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Break time!!!!
2008-10-28 22:13:00
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!
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plop plop fizz fizz oh what a relief it is...
2008-10-17 16:08:00
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 ...
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Are we there yet?!
2008-10-11 19:23:00
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
2008-09-24 16:16:00
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
2008-09-17 21:52:00
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 mainta...
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Na Na Na Na Na Na Na Na BATDOG!!!!!!!
2008-09-17 21:52:00
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...
2008-09-10 16:18:00
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...

Perfect Puppy Patient
2008-09-02 23:46:00
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 coll...
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What a good boy!!!
2008-09-02 17:43:00
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 bac...
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back to the usual topic....me.
2008-08-31 20:08:00
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...
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You can't make this sh!t up....
2008-08-31 15:42:00
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...
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Lovely new side effect...
2008-08-26 18:32:00
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 considerab...
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My ears were burnin'!!
2008-08-26 18:07:00
Monday between 12 and 1 my ears were burnin'.....why you ask? well, because dr. doom was presenting my case during the monday conference because i had responded extremely well to the sutent....AGAIN! yippie! i had my scan on the same day as my check up appt. so the radiologist hadn't had a chance to go over them yet, but dr. doom looked at them with all of us and gave us his take on them. below is the play by play....first, there was some fluid in the bottom of my left lung that had been there for some time, but he wasn't too worried about it...this time on the scan...it didn't show up at all...completely gone.second, i had up to 50% reduction in cancerous tissue around several of my lymph nodes...GRRRREAAT!!third, there were 3 lesions on my liver on the previous scan that were now gone...however, there was a new spot that dr. doom wasn't sure about and needed to consult with the radiologist about.fourth, and yes, i saved the best for last...the cancerous tissue in and around m...
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Happy Anniversary Lefty!
2008-08-16 20:22:00
well, maybe not the happiest of anniversaries, but Aug. 22nd marks the day that i found out about my cancer and the day that my life changed forever. its been a long 12 months and i have many more months of fighting to go, but 12 months is 4x longer than my dr.'s lowest life expectancy estimate. so, eat your heart out dr. doom. CDRCC aint getting rid of me that easily!Wed. Aug. 20th is my next scan to see what lefty's been up to...sneaky little bastard that he is. the last scan was back in May and it was simply to get a benchmark after surgery. i was not back on any meds at that point. on scan day i will have been on a full cycle of 37.5mg(4wks) and a constant dose of 25mg for 7 weeks. hopefully it is still doing something in there! the side effects are kicking my butt so it better be kicking some cancer butt in addition to mine.i'll update the blog as soon as i can once i get some news about my scans. one thing i can go ahead and report is that the fluid is not building up nearl...
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Drink your milk!
2008-08-01 16:24:00
quick update. they got my labs back and my thyroid looks good, but i was low in calcium. so, i have to chew 2 tums twice a day for the next 3 weeks until my next check up. i was surprised that calcium was the only thing that was low since i am poopin' everything out so fast...i thought for sure i would be deficient in more minerals than that. usually my potassium and my magnesium are low, thankfully they are fine.hopefully this will be the last post for a couple weeks...until my next check up. remember, no news is good news right now. holding steady with crappy side effects..that's my story and im stickin' to it! :Pon another note...i got a wii finally!! w00t! challengers...any challengers? who wants to kick the cancer patients' ass in some Kung Fu Panda!?
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Steady as she goes...
2008-07-29 22:05:00
2wk check went as usual. the plan now is to not rock the boat...if it aint broke, don't fix it...pick your favorite cliché. i am going to stay on the 25mg constant dose of sutent because it seems to be maintaining the amount of fluid in my belly...maybe even reducing it slightly. so, i am going to stay on this treatment for the next 3 weeks until my next set of scans. if the side effects get to me too much, dr. doom said i could take a week off or so and then start back...to just call in and let them know.so, holding steady i am. side effects are the same. sore mouth, very tired, constantly in the bathroom, hair growing in white and sensitive finger tips. i am going to start taking naps. i just get too cranky because i am so tired so a nap is what i am prescribing myself. they tested my thyroid today to see if they need to adjust the dose of synthroid since this may still be contributing to my fatigue, but i haven't heard the results yet.anyway, that's about it for now. oh! than...

Best laid plans....
2008-07-21 21:15:00
well, the triple threat plan of attack didn't work. i continued to build up fluid in my belly and finally, during my last check up on july 15th, dr. doom and i agreed to schedule a pin cushion appointment while on the 25mg dose to see if once drained the sutent could "maintain" the current rate of fluid buildup. it was unable to reduce the fluid already there AND stop additional fluid production as the 37.5mg dose had been able to do previously.so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap w...
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the triple threat...fluid be gone!!
2008-07-02 15:22:00
ok...open mouth, insert foot. in my last post i was complaining about the side effects kicking my butt late in the cycle and said "put a fork in me cuz i am done with this cycle". well, that'll teach me....one week into my two week break, my belly was swelling back up to the point where it was really noticeable. damn, i was just starting to be able to taste again!! i went in to see dr. doom and he agreed there was fluid building back up, but didn't want to schedule me to be drained.attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and h...
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To quote "The Rock" .... i think he said it...
2008-06-23 18:44:00
ok, so i was doing great for the first 3 weeks or so, then the side effects LAYITH THE SMACKITH DOWN! i think The Rock said that....i know he said "Know your role....and shut your damn mouth" but that didn't really work (lisa, help me out here). anyway, i have been so tired and my mouth is Uber sensitive during this last week....thank goodness that my last pill is tonight and the side effects can start to subside. ketchup even freaking hurts to eat. :( put a fork in me cuz i am done with this cycle. uggggg.
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3 week check....NO FLUID, YIPPIE!!!
2008-06-23 18:37:00
so, i had my standard 3 week check last week and everything is fine. i was a little tired at that point and my mouth was starting to get sensitive, but the good news was that the fluid had gone down in my belly. my dr. was excited about that. he said "now, i don't get excited much, but i am excited about this!" haha....if he hadn't said he was excited, you wouldnt have known it. ha!anyway, just a quick update on the 3 week check and everything is fine....OH, we did decide to do another cycle after this one but to go back up to 50mg....my usual dose. Then at the end of that cycle, we will scan again. fun fun....
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You look Maaaarvvolousss!!!!
2008-06-06 09:16:00
shout out to billy crystal!ok, so i lost a bunch of weight during my recovery....well, about 20lbs, so not a BUNCH. but, my body has changed a lot because i lost both fat and muscle. (and a cantaloupe sized ovary which i never found out how much that sucker weighed). anyway, i look like i've been on a great diet, not like i have been to hell and back. the one bad thing about it is that i have lost all padding....and i mean ALL padding in my ass. not like i had much of an ass to begin with....i had a flat butt, but i at least had some sort of butt. now, i have nothing and it hurts like hell to sit for very long because my tail bone...bottom of my backbone bone... jams into the seat. it feels like i am a freak of nature and have grown a tail. needless to say, my workout plan is focused on building up a butt...simply for comfort! the best way i can describe it is if you were sitting on your elbow...yeah, that about sums it up. try putting the majority of your weight on your elbow and ...

The Magical Amount....
2008-06-02 15:32:00
The magical amount.....but not enough to hurt you.....the magical amount....its just enough to work!!!okay, so i stole the tune(along with half of the words) from one of those "Truth" commercials with the dancing cartoon horses.....anyway, my point is that the Sutent seems to be working. My belly is going down daily and i am NOT going to have to go in to be the human pincushion! w00t! w00t! it feels great to be reclaiming my body damnit! poor thing has been to hell and back and it is finally doing what i want it to do!so, short post, but full of good news! Sutent still works....dont know how well it works, but it's still doing something amazing in there...and i've only been on it for 6 days. THANK YOU MIRACLE DRUG.oh, on another front....i went out with a friend last night for the first time in 2.5 months...it felt wonderful....my life is slowly getting back to normal....its about damn time! I even helped bathe a horse yesterday...come on stamina...building...building....building ....

Back to the Future....Sutent!
2008-05-30 22:25:00
i officially started the 37.5mg dose cycle of sutent on tues. night. i will be done with the steroid taper on the 9th, so hopefully it will not effect the sutent too much and my fluid will go down in my belly without having to be drained again. that is the race against time....sutent working vs. the fluid building up to the point where i have to be drained again.go sutent...go sutent...go sutent!!!!will keep you posted on whether i am once again a human pincushion next week or whether sutent is winning.adios team bean saver!
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MmmmMMmm Sutent.....again....
2008-05-25 04:04:00
well, i had my "next steps" appointment with dr. doom on thurs. i still have fluid in my belly and the nodules are still weeping....the steroids don't seem to be doing much other than making want to eat everything in sight. he asked if i wanted for him to arrange to have my belly drained again....i said heck no, not yet, its not that bad yet and it hurt so badly for the 24-48 hrs after it was drained before...i am just not ready for it again. he said that assuming i have the same response to the sutent as i have had in the past, it will help the nodules, hopefully stop the weeping completely and then the fluid will be reabsorbed into the body. i am hoping for that. holding out for that actually....but, if the fluid builds up too much, i'll have to go in next week and be "drained" again. yuck. i must say, that the best feeling in the world right now is wanting food. after 2 months of not wanting to even think of food let alone eat it, i now have my cravings back and am eating anyth...

okay....here's the scoop....finally.
2008-05-21 22:56:00
after some of you read this, i hope you will be able to understand just a little why i have not been able to write or talk to most of you. i truly have been having the hardest time with this recovery, no bullshit. i will go over what else i have been dealing with since the last posts about my injured piriformis muscle.also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so,...
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having a rough time....
2008-05-17 14:38:00
sorry i haven't keep this up lately. i've been having a rough recovery. most recently, i had a bunch of fluid build up in my belly and i had to have it drained and was in the hospital for a week. hard to keep the blog up when you are feeling like complete shit, so cut me a little slack please. i promised to post more as soon as i am feeling up to it.thank you for your interest and support. i truly appreciate it.
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speedbump within the speedbump... :(
2008-04-19 18:47:00
this post isnt going to be the usual sarcastic kick cancer in the ass tone as i am still trying to recover from the surgery and it sucks. sorry i haven't updated the blog or talked to any of you, but i have been having a really hard time. plus, my meds tend to make me a little loopy, so my train of thought/writing is sometimes hard to follow.basically, to complicate things, i managed to injure the piriformis muscle in my left butt cheek. yeah, what the hell is that you ask? well, apparently i am unique and talented as well. the prirformis muscle is a little muscle underneath the larger glute-max, kinda smack dab in the middle of the cheek. the symptoms are similar to that of a sciatic nerve injury because the piriformis muscle tenses up causing all the muscles and ligaments that are attached to it to tense up and that puts pressure NEAR the sciatic nerve causing similar pain. my whole left side has been painfully tense and i have pretty much been in traction. the treatment is the s...

Just another speedbump in the road to a cure....
2008-03-28 22:29:00
thanks to all of my wonderful friends and family for all of your well wishes, support, flowers, bears, balloons, plant baskets, etc. i deeply appreciate everything and every member of team bean saver.well, as many of you know, dr. cold fish wasnt able to get the kidney out. they got the cantaloupe sized ovary out and it did have cancerous cells that were contained within the ovary itself, but they determined that they originated from the kidney and that my uterus and other ovary were fine, so they left them in. the kidney fought back and my surgeon wasn't able to get it out. lefty's last stand ended up NOT his last stand. basically, lefty had latched on to my colon and intestines like velcro which dr. cold fish did not anticipate. also, he would have had to sever my aorta as well as go chopping away at other organs in order to get it out and he didn't want to risk my life when i still have other treatment options with dr. doom. he was on the phone with dr. doom during and after m...
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And the winner is..........drumroll.....
2008-03-17 01:09:00
The Mission: Operation Lefty's Last StandThe Team: The Surgeon Generals11:30am the attack begins....CMC Main Hospital.Fingers, toes, legs, arms, eyes....everything is crossed. WISH ME LUCK TEAM BEAN SAVER!!!!
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UPDATE: Gonna be kickin' it oldschool
2008-03-12 18:38:00
had my final pre-op appt with the renal onc surgeon today....will be on my way to the generaal pre-op appointment at the hospital shortly.well, i thought that they were going to be closing me up using the cool plastic zipper thingy made by medizip that i posted a link to on a previous post, but today i learned that they are going to stitch me up the old school way. damn...i was looking forward the the whole "Frankenstein" effect with that thing on me. oh well.also, dr cold fish gave himself a 50/50 chance of getting the kidney out today. he said he is hoping that the tissue is soft enough that he can peel it back, clamp it and get to the vein he needs to get to. he said that the other vein(or artery) i dont know which one is which still...that he has to get to is no problem...its just one of them that he has concerns about.i told him that i was going to cross my fingers as they put me under so my fingers were crossed the whole time. he said he would cross his too....somehow i don't...
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