ahh Haa! THAT's why...

http://www.fda.gov/bbs/topics/NEWS/2009/NEW01980.html

this week i was reminded why i keep fighting, enduring the side effects, enduring the pain....of course it is because i want to live, but more importantly, i want to beat this! each day, each month, each year i can hang on, science progresses and new treatments are approved by the FDA. (see link above). this drug is very promising. it appears to have the same if not better results than sutent AND it targets the malignant cells only whereas sutent starves all cells and the malignant cells simply happen to grow and thus die faster than normal cells. from everything i have read so far, it would seem that i am a candidate for this new drug. if i am not, i'm sure i will be soon. i am going to mention it to my dr. tomorrow and ask him if he has any additional data that would lead him to believe it is a good thing for me to look at trying out. the side effects seem to be similar, but it doesn't say anything about discoloration of the skin and hair. that would be great! no more white hair and white eyebrows and white eyelashes.

to all the science geeks and mathletes out there...THANK YOU! thank you for being passionate in your nerdiness and your quest for bigger and better treatments and cures!

is no news good news???

a bunch of beansavers have been asking why i haven't posted anything on the blog. well, there just isn't much to say. not much has changed since the last post. i'm still on the 25mg sutent, the side effects are tolerable. indigestion is the worst thing, but that is also due to the fluid as it can also cause indigestion. whenever i get drained, the indigestion magically goes away for several days for the most part and i can actually eat a lot more when my belly is NOT full of fluid.

as you may have guessed from the info above, the 25's are not keeping the fluid at bay as much as i had hoped they would. it has slowed down so i am not having to go every week, but i can barely make it 2 weeks and it is not getting any better than that. i had hoped to get it back up to a couple months in between drains...that is my goal at least, but im worried that those days are long gone. my dr. and a couple nurses have mentioned to me that i might want to consider getting a drain put in so i don't have to get poked so often. that way i could drain off fluid at home when i needed to. the only problem with this drain tube thingy is that it is susceptible to infection which my body can't handle not to mention the fact that you can't take a bath or go in a hot tub or go in a pool. you have to cover it up when you shower. they typically place it in your lower belly...below the belly button so you can't roll over on your belly. to me, it sounds like it would lessen my quality of life rather than increase my quality of life since i can still do all of those things. now, if i weren't able to do those things and it was too difficult to get to the hospital to be drained as often as i would need to, then yes, it would be time to look into something like that and become a human keg tap. but right now....i just can't do it. i can't bring myself to do it. i can deal with being poked every other week for now.

so, still slowly building up my stamina. i have good days and bad days. it didn't help that my thyroid was all out of whack again because they had lowered the dose of my meds to 75mcg for too long. after the last thyroid test, they had to jump the meds up to 125mcg....the highest i have been on. no WONDER i was so tired and my period was 3 weeks late and my fluid build up was not cooperating and my skin was as dry as leather. ugggg!!!! it takes 6 weeks for the thyroid to fully respond to the change in meds, so hopefully in the next couple of weeks things will be much better. i am a LITTLE less tired lately and i did get my period finally, so it would seem that my thyroid is starting to get my hormones back on track. hopefully i will continue to feel and do better and better and i will be able to increase my sutent dose to 37.5mg. if i can increase the sutent and tolerate it okay, that is my best bet to help control the fluid build up...otherwise, there is nothing else i can do. high protein diet, lots of fluids, some sort of exercise...even just short walks, balanced thyroid and more sutent. all of those things contribute to the ability to control the fluid build up. unfortunately there is no magic cure for controlling fluid. :(

not much has changed...steady as i go hoping that slow and steady does indeed win the race. my next scan will be in april....around the 3rd week of april. hopefully it will not show that i need to have another thoracentesis...that thing was freaking painful and i do not want to have another one of those any time soon.

The Tortoise and the Hare

ok. im back on the 25mg dose....started last thurs and so far so good. the fluid seems to be building at a slower pace, but im not sure why. could be the weeks on a high protein diet or the sutent starting to help a bit or my body finally catching up with the edema and the amount of fluid that has had to be drained over and over again so often lately....OR all of the above. every time they have drained since i got out of the hospital in jan, they end up leaving 2,3 or maybe 4 ltrs in there and my body just can't deal with that much on its own. it is only when they get it down to 1 or 2 left in my belly does the sutent and my body seem to be able to get rid of the rest on its own and balance out. so, i am going to be drained again this thurs even tho it seems to be building slower. i am hoping that they will take another 3 out and leave me with only 1 or 2 and since ive been on the sutent since last thurs, hopefully my theory will be correct and what used to work a few short months ago will work once again.

otherwise i am slowly, and i mean SLOWLY, building up my stamina again. i was so weak after getting out of the hospital and then stupidly trying the 50mg when i wasn't up to par yet and then on top of all that, weaning off of the morphine. man, i was just as weak as i was after surgery and it is taking a long time to get my strength back. its such a long, painful and frustrating road. any normal person would be back within weeks, for me it takes 3 or 4 times that. the tortoise vs. the hare. i am now the tortoise, but we all know how that story ended, right?! well, hopefully that will be me...slow and steady.

slow and steady.

False start

well, 2 weeks in to the 50mg treatment, i just can't take the side effects this time. i was not strong enough from the start and they are really kicking my butt. i had to go in to be drained again and dr. doom took me off of the 50mg dose until my side effects subside. meanwhile, coming off of the morphine and the sutent kicking my ass has once again taken all of my energy and stamina. i have a hard time doing just about everything and actually can barely do anything. extremely disheartening to go 2 steps forward and what seems like 10 steps back.

so, as soon as the side effects subside i am to go back on the 25mg dose and then figure out next steps from there. i pretty much have to have my belly drained weekly at this point. i really wish we could figure that out...figure out how to minimize that because it is so uncomfortable. so painful, the pressure, the bloating, the nausea, the lack of appetite when the fluid builds up. not to mention the fact that i feel like a freak having to go in and have my belly tapped and liters of fluid drained off. it somehow makes it more.....real i guess. the paracentesis people tell me stories of other people that come in there all the time and have 8, 10, 15 ltrs drained off regularly compared to my 3 or 4. i suppose that should make me feel better, but for some reason it does not.

anyway, just wanted to give everyone an update. on a good note, Forbes magazine came out with a great article this month. the link is below. check it out...it's pretty inspiring.

http://www.forbes.com/forbes/2009/0302/074_cancer_miracles.html

Steady as i go....again.

ok, so i started on sutent the saturday after my last post so, 1/31. I am on the full 50 mg dose to see how that goes. so far so good. i didn't get enough sutent built up in my system to help keep the fluid down, so it built back up again. i called on mon. to see if i could get in earlier than thurs to be drained again....to give the sutent the best chance to keep the fluid at bay by draining as much as was safely possible. i still had plenty of edema as well. i developed a theory that the edema was simply moving and becoming the fluid since the edema was obviously moving and going down, but i was gaining fluid. i told my dr. about this theory and he said that he would be fine with that if that was what was happening. at least if that were the case, we are making progress, things are moving and getting better.

so, i went in on tues. to be drained and they took 4 liters off (almost 9 lbs). i don't know where all of this fluid is coming from, but man does it feel SOOOOO much better when they take it off. i had immediate relief. i was so much more comfortable. the places in my abs muscles that felt like they were torn or pulled from me straining so much to move the extra edema and fluid around were immediately relaxed and given relief. it is amazing how often and how much you use your core muscles. try to move without using them at all....it is fairly impossible. i couldn't let them relax enough to start healing until the pressure was finally where it needed to be. i have felt so much better ever since tues. i'm still on morphine, but i only have pain when i move certain ways vs. ALL the time and my belly is not filling back up as fast. it seems to be more manageable now. woohoo!!!

i've been on the sutent for a week and so far so good. i am going to call tomorrow(mon) to see about getting off the morphine. i don't like being on meds for very long and i have been on it for about 2 weeks now i think. i'd like to start working on tapering off of it even tho the torn muscle pain is still there, i think since there is less pressure, i could manage the pain with a less intense drug.

anyway, that's about it for now. feeling much better, eating a high protein very healthy diet, eating as much as i can, drinking as much as i can, edema continues to go down, fluid seems to be under control or at least it is taking a lot longer to build up this time and the sutent side effects aren't bothering me yet. still can't drive since the morphine makes me really drunk one minute, dizzy the next, tired the next and nauseous the next. will update again when i find out what my next steps are for the morphine taper. thanks guys!

A week in medical hell

this is not going to be written in my usual humorous and sarcastic tone because i have actually reached the end of my rope this week and need some serious calm down time. so, please don't worry that i am "giving up", i just reached a very low point and need some time to come back.

ok, so the transfusion didn't really seem to do much for me that i could tell. i was also so swollen from both edema and fluid build up that i just could not take the pain anymore. i called my dr. on tues. and they asked me to come in wed morning to be looked at and that they were going to go ahead and schedule me to be drained. by now i was so incredibly uncomfortable that i couldn't help but cry out of pain and frustration every night....night is when it was the worst.

so, i go in and see the dr. for just a few minutes...he agrees i need to be drained but also decides that he wants to move up my CT scan which wasn't scheduled for another month because he want to see what's going on in there. so, i have my paracentesis wed. morning after the dr. appt and then i have to go over to drink the nasty smoothie stuff in order to have a CT Scan done that same afternoon. i haven't eaten all day and now that the ct is scheduled, i can't grab a snack at lunch because i can't eat before the scan. luckily, the drain goes just fine....they take off 3 liters...wish they would have taken off more, but i can't go against dr.'s orders. done with the drain, we go back to the waiting room(it happens to be the same one for the CT scan at this location) and they ask me what flavor i want to drink. I ask for berry, but they are out so i have to go for the banana smoothie that is warm. yuck. luckily they brought me some ice to cool it down and i manage to drink it down in the time allotted. it is so freaking cold in the waiting room and i am drinking iced smoothie that now i am a popsicle and have 3 blankets on and my winter coat. by the time they come and get me for the CT, i have still not warmed up, in fact i am just as cold as when they started trying to warm me up. now they have to try to get an IV in me for the IV contrast dye for the CT. uh-oh. its cold, im cold, ive been drinking a cold drink and now my veins have run away to hide from the evil blood suckers because they will not soon forget the week of vampire misfires. so, while im sitting on the CT bed, the two....i'll call them techs for lack of a better name. if i called them what i really wanted, i would offend several people im sure. one of the reasons i have taken so long to write this post is that i had to cool down....every other word was a 4 letter one when initially discussing the story i am about to relay. ok, so while im sitting on the CT bed the 2 techs realize after a few minutes that i am going to be hard to get an IV in. i warned them that there are only a couple good places to get me, but even those places have been blown before and to top it all off, my veins are rollers. they immediately move me to a room off the CT room that has a recliner chair in it. they sit me down in the chair and put blankets on me and proceed to beat my arms in different places trying to get my veins to come out and play. the blond tech thinks she has something, so she goes for it. nope. stick 1. she thinks she sees something else. she goes for it. nope. stick 2. the brunette thinks she sees something on the other arm that the blond "will really like". she moves over and goes for it. nope. stick 3. she tries one more time. nope. stick 4. at this point they decide to go get a nurse. now that i have been stuck 4 times and my arms smacked around and beaten and needles digging and fishing, the GD MFing TECHS are going to go get a nurse....AFTER i warned them i was hard...AFTER i warned them that my veins rolled and had been through a lot over the past couple weeks. yeah, i had a few choice names for these ladies at this point, but was in so much pain and so nervous about how many other pokes i was going to endure before an IV actually got in, i held my tongue.
in walks the nurse...the techs are nowhere to be found. i think i scared them off. the nurse starts looking, i show here where they have already poked around, i point out where the best places are to get me, i point out where i have had a recent IV. she starts beating my arms having me make fists, hang down my arms, beat them some more. she finds a spot she is willing to try, she goes for it. nope. stick 5...and she digs around a bit cuz she can't believe she didn't get it. she moves to the other arm and finds another spot she's willing to try, she goes for it. nope. stick 6. she digs around in here for while again until tears are pouring down my cheeks. she gives up and says she is going to get her supervisor.
now, in walks the supervisor...drills me with the same questions. do i have one arm that's easier than the other? etc. i tell her all the same stuff...of course none of these people ever freaking listen! after beating and squeezing me all over again, she goes for a spot just above where the last lady had tried. she got it for a second, but then she blows the vein. ARE YOU FREAKING KIDDING ME?!! THIS HAS GOT TO BE A JOKE....THIS MUST BE SOME JOKE TV SHOW OR SOMETHING. THERE IS NO WAY THIS MANY PEOPLE ARE THIS INCOMPETENT!!!
nope. stick 7. then she finds another place that is again, just about where the other chick tried. she goes for it and fishes until she gets it. my arm is killing me at this point, but its in...finally. now, the nurses are chit chatting about how i don't look like im going to be that hard to get and that my veins just decide to run and hide as soon as they stick me...blah, blah blah. i want to stab them all in the eye as they talk about the pain they have just caused me like its nothing. after 45 minutes of searching and poking, i am finally ready for my 5minute CT scan. scan done...let's go home before i kill someone due to my tortured state of mind. i have a 9am appt with my dr. to go over the scan the next morning and discuss any changes and next steps.

8ish am the next day. my dad and my stepmom pick me up and we head to the 9am appt. as we look over the scan from the day before and compare it to a scan from a year ago, he determines that there is no measurable change in the size of the cancer...which is great news since this type of cancer is fast growing. he can also see that there are still several liters of fluid in my belly as well as fluid in between my left lung and the sack that holds the lung that is putting enough pressure on the lung to decrease its capacity by 50%. although i can't really feel it...i don't have any trouble breathing, i do have pain in that area that is the pressure being put on the lung. so, my dr. orders a different kind of paracentesis...one where the needle goes into the area between the outer sack and the lung and drains the fluid....they go in in between the ribs. OMG....hearing this i got a little freaked out. they also order an echo cardiogram to check my heart because they didn't have one on record and before starting back on my meds, they wanted to have a good look at everything to be sure we were good to go. we head right over to have my lung drained. in order to do this they sit you on the bed and have you lean over a raised table to be as still as possible...they don't want to go puncturing your lung! the initial numbing and stick is actually less painful than when they drain my belly, but it only gets worse from there. as the fluid drains out, you would think that you would start to feel relief...oddly enough, it is the exact opposite. it starts to hurt, really bad, your lung starts to spasm slightly and contract to the point where it feels like you can't breath. you have to cough a lot and if you try to take anything other than shallow breathes, you are smacked with a wave of intense pain. you also feel chest pain and you start to get phlegm in your throat along with the strong urge to cough...which they tell you is fine...cough all you need. coughing, however hurts. anything that causes your diaphragm to shift and push on the lung hurts, so hiccuping, burping, laughing, coughing, sneezing...OMG sneezing. i avoided sneezing a much as i could until finally i had to let it go. i screamed bloody murder when i did finally sneeze. so incredibly painful. well, all of these side effects were only supposed to last for an hour or so....LIES! more LIES! my lung was killing me for close to 2 days...although it did feel a little better each day, it was still extremely painful to sneeze or burp or use my left arm....i hope that i don't have to do that again for a very long time.

immediately after i had my lung drained, i had to go for an x-ray to make sure that my lung was filling back up with air like normal vs. collapsing for some random reason. so, we head down to x-ray and have that done. it is difficult to move in general because every time you move, you shift your insides and my insides were in no mood to be shifted at that point. they wanted to be left alone. anyhoo, the x-ray looks fine so then we head over to the heart specialist to get my echo. this should have been the easiest test all day, and it would have been if it weren't for the fact that i had just had fluid sucked out of my lung and my insides were in shock and moving even fractions of an inch was extremely painful. i laid down for the start of the echo and the tech asks me if i would be able to roll to my left side....i look at my dad in horror and tell the tech "no freaking way dude". i explain to him what i had just been through less than 30 minutes before and that getting down in the position i was in was about all i could manage at this point. he says ok and that he will work with it and try to get everything he needs without moving me. then he asks me to take a deep breath....ummm, did he not just hear what i explained i had done to me? no, you will get no deep breath out of me unless you would like for me to scream bloody murder in you quiet little room and freak out the rest of the patients in the waiting room. he got the deepest breath i could muster and that was that.

20 minutes later, my heart looks perfectly fine and we are on our way home.

now, a brief...well brief about the fluid and what's going on there. when fluid builds up in your body, it is actually your bodies way of trying to heal itself, but when it ends up in random places, it is just confused. this fluid is full of nutrients and albumin or protein. every time i have it drained, my body thinks that something is missing and through a form of osmosis, it is trying to "equalize" what is missing and the fluid fills back up again. SOOOO, now i am on a super high protein diet, the more protein i can get the better to try and help with this phenomenon. protein also helps with the edema as well as walking. the latter i have not been able to do much of however due to the fact that i either pulled or tore my core/ab muscles in a couple of places and could barely move. it is absolutely amazing how often you use your core muscles. you can't move without using them in some way.

last bit of the story. my scan showed that there was still some fluid in the belly that could be taken off. so, i called my dr. on monday to check in and told the immunotherapy coordinator that i wanted to be drained, to get the rest of the fluid off of my belly to ease the pressure and aid in the healing of my core muscles. i was also put on morphine(which i was put on once before for extreme soreness in the abdomen.) i went in on tues and they took 3 more liters out....i was already on morphine at this point a happy camper. i was all giggly and chatty and talked in my sleep like a kid all night long. my boyfriend said it was so funny and that i was acting like i was drunk. ha! morphine is my best friend right now. the only relief i have had in weeks.

so, now i am healing and taking it easy and my pain is under control and the edema is going down and soon i will start walking to help it go down more so that i can start back on my meds in the next couple of days. i am writing this blog entry while im high on morphine. so, i apologize ahead of time for things that don't read right or misspelled words or any confusion you may have. it all makes sense to me right now! ha! also, even tho this entry is long as hell, im sure i missed something because there were a lot of details to deal with last week. especially in my appts. with dr. doom. so, i wouldn't be surprised if there is an "update" soon.

aight peeps....im outie 5 to chill in my happy little morphine-ness. holla!

transfusion schmanfusion!

ok. so the transfusion of wonderful blood was supposed to make me feel better. well, i'm still waiting for that to happen. i have been one cranky bear for the past couple days. first i felt like i got dumbass blood, if that is even possible. i really felt stupider (i know that stupider is not a word). then i decided that i think i know what it feels like to be 11 months pregnant...yes, i said 11. i know the norm is 9, that is precisely my point. i am so full of edema and fluid right now that it is almost unbearable. i'm trying to drink and walk as much as possible. little baby 10 min walks several times a day. so far i just keep gaining weight rather than it coming off. i am SO freaking cranky i can barely stand myself. the only time i get any relief is when i take a bath. a nice hot bath and i can float my big ole bloated belly in the water. ahhhh....that is the only time in the day that i feel "normal". the edema is moving around...it has moved down my legs now too....my feet look like little loaves of bread in my shoes. im baking bread in my shoes...a new talent that i can brag about.

my memory was not serving me well and my mom reminded me that i really didn't start "feeling" relief last time i had edema until the 2nd week. that it started moving and people could see a difference, but i didn't feel much relief until after the second week. then it started to go down a lot faster once it got going. so, i am waiting a few more days to get further into the second week to see if things start to pick up. if not, i am calling my dr. early(i have an appt thurs) to see if i need to come in sooner. i have to admit that this time yesterday i was worse than i am today, but who knows what tomorrow will bring. up down up down up down up down.....uggg.

calgon...take me away! if i lived on the moon right now, it would be so much more comfortable.

Vampire Revenge!

well, i had my check up appt. today and apart from the edema taking forever to go down, the only other thing wrong with me right now is my hemoglobin is still low. when i left the hospital it was 8.6 and it is now up to 8.8(i think norm is around 10ish), but dr. doom wants to get it up faster so you know what that means????? THAT means that i get to take back some of what was taken from me by the vampires that lurk in the hospital. i am going in for a 2 unit blood transfusion on friday. MMmmmm....precious blood...i will get you back! yummy O-neg blood....2 units all mine! i get to become vampire for a day. it will take about 5 hrs. 1.5 to 2 for each unit and then they have to watch me for 30 min after each one to make sure that i am doing alright. dr. doom says that it will help me feel less tired and that it will help speed the absorbtion of the fluid from the edema back into my body.

also, i have not been able to taste anything in a very long time. the short breaks i get from the sutent are not long enough to recover from that side effect completely, so dr. doom said i don't have to go back on the sutent until i can taste again. YEAH! i get to taste again. i am so excited. my skinny ass is going to be pigging out once i can taste again. i can't wait! woohoo!

but first, i shall get my revenge on the vampires from last week and replenish some of what was taken from me! friday i will be the blood sucking vampire!

Tumor Fever Tidbit

so, my mom was doing some research on "tumor fever". this is what dr. doom called my fever last year, he has yet to say that i had the same thing this time. she happened across a fellow cancer blogger who has experienced the same tumor fever as i have and she has done some research on the scenario. here is a snippet:

"'Tumor Fever' is not uncommon and is caused when the tumors "become necrotic" (die).
You end up with dead tissue in your liver & colon which can cause inflammation..."

this particular person has colon cancer that has spread to her liver, thus the mention of the "liver & colon" location. for me however, it would be in the kidney/lymph node area. i had been having pain around lefty for a few days before i got sick. this makes sense with the "dead tissue....which can cause inflammation". although my dr. has yet to confirm whether he believes it to be tumor fever again, all signs are pointing that way since all of my tests came back negative in the hospital. this is very encouraging to me. DIE LEFTY DIE YOU CANCEROUS BASTARD! if tumor fever and pain/inflammation in that area are signs of cancerous tissue dying, then well, it kind of makes the vampire misfires worth it. i'll be asking for a diffinitive answer from dr. doom on the 14th as to whether he thinks it was tumor fever or not and will update you all on what i find out.

i must clarify that when i quote the fellow cancer fighter regarding the "tumors dying", that simply means that parts of the tissue as a whole are dying which causes the mass to shrink, not that the entire cancerous area is dying. it does not mean that lefty is gone when this happens simply that a little more has been chipped away from the S.O.B.

Hospital Stay #3 - vampire misfire(s)

well, well, well. here we are team beansaver. i haven't had a painful yet twistedly humorous story to share with everyone in a while, so someone decided it was time and that i, once again, was to play the lead character in the story for ya. here goes...

with all the twilight hype going on right now i have to drink a glass of hater-ade for the bloodsuckers during this story(and i love vampires and werewolves and all that jazz).

ok, here goes for real....
sunday after New Years i started not feeling so hot. really achy and tired and cold and splitting headache. i kept drinking a lot of gatorade and water, but nothing seemed to help. i stopped taking sutent in case i was coming down with something. i got up monday morning and was feeling worse so i migrated to another area of the house for a change of scenery and took some tylenol and continued to try and drink. i called my dad and he came over for the afternoon with soup and new thermometers to keep a check on my temp. it was 101ish but went down to 99ish during the course of the day. when dad left i was feeling ok. had dinner and tried for over an hour to keep it down, but it ended up down the toilet. i drank some more fluids and then went to bed, hoping to feel better in the morning. during the night, i continued to get hotter and hotter. i was burning up. finally, the next morning i got up and repeated the routine of the previous morning, but this time, my temp was 103. time to call the dr.

so, i called my dad and stepmom and they called the dr's office and of course they told me to come right in. i get there with puke bucket in tow and they take me right back to the room. at this point my head is pounding, i am burning up with a temp and i am slightly disoriented. they lay me down on the examining table to start to try to relax me. they managed to get a free drip IV in me right in the office to start fluids because i was so dehydrated. after about an hour, i was wheeled to the hospital and admitted. fever still up around 102.7, head aching so bad it felt like daggers being stabbed in and out of my temples and eyes and body aches like i haven't had in a long time. i had also been nauseous all day.
the first call of action once i am in the hospital is......yup, you guessed it....to call in the blood sucking freakin' vampires. AKA the blood people. the ones who come to get blood samples for various tests. they wasted no time..i was barely in bed before she was coming at me, fangs bared and ready to strike. too bad she sucked(no pun intended) and had to poke me twice. well, actually three times cuz she had to take my blood for all sorts of tests. some tests could play nice and share tubes and others could not. well, so far i had 4 holes in me...1 for the IV, 1 for the general labs, 1 for the blood cultures and 1 for the vampire misfire.

on we go, the night is terrible because i have absolutely no relief until i am finally given some tylenol to help with the fever. i have on 5 blankets and my fever is still 102. i wake up about 3 am pouring sweat..apparently having finally broken my fever. my IV that was put in at the drs office is holding up pretty well, but its in an awkward spot and every time i bend my arm, the IV alarm starts going off. so, i had woken up to a soaked, sweaty bed and beeping in my ear. i call the nurse and ask for new gowns and for my bed to be changed and for the other nurse to come and check my IV because it is beeping. (two nurses do that variety of things).

so, im back in bed still feeling fluish, but a little better and all snug and fresh and ready to go back to sleep when someone comes a knockin'. GRRR. "hello, good morning! how are you?" freaking vampire #2 'oh, hell' goes through my head. good morning?, good morning??!! its freaking 4 am...that in my book is not a good morning...it is a very good late night maybe, but NEVER is 4 am a good morning. i was hoping that this bloodsucker was more skilled....unfortunately my hopes fell short as the concerned, concentrated, frowning look formed on her face while looking at my free arm (without the IV) as if she didn't have a juicy place to bite. "here we go" i thought. she finally went for a spot in my elbow-pit that most good bloodsuckers can nail every time. she didn't. then she goes for my hand which EVERY bloodsucker has ALWAYS gotten....she didn't. she tried another spot on my hand and got it, finally. as usual when she is done and on her way out i say "thanks" and "you too" in response to her "have a good day". meanwhile i am remembering ways to kill a vampire in the back of my head. back to sleep...as much as i can get between the "knock knock - time for meds, knock knock - vitals, knock knock - taking your trash, knock knock - im leaving for my shift in an hour, knock knock - shift change, knock knock - morning dad!"

the next day i actually felt slightly better. my temp had gone down to 98.5 or so which is still a little high or me, but not technically running a fever..YAY! i still had a headache but it was greatly dulled by the tylenol and i was on a regular dose of it. i was also getting calcium, magnesium, antibiotics and potassium along with my regular meds. i was resting and talking with my dad after a fruit plate breakfast and for once, rather that having to run to the potty, i just had some gas....so i farted. im the patient. im allowed! we giggled like kids and then i farted again. a few minutes go by and i fart again....only this time, a look of horror spreads across my face as i felt a warm puddle form at my butt. OH NO! I SHARTED! DAD, DAD, HELP, HELP! i have to get to the bathroom, i trusted a fart and i shouldn't have HELP! my dad, usually as sympathetic as a nun, was laughing his ass off. what i haven't mentioned yet is that my bed had been made again because i sweated out more of my fever the rest of the night after the first change, so the sheets i sharted on were only about an hour old. the guy that came back to change the sheets while i was in the bathroom changing my shorts said "i just changed these!" ha! sorry dude. shit happens...literally. the food was, well, hospital food, there is no need to completely gross you out all in one post. my dr. ordered x-rays of my lungs and they looked clear. unfortunately i was left down at x-ray for 45min after i was done and became very, very cold. i managed to avoid the bloodsuckers the rest of the day....cuz they mostly come out at night....mostly.

as i settled for bed i was beginning to become uncontrollably cold. shivering like crazy. i never completely warmed up from my trip down to x-ray where they left me like an unwanted child waiting...freezing my fever having ass off until the transit people decided to show back up.
i digress....so, im trying to get warm and settle down to sleep while hoping that the tylenol fairy will bring my dose early to help my splitting head. give up kids...there is no tylenol fairy, there is only frank the nurse and he won't bring it until it has been 8 hours damnit! temp had actually hit a low of 97.5 that day (my norm), but now it was on its way back up and made it up to 100.1 before i managed to get the next tylenol dose. i finally got to sleep through the shivering and broke my fever again around 3am. i called again for new sheets (this time i didnt shart in them...i promise). as im getting all tucked back into fresh dry sheets and a new dry gown...knock knock.....blood sucking vampire time. yes, the worst blood sucking experience i have had to date....and i mean ever, not just during this stay. she looked at my arm like the ones before and settled on the spot i told her was good for most of her fellow blood suckers if they were quick, my elbow pit. she tried, and missed...whined about the vein rolling and tried to chase it. this hurts like hell you know. i finally said "okay outta there!" then she tried the hand, which she claims she got, but said that nothing was coming out. so she got out of there. she himmed and hawwwed and finally said "i'll just drip it out of your finger tip". WHAT? are you kidding? no, she was not. so, she proceeded to prick my finger and squeeze and squeeze and squeeze and squeeze to drip and drip and drip and drip until finally she thought she might have enough. then she left. when she walked out i had bandages on my elbow pit, my hand and my finger, all on the same arm. then my IV started beeping and i had to call frank, my nurse, again. when he came to reset the pump he actually laughed and asked what happened to my arm. i told him that the blood sucking vampires sucked me dry and had to get drops out of my finger. he cracked up and started to help me take off all of the bandages. that was around 5am...i napped after that.

the next day when dr. doom came to see me he said i was improving, but now i was getting fluid on my belly from being pumped so full of IV fluids. he ordered an ultra sound to determine how much fluid needed come off and how much was edema buildup and scheduled me to be drained that day. he also told me that he was going to cut down my IV fluids from 150ml/hr to 75ml/hr. great. slow it down so i don't go home with 30 pounds of freaking edema like i did last year. he also said that i was going to be there another day and that i needed to start walking around the halls once i got the fluid off. so, time to move the IV that kept going off every time i bent my elbow....we waited 2 hours for the IV chick. when she finally came and moved it, it was the worst, most painful IV stick i have ever had. she had me in tears. finally when it was over, guess what....yup, another bloodsucker came in wanting her share. she must have smelled the fresh stick and came running since it was 2 in the afternoon!! at this point, she was having a hard time figuring out where to stick me because i had 3 holes in my elbow pit, 2 in my left hand, 1 on my left ring finger, one healing IV line in my right arm and 1 in my right hand. she decided to go for the place where 3 had gone before and none had made it back with any blood. i told her she had to be quick cuz my veins were rollers. she tried .... and .... YIPPIEEEEEEE!!!!!! she made it. finally, one of the bloodsuckers was able to get me without multiple pokes in ridiculous places.

only one major poke left for the day. to be drained. i went down to be drained shortly after that and that actually went just fine. they pulled 2 liters off, so 4.4lbs. then they sent me back upstairs and i rested. done...i was going home tomorrow....yeah!

i had a slightly restless night...weird dreams and restlessness so i decided to walk at 1 am. i walked around the halls and then settled into bed. i ended up sweating my bed out again just to be thorough i guess since i wasn't running a fever. called for the new sheets around 5 and had the usual interruptions until i was forced to get up. dr. doom came in around 8ish and told me that i needed another bag of IV magnesium and that i was probably going to be released, but that he would let me rest and be back later. by lunchtime he was back and i was told that this chicken was flying the coop! thank goodness! he didn't know why i came down with the fever, my lungs were fine, none of my blood cultures came back with anything, my white cells were down and my hemoglobin and platelets were down....typical with my sutent meds. he told me to not start back on my meds until i met with him again on the 14th. i asked about just the flu...if there was a flu test and he simply said that he didn't think that was it, but mostly just sluffed off the question. he's not the type to give the first easy answer so i think he wanted to pin it on something else so he can make sure it doesn't happen again. if it was the flu, he can't control that.

phewwww! sorry for such a long story guys, but i felt that one deserved to be told. i have a new nickname for a group of my caregivers....Blood Sucking Freaking Vampires. they take my blood, they always cause pain, and they mostly come at night......mostly.

Happy New Year!

well, as many of you know who have been with me from the beginning (or who have caught up by reading from the archives), you know that i just hoped to make it another year. well, baby steps as they say and i made it. i'm still here! not only am i still here, but i am still making progress. it is hard as shit and there is no way i could do it without the help i receive from so many people, but my body is continuing to fight. i am continuing to fight. FIGHT FIGHT FIGHT! i am in week 2 of my 3 on 1 off cycle and will be able to take a break starting on jan. 12th. my next check up appt. is jan 14th....i think. i'll have to confirm that later.

anyway, just wanted to check in and wish everyone a happy new year. i would have posted sooner, but i haven't been feeling very well for the past couple days and haven't been on the computer.

thanks team beansaver! those of you whom i do not get a chance to see very often, i miss you terribly. i hope that we can find a way to visit more in 2009! love you all!

Christmas here i come!

follow up appt. went just dandy. dr. doom is glad to see my weight down. i'm not. i'm actually feeling a little like a skeleton, but i guess if i was too skinny the doc would do something about it. steady as i go again with this appt. the only thing was that i was low on magnesium again and had to go to the infusion center the next day to get a 3hour IV drip of magnesium and i am now on a daily dose of magnesium since my body seems to not be able to retain that mineral while on the sutent. many of you are wondering what magnesium does for you....a lot of people have asked me so i figured many more might be curious. well, the dr. told me that it helps your body function better and helps you process the nutrients in your food more effectively. will it help me with the fatigue? many have asked that as well....the answer is that i'm not sure. it would seem that in a round about way it should help with the fatigue since it will be helping my body get more out of what i am able to eat and keep down. hopefully that will be the case.

that's about it for now. i have felt like i might be coming down with something over the past couple days, but i can't tell if it is just from the magnesium boost or if my body is trying to fight something off. needless to say i have been resting a lot and being a big baby because i don't want to be sick for christmas. so team beansaver, cross everything once again for me that i will get over whatever is ailing me and that i will be well for christmas day! i hope you all have a wonderful holiday and an amazing new year!

Christmas Overkill??

Many of you have requested to see the Griswald-isk set up across the street. well, attached are a couple pictures. i couldn't fit all of the lights in one frame for he full effect....need a panoramic setting and i don't have that on my camera. Plus, it was all i could to do bring myself to stand out there and play with the settings to get what i was able to get. for some reason the same settings i used to take pictures of my house didn't work with theirs.

anyway, notice how tall the snowman is compared to the car in the driveway. and oh yeah, the deer are the kind that move their heads.

The Snowman

Santa and Rudolph go round and round

Deer on the lookout!

on a side note, i can't even keep my lights lit...the top strand, yes the top one, not the bottom or the middle, but the very top strand of lights on my tree went out this morning. that's gonna be fun to try and find which evil bulb is at fault for that little dose of christmas joy. i love the holidays!

merry christmas and happy holidays team beansaver! time to get ready for my check up appt.

caught up in christmas cheer....sort of.

sorry its taken me so long to update the thanksgiving week from hell. well, i went in for my IV infusion of magnesium and that went fine. then i went to be drained and that went as it usually does. the PA didn't get me with the first poke and had to do it again and deeper like i told her in the first place. i understand why these people don't want to listen to me, the patient....it makes it seem like im telling them how to do their job. im really not. im a good patient most of the time. i put on my big girl pants and deal, but i know my body better than anybody AND i have been drained several times now and have actually had one of the PA's tell me to tell the next one details about me to make it go more smoothly. to just go in on the left, no matter what the right side shows on the ultrasound. i need 2 shots of lidocane and they have to go deep...farther than they think before the fluid will start coming out. see, there is a lot of scar tissue built up on that side, which is why they have to go in deeper than they think. they tell me every time that there is scar tissue there from them poking me....i try to explain that i have only been poked 4 or 5 times in a year and that i have a whole lotta mess going on on the left side that has nothing to do with a little poke in the side.

anyhoo, once that was all over i was finally able to relax and try to have a nice thanksgiving. BUT, and there always seems to be a but doesn't there....i was in a lot of pain. really sore from being drained this time. so, i wasn't able to do a whole lot the rest of the week. i did manage to help with some of the cooking, but not much. i was able to eat tho...and that was the main goal. to feed my skinny ass!

so, beginning of the week, not so good, but by the end of the week i was doing pretty well. now i am completely caught up in the race to christmas. shopping, wrapping, decorating....uggg....who's idea was it to do all this work for one day? it's like "keeping up with the jones'" on my street. one house puts up some lights...then the next house puts some up....then the first house puts up more. its insane. i actually went out and bought one of those lit animals. its a polar bear playing with a red ball that lights up and moves back and forth. it in no way competes with the people across the street from me. OH NO....they have a 7ft. blow up snowman that stares at my house all day/night long AND a 6ft. blow up snow globe in addition to the lights on their house. look out clark griswald....you've got competition. i think i actually heard a plane that was coming into charlotte-douglas change course because they thought the griswald wanna-bees house across the street was the beginning of the runway.

oh well, it's all good fun and holiday cheer right?! go in debt shopping for decorations and presents and get half a dozen paper cuts wrapping. but, it's all worth it for one day of glory where the retail therapy has paid off as you watch everyone open their presents.

oh, i do have a regular follow up appointment this thurs. 12/18. its just the 3wk routine visit, but i will try to get a quick update/post on here after that appointment to let everyone know how it went before the holidays.

Happy Freaking Thanksgiving...

well, once again, just having a smooth holiday is not in the cards for beansaver. i had my 3 month scan on monday and my follow up appt. tues. (today). my scan showed that the lesions on my liver were pretty much gone...well, they at least weren't showing up on the scan now, but i have so much fluid built up that it was hard to tell what was going on everywhere else in my torso. the other thing that we could tell definitely was that i have built up more fluid behind my left lung...not IN my lung, but behind it so that is putting pressure on my lungs and the fluid that is elsewhere in my torso/belly is putting pressure on everything else. soooooo, we decided to make an appointment for me to be drained tomorrow (wed.) the day before Thanksgiving. ok..fine...no problem, unstuff me the day before i want to stuff my face with turkey. well, then they took my blood and ran my labs the way they always do every 3 weeks. last time my potassium and calcium and electrolytes were down. this time they were all fine, but my magnesium was down. so, they had to call in a last minute prescription for me to take 3 magnesium pills tonight and then i have to go in to the infusion unit tomorrow at 10:30 to get an IV dose of magnesium before my appointment to be drained at 1:30. i also have to have blood drawn again before i go to be poked and drained. :( another full day at the doctors/hospital. all of that is after today when i had to be poked twice already to get my labs drawn because the chick blew my vein the first time. wawawa.

i should be happy about my scan. i should be thankful that the cancer is not growing like crazy since that is typically what this type of RCC does. it is very aggressive and fast growing, so the fact that it did not get any bigger for this scan is progress. i, however, am a perfectionist and want to excel at everything and had gotten used to receiving great news with every scan. i got used to "exceeding expectations" and being my drs. favorite case, the topic of conversation during the Monday conferences with all the other doctors. the almost unheard of "50% reduction" being the norm for me....that's what i wanted to hear again!!! yes i am spoiled. i admit it. this time, i will have to settle for the "holding steady with slight progress". the most frustrating thing is that there isn't anything i can do to change it. i can't make the meds work better. i can't make the cancer die faster. i can't make the fluid stop building. i am at the mercy of my body and chemicals and drugs that i can barely pronounce.

at the very least, i will have a belly that is drained of fluid so that i can fill it up with yummy Thanksgiving treats with my family. yeah to being able to eat more than a cup of anything at a time...more room in the tummy means more turkey and all the fixin's for me! yippie!

so, thanks for all your thoughts and prayers team beansaver....have a Happy Freaking Thanksgiving.