Save the Beans!Save the Beans!Save the Beans is a blog about a 30-something that has been diagnosed with stage IV kidney cancer. The play by play of emotions, physical challenges, dr. visits, medical details and life lessons learned during the struggle. Articles
A Star for Sarah
2010-02-27 19:44:00 Click on the "A Star for Sarah " to visit her at the SU2C constellation.
Sad, sad news...
2009-09-08 00:12:00 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 More About: News
fear = weakness or weakness = fear????
2009-07-18 13:44:00 been a lot going on team bean saver(none good).....promise to update this week. More About: Fear
Resistance is futile
2009-06-29 20:05:00 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... More About: Resistance
on the same page (Hospital stay part 2)
2009-05-11 23:04:00 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 te... More About: Hospital , Page , Part
the ER brings out daddy's fangs. (Hospital stay part 1)
2009-05-11 17:01:00 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 indi... More About: Hospital , Part
slight improvement...better than nothin'
2009-05-04 17:02:00 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 3.82thur. creatinine was 3.36fri. creatinine was 2.7i 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 ... More About: Improvement
the raw deal....and i wish i were talking about veggies.
2009-04-30 22:37:00 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 i... More About: Deal , Talking
4get the pig flu...i've got my own drama
2009-04-30 17:09:00 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. More About: Drama
Some normal life stuff for a change....
2009-04-27 18:55:00 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 ... More About: Life , Change , Stuff
It's always somethin'!
2009-04-20 19:25:00 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 pressu...
Ahh Haa! THAT's why...
2009-03-31 20:31:00 http://www.fda.gov/bbs/topics/NEWS/2009/N EW01980.htmlthis 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 s...
is no news good news???
2009-03-30 16:30:00 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'... More About: News , Good News , Good
The Tortoise and the Hare
2009-03-04 18:25:00 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 ... More About: Tortoise
False start
2009-02-20 03:06:00 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 ... More About: Start
Steady as i go....again.
2009-02-09 01:35:00 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 w...
A week in medical hell
2009-01-29 16:54:00 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 hav... More About: Medical , Week , Hell
transfusion schmanfusion!
2009-01-19 21:09:00 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 lo...
Vampire Revenge!
2009-01-15 03:43:00 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 s... More About: Vampire
Tumor Fever Tidbit
2009-01-12 17:32:00 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...
Hospital Stay #3 - vampire misfire(s)
2009-01-10 00:54:00 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... More About: Hospital , Vampire
Happy New Year!
2009-01-02 19:31:00 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! ... More About: New Year , Happy , Happy New Year
Christmas here i come!
2008-12-22 03:40:00 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 ... More About: Christmas
Christmas Overkill??
2008-12-18 16:13:00 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 SnowmanSanta and Rudolph go round and roundDeer 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 ho... More About: Christmas
caught up in christmas cheer....sort of.
2008-12-12 23:48:00 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 ... More About: Christmas , Cheer , Caught , Sort
Happy Freaking Thanksgiving...
2008-11-26 00:08:00 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 tim... More About: Happy
Break time!!!!
2008-10-28 22:13:00 w00t! w00t! i had my usual 3 week check up today and dr. doom said he wanted to try a new sutent schedule on for size. i am to go 2 weeks on 1 week off and see how that works for me. he said that there is some data that suggests that with clear cell RCC at least, frequent breaks has increased the amount of shrinkage. since my type of RCC is responding to sutent the same as clear cell, he wants to see if it will also respond to this type of schedule. i don't care what his reasons are, all i know is that i get more breaks which means less side effects which means a happier me! yippie!my next appt. isn't until thanksgiving week...i will have my 3 month scan that week as well. this is one time when shrinkage is a good thing. hehe. :)anyway, that's all that i have to report today. happy halloween team beansaver! More About: Time , Break
plop plop fizz fizz oh what a relief it is...
2008-10-17 16:08:00 well, i was off of the sutent for 3-4 days, ok, technically 5 days. i started back on monday the 13th. just having a few days off made a big difference in the % of my day spent on the pot. i actually was able to go 2 days with only going poo 1 time! woohoo!!!! and it went "plop plop" rather than sounding like a chunky liquid explosion.SOLID...solid as a rock!!! my poo was solid...and now im feeling so hot hot hot hot hot hot hot hot....hopefully you guys remember that song, otherwise it just looks like im losin it. :) well, it prob looks like i lost it a while ago. ha!at any rate, the solid poo celebration was short lived because within 3 days of going back on the sutent, solid was once again not a member of my bathroom vocabulary list. have you ever noticed that your vocabulary list changes based on what is important in your life at the time? like when someone is dating or interested in "hooking up" with a bunch of people, they have a million words in the front of their mind which ... More About: Relief
Are we there yet?!
2008-10-11 19:23:00 so, i had my usual 3 week check up appt and it went as usual. dr. doom wanted me to take a 3 or 4 day break to see if i could get some relief from the mouth sensitivity and then start back on the sutent before the fluid had a chance to build up. today is day 3 and i have no sign of relief yet...these meds really build up and start to take their tole. i've also not been feeling well for the past few days...not exactly "sick" but like i'm suffering from really bad allergies or something. at any rate, i finally felt a little relief last night, but i'm still not feeling so hot. constantly battling an "off" feeling and a lot of nausea. :(anyway, just wanted to give a quick update since i had an appt. there really isn't much to report.
Nor'Easter.....Snor'Easter
More articles from this author:2008-09-24 16:16:00 The beach is beautiful despite the brewing Low offshore that could become the first nor'easter of the year. just look for yourself. bring it on mother nature, just give me some sun and sand and i'll brave the 30mph winds with 45mph gusts! :) enjoy the pics! 1, 2, 3 |
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