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. :)