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.

steady as i go....

i've been back on the sutent for almost two weeks. it will be two weeks on monday actually. same ole side effects. nothing new....super tired. the week of thanksgiving i have my 3 month scans and follow up appointment to find out the latest results....whether the sutent is still working. hopefully i will hear good news and be able to have a good thanksgiving holiday.

on a separate note, i did find out that i was approved for social security benefits. sure doesn't pay for much, but its something and beggars can't be choosers right! also found out the my disability payments have been approved until the year 2041! w00t! that was even better news! thank goodness for great company benefits.

cross your fingers, toes, legs, arms...you know, all the usual things to cross the week of thanksgiving team beansaver!

Break time!!!!

w00t! w00t! i had my usual 3 week check up today and dr. doom said he wanted to try a new sutent schedule on for size. i am to go 2 weeks on 1 week off and see how that works for me. he said that there is some data that suggests that with clear cell RCC at least, frequent breaks has increased the amount of shrinkage. since my type of RCC is responding to sutent the same as clear cell, he wants to see if it will also respond to this type of schedule. i don't care what his reasons are, all i know is that i get more breaks which means less side effects which means a happier me! yippie!

my next appt. isn't until thanksgiving week...i will have my 3 month scan that week as well. this is one time when shrinkage is a good thing. hehe. :)

anyway, that's all that i have to report today. happy halloween team beansaver!

plop plop fizz fizz oh what a relief it is...

well, i was off of the sutent for 3-4 days, ok, technically 5 days. i started back on monday the 13th. just having a few days off made a big difference in the % of my day spent on the pot. i actually was able to go 2 days with only going poo 1 time! woohoo!!!! and it went "plop plop" rather than sounding like a chunky liquid explosion.

SOLID...solid as a rock!!! my poo was solid...and now im feeling so hot hot hot hot hot hot hot hot....

hopefully you guys remember that song, otherwise it just looks like im losin it. :) well, it prob looks like i lost it a while ago. ha!

at any rate, the solid poo celebration was short lived because within 3 days of going back on the sutent, solid was once again not a member of my bathroom vocabulary list. have you ever noticed that your vocabulary list changes based on what is important in your life at the time? like when someone is dating or interested in "hooking up" with a bunch of people, they have a million words in the front of their mind which either describe or mean "sex". or for cultures that value something, they have a crapload of words to describe or refer to that most valued thing...IE money, moola, cash, cashola, bills, benjamens, coin, bucks, etc. etc. so, in my world, i think im up to approx. 30 different ways to describe what has just exploded from my ass....sorry to be so crass and blunt, but hey, that's life baby...why sugar coat it?! Mmmm...sugar coated anything sounds good.

so, that about sums it up. nothing else new to report...just the usual fatigue and i can't taste a damn thing. everything tastes like cardboard...well, except for sweet things. for some reason my taste buds can still taste sweet, but savory/salty, sour, etc. are out the window. really sucks cuz i LOVE food....those of you that know me from when i was a fatass can confirm this. i got along with food really well, now....not-so-much! this side effect really sucks because as some of you are well aware, my dad can cook his ass off...i'm talkin' yummy, tongue smackin' your lips till they are swollen yummy. port wine reductions, cantalope bisques, blood orange and fennel salads, all yummy, all fresh, all the time. i'm going to dad's for din-din tonight....wonder what tasty treats will be on the menu and i wonder if i will be able to taste anything. i sure hope so!

well, team beansaver....as always, thanks for reading and praying and crossing fingers. love to all my peeps!

ok, so, after i posted this, my mom, yes my MOM who is usually much more proper than i am....MUCH more, sent me this link. i haven't laughed so hard in weeks. thanks for the inappropriate humor mom! love ya!

http://www.poopreport.com/Consumer/alka_plunger.html

I highly recommend the KFC Poo Report....it is priceless.

Are we there yet?!

so, i had my usual 3 week check up appt and it went as usual. dr. doom wanted me to take a 3 or 4 day break to see if i could get some relief from the mouth sensitivity and then start back on the sutent before the fluid had a chance to build up. today is day 3 and i have no sign of relief yet...these meds really build up and start to take their tole. i've also not been feeling well for the past few days...not exactly "sick" but like i'm suffering from really bad allergies or something. at any rate, i finally felt a little relief last night, but i'm still not feeling so hot. constantly battling an "off" feeling and a lot of nausea. :(

anyway, just wanted to give a quick update since i had an appt. there really isn't much to report.

Nor'Easter.....Snor'Easter

The beach is beautiful despite the brewing Low offshore that could become the first nor'easter of the year. just look for yourself. bring it on mother nature, just give me some sun and sand and i'll brave the 30mph winds with 45mph gusts! :) enjoy the pics!

Cleared and ready for vaca

dr. doom wanted to see me a week after my last drain...today was the day. everything went as usual...the plan is the same, to stay on the 25mg sutent for now and manage the toxicity vs. effectiveness. maybe a 6 or 7 week on 1 week off schedule and maybe increase the dose at some point....basically its trial and error at this point....see what i can handle and see how long it is going to be effective. he told me that since i have been on the drug for so long and i know my body and how it reacts and all that i can pretty much push myself and/or manage the cycles myself....to simply call or email them when i need a break so they know what i am taking or not taking. i will still continue to have my check up appts. every 3 weeks, but he decided to empower me a little this time with my treatment schedule. he also said that if during my breaks i continue to build up fluid and need to be drained, then of course we will do that.

speaking of being drained....so far so good. i seem to be maintaining from the drain last week. today i was 10lbs lighter than my last appt. (they weighed me before i was drained and they took approx. 9lbs of fluid off last week) so, i am maintaining and lost another lb. which could have just been water since i was a little dehydrated today.

i was also cleared to go on vacation next week...except dr. doom told me to get a big hat since my skin is going to be sensitive to sunlight and i will burn easily while on the sutent.

beautiful litchfield beach here i come!!!

Na Na Na Na Na Na Na Na BATDOG!!!!!!!

Episode 2: K9 Fashion faux-paw.

POW! KABAM!!!! SMACK!

ok, usually i make fun of people that dress up their dogs....well, now i have to. vets orders. the damn cone collar is irritating his chin and causing him to scratch the hell out of it and lose his hair, so he told me to not put the collar on him anymore and put him in long sleeve t-shirts. so, i decided that kids pajamas would probably fit him best. i went to target and got him batman pjs. the logo has a motion detector in it and whenever he moves, it lights up. too funny. the damn pjs came with a cape and everything. looks like he's all ready for halloween!

Better than lipo...

well, i had my 3 week check up yesterday(was supposed to be today but they moved it up so i could get an appt to be drained sooner). i had the paracentesis appt afterwards and they pulled 4ltrs off again...approx. 9lbs. woohoo! shorter recovery and faster results than lipo! :) the pattern that seems to be developing is when i take a break from the sutent, my belly begins to fill with fluid...when i start back on the sutent, it can't fight the fluid that is already there and it continues to build up. BUT, if i am drained while i am already on the sutent, it seems to be able to maintain and even reduce the fluid more. so, there is a sort of "cap" as far as amount of fluid that the sutent has an effect on.

other than being drained yesterday, my check up went fine...no major side effects yet except for being in the potty a lot...that one always shows up first. my labs showed that my potassium was low and my calcium was low again. they are calling in a Rx for the potassium supplement and i am supposed to start back on the daily tums again. otherwise it is business as usual.

i am going on a beach trip. i can't wait for some nice relaxing beach time. HURRICANES BE GONE!!! i'll post some pics when i get back. its not for a couple weeks, but i am excited now! :)

tootles team beansaver!

Perfect Puppy Patient

it's official...my dog is a better patient than i am. he is doing great! no pain meds and he's running around as usual. i actually have half a mind to give him some benadryl or something to make him sleepy because he is not supposed to be running around!!!!

he's on some meds for the next few days and i have to change his bandage every other day. i'm also supposed to check it every day, but if you know anything about bandages and animals and the way you have to wrap the leg, you know that once you undo the thing, you have to do a new one cuz it will never go back on right. so, we'll see if i can manage to only change it every other day while checking it every day.

oh, doggie surgery is a crapload cheaper than i thought it would be. for 4 days in the kennel, teeth cleaning, 3 different types of meds, surgery, bandages, etc. etc. the grand total was $770. w00t! i thought for sure i was looking at a $1500 bill at least but nope...it was half that. not bad. he didn't need a cone collar either because he is a good boy and isn't messing with the bandage at all. yea!! what a good boy!

well, he didn't need the cone collar at first...now he does, thus the pic above. he's on the 3 strikes and your out plan. he gets to chill without the collar but if he gets caught licking his wound 3 times, the collar goes back on. so far he only has it on at night and a couple hours a day. he's still a good boy!!! :)

What a good boy!!!

My baby came through his surgery with flying colors. the tumor was approx. 1in and they had to cut into the surrounding tissue another cm or so to make sure that they got everything. he is all stitched up, but since this type of surgery tends to swell(so they tell me) and put too much pressure on the sutures, they had to make little incisions on the sides to relieve the tension. they told me it kind of looked like a potato with the little dimples. so, he is all stitched up and bandaged up. i will have to change the bandages for a couple days, but i am used to bandaging animals since i've been around horses for most of my life and have had to take care of several injured beasts. you'd be surprised what animals can get themselves into...sometimes fact is stranger than fiction. i once had to take care of a mare who managed to break her leg....changing the bandages on that was sure fun...insert sarcastic look here. she was a tad on the crazy side anyway...you could never turn your back on her cuz she might be rearing or hauling off and nailing you with her back leg when you turned back around. of course her mother thought she was an angel. ha!

anyway, i pick him up today. i have no idea what doggie surgery costs these days, but i'm sure it is pricey. i'll let you guys know the damage as i am sure you are curious. also, i'll be nursing him through his recovery over the next few days/weeks. my mom nurses me through recovery, now i am the doggie mom nursing my baby through recovery. don't know why i find that funny.

thanks for the finger, toes, arms and legs crossing for my pup! i will post a picture of him once i get him home....im sure he's going to look pitiful and have on one of those Elizabethan collars. hehe.

back to the usual topic....me.

i was off of sutent for 9 days...long enough for the side effects to subside...mostly. i didn't get full taste back in my mouth and my blisters on my fingers aren't quite gone, but my belly started to fill with fluid again. it was starting to get uncomfortable so i called and talked to my immunotherapy coordinator and she said to go back on the sutent to try and help the fluid build up. so, my break was short and i am back on the sutent. the runs came back right away, but the other side effects are slow to show as usual...thank goodness. this is the plan for a while at least. dr. doom wants to try to get me on a 5 or 6 week on 1 week off cycle with the 25mg dose since it seems to be working pretty well. i will keep the usual 3 week check ups. maybe he will think about switching to the 37.5mg dose again in the future, but for now im sticking with the 25mg. long term plan is to stay on the sutent until it doesn't work anymore then try something else. that's all the new info i have right now. we are in one big trial and error cycle...testing the limits of my body...how long i can stand taking the sutent...when do i need a break...how long can the break can be...how long will it continue to be effective. yadda yadda yadda...

You can't make this sh!t up....

before i get to the subject of the title of this post, i've got to give a shout out to my ECU Pirates for coming through at the last minute to whoop Va Tech's ass yesterday. WOOHOO!!!! i must admit, i did not have faith in my Pirates, but they restored that faith. I WILL NEVER DOUBT YOU AGAIN O FAVORITE COLLEGE O MINE!

second, i grew up near the Chesapeake bay....crab country. i miss a good crab cake damnit. the one thing they know how to do down south is mess up a crab dish. people....green peppers RUIN crab flavor. yuck! and, let me tell you, if you are at a restaurant that is 100miles or more from the Chesapeake bay, DO NOT BELIEVE IT when the menu says "Maryland Style Crab Cakes". they are lying. what you will get is a crab cake with too much filler, green peppers and stringy, nasty, tiny bits of crab meat...nowhere will you find true "lump crab" unless you are near the Chesapeake bay. so, i miss a good crab cake. yeah i know you can order them and have them shipped to you, but that's just not the same. so, here's another shout out to TRUE Chesapeake bay style Maryland crab cakes. YUMMY TO MY TUMMY!

this is my pup...when he was a pup....he will be 8 on halloween.

OK...on to the real meat of this post. pun intended. you can't make this shit up if you tried. i found out the other day that my dog, yes, my dog, has cancer. i took him to the kennel the other day which also happens to be his vet. they asked if i wanted them to look at anything and i told them to look at a couple skin tags that he has below his left elbow. he gets them all the time and i have had them looked at before and they always tell me that they are fine and i can leave them alone if they are not bothering him. well, i had them look at them this time because something told me to....i just had a feeling that they needed to look at them again. well, later that day, i get a call that they are recommending he have his teeth cleaned cuz he has a cracked tooth and that if i want, they can take off the skin tags while he is under for the teeth. they tell me that one of the skin tags is a little larger than the other and that it might require a couple stitches, but otherwise it should be straightforward. great...do it. she tells me that she will call the next day after he wakes up from everything and will let me know how it went.

so, the next day i get a call...his teeth cleaned up great, the cracked molar isn't bothering him so they want to leave it in for now and just keep an eye on it, the skin tags came off fine but the one that needed stitches became "angry" when he was in recovery and this is not normal. she took a tissue sample via a syringe and looked at it under the microscope and determined that the pathology was cancerous. WTF?! are you freaking kidding me?! now my dog has cancer. is there something in the water, something in my house? come on...my luck has got to change soon! she tells me that if i agree, another vet (one that knows me and my dog) can perform surgery sunday(today) to remove the entire tumor from his forearm. she says that this type of cancer has a good prognosis if the entire tumor can be removed. HELL YEAH REMOVE THE DAMN THING! ASAP! fix my baby! at least one of us can say we are in "remission".

i don't know exactly what type it is...i didn't catch all of the details she was telling me because i was in shock about my luck. i was thinking "what's next?". i am supposed to get a call with an update today after his surgery. i'll post what i find out. this time cross your fingers, toes, legs arms and eyes for my dog!

this is my pup now. what a sweetie!

Lovely new side effect...

opps! i forgot to mention why i am on a break from the sutent. i'm not one to quit, but damn, i just couldn't take it anymore....i needed a break. besides the usual side effects i experience, low white cells, low platelets, low hemoglobin, the runs, sore mouth, lack of appetite, sensitive fingers and weight loss....i was lucky enough to get a new one...blisters on the hands. yup, those nasty little bastards that i have read about finally came looking for me. mine aren't really best described as blisters tho...they are more like callouses or corns that just keep getting bigger and bigger and new ones appear daily. they itch like crazy and are painful when touched. i had a bunch on my right thumb and my middle finger. try picking things up when you are right handed....the locations were perfect for maximum annoyance! made it hard to play wii damnit!! :) thankfully, like all of my other side effects they subside over a week or so when i go off the sutent. they have shrunk considerably now and just feel like normal callouses...with a yellowish tint to them thanks to good ole sutent.