The Magical Amount....

The magical amount.....but not enough to hurt you.....the magical amount....its just enough to work!!!

okay, so i stole the tune(along with half of the words) from one of those "Truth" commercials with the dancing cartoon horses.....anyway, my point is that the Sutent seems to be working. My belly is going down daily and i am NOT going to have to go in to be the human pincushion! w00t! w00t! it feels great to be reclaiming my body damnit! poor thing has been to hell and back and it is finally doing what i want it to do!

so, short post, but full of good news! Sutent still works....dont know how well it works, but it's still doing something amazing in there...and i've only been on it for 6 days. THANK YOU MIRACLE DRUG.

oh, on another front....i went out with a friend last night for the first time in 2.5 months...it felt wonderful....my life is slowly getting back to normal....its about damn time! I even helped bathe a horse yesterday...come on stamina...building...building....building.... :)

Back to the Future....Sutent!

i officially started the 37.5mg dose cycle of sutent on tues. night. i will be done with the steroid taper on the 9th, so hopefully it will not effect the sutent too much and my fluid will go down in my belly without having to be drained again. that is the race against time....sutent working vs. the fluid building up to the point where i have to be drained again.

go sutent...go sutent...go sutent!!!!

will keep you posted on whether i am once again a human pincushion next week or whether sutent is winning.

adios team bean saver!

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

well, i had my "next steps" appointment with dr. doom on thurs. i still have fluid in my belly and the nodules are still weeping....the steroids don't seem to be doing much other than making want to eat everything in sight. he asked if i wanted for him to arrange to have my belly drained again....i said heck no, not yet, its not that bad yet and it hurt so badly for the 24-48 hrs after it was drained before...i am just not ready for it again. he said that assuming i have the same response to the sutent as i have had in the past, it will help the nodules, hopefully stop the weeping completely and then the fluid will be reabsorbed into the body. i am hoping for that. holding out for that actually....but, if the fluid builds up too much, i'll have to go in next week and be "drained" again. yuck. i must say, that the best feeling in the world right now is wanting food. after 2 months of not wanting to even think of food let alone eat it, i now have my cravings back and am eating anything and everything i want. it feels wonderful.

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

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

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

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

after some of you read this, i hope you will be able to understand just a little why i have not been able to write or talk to most of you. i truly have been having the hardest time with this recovery, no bullshit. i will go over what else i have been dealing with since the last posts about my injured piriformis muscle.

also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so, enough about that...i am not going to say any more about it except to state that i hope that the person that left the comment has since removed the link to my blog and does not continue to delude themselves that they are a caring person because they think they feel empathy for my pain.
In case some of you are wondering what comment i am referring to, it is in the comments section (anonymous comment #2) of the April 19th post "speedbump within the speedbump ... :(."

okay, on to other news....

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

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

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

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

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

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

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

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

having a rough time....

sorry i haven't keep this up lately. i've been having a rough recovery. most recently, i had a bunch of fluid build up in my belly and i had to have it drained and was in the hospital for a week. hard to keep the blog up when you are feeling like complete shit, so cut me a little slack please. i promised to post more as soon as i am feeling up to it.

thank you for your interest and support. i truly appreciate it.

speedbump within the speedbump... :(

this post isnt going to be the usual sarcastic kick cancer in the ass tone as i am still trying to recover from the surgery and it sucks. sorry i haven't updated the blog or talked to any of you, but i have been having a really hard time. plus, my meds tend to make me a little loopy, so my train of thought/writing is sometimes hard to follow.

basically, to complicate things, i managed to injure the piriformis muscle in my left butt cheek. yeah, what the hell is that you ask? well, apparently i am unique and talented as well. the prirformis muscle is a little muscle underneath the larger glute-max, kinda smack dab in the middle of the cheek. the symptoms are similar to that of a sciatic nerve injury because the piriformis muscle tenses up causing all the muscles and ligaments that are attached to it to tense up and that puts pressure NEAR the sciatic nerve causing similar pain. my whole left side has been painfully tense and i have pretty much been in traction. the treatment is the same as any soft tissue treatment. heat, stretching, massaging and time....LOTS of time. what's kinda cool is when you find that tense little bugger and rub it, ALL of the other muscles begin to relax....it is amazing how everything is attached in our bodies and one little injury can screw up so many other things. so, on top of the regular pain you have to put up with during open surgery recovery, i have had to deal with this other random problem. it's been a painful and difficult juggling act....up all hours of the night taking baths, getting massages, nauseous from pain meds, etc. etc. extremely frustrating, completely demoralizing and just plain ole depressing.

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

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

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

thanks to all of my wonderful friends and family for all of your well wishes, support, flowers, bears, balloons, plant baskets, etc. i deeply appreciate everything and every member of team bean saver.

well, as many of you know, dr. cold fish wasnt able to get the kidney out. they got the cantaloupe sized ovary out and it did have cancerous cells that were contained within the ovary itself, but they determined that they originated from the kidney and that my uterus and other ovary were fine, so they left them in. the kidney fought back and my surgeon wasn't able to get it out. lefty's last stand ended up NOT his last stand. basically, lefty had latched on to my colon and intestines like velcro which dr. cold fish did not anticipate. also, he would have had to sever my aorta as well as go chopping away at other organs in order to get it out and he didn't want to risk my life when i still have other treatment options with dr. doom. he was on the phone with dr. doom during and after my surgery to discuss what was going on before he gave up.

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

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

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

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

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

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

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

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

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

UPDATE: Gonna be kickin' it oldschool

had my final pre-op appt with the renal onc surgeon today....will be on my way to the generaal pre-op appointment at the hospital shortly.

well, i thought that they were going to be closing me up using the cool plastic zipper thingy made by medizip that i posted a link to on a previous post, but today i learned that they are going to stitch me up the old school way. damn...i was looking forward the the whole "Frankenstein" effect with that thing on me. oh well.

also, dr cold fish gave himself a 50/50 chance of getting the kidney out today. he said he is hoping that the tissue is soft enough that he can peel it back, clamp it and get to the vein he needs to get to. he said that the other vein(or artery) i dont know which one is which still...that he has to get to is no problem...its just one of them that he has concerns about.

i told him that i was going to cross my fingers as they put me under so my fingers were crossed the whole time. he said he would cross his too....somehow i don't think its such a great idea if HE crosses his fingers! ha!

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

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

Nothin' left on the left...

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

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

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

Houston....we are a go.

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

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

Name that Team!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The little engine that could...

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

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

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

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

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

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