Whatchu talkin bout Willis?!

so, in my search for people like me out there...30 somethings that have been diagnosed with kidney cancer, the pickin's are slim. many personal blogs are about random drama in people's lives that few other people in this world give a rat's a$$ about...this one will probably be no different. although the main subject will be my cancer, i'm sure i will go off on random tangents about anything from mixed emotions to who cut me off on the highway today. im not an english major...i wont capitalize or punctuate correctly, i will change tenses and i will speak like a g33k from time to time. basically i will be me...because i can hide behind my computer screen and its great!

ps...i will also jump around...my mind is all over the place all the time...

Sunday, December 21, 2008

Christmas here i come!

follow up appt. went just dandy. dr. doom is glad to see my weight down. i'm not. i'm actually feeling a little like a skeleton, but i guess if i was too skinny the doc would do something about it. steady as i go again with this appt. the only thing was that i was low on magnesium again and had to go to the infusion center the next day to get a 3hour IV drip of magnesium and i am now on a daily dose of magnesium since my body seems to not be able to retain that mineral while on the sutent. many of you are wondering what magnesium does for you....a lot of people have asked me so i figured many more might be curious. well, the dr. told me that it helps your body function better and helps you process the nutrients in your food more effectively. will it help me with the fatigue? many have asked that as well....the answer is that i'm not sure. it would seem that in a round about way it should help with the fatigue since it will be helping my body get more out of what i am able to eat and keep down. hopefully that will be the case.

that's about it for now. i have felt like i might be coming down with something over the past couple days, but i can't tell if it is just from the magnesium boost or if my body is trying to fight something off. needless to say i have been resting a lot and being a big baby because i don't want to be sick for christmas. so team beansaver, cross everything once again for me that i will get over whatever is ailing me and that i will be well for christmas day! i hope you all have a wonderful holiday and an amazing new year!

Thursday, December 18, 2008

Christmas Overkill??

Many of you have requested to see the Griswald-isk set up across the street. well, attached are a couple pictures. i couldn't fit all of the lights in one frame for he full effect....need a panoramic setting and i don't have that on my camera. Plus, it was all i could to do bring myself to stand out there and play with the settings to get what i was able to get. for some reason the same settings i used to take pictures of my house didn't work with theirs.

anyway, notice how tall the snowman is compared to the car in the driveway. and oh yeah, the deer are the kind that move their heads.

The Snowman

Santa and Rudolph go round and round

Deer on the lookout!
on a side note, i can't even keep my lights lit...the top strand, yes the top one, not the bottom or the middle, but the very top strand of lights on my tree went out this morning. that's gonna be fun to try and find which evil bulb is at fault for that little dose of christmas joy. i love the holidays!

merry christmas and happy holidays team beansaver! time to get ready for my check up appt.

Friday, December 12, 2008

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.

Tuesday, November 25, 2008

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.

Friday, November 14, 2008

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!

Tuesday, October 28, 2008

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!

Friday, October 17, 2008

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.

Saturday, October 11, 2008

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.

Wednesday, September 24, 2008

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!


Wednesday, September 17, 2008

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!

Wednesday, September 10, 2008

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!

Tuesday, September 2, 2008

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.

Sunday, August 31, 2008

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!

Tuesday, August 26, 2008

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.

My ears were burnin'!!

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 my kidney had also been reduced significantly. (i don't have a percentage for that one yet) dr. doom was very pleased with my continued response to sutent and presented my case on monday. he loves me cuz im a good success story for him so far...and i love it because it motivates him even more to get me into remission! that is a long way off and a tough road that i will have to travel, but that is the ultimate goal of course.

well, that's the news that fit to print folks. i am going to Va Beach over labor day weekend for a much needed vacation away from hospitals and dr.'s and the C word. i am most likely starting back on the sutent when i get back from vacation....fun, fun, fun. hopefully the side effects will be delayed for a couple weeks this time....that would be wonderful.

thanks team bean saver! hope your summers have been great and your vacations have been restful. i'll update when/if i learn more details about my scans.

Saturday, August 16, 2008

Happy Anniversary Lefty!

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 nearly as fast. in fact, it is hard to tell if it is building up at all or if some days i just have gas bloating my belly. :)

cross your fingers, toes, legs, arms for scan day team bean saver! thanks!

Friday, August 1, 2008

Drink your milk!

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! :P

on another note...i got a wii finally!! w00t! challengers...any challengers? who wants to kick the cancer patients' ass in some Kung Fu Panda!?

Tuesday, July 29, 2008

Steady as she goes...

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! thanks to everyone for the birthday wishes! lucky 32!

Monday, July 21, 2008

Best laid plans....

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 went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.

5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.

thanks to everyone for their well wishes! rock on wit yo bad selves!

oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!

Wednesday, July 2, 2008

the triple threat...fluid be gone!!

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 he noted that and said they would monitor the toxicity closely.

my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.

diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.

with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!

Monday, June 23, 2008

To quote "The Rock" .... i think he said it...

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.

3 week check....NO FLUID, YIPPIE!!!

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....

Friday, June 6, 2008

You look Maaaarvvolousss!!!!

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 see how long you can stand it.........not too comfy.

the only fun part is that now i need all new clothes. w00t! can we say shopping spree!!! build up my stamina by shopping for cute and fun summer clothes. can't beat that. i went shopping the other day and got 2 pairs of shorts, 2 shirts, 2 skirts, 2 summer dresses and 3 pairs of cute jeans to replace the ones that i already have that i LOVE but are too big now. it was a great start....oh, and a new pair of Coach shoes...cuz...well...just cuz. :-)

all in all i have lost a total of 40lbs since i was diagnosed....due to the sutent side effects and the surgery and recovery. luckily i had some meat on me to lose so i don't look like a skeleton. but, that is why i needed all new summer clothes...because they weren't just a size too big, they were 3 to 4 sizes too big. as far as the winter clothes, they are only 1 or 2 sizes off.

i am still eating like a pig....the steroids really make me hungry. as i have mentioned, it feels wonderful to be able to eat...and eat a LOT. i am not gaining anything back tho....im sure that will change, but right now im fine with it....i havent been this size since high school!

Monday, June 2, 2008

The Magical Amount....

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.... :)

Friday, May 30, 2008

Back to the Future....Sutent!

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!

Saturday, May 24, 2008

MmmmMMmm Sutent.....again....

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 anything and everything i want. it feels wonderful.

anyway, my dr. decided to start me back on the 37.5mg (4weeks on, 2 weeks off) dose of sutent while i am still rebuilding my stamina. since i tolerated the 50mg dose so well before, he thought that i would be fine in my weakened condition on the 37.5mg dose while i continued to get stronger for my next battle in the war on CDRCC. so, i will start on the new dose cycle middle of next week.....insurance is slow with the approval of the Rx cuz of the holiday weekend...uggg. the drug store has pre-approval, but can't hook me up until the final paperwork is in. so annoying. i've been approved so many times for so many drugs, it's hard to believe that it is taking this much time at this point.

anyway, that's the only news i have....starting back on a lower dose of sutent while i rebuild my strength, re-evaluate after this first cycle back to see if he wants to put me on another round of the 50mg or whether i can get strong enough fast enough to try the chemo cocktail in 6 weeks or so. i will keep everyone posted on that. losing my hair...that will really suck...yes, i am vain about my hair. i am a leo and have always had a "mane". that will be hard to get over when the side effect kicks in. forget the white hair that sutent gives me. hopefully we won't be attempting that treatment until after summer.

thanks as always for all the support. hope to see many of you soon and talk to those that i can't see soon as well.

Wednesday, May 21, 2008

okay....here's the scoop....finally.

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, enough about that...i am not going to say any more about it except to state that i hope that the person that left the comment has since removed the link to my blog and does not continue to delude themselves that they are a caring person because they think they feel empathy for my pain.
In case some of you are wondering what comment i am referring to, it is in the comments section (anonymous comment #2) of the April 19th post "speedbump within the speedbump ... :(."

okay, on to other news....

percocet used to be my friend...then it started to make me sick. i could barely eat, it made me nauseous just to think of food...i was dehydrated cuz i could barely keep anything down. over a weeks time, i got my percocet dose down to 2.5 pills a day, then i went off it completely. i felt like i was detoxing off of meth or something. it was horrible. i was sick as a dog for 4 days....felt like johnny cash in "walk the line". couldn't move from one room to the next without running for the bathroom to dry heave.

after i made it through those 2 weeks of hell and was completely off of the percocet, i was finally able to start trying to eat normal food again...it was very hard and i had to force it down. one night my stomach ballooned up and we called the dr. the next day. Because of the timing, the nurse thought it was gas issues because the percocet had messed up my system. so, they told me what to eat and what not to eat...also to try to add probiotics back into my system to help my stomach learn to digest again....this went on for another week. my belly looked like i was 4 or 5 months pregnant and it was extremely painful. i was scheduled for a ct scan on May 12th and a follow up appointment on May 13th with dr doom to discuss next steps. well, when they scanned me, they told me that i had a bunch of fluid in my belly and it wasn't gastrointestinal problems at all. they called dr. doom and wanted to do a paracentesis right away to get the fluid down. i was not at my usual ct scan place cuz they were all booked, so i was at mercy instead of main or the other option i use sometimes. the dr at mercy started to drain the fluid and there was blood in it so he stopped and called my dr. again. dr. doom said to stop and have me come over to his offices right away. at this point, i knew he was going to admit me to the hospital. we left and went to dr dooms and after a short wait in the infusion center, i was admitted to the hospital.

so....i was in the hospital again....for 5 days.
the fluid build up was due to a couple cancer nodules that have attached themselves to the outer lining of my stomach....in the cavity of your torso where there is a lot of room for fluid to build up. i really looked like i was 4 or 5 months pregnant. it was extremely painful....

they drained 8 liters of fluid off of me....2 gallons...16lbs! 4 during each session over 2 days. since i have never been drained before, they only do 4 liters at a time so your body doesn't go into shock and you end up in ICU. it felt so much better after they drained it. then i was in extreme pain a few hours after they drained it cuz my body didn't know what to do with the extra room and it was killing me. a couple nights in the hospital like that and i was about to lose it. one funny story the tech told me was that he had a little old lady in there one night and they were draining her belly...he said they were on their 10th liter....that's over 20lbs of liquid! anyway, he said she had been really quiet and finally said "wow, now i know who's causing the drought around here!" hahaha...i was cracking up.

the whole time in the hospital i was still battling nausea and pain and not being able to sleep, then ONLY being able to sleep. i was released on Friday may 16th and have been getting better every day now that i am home again. my belly is still sore from the surgery and the fluid drain, but i am finally on the mend...i can finally see the light at the end of the tunnel. it has been a long and bumpy road.

i have an appointment tomorrow to talk next steps in treatment finally. they are going to start me back on the sutent as soon as possible to take care of the weeping cancer nodules in my belly. right now i am on steroids to try to help control the inflammation and weeping of fluid.

that is the only progression of the cancer during this whole recovery....the rest of the area that had been reduced already showed little change, so that is really good that it didn't come back like gangbusters while i was down and out.

luckily, CDRCC (what they finally determined i had) responds to sutent the same as the most common type, clear cell. BUT, it also has shown some response to a nexavar and chemo cocktail combo that other RCC types do not respond to....so, i actually am rare as shit, but have a couple more options now for treatment that i didn't have before.

Saturday, May 17, 2008

having a rough time....

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.

Saturday, April 19, 2008

speedbump within the speedbump... :(

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 same as any soft tissue treatment. heat, stretching, massaging and time....LOTS of time. what's kinda cool is when you find that tense little bugger and rub it, ALL of the other muscles begin to relax....it is amazing how everything is attached in our bodies and one little injury can screw up so many other things. so, on top of the regular pain you have to put up with during open surgery recovery, i have had to deal with this other random problem. it's been a painful and difficult juggling act....up all hours of the night taking baths, getting massages, nauseous from pain meds, etc. etc. extremely frustrating, completely demoralizing and just plain ole depressing.

i also had another MRI because dr. doom wanted to make sure that the pain wasnt being caused by something else. a pinched nerve that could be treated with steroid injections or the original back pain coming back. both of those were pretty much ruled out when nothing new showed up on the MRI.

so, sorry team bean saver. i don't have any other good news except for the MRI at this point. i can say that i am finally starting to feel better, but it is slow going and frustrating....especially since i was making such great progress my first week home. anyhoo, hopefully the next time i update this blog it will be with better news and details of "plan B" since i have an appointment with dr doom regarding next steps in my treatment on May 8th.

Friday, March 28, 2008

Just another speedbump in the road to a cure....

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 my surgery to discuss what was going on before he gave up.

while they had me open, they were able to get a bunch of other tissue samples that they had not been able to get before....they sent them to the local pathologist and also to an internationally renowned pathologist at Harvard for a second opinion to officially determine the type of cancer cells. just to recap, the results from my original biopsy last sept. were inconclusive....the cells didn't look like the typical clear cell RCC, but since it looked similar, dr. doom started me on the sutent treatment and it worked. the cancer responded to sutent as if it were clear cell RCC. we now finally have a conclusive answer!! YEAH! i actually have "collecting duct renal cell carcinoma". it is obviously still of renal origin, but it is a type that makes up <1% of all RCC cases. yup, i am one special gal! luckily, the stats for it aren't worse than its cousin...it responds to treatment the same as clear cell and it has also responded to additional treatments such as chemo whereas clear cell RCC does not respond to chemo. here's a link if anyone wants to know more about it.

http://www.uptodate.com/patients/content/topic.do?topicKey=cancer/9134

so, not getting the kidney out at this point ends up not being the end of the world. dr. doom is actually all smiles....he seemed happy that i made it through surgery with flying colors, that the ovary is out and to have some more "evidence" to test and help determine next steps. he was REALLY excited about sending the samples out to the fancy HAAAvARD (can you hear the snooty accent) pathologist. the rarer i become, the happier he gets. can't get much more rare than <1% of all RCC cases, plus im not a man, plus im not over 50, plus i had great response to his treatment....im sure he can just taste that medical writeup coming.

i don't know if dr cold fish felt bad that he didnt get the kidney out or what, but he said that he called in a plastic surgeon to close me up...they closed my incision with a type of super glue...i have no stitches or staples...the skin is literally glued together in order to minimize the scar. pretty cool! there are stitches underneath holding the muscle layer together to heal of course, but the top layer is just glued.

i won't bore you with details of the pain (let's just say that percocet is my BFF) or the horror story from my second day in the hospital(catheter, cussing nurses and not enough pain meds is all i have to say right now)....if anyone wants details about the surgery or has an questions, just shoot me a comment and i will write a post with more detail later. I will say that on the 3rd day in the hospital, dr. cold fish told me that the world was waiting for me to fart....they wouldn't release me or let me eat regular food until i farted. ha. usually this is not an issue for me, but it took me 5 freaking days to fart....needless to say, the whole floor knew when i did. it was like the first time your kid goes potty on the potty. my mom ran outside looking for the nurse screaming "she farted!!! she farted!!!!"

Sunday, March 16, 2008

And the winner is..........drumroll.....

The Mission: Operation Lefty's Last Stand
The Team: The Surgeon Generals

11:30am the attack begins....CMC Main Hospital.

Fingers, toes, legs, arms, eyes....everything is crossed. WISH ME LUCK TEAM BEAN SAVER!!!!

Wednesday, March 12, 2008

UPDATE: Gonna be kickin' it oldschool

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 think its such a great idea if HE crosses his fingers! ha!

also found out exactly what "bowel cleansing" is today....its pretty much what is sounds like. sunday i have to be on a liquid diet...water, gatorade, broth, etc. and then take a heavy duty laxative around lunch to clear my ass out...MMmmMMMmm. guess they don't want me pooping on the operating table...understandable.

more on the second appointment of the day later.....

Sunday, March 9, 2008

Nothin' left on the left...

okay. so i had a pre-op appointment with the obgyn onc, dr. T which i forgot to post. he did the full "girly" appointment and also informed me of what exactly he was going to be doing during surgery. he also informed me that the ovary is actually more like the size of a large cantaloupe, not a grapefruit. DAMN! no wonder the thing sticks out like it does.

okay, so, surgery. while they have me open, he is going to take the ovary and send it down to the pathologist STAT to test it for cancerous cells just to CYA since it has not been biopsied. he said that there is some slightly abnormal tissue at the bottom of the ovary, but that it is all completely contained and that in the past when he has seen something like that, it has been cystic and benign. HOWEVER, if the pathologist sees trouble, there is the potential for a full hysterectomy...to take both ovaries and the uterus. dr. T thinks this is the least likely scenario and reassured me that he is fairly certain they would only be taking the left ovary, but he had to go over every possibility with me. he said: "this should just be a one and done scenario with me...apart from the follow up appointment 4 weeks after surgery, i should be a one and done for you." he cracks me up...he always throws something in there like that. 6 months ago when i first saw him, he said that when i am able to have surgery for the kidney, he would just "pop" in the OR and take the ovary during the nephrectomy (removal of the kidney).

so, that is the update on the ovary. he also said that while they are in there, if they nick my bladder or intestines....they'll fix that before they close. ummm, yeah...i would hope so! ha!

Thursday, March 6, 2008

Houston....we are a go.

Monday March 17th, St. Patty's Day, Jen's b-day....now Operation "Slice N Dice" also shares this date. Surgery to remove the cantaloupe sized ovary and hopefully the kidney and surrounding "stuff" is scheduled for 11:30am. I am to check in at 9:30. I also have 2 pre-op appointments on March 12th. one is at the hospital for all of the preliminary blood work and medical history and meeting with the anaesthesiologist, etc. that one is at 3 and could last for up to 2hrs. the other pre-op appointment is with dr. cold fish to go over what im supposed to do to prepare for surgery, etc. the nurse mentioned something about "bowel prep". im not sure what that means, but i am not looking forward to it...why does everything always end up being about my bowels?! geesh!

as far as the naming of the surgical team....i'll be taking suggestions as well as votes for favorites until Sunday the 16th. let's be creative people!!! half of you are designers or creatives! :P the winner gets...ummm...a night in the hospital with me...ok, ok...how bout bragging rights. that's about all i got. hehe.

Thursday, February 28, 2008

Name that Team!!!

leave a comment if you want to name my surgical team. right now they are simply Team T because both of their names begin with the letter T.

just to recap...one is an obgyn onc surgeon and the other is a renal onc surgeon. the renal onc is dr. cold fish and the obgyn onc is simply dr T, but he has a better bedside manner than dr. cold fish. both are honorary members of team bean saver.

and no, "Surgical Nut Zippers" is not an option.

It's alive....IT'S ALIVE!!!!!!

i think that's the line from Frankenstein. anyway, the pre-op appointment. well, it wasn't exactly what i was expecting, but each time i switch to a new specialist, that is pretty much par...they say they have talked to each other, but usually by the time i see the next one, it is 2 weeks and 100+ patients later and they don't remember shit. this time was no different. i was under the impression from dr doom that the surgeon, whom i will refer to as dr. cold fish, considered the kidney operable now...thus the pre-op appt. silly me to assume that having a pre-op appt. meant you were a candidate for oh, i dont know, an operation?!!

once i got in to see dr. cold fish, he began by going over my scan and saying that the kidney was still not "ideally" operable. he said that the mass surrounding the vein and artery that connect the kidney to the aorta had significantly been reduced, but there was still approx. 2cm of cancerous "stuff" surrounding it and he would not know if it was possible to get the kidney out until he was in. he was reluctant to consider surgery at that point and we all kind of looked around at each other like "wtf". then he called dr doom and after 10 minutes of very big dr. words and debate of a couple options, he decided to move forward. basically, dr doom is concerned that the effectiveness of the sutent has almost run its course and that if we are going to attempt to get the kidney out, now is the time...before my progress begins to reverse. he also said that my obgyn onc surgeon (dr. T) is fairly certain that the ovary is cystic in nature and just needs to come on out. dr. cold fish said "that thing is huge...it's like you're pregnant." i said: "yeah, pregnant with a period." he's right, that thing sticks out like a big ole grapefruit..i will be happy to get that out.

so, since they want to get the enlarged ovary out of me anyway and there is only a small window to do surgery now since theoretically i am near the end of the effectiveness of the sutent, he is considering me an emergency case, adding a day of surgery to his already booked month of march and working on getting me scheduled for emergency open surgery on march 17th. (maybe if i tell everyone i am irish i'll get lots of extra stuff for st. patty's day.) he is going to reschedule all of his appointments and said, with authority: "I will get OR time." as of today, this date is still tentative because they don't have dr. T on board yet, but they wanted to let me know what day they are shooting for. that said, there will be an update to confirm all of the details once i have them...date, time, location, etc.

surgery details: (turn away if you are sensitive to gore...parental guidance is advised)
they will have to cut me from sternum to pelvis, wide the hell open. dr. T will remove the ovary and then he will remain to assist dr. cold fish while he attempts to do his thang. together they are Team T. (nothing very original there...both of their names start with T)

A side note: originally, dr doom said dr cold fish would only be removing the kidney, that he would leave the surrounding lymph nodes, but as dr. cold fish was dictating in his little recorder thingy, he said "Radical Nephrectomy".....definition: Surgery to remove an entire kidney, nearby adrenal gland and lymph nodes, and other surrounding tissue.

surgery could be anywhere from 6 to 8+ hours from what i have read, but who knows. when they close me up, they will be using a "zipper" method...thats what dr. cold fish said into his little dictation recorder anyway. i looked this up and it is pretty cool. the link is below if you want to see....its not gross...its an illustration. sorry about the asian characters, some of the paragraphs are in english, so you can get the gist of it. i will be in the hospital for 4-6(?) days if there are no complications. the recovery period is approx. 6 weeks.

http://www.medizip.com.cn/prodprofile_fr.html

so, needless to say, i am going to be partying my ass of for the next two weeks....well, as much as i can without overdoing it. then, bring on the drugs...and dont hold back, bring on the GOOD ones...i dont want to feel a damn thing!

well team bean saver, that's about it for now. the next cancer chapter of my life is about to begin. live long and prosper! (that's a shout out to all my geek buds!)

Monday, February 25, 2008

Have your people call my people and we'll work something out.

for those of you that have been checking my blog to see how the pre-op appointment went...i apologize for not updating sooner!!! Dr. T, my surgeon, was called into emergency surgery last week and they had to reschedule my pre-op appointment for this tues, feb 26th at 4:30. the good thing is that morning, he is meeting with several other doctors during a "small tumor and kidney conference" and they will be going over my scans, laying out/finalizing my surgery plan, etc.

so, i will try to update the blog in a more timely manner this time. sorry team bean saver!

Monday, February 18, 2008

The little engine that could...

i think i can, i think i can....i KNOW i can, I KNOW I CAN!!!!! The 3rd and final round of sutent worked...you can see the veins that connect the kidney to the aorta now. the cancer surrounding them has been reduced so much that you can see them! the surgeon can see them which means he can get the kidney out! i am no longer in the "inoperable" category. what seemed like an unachievable goal 5 months ago has been achieved...phase 1 accomplished. dr. doom is so pleased with my response to the sutent, he is all smiles each time i see him now. that just feels wonderful.

the pre-op appointment with my surgeon is this thurs., feb 21st. i am excited and scared at the same time. the earliest that surgery could be scheduled is the first week in march. they cannot operate until i have been off of the sutent for at least 1 month. my last pill was jan 30. i have no idea when they will actually schedule the surgery however, i only know the earliest possible date. i expect to find out when they want to schedule it at the thurs appointment. i'm also hoping to find out whether they can do laparoscopic or open surgery, now long i will be in surgery, the risks involved, length of hospital stay, recovery time, etc.
i'll update when i find out more...

surgery is phase 2 of my fight against cancer. dr. doom has more plans for me. after successful surgery and recovery, the plan is to start me on Interleukin-2. this will not be fun....not like any of the challenges i have had to face have been easy in this battle, but i think that the IL-2 will be the worst. IL-2 is another immunotherapy treatment that is administered intravenously over a 5 to 7 day period in ICU. it is the only treatment that has had any success as far as complete remission in RCC patients. it is a highly toxic treatment which is why i must be in ICU for the duration of the treatment. it is also the most aggressive approach, but my dr. has confidence in how my body will handle it since i was so tolerant of the sutent. the IL-2 treatment is so toxic, that they will only administer it a maximum of 3 times...and only if you show progress between each of the treatments. if you show no progress during the first treatment, your doctor may or may not choose to put you through a 2nd round. if you show no progress during the second, they will stop. also, it is so tough on your body, on your heart and lungs, that there is a 6 to 12 week "recover" period between each treatment. the immediate side effects should subside in just a week or so, but they will not put you through the next treatment until your body has had a chance to rest.

once again, the odds are stacked against me. the success rate percentages are low...15-20% partial or complete responses to the treatment with a 10 year survival rate of 12-15%. i LOVE proving the "odds" wrong. i've already proven the odds wrong once and damnit, i am going to do it again. i HAVE to...i have no other choice. i WILL prove them wrong. this is one time in my life when it has paid to be stubborn. ha!

here's a link to info on IL-2 if anyone is interested in more details.
http://cancerguide.org/rcc_il2hd.html

one good thing about the surgery date....the 15th is a saturday and last i checked, they don't schedule surgery on saturdays. so, it will not be during the ides of march. no need to fear the "impending doom" as poor Julius Caesar should have. Ha!

Thursday, January 31, 2008

Worse than the dentist

last night was my last sutent pill for this round. the side effects hit me hard at the end of this cycle. they tend to build up, but this time it was like a smack in the face one morning....BAM!! we're here! tongue peeling, sensitive mouth, lack of taste, painfully dry skin around my nose and in other random places on my body, nose bleeds, fatigue and the never ending bathroom visits. oh joy! although i have mentioned that the side effects are a small price to pay if the "miracle drug" is working, it is definitely worse than the dentist.

right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.

once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!

Sunday, January 27, 2008

Dates, Dates and More Dates...

this is just a quick update on all of my appointments coming up. the Jan 23rd appointment went as usual, the only thing that came out of it was that they reduced my thyroid meds from 75mcg to 25mcg. other than that, same ole same ole. i was fighting a head cold last week which is not a good thing to have to do when your white cells are down because of the sutent, but i managed to kick it to the curb. :)

okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.

tootles.

Friday, January 11, 2008

One small step for WOman...

one week into the sutent cycle. side effects are minimal still so i try to take this opportunity to visit with friends...before i get too tired and before my white cells are down too much. this time, i am still basking in the glow of good news of how great the drug is working...so much so that i am starting to take my life back. starting to see more and more of my friends and meet new ones. wanting to celebrate this first step in a long line of steps to beating this. i want to scream from the rafters...i want to brag to anyone who will listen....I AM WINNING!!!!

one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thyroid issue which, as i mentioned, is being affected by the sutent. dr. doom says that the thyroid should return to normal when i am taken off the sutent, but until then, they will monitor it with the other blood tests and adjust the dosage accordingly. i HATE how thin my hair is now. i know it seems extremely vain in the grand scheme of things, but i have always had thick hair...a lions mane my family called it. now that it is so thin AND the fact that it grows in white while im on the sutent makes it look even thinner. my hair part looks like i have a skunk stripe on my head. i have been getting my roots done every 4 wks, but i am not due until the 20th and i already need it now....BAD. uggg.

ok...enough whining about trivial bullshit...on to the important stuff.

follow up appointment for the usual blood check and physical is Jan 23rd. last day of sutent in round 3 is Jan 30th. my next scan to determine whether i am heading to surgery or not is Feb. 11th(happy Val-dog Day). appointment with surgeon is currently set for March 11th (assuming the scan looks good). maybe the Easter Bunny will take my kidney and ovary for me this Easter! ha!

anyhoo, i probably won't write much, if at all until i get more news or something else happens. i try to stay busy visiting "Team Bean Saver" members as i already mentioned. tootles!

Saturday, January 5, 2008

Mmmm....Mmmmmm...Sutent.

can you hear the Mmmm...Mmmmm....Campbell's tune playing in your head as you read my title?
HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!

Thursday, January 3, 2008

I AM A CANCER KILLING MACHINE

Jan 2nd. follow up appointment. dr. dooms assistant, the immunotherapy coordinator comes into the room and has a big ole smile on her face. she says that dr. doom has plans for me and that i should be so excited. we chat for a bit and then she leaves as we wait for dr. doom.

dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!
we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also been reduced by about half. so much so, that the surgeon is fairly confident that after just one more round of sutent, he will be able to operate and get the kidney and at least some of the surrounding cancer out. he is so confident that he has already scheduled an appointment for me with him March 11th.

also, i had two spots on my liver previously...the scan now showed that one was completely gone and the other had significantly reduced in size as well.

w00t! w00t! w00t! i can't believe it. it is too good to be true, yet it is true. the 30% of patients that responded to the sutent the way that i have had already had the "mothership" aka the cancerous kidney removed. the best chance of reduction in amount of cancer was when the source had already been removed. that is why my case was so grim originally. why my original diagnosis was 3 to 20 months. but, as i have mentioned several times now, i am a cancer killing machine and have beat the odds so far. i am going to continue to beat the odds i know it! i can do this. i can beat this.

50% reduction is almost unheard of with just 2 rounds of sutent. my dr. was very pleased. dr. doom blushes!

so, the plan is one more round of sutent. i start tonight, yuck. in 3 weeks i go back for my usual mid-cycle check up and blood tests. then get another scan in 7 weeks to see if i am still a cancer killing machine. my surgeon will look at that scan as well and then i have the appointment with him march 11th. im hoping this appointment will be a pre-op consultation. i never thought i would be hoping for surgery, but i never thought i would be diagnosed with stage IV inoperable kidney cancer either.

thanks to everyone for your well wishes and support. i greatly appreciate everything. i never knew i had so many great friends and people who love me.

Dec 28th - the big call

waiting, waiting, waiting...it is the worst thing. i hate waiting...trying to keep your mind off of what you are waiting for.

ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.

good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slows the growth.

yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!

my follow up appointment to see my scans and get word about surgery or no surgery is Jan 2nd.

fingers, toes, arms and legs all crossed again.

Scan Day - Merry Xmas

December 27th has finally arrived. My anxieties are high. i don't want to drink the nasty dye. i get to my appointment on time and am taken back into the "drinking room" and get settled in the little hospital bed to get my drink on. this time, they offer me an alternative to the 6 mega-shots of nastiness. they offer me what they call a "Banana Smoothie" and i only have to drink 2 10oz cups of it vs. the 6 6oz cups of nasty. supposedly the side effects aren't as bad either. BRING ON THE BANANA SMOOTHIE!
well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white, half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. i manage to only spit up a little of the stuff and choke the rest back down. this happens again on the second cup and halfway through the second cup the nurse(at least i thought she was a nurse) comes in the with IV bucket of tools and proceeds to try, i stress try, to start my IV. i have the worst veins...they just dont want to come out and play. because of this, i always have to get stuck in the hand. all the nurses hate this...smaller target requires more talent. every single one of them that has had to start an IV on me or take blood for tests has insisted that they are good and want to check my upper arm to see if they can "get me" and every single one accepts defeat and ends up going for the hand. Well, the "nurse" tried the hand and ended up blowing my vein and giving me a big ole bruise. she then says "oh, you are hard, i'll have to call the RN and get her to start your IV." CALL THE RN. WHO THE HELL ARE YOU THEN?!?
within 5 minutes another lady comes in with the IV bucket of tools whom i presume to be the RN. she tries the other hand and gets me no problem.
oh yeah, i forgot to mention that this time, i also have to drink gatorade with baking soda in it every hour for 4 hours after the scan. this is to help my kidneys push the dye out of my system since it is not good for it to stay in there for too long.
anyhoo, on to the scan. it goes off without a hitch as usual. it is simply the prep for it that i dread. the IV dye that they inject just before the scan i am starting to enjoy. it gives you a weird warm feeling all over as it flows through your veins and all around your body. like a big warm fuzzy...it also makes you feel like you have to pee, but that quickly passes.

now the wait. it is a holiday week. my dr originally wanted to do my scan the first of the year, but i insisted on having it before the end of the year for insurance purposes. my deductible was met long ago and i wanted to fit as much into 07 as possible before the deductible reset. he understood and moved the date without hesitation. so, like i said, now the wait begins. it is a holiday week, but luckily my dr is on call and said he will call with preliminary results as soon as he gets a look at my scan.

fingers, toes, legs, arms...all of them are crossed for good news. please let it be good news!!