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.