A Star for Sarah

Click on the "A Star for Sarah" to visit her at the SU2C constellation.

Sad, sad news...

After over two years of fighting unbelievable battles against this insidious disease, Beansaver lost the kidney cancer war on September 6th. She never could build enough stamina after suffering Sutent's side effects and the ascites fluid buildup and thus the new drug Afinitor was never an option. She continued fighting - struggling to get up every day, in spite of several debilitating symptoms including 30 lbs of edema in her legs, until she was too weak to do so and she went to a very nice hospice for comfort care. Five days later on Sunday morning she died peacefully in her sleep with BeanSaverMom holding her very brave little girl's hand...

I know Beansaver truly appreciated all of you who followed her blog and I'm sure you will all miss her often humorous and entertaining posts - a true feat when it comes to talking about kidney cancer.

Beansaver's Facebook friends can find additional information on her wall.
---BeanSaverMom

fear = weakness or weakness = fear????

been a lot going on team bean saver(none good).....promise to update this week.

Resistance is futile

i am now officially a member of the Borg Collective. the tube is in and we have been draining 1ltr./day for a little over a week or maybe 2 weeks? i dunno. anyway. i am pretty much empty from what we can tell and am now just draining and checking the bandage 1x/week. the convenience is nice. drain when i feel like it....i have a nurse the comes to my house once or twice a week depending on my needs. either he will do the drain, or he will train anyone i want to be able to do it. my mom and i have been trained to do it...i haven't done it on my own yet because of the angle....it's kind of hard to get through the last step by myself. morphine is still my friend so far. i am on these continuous release patches that i have to change every other day. i am also taking a short acting version for when that just isn't enough. i'm still not taking very much in the way of pain meds. dr. dooms nurse laughed at me when she saw how much the Rx for the morphine patch was....she said "whoa, don't o/d or anything! hehehe" at the time i was on the lowest possible dose, i am switching to the second lowest and my have to go up from there....i don't know. its one big guessing game of trying to manage the pain. some days are fine, some days are terrible. stress has an effect on how my meds work, so i need to try to tone down the stress i think.

i am extremely weak...can barely make it up the stairs without losing my breath. its terrible. my left lung is pretty full (well, the space between my lung and the sack that holds my lung) and i have a thora tomorrow that will hopefully bring some relief. morphine and lack of stamina also cause trouble breathing and since i've got all 3 going on....i figured that it was time to drain the poor lung. i've only had that done 2 times. the first time hurt terribly for several days, the second time it was like i'd been doing it for years. so, cross your fingers that tomorrow is like the second one i had. please be a nice thora!

sorry i haven't written a post in a while. its been rough going. you can pretty much assume that if i am not writing posts than i am in no shape to even get on the computer. unless i have mentioned a vacation or something.

oh yeah, during this "figure out the pain meds" and "get a Borg tube in my tummy" drama....i have managed to re-injure my pirafomis in my left leg and injure the right one just 1 week later. all that going on sure makes it hard to figure out your stable med plan. :(

hope is just around the corner....i can feel it. it's my turn for some good luck...MY TURN!

on the same page (Hospital stay part 2)

once i got to sleep, they actually let me sleep for a while....i couldn't believe it. it didn't last of course. around 4am the revolving door started, the vampires wanted blood, nurses giving meds, vampires wanting more blood, dr. doom paying an early morning visit. there weren't too many vampire misfires this time, so that was one good thing. my hemoglobin was pretty low so dr. doom ordered 3 units of blood so the 3rd vampire of the day had to take some to type and cross me. i am O-neg, but they have to type and cross you every time....c.y.a. policy i guess. they didn't do the para until mid afternoon or so...i was already getting my first bag of blood so the nurse had to escort me everywhere i went...more policy i guess. they took off 3 ltrs and everything seemed to be fine. i met with the nephrologist (aka...dr. kickass) and her lackey...kidding. i don't know if he was her lackey or what, but he didn't seem to know anything other than what she told him. she ran her blood tests and i had to pee in a cup for her urine tests. they also did an ultrasound to look at both kidneys and my bladder....for that they decided that coming to get me at 11pm would be nice. gotta love the middle of the night tests....i was half asleep and had no idea what was going on...not to mention the fact that i was still getting blood (on the 3rd unit). they hadn't started the 3rd unit yet tho cuz the nurse was running behind so they took me down for the test and then started the blood once i was back and almost asleep...again. when you are getting blood, they are constantly coming in the room to take your vitals, so needless to say, between the chick coming in to get my vitals every hour, the delivery of meds, and the vampires, i didn't get much sleep the second night.

the next morning, dr. doom again was early and said that he wasn't sure who's blood they had tested that morning, but it wasn't mine because the numbers were looking good and the hemoglobin was now high. ha! he seemed satisfied with where i stood chemically at that point and was just waiting to hear what dr. kickass had to say after she reviewed her test results. she and her lackey both came in later that day and said from their standpoint, the kidney and liver seemed just fine. that my creatinine levels continued to go down and that the kidney was functioning normally when it wasn't being "shocked" by the large drains. basically, if my organs were in a normal environment, they would be giving normal numbers. so, her conclusion was that if i could control the fluid buildup/drains and protect the kidney and liver by keeping the vascular system hydrated, that all should be fine and that they were perfectly healthy enough to try new treatments or whatever. if we could not control the vascular dehydration that was occurring due to the "stealing" of fluid to fill the void in my belly every time i had a large drain, then the numbers i was seeing would get worse and with my weight and muscle mass and those numbers, my kidney was only functioning at 30% at times. for example, when the creatinine his almost a 4....that was very bad.

so, dr. kickass recommended a couple options that in her opinion would be worth a try. albumin after drains, smaller drains, another drug/supplement after drains and i can't remember the name but will have my dr. look into it, blood after drains in certain cases, etc. she used the blood after drains as an example because i just so happened to have needed blood after this drain due to other things being low and since blood does not leak like fluid does into my belly, it stayed in the vascular system and kept it hydrated. so, there are a lot of things to talk to dr. doom about during my next appt. which is wed 13th. hopefully we can come up with a plan.

lastly, after the para on my right side, i started to swell, as if i had a hematoma. i showed dr. doom and he ordered yet another ultrasound to see if there was a pocket of blood, but none showed on the ultrasound. so, i continued to swell...painfully so and on the last day, the day that dr. doom walks in and says that he will release me, but that dr. kickass(the kidney chick) didn't have much to say. funny, i thought she had a lot to say and all good! my kidney is good, we just need to keep it happy. that's a win as far as i am concerned, more work for him tho! sounds like they need to get on the same page...or maybe its me misunderstanding. anyway....he decides to order one more set of labs and MORE FREAKING FLUID BEFORE I AM RELEASED!!! NOOOOOOOOOO!!!!! i'm going to burst....the edema was manageable...now its going to be terrible again! so, at 9am i am told i am going to be released...by the time the order for fluid went through, and the vampire came to draw the blood(he was late cuz he hates to come out during the day) and then by the time all of the fluid and mg and K and sodium were pumped in me...i was released at 7 that night. swelling from edema and miserable. a day later, i developed a HUGE bruise on my side...about the size of an 8in frying pan. nice and purple. pretty. not sure where it came from, but it sure seems like it is a big ole hematoma breaking up and moving through my muscle and fat tissue with the edema. arrrrggggg!!!! its always something. i'll post a picture later when i can get one. it's good stuff. oh yeah, my creatinine was down to 1.7 before more fluid was ordered. thx for the going away present dr. doom! it was just great!

Pretty Bruise, huh?

the ER brings out daddy's fangs. (Hospital stay part 1)

last monday was a whirlwind day(the day of my last post). i called in to update my immunotherapy coordinator(she's one of dr. dooms assistants basically). i told her what was going on with the fluid and that over a 48hr period i had ballooned up and would need to think about what we were going to do in order for me to get some relief. she asked if i needed to schedule a para and i told her yes, but that dr. doom probably won't want to do that without some sort of plan. she put me on hold to talk to him. as i suspected, he didn't want to let me be drained without admitting me to the hospital so they could keep a close eye on my other kidney and immediately give me whatever they thought i might need to protect it. okay, decision time for me. every single time i have been admitted to the hospital, i come out 15 to 30lbs heavier with painful edema which ends up taking 6 weeks to get off and half of it ends up going to my belly anyway. BUT, the fluid right now is causing terrible indigestion and making it difficult to eat or drink enough and i'm not getting much sleep due to the indigestion and discomfort either. both the fluid and the edema make it difficult to get around and get enough exercise. so, after weighing the options, being admitted and getting drained and seeing the kidney specialist to let her run all of her tests at once and then just dealing with the edema when i got out seemed to be the lesser of two evils this time.

this was a VERY difficult decision for me....i actually cried over it because i hate being in the hospital so much, but i had to do it. i called back and told the coordinator that i wanted to come in with the understanding that unless absolutely necessary, i wanted to be on the slowest of IV drips....KVO which is "keep vein open". if my labs show i need more, so be it, but pumping it in fast just doesn't work with my body...it can't process it quickly enough and it goes straight to my belly or turns into painful edema. okay, great....got that straight. we'll be there as soon as we can to see dr. doom and then on to the admitting process to the hospital. relief was on its way...yippie!

the appt. with dr. doom goes fine....he drives home again the warning of my kidney function and then says that we can't get in for a para appt today. he says that he wants me tapped sooner rather than later so he is going to send us through the ER...that he has already talked to the triage dr. there and he is expecting me. ok, great! we didn't know any better at that point that this was bad.

one of dr. dooms nurses wheels me down to the ER to check in, then just leaves us there and says "good luck". after just under 2 hours in the swine flu infested & paranoid waiting rooms (smooth move since my immune system is compromised at this point from being on my meds for 9 wks) we make it into our own room in the ER. another hour goes by and no one seems to know what is going on. they don't have orders for me yet, then they have orders, then they don't again. WTF is going on?! FINALLY, around 7pm,(this whole debacle started at 3:30 mind you), a PA and the lead ER dr. whom we promptly nicknamed Doogie Howser because he looked old enough to be a resident maybe, not the lead ER doc for the night. anyhoo, in they walk, ask the typical questions, the same ones that 4 other people have asked since i got 2 the ER while the PA starts to get me prepped for the para. at this point, my dad and i begin to realize that they have absolutely no idea what they are doing and that there is no way this is going to be good. dad's fangs may need to come out tonight.

now, i know i am not a dr, my father is not a dr., although he has had some training at John's Hopkins and knows his way around a body and how it works. HOWEVER, we have seen enough paracentisis performed on me to know how to do one and how NOT to do one. the first clue, the PA picks up the tube that connects to the catheter and asks "what is this for?". uh-oh. next clue, Doogie's answer "hmmm, i think it goes on here." he then proceeds to puncture 1 of the pressurized glass bottles and then puts it on the floor. these bottles are pressurized because once the catheter tube is in position in your abdomen, you then insert the tube with the needle on the end into the cap of the bottle in order to create the vacuum or suction needed to syphon the fluid out of the belly. thanks to doogie and his girlfriend, they have ruined 1 bottle within 30seconds. (bottle #2 was wasted shortly thereafter when doogie realized that you can't just line up the bottles on the floor ahead of time because they're aren't enough tubes). not the sharpest knife in the drawer....your future health care provider options are doogie and doogie-ettes. scary. okay, i digress...dad and i share a few "WTF" glances, but still, we give them the benefit of the doubt and let them proceed. next up is the numbing needle. doogie tells the PA to go in with a "zig-zag" motion and then follow that up with the same motion when you insert the catheter needle in order to minimize the leaking of fluid upon initially tapping into the pocket. WHAT?!?! zig-zag....with the needle?! that sounds like its going to hurt....and boy did it hurt. never have they mentioned this lovely technique where i normally have it done and now i know why. i actually cried just during the numbing part because it was so painful. btw, i asked the PAs in the normal place later if they had ever heard of that and they looked at me like i was crazy. i shoulda known.

next, after im numb, they try to go in with this contraption that resembles the needle and cath that they use in the main hospital, but it also has this pressure valve attached to it that is a piece of crap. it didn't work right, but they kept messing with it. meanwhile, they weren't even in all the way to the pocket. they were getting "too much resistance". i ask if they had cut a little slit with the scalpel in the surface to relieve the friction upon entry...opps, no, they didn't. they try that. they still can't get it to work. after what seemed like forever but was probably only 5, maybe 8 minutes. they give up. apologizing profusely. then doogie asks if i would like to try one more time since i am already numbed up. i say "sure, im numb...might as well try". so, they dump the first $500 tray of prepackaged prep tools and grab another. they try again, i feel the hot liquid pouring down my side, but they didn't truly get the catheter in all the way and as they messed with the stupid plastic valve thingy on their expensive little unnecessary contraption, it sputtered and then quit. strike 2. they didn't get a chance to have a strike 3. i was done. they cleaned up, apologized profusely again, bandaged me up and said they'd be back.

8pm rolls around and we call for the nurse to ask WTF is going on and when i might be transferred to a bed in the main hospital. at this point she proceeds to tell us that they are waiting on the orders FROM MY DR. WHAT!!!!! how in the hell can you be waiting on the orders still when my dr. went home hours ago and i have been here for hours. the fangs begin to grow.....dad calls the on call dr. for my dr. he lets her know what is going on and then we wait. doogie shows up around 8:30pm and starts "politicin" because by now we have threatened to walk out since i would be more comfortable in my own bed at this point. we would have walked out except for the fact that we needed someone to take my IV out to leave. dad very calmly, yet forcefully goes through what has become our day....with fangs gleaming just enough to drive his point home. it reminded me a little of the scene in Teen Wolf where the dad shows his "wolfness" and growls at the principal....but doogie didn't pee his pants tho....he was too cocky and borderline condescending. i think his fallback career is politics. doogie promises a bed within an hour, then back pedals and says "well, they are really fast here and we should have a bed ready soon"

luckily for doogie, dad had just fed the night before so there was no need to strike at this point. 9 or 9:15(ive lost track at this point)...doogie walks in and says "okay! we have a bed. see, told you we were fast. and i didn't even pull any strings...they are just that streamlined" give me a freaking break doogie!

by 10pm or so, i was in a room, in a bed and being checked in by John who was the slowest check in dude ever! by 11:30 i was completely checked in, dad's fangs were tucked away and i was heading off to sleepy land for the night....hoping that the para being done by the good para people would be scheduled for early in the morning and also hoping that the double fail on my left side didn't cause me to swell up like humpty dumpty overnight.

slight improvement...better than nothin'

if you've been following my blog for the last few posts, this will make complete sense to you, if you haven't...go back and read a few to catch up.

wed. creatinine was 3.82
thur. creatinine was 3.36
fri. creatinine was 2.7

i normally range between 1 and 2....2 being the high normal, but less than 1 is best.

i was doing fine with the iv fluids each day until saturday....then the friday fluids went straight to my belly....sunday was worse and today(monday) is no better. it is so uncomfortable it starts to drive you crazy. it makes it difficult to eat/drink and keep things down, it gives you terrible indigestion, its generally uncomfortable all the time because of the pressure it puts on your inards and it also makes it very easy to strain what little stomach muscles i have left. it also makes it difficult to find a good position to sleep in for all of he above reasons. i guess its like having the worst pregnancy that never ends until someone pokes my side to let out the fluid. which, as we now know, i can't or at least shouldn't do anymore unless we can figure out a way to protect the other kidney.

that's enough bitchin' just wanted to give a quick update about friday and also that i have an appt with a specialist on tues. to see if the damage is reversible. the improving numbers seem like a good sign to me, but what the hell do i know.

the raw deal....and i wish i were talking about veggies.

first, i said i would explain about the dehydration issue and what it is doing to my body and what is causing it. many things are causing it....my inability to drink enough to stay hydrated, my inability to eat enough protein and keep enough in my system, the building up of fluid in my belly and then robbing my body of what little fluid and protein it has by draining 3-4ltrs off at a time ultimately "shocking" my system. because of these things, this is what the body does to compensate.

shocking my system with the large paras is taking its tole on my other kidney and since ive only got one good one, they are very cautious with it. when i shock my body with the drains, my body compensates with a sort of "osmosis" that takes place. when they drain 4 or even 3 off, it suddenly creates a void and my body wants to fill that void. so, fluid from my vascular system, my major organs (heart, lungs, kidney) is essentially "stolen" and goes to the void to even things out. your vascular system is basically a closed system. oxygenated and nutrient filled blood leaves from one side of the heart travels around and separates into many tiny capillaries that meet up with another set of capillaries which take the "used" blood back around. (to put is very simply). at any rate, the vascular system needs 5 ltrs of fluid in order to function correctly. when you rob it of this fluid, certain organs begin to deteriorate and lose functionality. this is what dr. doom believes is happening to my kidney because of the dehydration. its not just a matter of drinking more....its much more complicated than that. one way to possibly help this is to take a little at a time....thus the reason they pushed for the tap/tube thing in my belly. this is all of a sudden a big concern because my creatinine level went from a 2 to a 3.82 in two weeks and even after receiving fluid yesterday, it only came down to a 3.36 or so. (sidebar: Creatinine is made at a steady rate and is not affected by diet or by normal physical activities. If your kidneys are damaged and cannot work normally, the amount of creatinine in your urine goes down while its level in your blood goes up.) this makes dr. doom VERY nervous. so nervous that he is bringing in a kidney specialist because he is worried that we are getting into non-reversible territory and headed towards renal failure. this of course would be bad since lefty is shot and righty is all i've got.

so, he is scheduling a consult appt with the renal specialist so that she can assess the situation. go over my meds to see if there is anything that could be causing or adding to the problem there, steps we can take to help, etc, etc.

now everyone should cross their fingers, toes, arms, legs for righty! he needs all the help he can get!

4get the pig flu...i've got my own drama

okay. so we had to cancel the trip to mexico. the bride and groom have been jumping through hoops to get things moved somewhere else and they managed to get it moved to a beautiful hotel in St. Thomas, but, alas, we had to cancel just the same because i am absolutely terrified of being in public places right now with my white cells down and all that jazz. so, swine flu messed up our plans, but i've got more important things to deal with right now.

i am on my way back to the infusion center for the 2nd day in a row due to low magnesium, low calcium, low potassium, major dehydration...you name it...im not doing so hot.

there are a bunch of details regarding the cause of the dehydration and the fact that i need to come up with an alternative plan to the 3-4ltr drains i have been doing. they take to much of a tole on my body and i will explain in a later post. ive got to head to the infusion center now.

Some normal life stuff for a change....

im sitting here trying not to shove needles in my eardrums as i am forced to listen to the incessant banging caused by the fact that i am having my windows replaced in my house. 21 of them in fact. i am also being forced to listen to a part bark, part howl and part doggie scream of agony which is being triggered by the very thing that i myself wish that i could escape. it is not my dog, it is a new dog behind me that seems to be in agony daily. i love animals, but i have to admit it is quite annoying to hear his cry. like i said, it is part bark, part howl and part doggie scream....that's the best way i can describe it. in general, it is the 2nd most annoying dog bark i have ever heard. the first is my next door neighbors dog who has recently taken to the "shriller and louder the better" tone of barking. my dog can't even stand that one. anyway, i digress....

it's all good tho...my house is 18 years old and after getting a new roof last year and squeezing one more year out of the already half rotted windows, i had to bite the bullet and replace them. it's a good time to anyway with the energy saving tax credit that is being offered right now. luckily the back windows are just fine, so i am only having to replace the front and side ones. one never realizes how many damn windows you have in your house until you are having to write a check to replace them....or clean them all. all of the windows should be in today...tomorrow they will be replacing any damaged/rotted trim all around the house and painting all of the trim. so, after tomorrow, the house should be set for a while and i will be on to the next thing on the never ending homeowners "to do" list which is update the landscaping.

oh yeah, beansaver news. i still have a para scheduled for wed 29th and a check up with dr. doom right after. hopefully the para will last through my trip to mexico...my bf said worst case i will just look like im preggers....that actually made me laugh and realize that if my belly is bloated down there, too freaking bad...im going to try to have fun regardless...oh, and stay away from pigs. :P

that's life for now. tootles! im off to find my bb gun.......

It's always somethin'!

after my last post, i had a para on april fools day. well, maybe i was the fool for scheduling on that day because i had the worst reaction to a para i have ever had. when they go in, they go in on my side sort of around the level of my belly button....pretty much where they won't hit any major organs and coincidentally where a majority of the fluid collects. well, the para itself seemed to go as usual until it stopped flowing halfway through the 3rd ltr. the tech(who happened to be the one that i have not had good experiences with in the past) tried to pull the catheter out some to see if that would help. it didn't. i asked him if he wanted me to roll to my side a little cuz that helps sometimes...he said no. i guess he would rather play around with the damn thing than let me try an easy solution first. so, he played....pulled it up some, then a little more, then a little more, then he twisted it one way, then the next.....could it be the bottle? "no, they never lose their pressure". okaaaayyy....so, finally, after playing around with the thing sticking out of my belly for a while, he calls a PA. another PA comes in, one that i have had before and she checks his handiwork. after a brief check she asks if he has tried a new bottle yet. "no, they never lose their pressure." she tells him to try a new bottle and OMG....its freaking magic....it started flowing again. DAMNIT! he was messing around with this thing sticking out of my belly and the whole time it was a freaking bottle failure. ugg. it is the aftermath that was the worst though. i don't know if it is in any way related, but i gotta believe that it is to some degree. i swelled from my chest area all the way down to my hip. i looked like half an easter egg....my bf actually called me humpty dumpty...thanks hun. LOL. april fools and i was the fool this time i guess. the swelling didn't start to go down until saturday and this was done on a wed! as many paras as i have had and this was a first....it's always somethin' isn't it?!

once the swelling went down, the following week went pretty well. i was in week 6 of 25mg sutent and had enough energy to run quite a few errands. got my hair done(gotta cover up the white), passport picture taken and passport stuff gathered and sent off, easter basket shopping for the kids, etc. also had a great easter holiday with family and friends. the calm before the storm....

after easter, i had a triple header. a para appt on monday 13th, 3month CT scan on tues. 14th and dr. doom follow up appt on wed 15th. phew. CT showed that i am holding steady for the most part....the only thing is that there is some thickening of the abdominal wall which dr. doom believes to be causing the fluid buildup and the same thickening has moved up above the diaphragm which is probably what is causing the fluid around my lung. he believes that it has been there for a while which is why he said i am holding steady. dr. doom likes to draw sometimes and it is always fun when he does. it's kind of cute too, so here is an original dr. doom sketch explaining the thickening of the lining, where they go in for the para vs. thora and where the cyst on the kidney is resting. :)

Original Dr. Doom Artwork

he was very happy with the fact that i am holding steady....so was my family. i however, am not satisfied with holding steady....i want more. more progress, more success, more death of cancer cells damnit! everyone tells me that holding steady IS amazing progress for this terrible disease, but i just don't want to accept that. i want to beat it...hold on long enough for that miracle drug. sutent is already a miracle drug in that it shrunk the cancer 60% or so and has now kept it at bay since 09/07. now i need a miracle drug to kill it more...reduce it more...a cure!

but wait....there's more.....
i am going to mexico, Playa Del Carmen to be specific, for my friend squirrel's wedding. my ct showed that i had built up fluid around my lung again since the last thora in jan. dr. doom said that if it wasn't bothering me, i didn't have to have it drained right now, but when he heard that i was going to be flying, he said that i should have it done so i wouldn't risk any discomfort during my flight. soooooo, this morning i had my 2nd thora. thankfully it wasn't nearly as painful as it was the first time. i'm feeling pretty good actually. finally, something worked in my favor again. things working in my favor seem to be few and far between.

aight...well, that's it for now. got another para next week (29th) as well as a checkup with dr. doom to make sure i am good to go for the mexico trip which is may 6th. woohoo. sunscreen and sombreros baby! i'm ready....oh, and a quick little wedding too. :)

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