Save The Beans!

A Star for Sarah

2010-02-27T13:44:00.001-05:00

Click on the "A Star for Sarah" to visit her at the SU2C constellation.

Sad, sad news...

2009-09-07T18:12:00.003-04:00

After over two years of fighting unbelievable battles against this insidious disease, Beansaver lost the kidney cancer war on September 6th. She never could build enough stamina after suffering Sutent's side effects and the ascites fluid buildup and thus the new drug Afinitor was never an option. She continued fighting - struggling to get up every day, in spite of several debilitating symptoms including 30 lbs of edema in her legs, until she was too weak to do so and she went to a very nice hospice for comfort care. Five days later on Sunday morning she died peacefully in her sleep with BeanSaverMom holding her very brave little girl's hand...

I know Beansaver truly appreciated all of you who followed her blog and I'm sure you will all miss her often humorous and entertaining posts - a true feat when it comes to talking about kidney cancer.

Beansaver's Facebook friends can find additional information on her wall.
---BeanSaverMom

fear = weakness or weakness = fear????

2009-07-18T07:44:00.001-04:00

been a lot going on team bean saver(none good).....promise to update this week.

Resistance is futile

2009-06-29T14:05:00.002-04:00

i am now officially a member of the Borg Collective. the tube is in and we have been draining 1ltr./day for a little over a week or maybe 2 weeks? i dunno. anyway. i am pretty much empty from what we can tell and am now just draining and checking the bandage 1x/week. the convenience is nice. drain when i feel like it....i have a nurse the comes to my house once or twice a week depending on my needs. either he will do the drain, or he will train anyone i want to be able to do it. my mom and i have been trained to do it...i haven't done it on my own yet because of the angle....it's kind of hard to get through the last step by myself. morphine is still my friend so far. i am on these continuous release patches that i have to change every other day. i am also taking a short acting version for when that just isn't enough. i'm still not taking very much in the way of pain meds. dr. dooms nurse laughed at me when she saw how much the Rx for the morphine patch was....she said "whoa, don't o/d or anything! hehehe" at the time i was on the lowest possible dose, i am switching to the second lowest and my have to go up from there....i don't know. its one big guessing game of trying to manage the pain. some days are fine, some days are terrible. stress has an effect on how my meds work, so i need to try to tone down the stress i think.

i am extremely weak...can barely make it up the stairs without losing my breath. its terrible. my left lung is pretty full (well, the space between my lung and the sack that holds my lung) and i have a thora tomorrow that will hopefully bring some relief. morphine and lack of stamina also cause trouble breathing and since i've got all 3 going on....i figured that it was time to drain the poor lung. i've only had that done 2 times. the first time hurt terribly for several days, the second time it was like i'd been doing it for years. so, cross your fingers that tomorrow is like the second one i had. please be a nice thora!

sorry i haven't written a post in a while. its been rough going. you can pretty much assume that if i am not writing posts than i am in no shape to even get on the computer. unless i have mentioned a vacation or something.

oh yeah, during this "figure out the pain meds" and "get a Borg tube in my tummy" drama....i have managed to re-injure my pirafomis in my left leg and injure the right one just 1 week later. all that going on sure makes it hard to figure out your stable med plan. :(

hope is just around the corner....i can feel it. it's my turn for some good luck...MY TURN!

on the same page (Hospital stay part 2)

2009-05-11T17:04:00.004-04:00

once i got to sleep, they actually let me sleep for a while....i couldn't believe it. it didn't last of course. around 4am the revolving door started, the vampires wanted blood, nurses giving meds, vampires wanting more blood, dr. doom paying an early morning visit. there weren't too many vampire misfires this time, so that was one good thing. my hemoglobin was pretty low so dr. doom ordered 3 units of blood so the 3rd vampire of the day had to take some to type and cross me. i am O-neg, but they have to type and cross you every time....c.y.a. policy i guess. they didn't do the para until mid afternoon or so...i was already getting my first bag of blood so the nurse had to escort me everywhere i went...more policy i guess. they took off 3 ltrs and everything seemed to be fine. i met with the nephrologist (aka...dr. kickass) and her lackey...kidding. i don't know if he was her lackey or what, but he didn't seem to know anything other than what she told him. she ran her blood tests and i had to pee in a cup for her urine tests. they also did an ultrasound to look at both kidneys and my bladder....for that they decided that coming to get me at 11pm would be nice. gotta love the middle of the night tests....i was half asleep and had no idea what was going on...not to mention the fact that i was still getting blood (on the 3rd unit). they hadn't started the 3rd unit yet tho cuz the nurse was running behind so they took me down for the test and then started the blood once i was back and almost asleep...again. when you are getting blood, they are constantly coming in the room to take your vitals, so needless to say, between the chick coming in to get my vitals every hour, the delivery of meds, and the vampires, i didn't get much sleep the second night.

the next morning, dr. doom again was early and said that he wasn't sure who's blood they had tested that morning, but it wasn't mine because the numbers were looking good and the hemoglobin was now high. ha! he seemed satisfied with where i stood chemically at that point and was just waiting to hear what dr. kickass had to say after she reviewed her test results. she and her lackey both came in later that day and said from their standpoint, the kidney and liver seemed just fine. that my creatinine levels continued to go down and that the kidney was functioning normally when it wasn't being "shocked" by the large drains. basically, if my organs were in a normal environment, they would be giving normal numbers. so, her conclusion was that if i could control the fluid buildup/drains and protect the kidney and liver by keeping the vascular system hydrated, that all should be fine and that they were perfectly healthy enough to try new treatments or whatever. if we could not control the vascular dehydration that was occurring due to the "stealing" of fluid to fill the void in my belly every time i had a large drain, then the numbers i was seeing would get worse and with my weight and muscle mass and those numbers, my kidney was only functioning at 30% at times. for example, when the creatinine his almost a 4....that was very bad.

so, dr. kickass recommended a couple options that in her opinion would be worth a try. albumin after drains, smaller drains, another drug/supplement after drains and i can't remember the name but will have my dr. look into it, blood after drains in certain cases, etc. she used the blood after drains as an example because i just so happened to have needed blood after this drain due to other things being low and since blood does not leak like fluid does into my belly, it stayed in the vascular system and kept it hydrated. so, there are a lot of things to talk to dr. doom about during my next appt. which is wed 13th. hopefully we can come up with a plan.

lastly, after the para on my right side, i started to swell, as if i had a hematoma. i showed dr. doom and he ordered yet another ultrasound to see if there was a pocket of blood, but none showed on the ultrasound. so, i continued to swell...painfully so and on the last day, the day that dr. doom walks in and says that he will release me, but that dr. kickass(the kidney chick) didn't have much to say. funny, i thought she had a lot to say and all good! my kidney is good, we just need to keep it happy. that's a win as far as i am concerned, more work for him tho! sounds like they need to get on the same page...or maybe its me misunderstanding. anyway....he decides to order one more set of labs and MORE FREAKING FLUID BEFORE I AM RELEASED!!! NOOOOOOOOOO!!!!! i'm going to burst....the edema was manageable...now its going to be terrible again! so, at 9am i am told i am going to be released...by the time the order for fluid went through, and the vampire came to draw the blood(he was late cuz he hates to come out during the day) and then by the time all of the fluid and mg and K and sodium were pumped in me...i was released at 7 that night. swelling from edema and miserable. a day later, i developed a HUGE bruise on my side...about the size of an 8in frying pan. nice and purple. pretty. not sure where it came from, but it sure seems like it is a big ole hematoma breaking up and moving through my muscle and fat tissue with the edema. arrrrggggg!!!! its always something. i'll post a picture later when i can get one. it's good stuff. oh yeah, my creatinine was down to 1.7 before more fluid was ordered. thx for the going away present dr. doom! it was just great!

Pretty Bruise, huh?

the ER brings out daddy's fangs. (Hospital stay part 1)

2009-05-11T11:01:00.005-04:00

last monday was a whirlwind day(the day of my last post). i called in to update my immunotherapy coordinator(she's one of dr. dooms assistants basically). i told her what was going on with the fluid and that over a 48hr period i had ballooned up and would need to think about what we were going to do in order for me to get some relief. she asked if i needed to schedule a para and i told her yes, but that dr. doom probably won't want to do that without some sort of plan. she put me on hold to talk to him. as i suspected, he didn't want to let me be drained without admitting me to the hospital so they could keep a close eye on my other kidney and immediately give me whatever they thought i might need to protect it. okay, decision time for me. every single time i have been admitted to the hospital, i come out 15 to 30lbs heavier with painful edema which ends up taking 6 weeks to get off and half of it ends up going to my belly anyway. BUT, the fluid right now is causing terrible indigestion and making it difficult to eat or drink enough and i'm not getting much sleep due to the indigestion and discomfort either. both the fluid and the edema make it difficult to get around and get enough exercise. so, after weighing the options, being admitted and getting drained and seeing the kidney specialist to let her run all of her tests at once and then just dealing with the edema when i got out seemed to be the lesser of two evils this time.

this was a VERY difficult decision for me....i actually cried over it because i hate being in the hospital so much, but i had to do it. i called back and told the coordinator that i wanted to come in with the understanding that unless absolutely necessary, i wanted to be on the slowest of IV drips....KVO which is "keep vein open". if my labs show i need more, so be it, but pumping it in fast just doesn't work with my body...it can't process it quickly enough and it goes straight to my belly or turns into painful edema. okay, great....got that straight. we'll be there as soon as we can to see dr. doom and then on to the admitting process to the hospital. relief was on its way...yippie!

the appt. with dr. doom goes fine....he drives home again the warning of my kidney function and then says that we can't get in for a para appt today. he says that he wants me tapped sooner rather than later so he is going to send us through the ER...that he has already talked to the triage dr. there and he is expecting me. ok, great! we didn't know any better at that point that this was bad.

one of dr. dooms nurses wheels me down to the ER to check in, then just leaves us there and says "good luck". after just under 2 hours in the swine flu infested & paranoid waiting rooms (smooth move since my immune system is compromised at this point from being on my meds for 9 wks) we make it into our own room in the ER. another hour goes by and no one seems to know what is going on. they don't have orders for me yet, then they have orders, then they don't again. WTF is going on?! FINALLY, around 7pm,(this whole debacle started at 3:30 mind you), a PA and the lead ER dr. whom we promptly nicknamed Doogie Howser because he looked old enough to be a resident maybe, not the lead ER doc for the night. anyhoo, in they walk, ask the typical questions, the same ones that 4 other people have asked since i got 2 the ER while the PA starts to get me prepped for the para. at this point, my dad and i begin to realize that they have absolutely no idea what they are doing and that there is no way this is going to be good. dad's fangs may need to come out tonight.

now, i know i am not a dr, my father is not a dr., although he has had some training at John's Hopkins and knows his way around a body and how it works. HOWEVER, we have seen enough paracentisis performed on me to know how to do one and how NOT to do one. the first clue, the PA picks up the tube that connects to the catheter and asks "what is this for?". uh-oh. next clue, Doogie's answer "hmmm, i think it goes on here." he then proceeds to puncture 1 of the pressurized glass bottles and then puts it on the floor. these bottles are pressurized because once the catheter tube is in position in your abdomen, you then insert the tube with the needle on the end into the cap of the bottle in order to create the vacuum or suction needed to syphon the fluid out of the belly. thanks to doogie and his girlfriend, they have ruined 1 bottle within 30seconds. (bottle #2 was wasted shortly thereafter when doogie realized that you can't just line up the bottles on the floor ahead of time because they're aren't enough tubes). not the sharpest knife in the drawer....your future health care provider options are doogie and doogie-ettes. scary. okay, i digress...dad and i share a few "WTF" glances, but still, we give them the benefit of the doubt and let them proceed. next up is the numbing needle. doogie tells the PA to go in with a "zig-zag" motion and then follow that up with the same motion when you insert the catheter needle in order to minimize the leaking of fluid upon initially tapping into the pocket. WHAT?!?! zig-zag....with the needle?! that sounds like its going to hurt....and boy did it hurt. never have they mentioned this lovely technique where i normally have it done and now i know why. i actually cried just during the numbing part because it was so painful. btw, i asked the PAs in the normal place later if they had ever heard of that and they looked at me like i was crazy. i shoulda known.

next, after im numb, they try to go in with this contraption that resembles the needle and cath that they use in the main hospital, but it also has this pressure valve attached to it that is a piece of crap. it didn't work right, but they kept messing with it. meanwhile, they weren't even in all the way to the pocket. they were getting "too much resistance". i ask if they had cut a little slit with the scalpel in the surface to relieve the friction upon entry...opps, no, they didn't. they try that. they still can't get it to work. after what seemed like forever but was probably only 5, maybe 8 minutes. they give up. apologizing profusely. then doogie asks if i would like to try one more time since i am already numbed up. i say "sure, im numb...might as well try". so, they dump the first $500 tray of prepackaged prep tools and grab another. they try again, i feel the hot liquid pouring down my side, but they didn't truly get the catheter in all the way and as they messed with the stupid plastic valve thingy on their expensive little unnecessary contraption, it sputtered and then quit. strike 2. they didn't get a chance to have a strike 3. i was done. they cleaned up, apologized profusely again, bandaged me up and said they'd be back.

8pm rolls around and we call for the nurse to ask WTF is going on and when i might be transferred to a bed in the main hospital. at this point she proceeds to tell us that they are waiting on the orders FROM MY DR. WHAT!!!!! how in the hell can you be waiting on the orders still when my dr. went home hours ago and i have been here for hours. the fangs begin to grow.....dad calls the on call dr. for my dr. he lets her know what is going on and then we wait. doogie shows up around 8:30pm and starts "politicin" because by now we have threatened to walk out since i would be more comfortable in my own bed at this point. we would have walked out except for the fact that we needed someone to take my IV out to leave. dad very calmly, yet forcefully goes through what has become our day....with fangs gleaming just enough to drive his point home. it reminded me a little of the scene in Teen Wolf where the dad shows his "wolfness" and growls at the principal....but doogie didn't pee his pants tho....he was too cocky and borderline condescending. i think his fallback career is politics. doogie promises a bed within an hour, then back pedals and says "well, they are really fast here and we should have a bed ready soon"

luckily for doogie, dad had just fed the night before so there was no need to strike at this point. 9 or 9:15(ive lost track at this point)...doogie walks in and says "okay! we have a bed. see, told you we were fast. and i didn't even pull any strings...they are just that streamlined" give me a freaking break doogie!

by 10pm or so, i was in a room, in a bed and being checked in by John who was the slowest check in dude ever! by 11:30 i was completely checked in, dad's fangs were tucked away and i was heading off to sleepy land for the night....hoping that the para being done by the good para people would be scheduled for early in the morning and also hoping that the double fail on my left side didn't cause me to swell up like humpty dumpty overnight.

slight improvement...better than nothin'

2009-05-04T11:02:00.002-04:00

if you've been following my blog for the last few posts, this will make complete sense to you, if you haven't...go back and read a few to catch up.

wed. creatinine was 3.82
thur. creatinine was 3.36
fri. creatinine was 2.7

i normally range between 1 and 2....2 being the high normal, but less than 1 is best.

i was doing fine with the iv fluids each day until saturday....then the friday fluids went straight to my belly....sunday was worse and today(monday) is no better. it is so uncomfortable it starts to drive you crazy. it makes it difficult to eat/drink and keep things down, it gives you terrible indigestion, its generally uncomfortable all the time because of the pressure it puts on your inards and it also makes it very easy to strain what little stomach muscles i have left. it also makes it difficult to find a good position to sleep in for all of he above reasons. i guess its like having the worst pregnancy that never ends until someone pokes my side to let out the fluid. which, as we now know, i can't or at least shouldn't do anymore unless we can figure out a way to protect the other kidney.

that's enough bitchin' just wanted to give a quick update about friday and also that i have an appt with a specialist on tues. to see if the damage is reversible. the improving numbers seem like a good sign to me, but what the hell do i know.

the raw deal....and i wish i were talking about veggies.

2009-04-30T16:37:00.002-04:00

first, i said i would explain about the dehydration issue and what it is doing to my body and what is causing it. many things are causing it....my inability to drink enough to stay hydrated, my inability to eat enough protein and keep enough in my system, the building up of fluid in my belly and then robbing my body of what little fluid and protein it has by draining 3-4ltrs off at a time ultimately "shocking" my system. because of these things, this is what the body does to compensate.

shocking my system with the large paras is taking its tole on my other kidney and since ive only got one good one, they are very cautious with it. when i shock my body with the drains, my body compensates with a sort of "osmosis" that takes place. when they drain 4 or even 3 off, it suddenly creates a void and my body wants to fill that void. so, fluid from my vascular system, my major organs (heart, lungs, kidney) is essentially "stolen" and goes to the void to even things out. your vascular system is basically a closed system. oxygenated and nutrient filled blood leaves from one side of the heart travels around and separates into many tiny capillaries that meet up with another set of capillaries which take the "used" blood back around. (to put is very simply). at any rate, the vascular system needs 5 ltrs of fluid in order to function correctly. when you rob it of this fluid, certain organs begin to deteriorate and lose functionality. this is what dr. doom believes is happening to my kidney because of the dehydration. its not just a matter of drinking more....its much more complicated than that. one way to possibly help this is to take a little at a time....thus the reason they pushed for the tap/tube thing in my belly. this is all of a sudden a big concern because my creatinine level went from a 2 to a 3.82 in two weeks and even after receiving fluid yesterday, it only came down to a 3.36 or so. (sidebar: Creatinine is made at a steady rate and is not affected by diet or by normal physical activities. If your kidneys are damaged and cannot work normally, the amount of creatinine in your urine goes down while its level in your blood goes up.) this makes dr. doom VERY nervous. so nervous that he is bringing in a kidney specialist because he is worried that we are getting into non-reversible territory and headed towards renal failure. this of course would be bad since lefty is shot and righty is all i've got.

so, he is scheduling a consult appt with the renal specialist so that she can assess the situation. go over my meds to see if there is anything that could be causing or adding to the problem there, steps we can take to help, etc, etc.

now everyone should cross their fingers, toes, arms, legs for righty! he needs all the help he can get!

4get the pig flu...i've got my own drama

2009-04-30T11:09:00.002-04:00

okay. so we had to cancel the trip to mexico. the bride and groom have been jumping through hoops to get things moved somewhere else and they managed to get it moved to a beautiful hotel in St. Thomas, but, alas, we had to cancel just the same because i am absolutely terrified of being in public places right now with my white cells down and all that jazz. so, swine flu messed up our plans, but i've got more important things to deal with right now.

i am on my way back to the infusion center for the 2nd day in a row due to low magnesium, low calcium, low potassium, major dehydration...you name it...im not doing so hot.

there are a bunch of details regarding the cause of the dehydration and the fact that i need to come up with an alternative plan to the 3-4ltr drains i have been doing. they take to much of a tole on my body and i will explain in a later post. ive got to head to the infusion center now.

Some normal life stuff for a change....

2009-04-27T12:55:00.004-04:00

im sitting here trying not to shove needles in my eardrums as i am forced to listen to the incessant banging caused by the fact that i am having my windows replaced in my house. 21 of them in fact. i am also being forced to listen to a part bark, part howl and part doggie scream of agony which is being triggered by the very thing that i myself wish that i could escape. it is not my dog, it is a new dog behind me that seems to be in agony daily. i love animals, but i have to admit it is quite annoying to hear his cry. like i said, it is part bark, part howl and part doggie scream....that's the best way i can describe it. in general, it is the 2nd most annoying dog bark i have ever heard. the first is my next door neighbors dog who has recently taken to the "shriller and louder the better" tone of barking. my dog can't even stand that one. anyway, i digress....

it's all good tho...my house is 18 years old and after getting a new roof last year and squeezing one more year out of the already half rotted windows, i had to bite the bullet and replace them. it's a good time to anyway with the energy saving tax credit that is being offered right now. luckily the back windows are just fine, so i am only having to replace the front and side ones. one never realizes how many damn windows you have in your house until you are having to write a check to replace them....or clean them all. all of the windows should be in today...tomorrow they will be replacing any damaged/rotted trim all around the house and painting all of the trim. so, after tomorrow, the house should be set for a while and i will be on to the next thing on the never ending homeowners "to do" list which is update the landscaping.

oh yeah, beansaver news. i still have a para scheduled for wed 29th and a check up with dr. doom right after. hopefully the para will last through my trip to mexico...my bf said worst case i will just look like im preggers....that actually made me laugh and realize that if my belly is bloated down there, too freaking bad...im going to try to have fun regardless...oh, and stay away from pigs. :P

that's life for now. tootles! im off to find my bb gun.......

It's always somethin'!

2009-04-20T13:25:00.003-04:00

after my last post, i had a para on april fools day. well, maybe i was the fool for scheduling on that day because i had the worst reaction to a para i have ever had. when they go in, they go in on my side sort of around the level of my belly button....pretty much where they won't hit any major organs and coincidentally where a majority of the fluid collects. well, the para itself seemed to go as usual until it stopped flowing halfway through the 3rd ltr. the tech(who happened to be the one that i have not had good experiences with in the past) tried to pull the catheter out some to see if that would help. it didn't. i asked him if he wanted me to roll to my side a little cuz that helps sometimes...he said no. i guess he would rather play around with the damn thing than let me try an easy solution first. so, he played....pulled it up some, then a little more, then a little more, then he twisted it one way, then the next.....could it be the bottle? "no, they never lose their pressure". okaaaayyy....so, finally, after playing around with the thing sticking out of my belly for a while, he calls a PA. another PA comes in, one that i have had before and she checks his handiwork. after a brief check she asks if he has tried a new bottle yet. "no, they never lose their pressure." she tells him to try a new bottle and OMG....its freaking magic....it started flowing again. DAMNIT! he was messing around with this thing sticking out of my belly and the whole time it was a freaking bottle failure. ugg. it is the aftermath that was the worst though. i don't know if it is in any way related, but i gotta believe that it is to some degree. i swelled from my chest area all the way down to my hip. i looked like half an easter egg....my bf actually called me humpty dumpty...thanks hun. LOL. april fools and i was the fool this time i guess. the swelling didn't start to go down until saturday and this was done on a wed! as many paras as i have had and this was a first....it's always somethin' isn't it?!

once the swelling went down, the following week went pretty well. i was in week 6 of 25mg sutent and had enough energy to run quite a few errands. got my hair done(gotta cover up the white), passport picture taken and passport stuff gathered and sent off, easter basket shopping for the kids, etc. also had a great easter holiday with family and friends. the calm before the storm....

after easter, i had a triple header. a para appt on monday 13th, 3month CT scan on tues. 14th and dr. doom follow up appt on wed 15th. phew. CT showed that i am holding steady for the most part....the only thing is that there is some thickening of the abdominal wall which dr. doom believes to be causing the fluid buildup and the same thickening has moved up above the diaphragm which is probably what is causing the fluid around my lung. he believes that it has been there for a while which is why he said i am holding steady. dr. doom likes to draw sometimes and it is always fun when he does. it's kind of cute too, so here is an original dr. doom sketch explaining the thickening of the lining, where they go in for the para vs. thora and where the cyst on the kidney is resting. :)

Original Dr. Doom Artwork

he was very happy with the fact that i am holding steady....so was my family. i however, am not satisfied with holding steady....i want more. more progress, more success, more death of cancer cells damnit! everyone tells me that holding steady IS amazing progress for this terrible disease, but i just don't want to accept that. i want to beat it...hold on long enough for that miracle drug. sutent is already a miracle drug in that it shrunk the cancer 60% or so and has now kept it at bay since 09/07. now i need a miracle drug to kill it more...reduce it more...a cure!

but wait....there's more.....
i am going to mexico, Playa Del Carmen to be specific, for my friend squirrel's wedding. my ct showed that i had built up fluid around my lung again since the last thora in jan. dr. doom said that if it wasn't bothering me, i didn't have to have it drained right now, but when he heard that i was going to be flying, he said that i should have it done so i wouldn't risk any discomfort during my flight. soooooo, this morning i had my 2nd thora. thankfully it wasn't nearly as painful as it was the first time. i'm feeling pretty good actually. finally, something worked in my favor again. things working in my favor seem to be few and far between.

aight...well, that's it for now. got another para next week (29th) as well as a checkup with dr. doom to make sure i am good to go for the mexico trip which is may 6th. woohoo. sunscreen and sombreros baby! i'm ready....oh, and a quick little wedding too. :)

Ahh Haa! THAT's why...

2009-03-31T14:31:00.002-04:00

http://www.fda.gov/bbs/topics/NEWS/2009/NEW01980.html

this week i was reminded why i keep fighting, enduring the side effects, enduring the pain....of course it is because i want to live, but more importantly, i want to beat this! each day, each month, each year i can hang on, science progresses and new treatments are approved by the FDA. (see link above). this drug is very promising. it appears to have the same if not better results than sutent AND it targets the malignant cells only whereas sutent starves all cells and the malignant cells simply happen to grow and thus die faster than normal cells. from everything i have read so far, it would seem that i am a candidate for this new drug. if i am not, i'm sure i will be soon. i am going to mention it to my dr. tomorrow and ask him if he has any additional data that would lead him to believe it is a good thing for me to look at trying out. the side effects seem to be similar, but it doesn't say anything about discoloration of the skin and hair. that would be great! no more white hair and white eyebrows and white eyelashes.

to all the science geeks and mathletes out there...THANK YOU! thank you for being passionate in your nerdiness and your quest for bigger and better treatments and cures!

is no news good news???

2009-03-30T10:30:00.002-04:00

a bunch of beansavers have been asking why i haven't posted anything on the blog. well, there just isn't much to say. not much has changed since the last post. i'm still on the 25mg sutent, the side effects are tolerable. indigestion is the worst thing, but that is also due to the fluid as it can also cause indigestion. whenever i get drained, the indigestion magically goes away for several days for the most part and i can actually eat a lot more when my belly is NOT full of fluid.

as you may have guessed from the info above, the 25's are not keeping the fluid at bay as much as i had hoped they would. it has slowed down so i am not having to go every week, but i can barely make it 2 weeks and it is not getting any better than that. i had hoped to get it back up to a couple months in between drains...that is my goal at least, but im worried that those days are long gone. my dr. and a couple nurses have mentioned to me that i might want to consider getting a drain put in so i don't have to get poked so often. that way i could drain off fluid at home when i needed to. the only problem with this drain tube thingy is that it is susceptible to infection which my body can't handle not to mention the fact that you can't take a bath or go in a hot tub or go in a pool. you have to cover it up when you shower. they typically place it in your lower belly...below the belly button so you can't roll over on your belly. to me, it sounds like it would lessen my quality of life rather than increase my quality of life since i can still do all of those things. now, if i weren't able to do those things and it was too difficult to get to the hospital to be drained as often as i would need to, then yes, it would be time to look into something like that and become a human keg tap. but right now....i just can't do it. i can't bring myself to do it. i can deal with being poked every other week for now.

so, still slowly building up my stamina. i have good days and bad days. it didn't help that my thyroid was all out of whack again because they had lowered the dose of my meds to 75mcg for too long. after the last thyroid test, they had to jump the meds up to 125mcg....the highest i have been on. no WONDER i was so tired and my period was 3 weeks late and my fluid build up was not cooperating and my skin was as dry as leather. ugggg!!!! it takes 6 weeks for the thyroid to fully respond to the change in meds, so hopefully in the next couple of weeks things will be much better. i am a LITTLE less tired lately and i did get my period finally, so it would seem that my thyroid is starting to get my hormones back on track. hopefully i will continue to feel and do better and better and i will be able to increase my sutent dose to 37.5mg. if i can increase the sutent and tolerate it okay, that is my best bet to help control the fluid build up...otherwise, there is nothing else i can do. high protein diet, lots of fluids, some sort of exercise...even just short walks, balanced thyroid and more sutent. all of those things contribute to the ability to control the fluid build up. unfortunately there is no magic cure for controlling fluid. :(

not much has changed...steady as i go hoping that slow and steady does indeed win the race. my next scan will be in april....around the 3rd week of april. hopefully it will not show that i need to have another thoracentesis...that thing was freaking painful and i do not want to have another one of those any time soon.

The Tortoise and the Hare

2009-03-04T12:25:00.003-05:00

ok. im back on the 25mg dose....started last thurs and so far so good. the fluid seems to be building at a slower pace, but im not sure why. could be the weeks on a high protein diet or the sutent starting to help a bit or my body finally catching up with the edema and the amount of fluid that has had to be drained over and over again so often lately....OR all of the above. every time they have drained since i got out of the hospital in jan, they end up leaving 2,3 or maybe 4 ltrs in there and my body just can't deal with that much on its own. it is only when they get it down to 1 or 2 left in my belly does the sutent and my body seem to be able to get rid of the rest on its own and balance out. so, i am going to be drained again this thurs even tho it seems to be building slower. i am hoping that they will take another 3 out and leave me with only 1 or 2 and since ive been on the sutent since last thurs, hopefully my theory will be correct and what used to work a few short months ago will work once again.

otherwise i am slowly, and i mean SLOWLY, building up my stamina again. i was so weak after getting out of the hospital and then stupidly trying the 50mg when i wasn't up to par yet and then on top of all that, weaning off of the morphine. man, i was just as weak as i was after surgery and it is taking a long time to get my strength back. its such a long, painful and frustrating road. any normal person would be back within weeks, for me it takes 3 or 4 times that. the tortoise vs. the hare. i am now the tortoise, but we all know how that story ended, right?! well, hopefully that will be me...slow and steady.

slow and steady.

False start

2009-02-19T21:06:00.002-05:00

well, 2 weeks in to the 50mg treatment, i just can't take the side effects this time. i was not strong enough from the start and they are really kicking my butt. i had to go in to be drained again and dr. doom took me off of the 50mg dose until my side effects subside. meanwhile, coming off of the morphine and the sutent kicking my ass has once again taken all of my energy and stamina. i have a hard time doing just about everything and actually can barely do anything. extremely disheartening to go 2 steps forward and what seems like 10 steps back.

so, as soon as the side effects subside i am to go back on the 25mg dose and then figure out next steps from there. i pretty much have to have my belly drained weekly at this point. i really wish we could figure that out...figure out how to minimize that because it is so uncomfortable. so painful, the pressure, the bloating, the nausea, the lack of appetite when the fluid builds up. not to mention the fact that i feel like a freak having to go in and have my belly tapped and liters of fluid drained off. it somehow makes it more.....real i guess. the paracentesis people tell me stories of other people that come in there all the time and have 8, 10, 15 ltrs drained off regularly compared to my 3 or 4. i suppose that should make me feel better, but for some reason it does not.

anyway, just wanted to give everyone an update. on a good note, Forbes magazine came out with a great article this month. the link is below. check it out...it's pretty inspiring.

http://www.forbes.com/forbes/2009/0302/074_cancer_miracles.html

Steady as i go....again.

2009-02-08T19:35:00.002-05:00

ok, so i started on sutent the saturday after my last post so, 1/31. I am on the full 50 mg dose to see how that goes. so far so good. i didn't get enough sutent built up in my system to help keep the fluid down, so it built back up again. i called on mon. to see if i could get in earlier than thurs to be drained again....to give the sutent the best chance to keep the fluid at bay by draining as much as was safely possible. i still had plenty of edema as well. i developed a theory that the edema was simply moving and becoming the fluid since the edema was obviously moving and going down, but i was gaining fluid. i told my dr. about this theory and he said that he would be fine with that if that was what was happening. at least if that were the case, we are making progress, things are moving and getting better.

so, i went in on tues. to be drained and they took 4 liters off (almost 9 lbs). i don't know where all of this fluid is coming from, but man does it feel SOOOOO much better when they take it off. i had immediate relief. i was so much more comfortable. the places in my abs muscles that felt like they were torn or pulled from me straining so much to move the extra edema and fluid around were immediately relaxed and given relief. it is amazing how often and how much you use your core muscles. try to move without using them at all....it is fairly impossible. i couldn't let them relax enough to start healing until the pressure was finally where it needed to be. i have felt so much better ever since tues. i'm still on morphine, but i only have pain when i move certain ways vs. ALL the time and my belly is not filling back up as fast. it seems to be more manageable now. woohoo!!!

i've been on the sutent for a week and so far so good. i am going to call tomorrow(mon) to see about getting off the morphine. i don't like being on meds for very long and i have been on it for about 2 weeks now i think. i'd like to start working on tapering off of it even tho the torn muscle pain is still there, i think since there is less pressure, i could manage the pain with a less intense drug.

anyway, that's about it for now. feeling much better, eating a high protein very healthy diet, eating as much as i can, drinking as much as i can, edema continues to go down, fluid seems to be under control or at least it is taking a lot longer to build up this time and the sutent side effects aren't bothering me yet. still can't drive since the morphine makes me really drunk one minute, dizzy the next, tired the next and nauseous the next. will update again when i find out what my next steps are for the morphine taper. thanks guys!

A week in medical hell

2009-01-29T10:54:00.003-05:00

this is not going to be written in my usual humorous and sarcastic tone because i have actually reached the end of my rope this week and need some serious calm down time. so, please don't worry that i am "giving up", i just reached a very low point and need some time to come back.

ok, so the transfusion didn't really seem to do much for me that i could tell. i was also so swollen from both edema and fluid build up that i just could not take the pain anymore. i called my dr. on tues. and they asked me to come in wed morning to be looked at and that they were going to go ahead and schedule me to be drained. by now i was so incredibly uncomfortable that i couldn't help but cry out of pain and frustration every night....night is when it was the worst.

so, i go in and see the dr. for just a few minutes...he agrees i need to be drained but also decides that he wants to move up my CT scan which wasn't scheduled for another month because he want to see what's going on in there. so, i have my paracentesis wed. morning after the dr. appt and then i have to go over to drink the nasty smoothie stuff in order to have a CT Scan done that same afternoon. i haven't eaten all day and now that the ct is scheduled, i can't grab a snack at lunch because i can't eat before the scan. luckily, the drain goes just fine....they take off 3 liters...wish they would have taken off more, but i can't go against dr.'s orders. done with the drain, we go back to the waiting room(it happens to be the same one for the CT scan at this location) and they ask me what flavor i want to drink. I ask for berry, but they are out so i have to go for the banana smoothie that is warm. yuck. luckily they brought me some ice to cool it down and i manage to drink it down in the time allotted. it is so freaking cold in the waiting room and i am drinking iced smoothie that now i am a popsicle and have 3 blankets on and my winter coat. by the time they come and get me for the CT, i have still not warmed up, in fact i am just as cold as when they started trying to warm me up. now they have to try to get an IV in me for the IV contrast dye for the CT. uh-oh. its cold, im cold, ive been drinking a cold drink and now my veins have run away to hide from the evil blood suckers because they will not soon forget the week of vampire misfires. so, while im sitting on the CT bed, the two....i'll call them techs for lack of a better name. if i called them what i really wanted, i would offend several people im sure. one of the reasons i have taken so long to write this post is that i had to cool down....every other word was a 4 letter one when initially discussing the story i am about to relay. ok, so while im sitting on the CT bed the 2 techs realize after a few minutes that i am going to be hard to get an IV in. i warned them that there are only a couple good places to get me, but even those places have been blown before and to top it all off, my veins are rollers. they immediately move me to a room off the CT room that has a recliner chair in it. they sit me down in the chair and put blankets on me and proceed to beat my arms in different places trying to get my veins to come out and play. the blond tech thinks she has something, so she goes for it. nope. stick 1. she thinks she sees something else. she goes for it. nope. stick 2. the brunette thinks she sees something on the other arm that the blond "will really like". she moves over and goes for it. nope. stick 3. she tries one more time. nope. stick 4. at this point they decide to go get a nurse. now that i have been stuck 4 times and my arms smacked around and beaten and needles digging and fishing, the GD MFing TECHS are going to go get a nurse....AFTER i warned them i was hard...AFTER i warned them that my veins rolled and had been through a lot over the past couple weeks. yeah, i had a few choice names for these ladies at this point, but was in so much pain and so nervous about how many other pokes i was going to endure before an IV actually got in, i held my tongue.
in walks the nurse...the techs are nowhere to be found. i think i scared them off. the nurse starts looking, i show here where they have already poked around, i point out where the best places are to get me, i point out where i have had a recent IV. she starts beating my arms having me make fists, hang down my arms, beat them some more. she finds a spot she is willing to try, she goes for it. nope. stick 5...and she digs around a bit cuz she can't believe she didn't get it. she moves to the other arm and finds another spot she's willing to try, she goes for it. nope. stick 6. she digs around in here for while again until tears are pouring down my cheeks. she gives up and says she is going to get her supervisor.
now, in walks the supervisor...drills me with the same questions. do i have one arm that's easier than the other? etc. i tell her all the same stuff...of course none of these people ever freaking listen! after beating and squeezing me all over again, she goes for a spot just above where the last lady had tried. she got it for a second, but then she blows the vein. ARE YOU FREAKING KIDDING ME?!! THIS HAS GOT TO BE A JOKE....THIS MUST BE SOME JOKE TV SHOW OR SOMETHING. THERE IS NO WAY THIS MANY PEOPLE ARE THIS INCOMPETENT!!!
nope. stick 7. then she finds another place that is again, just about where the other chick tried. she goes for it and fishes until she gets it. my arm is killing me at this point, but its in...finally. now, the nurses are chit chatting about how i don't look like im going to be that hard to get and that my veins just decide to run and hide as soon as they stick me...blah, blah blah. i want to stab them all in the eye as they talk about the pain they have just caused me like its nothing. after 45 minutes of searching and poking, i am finally ready for my 5minute CT scan. scan done...let's go home before i kill someone due to my tortured state of mind. i have a 9am appt with my dr. to go over the scan the next morning and discuss any changes and next steps.

8ish am the next day. my dad and my stepmom pick me up and we head to the 9am appt. as we look over the scan from the day before and compare it to a scan from a year ago, he determines that there is no measurable change in the size of the cancer...which is great news since this type of cancer is fast growing. he can also see that there are still several liters of fluid in my belly as well as fluid in between my left lung and the sack that holds the lung that is putting enough pressure on the lung to decrease its capacity by 50%. although i can't really feel it...i don't have any trouble breathing, i do have pain in that area that is the pressure being put on the lung. so, my dr. orders a different kind of paracentesis...one where the needle goes into the area between the outer sack and the lung and drains the fluid....they go in in between the ribs. OMG....hearing this i got a little freaked out. they also order an echo cardiogram to check my heart because they didn't have one on record and before starting back on my meds, they wanted to have a good look at everything to be sure we were good to go. we head right over to have my lung drained. in order to do this they sit you on the bed and have you lean over a raised table to be as still as possible...they don't want to go puncturing your lung! the initial numbing and stick is actually less painful than when they drain my belly, but it only gets worse from there. as the fluid drains out, you would think that you would start to feel relief...oddly enough, it is the exact opposite. it starts to hurt, really bad, your lung starts to spasm slightly and contract to the point where it feels like you can't breath. you have to cough a lot and if you try to take anything other than shallow breathes, you are smacked with a wave of intense pain. you also feel chest pain and you start to get phlegm in your throat along with the strong urge to cough...which they tell you is fine...cough all you need. coughing, however hurts. anything that causes your diaphragm to shift and push on the lung hurts, so hiccuping, burping, laughing, coughing, sneezing...OMG sneezing. i avoided sneezing a much as i could until finally i had to let it go. i screamed bloody murder when i did finally sneeze. so incredibly painful. well, all of these side effects were only supposed to last for an hour or so....LIES! more LIES! my lung was killing me for close to 2 days...although it did feel a little better each day, it was still extremely painful to sneeze or burp or use my left arm....i hope that i don't have to do that again for a very long time.

immediately after i had my lung drained, i had to go for an x-ray to make sure that my lung was filling back up with air like normal vs. collapsing for some random reason. so, we head down to x-ray and have that done. it is difficult to move in general because every time you move, you shift your insides and my insides were in no mood to be shifted at that point. they wanted to be left alone. anyhoo, the x-ray looks fine so then we head over to the heart specialist to get my echo. this should have been the easiest test all day, and it would have been if it weren't for the fact that i had just had fluid sucked out of my lung and my insides were in shock and moving even fractions of an inch was extremely painful. i laid down for the start of the echo and the tech asks me if i would be able to roll to my left side....i look at my dad in horror and tell the tech "no freaking way dude". i explain to him what i had just been through less than 30 minutes before and that getting down in the position i was in was about all i could manage at this point. he says ok and that he will work with it and try to get everything he needs without moving me. then he asks me to take a deep breath....ummm, did he not just hear what i explained i had done to me? no, you will get no deep breath out of me unless you would like for me to scream bloody murder in you quiet little room and freak out the rest of the patients in the waiting room. he got the deepest breath i could muster and that was that.

20 minutes later, my heart looks perfectly fine and we are on our way home.

now, a brief...well brief about the fluid and what's going on there. when fluid builds up in your body, it is actually your bodies way of trying to heal itself, but when it ends up in random places, it is just confused. this fluid is full of nutrients and albumin or protein. every time i have it drained, my body thinks that something is missing and through a form of osmosis, it is trying to "equalize" what is missing and the fluid fills back up again. SOOOO, now i am on a super high protein diet, the more protein i can get the better to try and help with this phenomenon. protein also helps with the edema as well as walking. the latter i have not been able to do much of however due to the fact that i either pulled or tore my core/ab muscles in a couple of places and could barely move. it is absolutely amazing how often you use your core muscles. you can't move without using them in some way.

last bit of the story. my scan showed that there was still some fluid in the belly that could be taken off. so, i called my dr. on monday to check in and told the immunotherapy coordinator that i wanted to be drained, to get the rest of the fluid off of my belly to ease the pressure and aid in the healing of my core muscles. i was also put on morphine(which i was put on once before for extreme soreness in the abdomen.) i went in on tues and they took 3 more liters out....i was already on morphine at this point a happy camper. i was all giggly and chatty and talked in my sleep like a kid all night long. my boyfriend said it was so funny and that i was acting like i was drunk. ha! morphine is my best friend right now. the only relief i have had in weeks.

so, now i am healing and taking it easy and my pain is under control and the edema is going down and soon i will start walking to help it go down more so that i can start back on my meds in the next couple of days. i am writing this blog entry while im high on morphine. so, i apologize ahead of time for things that don't read right or misspelled words or any confusion you may have. it all makes sense to me right now! ha! also, even tho this entry is long as hell, im sure i missed something because there were a lot of details to deal with last week. especially in my appts. with dr. doom. so, i wouldn't be surprised if there is an "update" soon.

aight peeps....im outie 5 to chill in my happy little morphine-ness. holla!

transfusion schmanfusion!

2009-01-19T15:09:00.003-05:00

ok. so the transfusion of wonderful blood was supposed to make me feel better. well, i'm still waiting for that to happen. i have been one cranky bear for the past couple days. first i felt like i got dumbass blood, if that is even possible. i really felt stupider (i know that stupider is not a word). then i decided that i think i know what it feels like to be 11 months pregnant...yes, i said 11. i know the norm is 9, that is precisely my point. i am so full of edema and fluid right now that it is almost unbearable. i'm trying to drink and walk as much as possible. little baby 10 min walks several times a day. so far i just keep gaining weight rather than it coming off. i am SO freaking cranky i can barely stand myself. the only time i get any relief is when i take a bath. a nice hot bath and i can float my big ole bloated belly in the water. ahhhh....that is the only time in the day that i feel "normal". the edema is moving around...it has moved down my legs now too....my feet look like little loaves of bread in my shoes. im baking bread in my shoes...a new talent that i can brag about.

my memory was not serving me well and my mom reminded me that i really didn't start "feeling" relief last time i had edema until the 2nd week. that it started moving and people could see a difference, but i didn't feel much relief until after the second week. then it started to go down a lot faster once it got going. so, i am waiting a few more days to get further into the second week to see if things start to pick up. if not, i am calling my dr. early(i have an appt thurs) to see if i need to come in sooner. i have to admit that this time yesterday i was worse than i am today, but who knows what tomorrow will bring. up down up down up down up down.....uggg.

calgon...take me away! if i lived on the moon right now, it would be so much more comfortable.

Vampire Revenge!

2009-01-14T21:43:00.002-05:00

well, i had my check up appt. today and apart from the edema taking forever to go down, the only other thing wrong with me right now is my hemoglobin is still low. when i left the hospital it was 8.6 and it is now up to 8.8(i think norm is around 10ish), but dr. doom wants to get it up faster so you know what that means????? THAT means that i get to take back some of what was taken from me by the vampires that lurk in the hospital. i am going in for a 2 unit blood transfusion on friday. MMmmmm....precious blood...i will get you back! yummy O-neg blood....2 units all mine! i get to become vampire for a day. it will take about 5 hrs. 1.5 to 2 for each unit and then they have to watch me for 30 min after each one to make sure that i am doing alright. dr. doom says that it will help me feel less tired and that it will help speed the absorbtion of the fluid from the edema back into my body.

also, i have not been able to taste anything in a very long time. the short breaks i get from the sutent are not long enough to recover from that side effect completely, so dr. doom said i don't have to go back on the sutent until i can taste again. YEAH! i get to taste again. i am so excited. my skinny ass is going to be pigging out once i can taste again. i can't wait! woohoo!

but first, i shall get my revenge on the vampires from last week and replenish some of what was taken from me! friday i will be the blood sucking vampire!

Tumor Fever Tidbit

2009-01-12T11:32:00.002-05:00

so, my mom was doing some research on "tumor fever". this is what dr. doom called my fever last year, he has yet to say that i had the same thing this time. she happened across a fellow cancer blogger who has experienced the same tumor fever as i have and she has done some research on the scenario. here is a snippet:

"'Tumor Fever' is not uncommon and is caused when the tumors "become necrotic" (die).
You end up with dead tissue in your liver & colon which can cause inflammation..."

this particular person has colon cancer that has spread to her liver, thus the mention of the "liver & colon" location. for me however, it would be in the kidney/lymph node area. i had been having pain around lefty for a few days before i got sick. this makes sense with the "dead tissue....which can cause inflammation". although my dr. has yet to confirm whether he believes it to be tumor fever again, all signs are pointing that way since all of my tests came back negative in the hospital. this is very encouraging to me. DIE LEFTY DIE YOU CANCEROUS BASTARD! if tumor fever and pain/inflammation in that area are signs of cancerous tissue dying, then well, it kind of makes the vampire misfires worth it. i'll be asking for a diffinitive answer from dr. doom on the 14th as to whether he thinks it was tumor fever or not and will update you all on what i find out.

i must clarify that when i quote the fellow cancer fighter regarding the "tumors dying", that simply means that parts of the tissue as a whole are dying which causes the mass to shrink, not that the entire cancerous area is dying. it does not mean that lefty is gone when this happens simply that a little more has been chipped away from the S.O.B.

Hospital Stay #3 - vampire misfire(s)

2009-01-09T18:54:00.008-05:00

well, well, well. here we are team beansaver. i haven't had a painful yet twistedly humorous story to share with everyone in a while, so someone decided it was time and that i, once again, was to play the lead character in the story for ya. here goes...

with all the twilight hype going on right now i have to drink a glass of hater-ade for the bloodsuckers during this story(and i love vampires and werewolves and all that jazz).

ok, here goes for real....
sunday after New Years i started not feeling so hot. really achy and tired and cold and splitting headache. i kept drinking a lot of gatorade and water, but nothing seemed to help. i stopped taking sutent in case i was coming down with something. i got up monday morning and was feeling worse so i migrated to another area of the house for a change of scenery and took some tylenol and continued to try and drink. i called my dad and he came over for the afternoon with soup and new thermometers to keep a check on my temp. it was 101ish but went down to 99ish during the course of the day. when dad left i was feeling ok. had dinner and tried for over an hour to keep it down, but it ended up down the toilet. i drank some more fluids and then went to bed, hoping to feel better in the morning. during the night, i continued to get hotter and hotter. i was burning up. finally, the next morning i got up and repeated the routine of the previous morning, but this time, my temp was 103. time to call the dr.

so, i called my dad and stepmom and they called the dr's office and of course they told me to come right in. i get there with puke bucket in tow and they take me right back to the room. at this point my head is pounding, i am burning up with a temp and i am slightly disoriented. they lay me down on the examining table to start to try to relax me. they managed to get a free drip IV in me right in the office to start fluids because i was so dehydrated. after about an hour, i was wheeled to the hospital and admitted. fever still up around 102.7, head aching so bad it felt like daggers being stabbed in and out of my temples and eyes and body aches like i haven't had in a long time. i had also been nauseous all day.
the first call of action once i am in the hospital is......yup, you guessed it....to call in the blood sucking freakin' vampires. AKA the blood people. the ones who come to get blood samples for various tests. they wasted no time..i was barely in bed before she was coming at me, fangs bared and ready to strike. too bad she sucked(no pun intended) and had to poke me twice. well, actually three times cuz she had to take my blood for all sorts of tests. some tests could play nice and share tubes and others could not. well, so far i had 4 holes in me...1 for the IV, 1 for the general labs, 1 for the blood cultures and 1 for the vampire misfire.

on we go, the night is terrible because i have absolutely no relief until i am finally given some tylenol to help with the fever. i have on 5 blankets and my fever is still 102. i wake up about 3 am pouring sweat..apparently having finally broken my fever. my IV that was put in at the drs office is holding up pretty well, but its in an awkward spot and every time i bend my arm, the IV alarm starts going off. so, i had woken up to a soaked, sweaty bed and beeping in my ear. i call the nurse and ask for new gowns and for my bed to be changed and for the other nurse to come and check my IV because it is beeping. (two nurses do that variety of things).

so, im back in bed still feeling fluish, but a little better and all snug and fresh and ready to go back to sleep when someone comes a knockin'. GRRR. "hello, good morning! how are you?" freaking vampire #2 'oh, hell' goes through my head. good morning?, good morning??!! its freaking 4 am...that in my book is not a good morning...it is a very good late night maybe, but NEVER is 4 am a good morning. i was hoping that this bloodsucker was more skilled....unfortunately my hopes fell short as the concerned, concentrated, frowning look formed on her face while looking at my free arm (without the IV) as if she didn't have a juicy place to bite. "here we go" i thought. she finally went for a spot in my elbow-pit that most good bloodsuckers can nail every time. she didn't. then she goes for my hand which EVERY bloodsucker has ALWAYS gotten....she didn't. she tried another spot on my hand and got it, finally. as usual when she is done and on her way out i say "thanks" and "you too" in response to her "have a good day". meanwhile i am remembering ways to kill a vampire in the back of my head. back to sleep...as much as i can get between the "knock knock - time for meds, knock knock - vitals, knock knock - taking your trash, knock knock - im leaving for my shift in an hour, knock knock - shift change, knock knock - morning dad!"

the next day i actually felt slightly better. my temp had gone down to 98.5 or so which is still a little high or me, but not technically running a fever..YAY! i still had a headache but it was greatly dulled by the tylenol and i was on a regular dose of it. i was also getting calcium, magnesium, antibiotics and potassium along with my regular meds. i was resting and talking with my dad after a fruit plate breakfast and for once, rather that having to run to the potty, i just had some gas....so i farted. im the patient. im allowed! we giggled like kids and then i farted again. a few minutes go by and i fart again....only this time, a look of horror spreads across my face as i felt a warm puddle form at my butt. OH NO! I SHARTED! DAD, DAD, HELP, HELP! i have to get to the bathroom, i trusted a fart and i shouldn't have HELP! my dad, usually as sympathetic as a nun, was laughing his ass off. what i haven't mentioned yet is that my bed had been made again because i sweated out more of my fever the rest of the night after the first change, so the sheets i sharted on were only about an hour old. the guy that came back to change the sheets while i was in the bathroom changing my shorts said "i just changed these!" ha! sorry dude. shit happens...literally. the food was, well, hospital food, there is no need to completely gross you out all in one post. my dr. ordered x-rays of my lungs and they looked clear. unfortunately i was left down at x-ray for 45min after i was done and became very, very cold. i managed to avoid the bloodsuckers the rest of the day....cuz they mostly come out at night....mostly.

as i settled for bed i was beginning to become uncontrollably cold. shivering like crazy. i never completely warmed up from my trip down to x-ray where they left me like an unwanted child waiting...freezing my fever having ass off until the transit people decided to show back up.
i digress....so, im trying to get warm and settle down to sleep while hoping that the tylenol fairy will bring my dose early to help my splitting head. give up kids...there is no tylenol fairy, there is only frank the nurse and he won't bring it until it has been 8 hours damnit! temp had actually hit a low of 97.5 that day (my norm), but now it was on its way back up and made it up to 100.1 before i managed to get the next tylenol dose. i finally got to sleep through the shivering and broke my fever again around 3am. i called again for new sheets (this time i didnt shart in them...i promise). as im getting all tucked back into fresh dry sheets and a new dry gown...knock knock.....blood sucking vampire time. yes, the worst blood sucking experience i have had to date....and i mean ever, not just during this stay. she looked at my arm like the ones before and settled on the spot i told her was good for most of her fellow blood suckers if they were quick, my elbow pit. she tried, and missed...whined about the vein rolling and tried to chase it. this hurts like hell you know. i finally said "okay outta there!" then she tried the hand, which she claims she got, but said that nothing was coming out. so she got out of there. she himmed and hawwwed and finally said "i'll just drip it out of your finger tip". WHAT? are you kidding? no, she was not. so, she proceeded to prick my finger and squeeze and squeeze and squeeze and squeeze to drip and drip and drip and drip until finally she thought she might have enough. then she left. when she walked out i had bandages on my elbow pit, my hand and my finger, all on the same arm. then my IV started beeping and i had to call frank, my nurse, again. when he came to reset the pump he actually laughed and asked what happened to my arm. i told him that the blood sucking vampires sucked me dry and had to get drops out of my finger. he cracked up and started to help me take off all of the bandages. that was around 5am...i napped after that.

the next day when dr. doom came to see me he said i was improving, but now i was getting fluid on my belly from being pumped so full of IV fluids. he ordered an ultra sound to determine how much fluid needed come off and how much was edema buildup and scheduled me to be drained that day. he also told me that he was going to cut down my IV fluids from 150ml/hr to 75ml/hr. great. slow it down so i don't go home with 30 pounds of freaking edema like i did last year. he also said that i was going to be there another day and that i needed to start walking around the halls once i got the fluid off. so, time to move the IV that kept going off every time i bent my elbow....we waited 2 hours for the IV chick. when she finally came and moved it, it was the worst, most painful IV stick i have ever had. she had me in tears. finally when it was over, guess what....yup, another bloodsucker came in wanting her share. she must have smelled the fresh stick and came running since it was 2 in the afternoon!! at this point, she was having a hard time figuring out where to stick me because i had 3 holes in my elbow pit, 2 in my left hand, 1 on my left ring finger, one healing IV line in my right arm and 1 in my right hand. she decided to go for the place where 3 had gone before and none had made it back with any blood. i told her she had to be quick cuz my veins were rollers. she tried .... and .... YIPPIEEEEEEE!!!!!! she made it. finally, one of the bloodsuckers was able to get me without multiple pokes in ridiculous places.

only one major poke left for the day. to be drained. i went down to be drained shortly after that and that actually went just fine. they pulled 2 liters off, so 4.4lbs. then they sent me back upstairs and i rested. done...i was going home tomorrow....yeah!

i had a slightly restless night...weird dreams and restlessness so i decided to walk at 1 am. i walked around the halls and then settled into bed. i ended up sweating my bed out again just to be thorough i guess since i wasn't running a fever. called for the new sheets around 5 and had the usual interruptions until i was forced to get up. dr. doom came in around 8ish and told me that i needed another bag of IV magnesium and that i was probably going to be released, but that he would let me rest and be back later. by lunchtime he was back and i was told that this chicken was flying the coop! thank goodness! he didn't know why i came down with the fever, my lungs were fine, none of my blood cultures came back with anything, my white cells were down and my hemoglobin and platelets were down....typical with my sutent meds. he told me to not start back on my meds until i met with him again on the 14th. i asked about just the flu...if there was a flu test and he simply said that he didn't think that was it, but mostly just sluffed off the question. he's not the type to give the first easy answer so i think he wanted to pin it on something else so he can make sure it doesn't happen again. if it was the flu, he can't control that.

phewwww! sorry for such a long story guys, but i felt that one deserved to be told. i have a new nickname for a group of my caregivers....Blood Sucking Freaking Vampires. they take my blood, they always cause pain, and they mostly come at night......mostly.

Happy New Year!

2009-01-02T13:31:00.002-05:00

well, as many of you know who have been with me from the beginning (or who have caught up by reading from the archives), you know that i just hoped to make it another year. well, baby steps as they say and i made it. i'm still here! not only am i still here, but i am still making progress. it is hard as shit and there is no way i could do it without the help i receive from so many people, but my body is continuing to fight. i am continuing to fight. FIGHT FIGHT FIGHT! i am in week 2 of my 3 on 1 off cycle and will be able to take a break starting on jan. 12th. my next check up appt. is jan 14th....i think. i'll have to confirm that later.

anyway, just wanted to check in and wish everyone a happy new year. i would have posted sooner, but i haven't been feeling very well for the past couple days and haven't been on the computer.

thanks team beansaver! those of you whom i do not get a chance to see very often, i miss you terribly. i hope that we can find a way to visit more in 2009! love you all!

Christmas here i come!

2008-12-21T21:40:00.002-05:00

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!

Christmas Overkill??

2008-12-18T10:13:00.006-05:00

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.

caught up in christmas cheer....sort of.

2008-12-12T17:48:00.002-05:00

sorry its taken me so long to update the thanksgiving week from hell. well, i went in for my IV infusion of magnesium and that went fine. then i went to be drained and that went as it usually does. the PA didn't get me with the first poke and had to do it again and deeper like i told her in the first place. i understand why these people don't want to listen to me, the patient....it makes it seem like im telling them how to do their job. im really not. im a good patient most of the time. i put on my big girl pants and deal, but i know my body better than anybody AND i have been drained several times now and have actually had one of the PA's tell me to tell the next one details about me to make it go more smoothly. to just go in on the left, no matter what the right side shows on the ultrasound. i need 2 shots of lidocane and they have to go deep...farther than they think before the fluid will start coming out. see, there is a lot of scar tissue built up on that side, which is why they have to go in deeper than they think. they tell me every time that there is scar tissue there from them poking me....i try to explain that i have only been poked 4 or 5 times in a year and that i have a whole lotta mess going on on the left side that has nothing to do with a little poke in the side.

anyhoo, once that was all over i was finally able to relax and try to have a nice thanksgiving. BUT, and there always seems to be a but doesn't there....i was in a lot of pain. really sore from being drained this time. so, i wasn't able to do a whole lot the rest of the week. i did manage to help with some of the cooking, but not much. i was able to eat tho...and that was the main goal. to feed my skinny ass!

so, beginning of the week, not so good, but by the end of the week i was doing pretty well. now i am completely caught up in the race to christmas. shopping, wrapping, decorating....uggg....who's idea was it to do all this work for one day? it's like "keeping up with the jones'" on my street. one house puts up some lights...then the next house puts some up....then the first house puts up more. its insane. i actually went out and bought one of those lit animals. its a polar bear playing with a red ball that lights up and moves back and forth. it in no way competes with the people across the street from me. OH NO....they have a 7ft. blow up snowman that stares at my house all day/night long AND a 6ft. blow up snow globe in addition to the lights on their house. look out clark griswald....you've got competition. i think i actually heard a plane that was coming into charlotte-douglas change course because they thought the griswald wanna-bees house across the street was the beginning of the runway.

oh well, it's all good fun and holiday cheer right?! go in debt shopping for decorations and presents and get half a dozen paper cuts wrapping. but, it's all worth it for one day of glory where the retail therapy has paid off as you watch everyone open their presents.

oh, i do have a regular follow up appointment this thurs. 12/18. its just the 3wk routine visit, but i will try to get a quick update/post on here after that appointment to let everyone know how it went before the holidays.

Happy Freaking Thanksgiving...

2008-11-25T18:08:00.002-05:00

well, once again, just having a smooth holiday is not in the cards for beansaver. i had my 3 month scan on monday and my follow up appt. tues. (today). my scan showed that the lesions on my liver were pretty much gone...well, they at least weren't showing up on the scan now, but i have so much fluid built up that it was hard to tell what was going on everywhere else in my torso. the other thing that we could tell definitely was that i have built up more fluid behind my left lung...not IN my lung, but behind it so that is putting pressure on my lungs and the fluid that is elsewhere in my torso/belly is putting pressure on everything else. soooooo, we decided to make an appointment for me to be drained tomorrow (wed.) the day before Thanksgiving. ok..fine...no problem, unstuff me the day before i want to stuff my face with turkey. well, then they took my blood and ran my labs the way they always do every 3 weeks. last time my potassium and calcium and electrolytes were down. this time they were all fine, but my magnesium was down. so, they had to call in a last minute prescription for me to take 3 magnesium pills tonight and then i have to go in to the infusion unit tomorrow at 10:30 to get an IV dose of magnesium before my appointment to be drained at 1:30. i also have to have blood drawn again before i go to be poked and drained. :( another full day at the doctors/hospital. all of that is after today when i had to be poked twice already to get my labs drawn because the chick blew my vein the first time. wawawa.

i should be happy about my scan. i should be thankful that the cancer is not growing like crazy since that is typically what this type of RCC does. it is very aggressive and fast growing, so the fact that it did not get any bigger for this scan is progress. i, however, am a perfectionist and want to excel at everything and had gotten used to receiving great news with every scan. i got used to "exceeding expectations" and being my drs. favorite case, the topic of conversation during the Monday conferences with all the other doctors. the almost unheard of "50% reduction" being the norm for me....that's what i wanted to hear again!!! yes i am spoiled. i admit it. this time, i will have to settle for the "holding steady with slight progress". the most frustrating thing is that there isn't anything i can do to change it. i can't make the meds work better. i can't make the cancer die faster. i can't make the fluid stop building. i am at the mercy of my body and chemicals and drugs that i can barely pronounce.

at the very least, i will have a belly that is drained of fluid so that i can fill it up with yummy Thanksgiving treats with my family. yeah to being able to eat more than a cup of anything at a time...more room in the tummy means more turkey and all the fixin's for me! yippie!

so, thanks for all your thoughts and prayers team beansaver....have a Happy Freaking Thanksgiving.

steady as i go....

2008-11-14T22:52:00.002-05:00

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

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

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

Break time!!!!

2008-10-28T17:13:00.002-04:00

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!

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

2008-10-17T10:08:00.005-04:00

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 either describe or mean "sex". or for cultures that value something, they have a crapload of words to describe or refer to that most valued thing...IE money, moola, cash, cashola, bills, benjamens, coin, bucks, etc. etc. so, in my world, i think im up to approx. 30 different ways to describe what has just exploded from my ass....sorry to be so crass and blunt, but hey, that's life baby...why sugar coat it?! Mmmm...sugar coated anything sounds good.

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

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

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

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

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

Are we there yet?!

2008-10-11T13:23:00.002-04:00

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

2008-09-24T10:16:00.009-04:00

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

2008-09-17T15:52:00.008-04:00

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 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!!!!!!!

2008-09-17T15:52:00.004-04:00

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...

2008-09-10T10:18:00.002-04:00

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 i am supposed to start back on the daily tums again. otherwise it is business as usual.

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

tootles team beansaver!

Perfect Puppy Patient

2008-09-02T17:46:00.004-04:00

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 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!!!

2008-09-02T11:43:00.003-04:00

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 back on her cuz she might be rearing or hauling off and nailing you with her back leg when you turned back around. of course her mother thought she was an angel. ha!

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

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

back to the usual topic....me.

2008-08-31T14:08:00.002-04:00

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 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....

2008-08-31T09:42:00.005-04:00

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 that's just not the same. so, here's another shout out to TRUE Chesapeake bay style Maryland crab cakes. YUMMY TO MY TUMMY!

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

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

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

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

this is my pup now. what a sweetie!

Lovely new side effect...

2008-08-26T12:32:00.002-04:00

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 considerably now and just feel like normal callouses...with a yellowish tint to them thanks to good ole sutent.

My ears were burnin'!!

2008-08-26T12:07:00.004-04:00

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 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.

Happy Anniversary Lefty!

2008-08-16T14:22:00.003-04:00

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 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!

Drink your milk!

2008-08-01T10:24:00.002-04:00

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! :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!?

Steady as she goes...

2008-07-29T16:05:00.002-04:00

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

Best laid plans....

2008-07-21T15:15:00.005-04:00

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 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!

the triple threat...fluid be gone!!

2008-07-02T09:22:00.006-04:00

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 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!!

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

2008-06-23T12:44:00.003-04:00

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.

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

2008-06-23T12:37:00.002-04:00

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....

You look Maaaarvvolousss!!!!

2008-06-06T03:16:00.002-04:00

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 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!

The Magical Amount....

2008-06-02T09:32:00.003-04:00

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!

2008-05-30T16:25:00.002-04:00

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!

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

2008-05-24T22:04:00.003-04:00

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 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.

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

2008-05-21T16:56:00.004-04:00

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, 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.

having a rough time....

2008-05-17T08:38:00.002-04:00

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.

speedbump within the speedbump... :(

2008-04-19T12:47:00.002-04:00

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 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.

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

2008-03-28T17:29:00.002-04:00

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 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!!!!"

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

2008-03-16T20:09:00.001-04:00

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!!!!

UPDATE: Gonna be kickin' it oldschool

2008-03-12T13:38:00.003-04:00

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 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.....

Nothin' left on the left...

2008-03-09T04:18:00.006-04:00

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!

Houston....we are a go.

2008-03-06T17:04:00.005-05:00

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.

Name that Team!!!

2008-02-28T14:23:00.003-05:00

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!!!!!!

2008-02-28T11:47:00.005-05:00

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!)

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

2008-02-25T10:01:00.002-05:00

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!

The little engine that could...

2008-02-18T11:28:00.003-05:00

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!

Worse than the dentist

2008-01-31T09:19:00.000-05:00

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!

Dates, Dates and More Dates...

2008-01-27T14:41:00.000-05:00

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.

One small step for WOman...

2008-01-11T23:45:00.000-05:00

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!

Mmmm....Mmmmmm...Sutent.

2008-01-05T13:15:00.000-05:00

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!

I AM A CANCER KILLING MACHINE

2008-01-03T10:53:00.000-05:00

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

2008-01-03T10:45:00.001-05:00

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

2008-01-03T10:16:00.000-05:00

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!!

Die, die, die my darling!!!

2007-12-19T14:11:00.000-05:00

i am a walking, cancer killing machine...or so i hope! tonight is my last sutent pill in round 2 of the sutent cycles. thankfully, i wont be feeling like ass over the holidays since my 2 weeks off starts tomorrow. yippie! the side effects will slowly subside over 4 or 5 days and then i get to have over a week of normalcy. its funny what you start to be thankful for...i am thankful for feeling normal for a day. w00t!

the only day that will suck is the 27th, the day of my scan. my onc nurse told me that i will have to do the drinking dye, not just the IV dye. yucky mcyuckerson!! i have had 5 CT scans and have only had to drink the dye once. that stuff is disgusting. they give it to you in 6 cups, like they are lining up shots on a bar. then they ask you what your favorite drink is so they can add it to the cups to "cover up" the taste of the dye. NOTHING can completely cover up the taste, but ginger ale does a pretty good job. anyhoo, you have to drink each of these mega shots within a hour and a half. one every 15 to 20 minutes(if you do them all at once you will puke your guts out). by the time you finish the last one, the first one is already screaming to come out the other end. this is not fun. you dont know whether to put your head in the toilet or your ass on it cuz you dont know which end is going to blow first. by the time i got down to the ct room, i had already puked once and blown out the other end at least 6 times...within an hour. i couldnt make it longer than 10 minutes without needing to be near a bathroom. so, because of this lovely side effect, i am dreading my scan day.

there is a medical reason for the way this dye reacts in your body. it is not good for the digestive dye to sit in your system for very long, so they add the special "trigger" to it so your body will get rid of it as soon as possible. great. bombs away! but, if the scan comes back and shows that i am killing cancer, in the grand scheme of things....it sure as hell is worth a little colon blow to kick cancers arse!!

2 Dollars - I want my 2 DOLLARS!

2007-12-16T20:31:00.000-05:00

The drug that i continue to refer to that i am on, sutent, is a whopping $8500 for 28 pills(1 cycle). and no, i didnt forget the decimal point. with my insurance, i pay $2500, then all Rx after that are completely covered because 1 cycle of sutent alone meets my deductible. the reason these little capsules of diamond dust cost so much is because the drug is so new and only available through pfizer. the drug also has limited use currently because it has only been tested on a few things. if they found enough other uses for it, the cost could come down. this is another reason the post below is so exciting. whether my nerve bump is related to the cancer or not, the fact that the sutent seems to have an effect on it is big news in itself. if i was a dr. with a patient that could put me in the the pages of medical history, i'd be pretty damn giddy too.

Dr. Doom DOES Laugh!

2007-12-11T19:17:00.000-05:00

3 weeks into the sutent cycle, i have to have my white cell count, platelets and hemoglobin checked to see if i can safely finish the 4 week cycle. so, today i had my 3 week checkup. i wore my "My oncologist is better than your oncologist" t-shirt...hoping for a smile to appear on dr. dooms face like at the end of the grinch that stole christmas. not only did i get a smile, he was laughing and blushing...it was great. i told him that it is my goal to make him laugh every appointment...he told me that it is his goal to get the bad kidney and ovary out of me.

after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly optimistic tho since the sutent hasa lot of work to do to get to the point where my kidney is operable. so, i am hopeful, but realistically hopeful so that if i receive bad news come Dec. 28th, i will not be completely crushed, it will simply be a minor setback.

on a side note...i have what my family has always called a "Nerve Bump" on my arm. it is an extremely sensitive nerve ending that has grown up from the muscle and forms a bump just under the skin. it looks like a bug bite. i have had it since i was 18. with some light research online, my family believed it to be Reed's Syndrome. my grandmother has some on her arms, my aunt has them all over her arms and back, my mom has a handful on her leg and i have 1 on my arm. my aunt found out that she had a large fibroid tumor. it was benign and she had it removed. my mom also had fibroids years ago...i however, have never had any fibroids. my aunt is in so much pain all the time due to her nerve bumps that she has done a great deal of research online and found some research that linked these bumps to fibroids AND cancer! It is now called HLRCC(Hereditary Leiomyomatosis Renal Cell Carcinoma). we brought this to dr. dooms attention a while back and he looked into it, but determined that based on what the pathologist saw from my original biopsy, they were not related.

Today i tell him that my nerve bump is not only much less sensitive, but it also seems to have reduced in size. he was so excited and interested in this fact, he said "we're going to make you rich and famous!" he left the room and went to get who will hopefully be my surgeon, dr. white to show him this amazing bit of biological material....first thing dr. white said was that he wanted to get a t-shirt like mine, then he said he wanted to biopsy the nerve bump because it was fascinating! they were like giddy school kids...they were so excited by the potential discovery that could be awaiting them if they could just get a piece of me! then a little bit of reality set in and they said they wouldnt do it until my blood work came back. at that point, we decided to schedule the biopsy for a later date...once we got my blood work back and it looked good to proceed.

so, THAT was exciting too! if they find a link between my nerve bump and cancer...i might be famous! i might actually be going through all of this for a reason....to help others in the future...and i might actually get to see and be a part of this medical advancement. today was all positive. absolutely wonderful. I am still keeping my fingers crossed for my scan on the 27th....please be good news!

Sutent - he loves me, he loves me not...

2007-12-02T22:16:00.000-05:00

this post will be short. the side effects of the 50mg 4 week cycle of sutent tends to sneak up on you. the first week or so into the cycle is not so bad, after that, the side effects start to build up. you have good days and bad days...bad days include extreme fatigue or not being able to stay out of the bathroom and having to force yourself to go do something cuz you know it is good for you to get moving...even if it is just to the store for a quick outing. good days include less time in the bathroom and enough energy to feel almost normal again. today was one of the bad days and im barely in the middle of week 2.

i do have to admit tho, i have been lucky. i have read multiple other accounts from patients on sutent that have more and worse side effects than i do. if the nausea, diarrhea, sensitive fingertips, pealing tongue, sensitive mouth, white hair, weight loss, yellow skin, highlighter yellow pee...all of the side effects i am experiencing are the price i have to pay for my "miracle drug" to work...bring it baby. i can take it! i may be a whiny baby for a couple weeks during the full 6 week cycle, but if its working, its worth it. PLEASE let it be working! December 27th...the date of my next scan to see if there has been any change...please, please, please be working.

Cancer - like being naked in public

2007-12-01T21:49:00.000-05:00

an old friend that i pretty much haven't talked to since i was diagnosed wrote me a letter that really struck me. he wanted to "break the ice" again with our friendship, but wasn't sure how. we were the type of friends that could go months without talking, but then hang out like we had just seen each other the day before...like no time had passed. we could confide in one another, laugh together about things that few others (if any) would find amusing, or just shoot the shit over drinks. yes it is possible for a guy and a girl to be friends and thats it.

anyhoo, I miss him along with several other people and his letter really got me thinking and evaluating my seemingly instinctual actions. why do i feel so embarrassed about my cancer? why do i feel the need to retreat from my friends vs. embracing their offers of support? rationally speaking, it is completely ridiculous...there is nothing to be ashamed about, nothing to be embarrassed about...i can't help what has happened to me, yet i continue to retreat from all but a select few. emotionally, however, it is more complicated. is it that i miss the life that i once had and being around these people will remind me of that? is it that i fear i won't be able to handle facing that right now? I rarely let people see me cry...maybe it is the fear that i will cry in front of them and won't be able to stop. but why the fuck should i care about these things?! they are so pointless to stress over. change is necessary and the only thing that is a sure thing in this world. am i strong enough to roll with punches and adjust? i like to think i am...but maybe it is that doubt, that fear that i can't "roll with the punches" and not wanting to "fail" in the eyes of all of those close to me.

if you can't tell by now, i am a perfectionist. i am also an obsessive over-thinker. both of these things i am working on changing about myself. i do know that accepting that you will never be perfect is the first step to happiness and not sweating the small stuff is also key. knowing what you need to do and actually doing are 2 completely different things.

i have finally learned that small steps are better than none at all and i am slowly coming out of my shell again. i've already sent my friend an email. :)

UPDATE: 12/3/07
Another friend so kindly pointed out that it is probably the fear of rejection. why didnt i think of that?! "they accepted the healthy 'me', will they accept the cancer 'me'?" the cancer me doesnt do the same things the healthy me did...i don't go out for drinks after work, i go to bed early...i basically live like i am 95 and i am only 31. a big day is going to the grocery store AND putting up xmas decorations. w00t! w00t! will they accept all of these changes in me or will we drift apart? Damn...he hit the nail on the head...
the answer to these questions is yes, they will accept me if they really are my friends and truly care...if they aren't and don't....then they can fuck off! enough said.

FMLA - Not long enough to cure cancer

2007-12-01T17:36:00.000-05:00

my company honors the FMLA...120 days paid leave. after that you have to apply for LTD which is one of our benefits as well...you have to be approved by the company that provides the LTD however. w00t! I was approved today and will start receiving 60% of my current salary at the end of Jan. too bad that my last regular paycheck is in Dec...i won't have a paycheck for approx. 5 weeks. it could be worse, my case was actually approved within 2 weeks for LTD...i was told that it can take 2 months. My company will keep me on disability for 2 years and during that time will continue to keep me on their insurance for the rate i was paying as a regular employee. After the 2 years, i must apply for SS and take over the full payment of my insurance. IM JUST HOPING TO MAKE IT 2 YEARS!!!

I hafta admit that the best thing about FMLA is if you go back to work for 3 (or 4 i dont remember) months, the whole thing resets and you can go back on FMLA if you need to (and thus back to your full salary). so, although 4 months is not long enough to cure cancer, if you have a supportive boss and company, there is no reason why you can't work something out so the system actually works in your favor for once. i have yet to be stable enough to be able to commit to work for several DAYS let alone several months, but each day as i get stronger and more stable, i hope to be able to work something out.

Hospital vacation #2 - thank u sir, may i have another?!

2007-12-01T15:51:00.000-05:00

my first hospital visit lasted 3 days and cost $21k. i felt completely fine for that visit, i was in for all of the tests that lead to my diagnosis...my second hospital visit was not quite as comfortable. this time i was in for 5 days and it cost $20k...

the reason for my second visit...well, i had been on sutent for 10 days. i had also been receiving radiation treatments for the spots on my spine for 6 days. on the 7th day, i developed a fever. it was the worst fever i have ever had. over 103° constantly...the fucker wouldn't break. i was taking the maximum dose of fever reducers and they would break the fever for maybe 30 minutes of relief, then it was back to chills and an extreme headache like i have never felt. at one point i had a flanel sheet, a blanket, a down comforter and a thicker winter blanket on me and i was Still shivering...teeth chattering and all. on the 3rd day of the fever we called dr. dooms office and they told me to come in. i actually felt slightly better and was able to get to the office and wait. they admitted me to the outpatient infusion center, treated me for dehydration and took blood and pee for tests. while i was receiving fluids, my fever came back...my temp was up to 102° again. they gave me some tylenol and after my fluids were done, they sent me home with a Rx for an wide range antibiotic. that was on a monday, by wed., i was no better and so tired and weak from the fever over 4 or 5 days, we called again and they told us to come back in. i was so miserable...i was begging for help...something...knock me out PLEASE! once i got to the dr.s office, they took one look at me and said "omg, we are admitting you to the hospital right away". their offices are connected to the hospital by sky bridges, so they called immediately for a transport and as my wheelchair and driver arrived, my fever started to break again...it broke so hard i was sweating profusely and in such a daze that i almost passed out.

once in the hospital, they started me on fluids again...while i was there i had 4 bags of potassium, 2 bags of magnesium, 1 bag of sodium and 5 bags of regular fluids. i had another ct scan with both IV and oral dye. THAT was awful. My pee turned burgundy-ish red...this was due to my liver reacting to the antibiotic. (apparently your liver controls the color of your pee by releasing different enzymes...when you piss it off, it turns burgundy-ish red...who knew?) after all that, they couldn't determine what was causing the fever...there were no infections, no cold, no flu, nothing. they finally concluded that it was "tumor fever"...triggered by the combination of sutent and radiation. my body just couldnt take it.

they started me on indocin...a drug that controls your temperature so that even if your body wants to have a fever to fight against something, its natural defense, indocin will keep your temperature at a normal level. (this sucks btw... i just felt wrong the whole time i was on that stuff...unfun!)

by the time i was released from the hospital on the 5th day, i had gained 30lbs of edema....try to imagine that...in 5 days you are carrying around an extra 30lbs. it was painful, caused intense pressure and discomfort and put major stress on my spine. i was so weak when i got home that i could barely go up the stairs. i had lost almost all of my stamina in less than a week. how the fuck can you "stay positive" with that shit happening to you!!

it took me over 2 weeks to get all of the 30lbs of edema off. i finished the last 7 days of my radiation plan and the week after that i was on sutent again. at this point i was taking 15 pills a day...1 to protect my stomach from all of the pills, 1 for my thyroid that was now "off" due to the sutent, 4 for anxiety, 3 for fever control, 5 for pain management and the golden 1, sutent. I hate drugs. i am EXTREMELY sensitive to medication...before all this, i couldnt even take regular cold medicine, i had to take children's cold medicine cuz adult medicine made me feel weird and worse than if i hadn't taken anything.

now i am extremely paranoid about being around people who may be sick or may have been around others who are sick. especially since it is flu and cold season. if i get sick, my body won't be able to handle it and it will be another fun-filled trip to hell for the bargain basement price of $20k.

whats so scary is as bad as this experience was, i know it will get worse...i know that it is not over... i know that pain, my worst fear since childhood, is my reality now.

Save the Beans...cuz cancer sux.

2007-11-30T12:17:00.000-05:00

i was diagnosed with stage IV kidney cancer aug. 2007. i am 31 years old. WTF?! that is what everyone...including my doctors were thinking.

here's how the cancer part all started...one monday in august i woke up with the worst lower back pain i have ever had. it was weird cuz i hadnt had back pain in years.
it felt like i had just slept wrong or pinched a nerve...
so, i had a big project going on at work and went in monday and tues. just sucking up the pain. on tues, i also had blood in my urine. so, on wed i stayed home, basically in traction...i could barely move by then. i made an appointment with a urologist thinking maybe i had kidney stones. he couldnt fit me in until friday. i went in and they took my blood and my pee and scheduled me for a CT scan for the following tues. my back was still hurting, but seemed to be on the mend. the blood in the urine was gone within 24 hours. on wed afternoon(day after the ct scan) i was running around town prop shopping for a major photoshoot i had on thurs. i called the dr.'s office to give them my cell number and to find out when i would get word on my scan. the nurse told me that the dr wanted to see me as soon as possible, like friday. i told her i couldnt thurs. or friday, that it would have to be today(wed) she said he would fit me in at the end of his appointments.

now, let me tell you, my dad was out of the country for a 3 week vacation, they had left on tues. my mom lives 8hrs away and my husband was in boston on a business trip. i get to the drs office at 4....by 5:30 i am actually talking to the dr and going over my scan.
he shows me some garbley goop on the screen that looks like an ultrasound picture where you can't see shit...
anyhoo, he shows me this grapefruit sized thing on one side of the screen and tells me that he is pointing to a cyst on the top of my left kidney. im thinking "ok...cyst, those are usually not that dangerous". then he scrolls down and shows me what he calls "normal kidney tissue"....im thinking..."still ok." then he scrolls down to what is the bottom 1/2 to 1/3 of my left kidney and tells me that what i am seeing is abnormal tissue.

aka...cancerous.

he shows me the kidney on the other side and explains how that is what the left one should look like....but he's not done.
he then shows me another grapefruit sized cyst that is my left ovary. my obgyn oncologist thinks that it is just cystic in nature and poses no threat. he said that is the least of my worries. (i found that out later)

back to the urologist visit...
he asks me if i have anyone living with me...if i have anyone here. he apologizes for not offering me tissues because i am crying by now as all of this is hitting me...he is visibly frazzled that my case is so serious, but at the time i didnt realize that was why he was frazzled. he wanted to admit me to the hospital immediately...i tell him that i cant, i have a dog and i have a major project at work that i have to hand the details over to someone for a photoshoot the next day. he says fine, that i am to be admitted first thing in the morning.

by the time i get out of there, i am completely in shock...first i call my boss to tell her what is going on...she knew i had a drs app. and that something was wrong.
i get about 3 words out before everything i was telling her was through tears and she could barely understand a word i was saying. i finally manage to tell her what is going on and that i need to hand all this crap over to her to take over the project i had been working on.

after a rough and sleepless night, i head to the hospital with my husband who came back from his business trip. once i was in the hospital, they gave me another abdominal CT scan, a chest CT scan, a full body bone scan and a head and full spine MRI. my head is clear, my chest is clear, there are 4 spots on my spine which is why my back hurt, but the rest of the bones in my body are clear. apparently, the cancer spread from the bottom of the kidney over to the lower spine and caused the spots there. the cancer is putting pressure on my spinal cord and compromising the structural integrity of my spine. they were very freaked out about that. they barely let me move around until all of the neurologists had looked at all of the bone scans and mri.

while in the hospital, i still dont quite know what is going on. i know that it is serious, but i dont realize how serious. im thinking immediate surgery or something like that. at one point, i had 6 different specialists working on me. spine guys, neurologists, urologists, renal oncologists and obgyn oncologists.

then, Dr. Doom (as i lovingly knicknamed him within 2 minutes of meeting him) comes in the room with a nurse.

Dr. Doom starts going into the statistics of my condition and how only 10% of us present my symptoms and out of that 10% there is only a 30% 5 year survival rate. all this heavy, heavy shit that i am not fully comprehending and there is nobody with me. i just keep nodding my head thinking "someone is coming, someone will come and rescue me, someone will help me...."

...and then my mom walks in. i tell Dr. Doom that he is going to have to explain everything all over again to her because i dont think that i got it all. he totally changes his tune and says...well, we are going to come up with a plan once we get all of the tests results in...and then boom, he was outta there.
i felt like i was totally ambushed...

after i got out of the hospital, i had an appointment the following monday with a second urologist that specialized in kidney disease. i go to the appointment with the second urologist...and this time i have a full entourage with me. we are all piled into a room and the dr is going over my scans on the screen with them...he is the surgical specialist also and this is when he drops the bomb that the kidney is currently inoperable....due to the fact that the cancer has also spread to lymph nodes around the kidney and around my aorta and has basically created a concrete barrier surrounding the aorta and he cant get to it to cut off the vein and get the kidney out. so....this is when he officially refers me to Dr Doom (whom i had already seen when i was in the hospital) for immunotherapy treatment.

so, my dr doom doesnt smile very much. he is a specialist in immunotherapy and one of only 20 drs in the US authorized to prescribe my meds...he's uber smart and to the point, but i keep trying to make him laugh cuz, well, cuz that's how i am. thats how i deal with stress. he asked me if i had been exposed to a bunch of chemicals and i said "only if you count being born in West Virginia." I actually got a smile for that one! (he is actually very nice and very good at what he does...he is just very to the point and doesnt pussyfoot around. i like it now...what i see is what i get...)

Cancer chapter of my life begins...Life on Sutent

2007-11-30T12:16:00.000-05:00

i am on a drug called Sutent which uses the bodies immune system to fight the cancer. since my immune system is so busy fighting the cancer, i can get sick very easily and have to stay away from people who are sick or have been around other people who are sick. basically while i am on these meds, it is like i have aids...my white blood cell count goes down as do my platelets and my hemoglobin.

translation...i get sick easily, fatigued quickly and if i cut myself, wont stop bleeding.

i have to have my blood checked every 3 weeks to make sure that the levels are okay to continue...the meds have fucked up my thyroid, so they had to put me on thyroid meds.
my anxieties are through the roof so i am on a drug 4x a day for that. oh yeah...and my hair is growing in completely gray...lovely side effect. i get nauseous easily, i have the runs all the time. my mouth gets extremely sensitive, my tongue peels, my finger tips get extremely sensitive. i turn yellowish...my pee is highlighter yellow...all from the Sutent. while it is making my immune system fight, it is also slowing the production of cells in my body. since cancer cells grow faster than normal cells...they also die faster when they are denied the nutrients necessary to grow. because of this, in 30% of the cases taking Sutent, they have actually reduced the size and amount of cancer in their bodies.

so, my fingers are crossed that this "miracle drug" gives me my miracle. i am hopeful that my body is strong enough to fight this, i am hopeful that i will live to see next christmas.