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.
Tuesday, August 26, 2008
Saturday, August 16, 2008
Happy Anniversary Lefty!
well, maybe not the happiest of anniversaries, but Aug. 22nd marks the day that i found out about my cancer and the day that my life changed forever. its been a long 12 months and i have many more months of fighting to go, but 12 months is 4x longer than my dr.'s lowest life expectancy estimate. so, eat your heart out dr. doom. CDRCC aint getting rid of me that easily!
Wed. Aug. 20th is my next scan to see what lefty's been up to...sneaky little bastard that he is. the last scan was back in May and it was simply to get a benchmark after surgery. i was not back on any meds at that point. on scan day i will have been on a full cycle of 37.5mg(4wks) and a constant dose of 25mg for 7 weeks. hopefully it is still doing something in there! the side effects are kicking my butt so it better be kicking some cancer butt in addition to mine.
i'll update the blog as soon as i can once i get some news about my scans. one thing i can go ahead and report is that the fluid is not building up nearly as fast. in fact, it is hard to tell if it is building up at all or if some days i just have gas bloating my belly. :)
cross your fingers, toes, legs, arms for scan day team bean saver! thanks!
Wed. Aug. 20th is my next scan to see what lefty's been up to...sneaky little bastard that he is. the last scan was back in May and it was simply to get a benchmark after surgery. i was not back on any meds at that point. on scan day i will have been on a full cycle of 37.5mg(4wks) and a constant dose of 25mg for 7 weeks. hopefully it is still doing something in there! the side effects are kicking my butt so it better be kicking some cancer butt in addition to mine.
i'll update the blog as soon as i can once i get some news about my scans. one thing i can go ahead and report is that the fluid is not building up nearly as fast. in fact, it is hard to tell if it is building up at all or if some days i just have gas bloating my belly. :)
cross your fingers, toes, legs, arms for scan day team bean saver! thanks!
Friday, August 1, 2008
Drink your milk!
quick update. they got my labs back and my thyroid looks good, but i was low in calcium. so, i have to chew 2 tums twice a day for the next 3 weeks until my next check up. i was surprised that calcium was the only thing that was low since i am poopin' everything out so fast...i thought for sure i would be deficient in more minerals than that. usually my potassium and my magnesium are low, thankfully they are fine.
hopefully this will be the last post for a couple weeks...until my next check up. remember, no news is good news right now. holding steady with crappy side effects..that's my story and im stickin' to it! :P
on another note...i got a wii finally!! w00t! challengers...any challengers? who wants to kick the cancer patients' ass in some Kung Fu Panda!?
hopefully this will be the last post for a couple weeks...until my next check up. remember, no news is good news right now. holding steady with crappy side effects..that's my story and im stickin' to it! :P
on another note...i got a wii finally!! w00t! challengers...any challengers? who wants to kick the cancer patients' ass in some Kung Fu Panda!?
Tuesday, July 29, 2008
Steady as she goes...
2wk check went as usual. the plan now is to not rock the boat...if it aint broke, don't fix it...pick your favorite cliché. i am going to stay on the 25mg constant dose of sutent because it seems to be maintaining the amount of fluid in my belly...maybe even reducing it slightly. so, i am going to stay on this treatment for the next 3 weeks until my next set of scans. if the side effects get to me too much, dr. doom said i could take a week off or so and then start back...to just call in and let them know.
so, holding steady i am. side effects are the same. sore mouth, very tired, constantly in the bathroom, hair growing in white and sensitive finger tips. i am going to start taking naps. i just get too cranky because i am so tired so a nap is what i am prescribing myself. they tested my thyroid today to see if they need to adjust the dose of synthroid since this may still be contributing to my fatigue, but i haven't heard the results yet.
anyway, that's about it for now. oh! thanks to everyone for the birthday wishes! lucky 32!
so, holding steady i am. side effects are the same. sore mouth, very tired, constantly in the bathroom, hair growing in white and sensitive finger tips. i am going to start taking naps. i just get too cranky because i am so tired so a nap is what i am prescribing myself. they tested my thyroid today to see if they need to adjust the dose of synthroid since this may still be contributing to my fatigue, but i haven't heard the results yet.
anyway, that's about it for now. oh! thanks to everyone for the birthday wishes! lucky 32!
Monday, July 21, 2008
Best laid plans....
well, the triple threat plan of attack didn't work. i continued to build up fluid in my belly and finally, during my last check up on july 15th, dr. doom and i agreed to schedule a pin cushion appointment while on the 25mg dose to see if once drained the sutent could "maintain" the current rate of fluid buildup. it was unable to reduce the fluid already there AND stop additional fluid production as the 37.5mg dose had been able to do previously.
so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.
5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.
thanks to everyone for their well wishes! rock on wit yo bad selves!
oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!
so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.
5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.
thanks to everyone for their well wishes! rock on wit yo bad selves!
oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!
Wednesday, July 2, 2008
the triple threat...fluid be gone!!
ok...open mouth, insert foot. in my last post i was complaining about the side effects kicking my butt late in the cycle and said "put a fork in me cuz i am done with this cycle". well, that'll teach me....one week into my two week break, my belly was swelling back up to the point where it was really noticeable. damn, i was just starting to be able to taste again!! i went in to see dr. doom and he agreed there was fluid building back up, but didn't want to schedule me to be drained.
attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and he noted that and said they would monitor the toxicity closely.
my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.
diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.
with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!
attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and he noted that and said they would monitor the toxicity closely.
my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.
diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.
with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!
Monday, June 23, 2008
To quote "The Rock" .... i think he said it...
ok, so i was doing great for the first 3 weeks or so, then the side effects LAYITH THE SMACKITH DOWN! i think The Rock said that....i know he said "Know your role....and shut your damn mouth" but that didn't really work (lisa, help me out here). anyway, i have been so tired and my mouth is Uber sensitive during this last week....thank goodness that my last pill is tonight and the side effects can start to subside. ketchup even freaking hurts to eat. :( put a fork in me cuz i am done with this cycle. uggggg.
3 week check....NO FLUID, YIPPIE!!!
so, i had my standard 3 week check last week and everything is fine. i was a little tired at that point and my mouth was starting to get sensitive, but the good news was that the fluid had gone down in my belly. my dr. was excited about that. he said "now, i don't get excited much, but i am excited about this!" haha....if he hadn't said he was excited, you wouldnt have known it. ha!
anyway, just a quick update on the 3 week check and everything is fine....OH, we did decide to do another cycle after this one but to go back up to 50mg....my usual dose. Then at the end of that cycle, we will scan again. fun fun....
anyway, just a quick update on the 3 week check and everything is fine....OH, we did decide to do another cycle after this one but to go back up to 50mg....my usual dose. Then at the end of that cycle, we will scan again. fun fun....
Friday, June 6, 2008
You look Maaaarvvolousss!!!!
shout out to billy crystal!
ok, so i lost a bunch of weight during my recovery....well, about 20lbs, so not a BUNCH. but, my body has changed a lot because i lost both fat and muscle. (and a cantaloupe sized ovary which i never found out how much that sucker weighed). anyway, i look like i've been on a great diet, not like i have been to hell and back. the one bad thing about it is that i have lost all padding....and i mean ALL padding in my ass. not like i had much of an ass to begin with....i had a flat butt, but i at least had some sort of butt. now, i have nothing and it hurts like hell to sit for very long because my tail bone...bottom of my backbone bone... jams into the seat. it feels like i am a freak of nature and have grown a tail. needless to say, my workout plan is focused on building up a butt...simply for comfort! the best way i can describe it is if you were sitting on your elbow...yeah, that about sums it up. try putting the majority of your weight on your elbow and see how long you can stand it.........not too comfy.
the only fun part is that now i need all new clothes. w00t! can we say shopping spree!!! build up my stamina by shopping for cute and fun summer clothes. can't beat that. i went shopping the other day and got 2 pairs of shorts, 2 shirts, 2 skirts, 2 summer dresses and 3 pairs of cute jeans to replace the ones that i already have that i LOVE but are too big now. it was a great start....oh, and a new pair of Coach shoes...cuz...well...just cuz. :-)
all in all i have lost a total of 40lbs since i was diagnosed....due to the sutent side effects and the surgery and recovery. luckily i had some meat on me to lose so i don't look like a skeleton. but, that is why i needed all new summer clothes...because they weren't just a size too big, they were 3 to 4 sizes too big. as far as the winter clothes, they are only 1 or 2 sizes off.
i am still eating like a pig....the steroids really make me hungry. as i have mentioned, it feels wonderful to be able to eat...and eat a LOT. i am not gaining anything back tho....im sure that will change, but right now im fine with it....i havent been this size since high school!
ok, so i lost a bunch of weight during my recovery....well, about 20lbs, so not a BUNCH. but, my body has changed a lot because i lost both fat and muscle. (and a cantaloupe sized ovary which i never found out how much that sucker weighed). anyway, i look like i've been on a great diet, not like i have been to hell and back. the one bad thing about it is that i have lost all padding....and i mean ALL padding in my ass. not like i had much of an ass to begin with....i had a flat butt, but i at least had some sort of butt. now, i have nothing and it hurts like hell to sit for very long because my tail bone...bottom of my backbone bone... jams into the seat. it feels like i am a freak of nature and have grown a tail. needless to say, my workout plan is focused on building up a butt...simply for comfort! the best way i can describe it is if you were sitting on your elbow...yeah, that about sums it up. try putting the majority of your weight on your elbow and see how long you can stand it.........not too comfy.
the only fun part is that now i need all new clothes. w00t! can we say shopping spree!!! build up my stamina by shopping for cute and fun summer clothes. can't beat that. i went shopping the other day and got 2 pairs of shorts, 2 shirts, 2 skirts, 2 summer dresses and 3 pairs of cute jeans to replace the ones that i already have that i LOVE but are too big now. it was a great start....oh, and a new pair of Coach shoes...cuz...well...just cuz. :-)
all in all i have lost a total of 40lbs since i was diagnosed....due to the sutent side effects and the surgery and recovery. luckily i had some meat on me to lose so i don't look like a skeleton. but, that is why i needed all new summer clothes...because they weren't just a size too big, they were 3 to 4 sizes too big. as far as the winter clothes, they are only 1 or 2 sizes off.
i am still eating like a pig....the steroids really make me hungry. as i have mentioned, it feels wonderful to be able to eat...and eat a LOT. i am not gaining anything back tho....im sure that will change, but right now im fine with it....i havent been this size since high school!
Monday, June 2, 2008
The Magical Amount....
The magical amount.....but not enough to hurt you.....the magical amount....its just enough to work!!!
okay, so i stole the tune(along with half of the words) from one of those "Truth" commercials with the dancing cartoon horses.....anyway, my point is that the Sutent seems to be working. My belly is going down daily and i am NOT going to have to go in to be the human pincushion! w00t! w00t! it feels great to be reclaiming my body damnit! poor thing has been to hell and back and it is finally doing what i want it to do!
so, short post, but full of good news! Sutent still works....dont know how well it works, but it's still doing something amazing in there...and i've only been on it for 6 days. THANK YOU MIRACLE DRUG.
oh, on another front....i went out with a friend last night for the first time in 2.5 months...it felt wonderful....my life is slowly getting back to normal....its about damn time! I even helped bathe a horse yesterday...come on stamina...building...building....building.... :)
okay, so i stole the tune(along with half of the words) from one of those "Truth" commercials with the dancing cartoon horses.....anyway, my point is that the Sutent seems to be working. My belly is going down daily and i am NOT going to have to go in to be the human pincushion! w00t! w00t! it feels great to be reclaiming my body damnit! poor thing has been to hell and back and it is finally doing what i want it to do!
so, short post, but full of good news! Sutent still works....dont know how well it works, but it's still doing something amazing in there...and i've only been on it for 6 days. THANK YOU MIRACLE DRUG.
oh, on another front....i went out with a friend last night for the first time in 2.5 months...it felt wonderful....my life is slowly getting back to normal....its about damn time! I even helped bathe a horse yesterday...come on stamina...building...building....building.... :)
Friday, May 30, 2008
Back to the Future....Sutent!
i officially started the 37.5mg dose cycle of sutent on tues. night. i will be done with the steroid taper on the 9th, so hopefully it will not effect the sutent too much and my fluid will go down in my belly without having to be drained again. that is the race against time....sutent working vs. the fluid building up to the point where i have to be drained again.
go sutent...go sutent...go sutent!!!!
will keep you posted on whether i am once again a human pincushion next week or whether sutent is winning.
adios team bean saver!
go sutent...go sutent...go sutent!!!!
will keep you posted on whether i am once again a human pincushion next week or whether sutent is winning.
adios team bean saver!
Saturday, May 24, 2008
MmmmMMmm Sutent.....again....
well, i had my "next steps" appointment with dr. doom on thurs. i still have fluid in my belly and the nodules are still weeping....the steroids don't seem to be doing much other than making want to eat everything in sight. he asked if i wanted for him to arrange to have my belly drained again....i said heck no, not yet, its not that bad yet and it hurt so badly for the 24-48 hrs after it was drained before...i am just not ready for it again. he said that assuming i have the same response to the sutent as i have had in the past, it will help the nodules, hopefully stop the weeping completely and then the fluid will be reabsorbed into the body. i am hoping for that. holding out for that actually....but, if the fluid builds up too much, i'll have to go in next week and be "drained" again. yuck. i must say, that the best feeling in the world right now is wanting food. after 2 months of not wanting to even think of food let alone eat it, i now have my cravings back and am eating anything and everything i want. it feels wonderful.
anyway, my dr. decided to start me back on the 37.5mg (4weeks on, 2 weeks off) dose of sutent while i am still rebuilding my stamina. since i tolerated the 50mg dose so well before, he thought that i would be fine in my weakened condition on the 37.5mg dose while i continued to get stronger for my next battle in the war on CDRCC. so, i will start on the new dose cycle middle of next week.....insurance is slow with the approval of the Rx cuz of the holiday weekend...uggg. the drug store has pre-approval, but can't hook me up until the final paperwork is in. so annoying. i've been approved so many times for so many drugs, it's hard to believe that it is taking this much time at this point.
anyway, that's the only news i have....starting back on a lower dose of sutent while i rebuild my strength, re-evaluate after this first cycle back to see if he wants to put me on another round of the 50mg or whether i can get strong enough fast enough to try the chemo cocktail in 6 weeks or so. i will keep everyone posted on that. losing my hair...that will really suck...yes, i am vain about my hair. i am a leo and have always had a "mane". that will be hard to get over when the side effect kicks in. forget the white hair that sutent gives me. hopefully we won't be attempting that treatment until after summer.
thanks as always for all the support. hope to see many of you soon and talk to those that i can't see soon as well.
anyway, my dr. decided to start me back on the 37.5mg (4weeks on, 2 weeks off) dose of sutent while i am still rebuilding my stamina. since i tolerated the 50mg dose so well before, he thought that i would be fine in my weakened condition on the 37.5mg dose while i continued to get stronger for my next battle in the war on CDRCC. so, i will start on the new dose cycle middle of next week.....insurance is slow with the approval of the Rx cuz of the holiday weekend...uggg. the drug store has pre-approval, but can't hook me up until the final paperwork is in. so annoying. i've been approved so many times for so many drugs, it's hard to believe that it is taking this much time at this point.
anyway, that's the only news i have....starting back on a lower dose of sutent while i rebuild my strength, re-evaluate after this first cycle back to see if he wants to put me on another round of the 50mg or whether i can get strong enough fast enough to try the chemo cocktail in 6 weeks or so. i will keep everyone posted on that. losing my hair...that will really suck...yes, i am vain about my hair. i am a leo and have always had a "mane". that will be hard to get over when the side effect kicks in. forget the white hair that sutent gives me. hopefully we won't be attempting that treatment until after summer.
thanks as always for all the support. hope to see many of you soon and talk to those that i can't see soon as well.
Wednesday, May 21, 2008
okay....here's the scoop....finally.
after some of you read this, i hope you will be able to understand just a little why i have not been able to write or talk to most of you. i truly have been having the hardest time with this recovery, no bullshit. i will go over what else i have been dealing with since the last posts about my injured piriformis muscle.
also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so, enough about that...i am not going to say any more about it except to state that i hope that the person that left the comment has since removed the link to my blog and does not continue to delude themselves that they are a caring person because they think they feel empathy for my pain.
In case some of you are wondering what comment i am referring to, it is in the comments section (anonymous comment #2) of the April 19th post "speedbump within the speedbump ... :(."
okay, on to other news....
percocet used to be my friend...then it started to make me sick. i could barely eat, it made me nauseous just to think of food...i was dehydrated cuz i could barely keep anything down. over a weeks time, i got my percocet dose down to 2.5 pills a day, then i went off it completely. i felt like i was detoxing off of meth or something. it was horrible. i was sick as a dog for 4 days....felt like johnny cash in "walk the line". couldn't move from one room to the next without running for the bathroom to dry heave.
after i made it through those 2 weeks of hell and was completely off of the percocet, i was finally able to start trying to eat normal food again...it was very hard and i had to force it down. one night my stomach ballooned up and we called the dr. the next day. Because of the timing, the nurse thought it was gas issues because the percocet had messed up my system. so, they told me what to eat and what not to eat...also to try to add probiotics back into my system to help my stomach learn to digest again....this went on for another week. my belly looked like i was 4 or 5 months pregnant and it was extremely painful. i was scheduled for a ct scan on May 12th and a follow up appointment on May 13th with dr doom to discuss next steps. well, when they scanned me, they told me that i had a bunch of fluid in my belly and it wasn't gastrointestinal problems at all. they called dr. doom and wanted to do a paracentesis right away to get the fluid down. i was not at my usual ct scan place cuz they were all booked, so i was at mercy instead of main or the other option i use sometimes. the dr at mercy started to drain the fluid and there was blood in it so he stopped and called my dr. again. dr. doom said to stop and have me come over to his offices right away. at this point, i knew he was going to admit me to the hospital. we left and went to dr dooms and after a short wait in the infusion center, i was admitted to the hospital.
so....i was in the hospital again....for 5 days.
the fluid build up was due to a couple cancer nodules that have attached themselves to the outer lining of my stomach....in the cavity of your torso where there is a lot of room for fluid to build up. i really looked like i was 4 or 5 months pregnant. it was extremely painful....
they drained 8 liters of fluid off of me....2 gallons...16lbs! 4 during each session over 2 days. since i have never been drained before, they only do 4 liters at a time so your body doesn't go into shock and you end up in ICU. it felt so much better after they drained it. then i was in extreme pain a few hours after they drained it cuz my body didn't know what to do with the extra room and it was killing me. a couple nights in the hospital like that and i was about to lose it. one funny story the tech told me was that he had a little old lady in there one night and they were draining her belly...he said they were on their 10th liter....that's over 20lbs of liquid! anyway, he said she had been really quiet and finally said "wow, now i know who's causing the drought around here!" hahaha...i was cracking up.
the whole time in the hospital i was still battling nausea and pain and not being able to sleep, then ONLY being able to sleep. i was released on Friday may 16th and have been getting better every day now that i am home again. my belly is still sore from the surgery and the fluid drain, but i am finally on the mend...i can finally see the light at the end of the tunnel. it has been a long and bumpy road.
i have an appointment tomorrow to talk next steps in treatment finally. they are going to start me back on the sutent as soon as possible to take care of the weeping cancer nodules in my belly. right now i am on steroids to try to help control the inflammation and weeping of fluid.
that is the only progression of the cancer during this whole recovery....the rest of the area that had been reduced already showed little change, so that is really good that it didn't come back like gangbusters while i was down and out.
luckily, CDRCC (what they finally determined i had) responds to sutent the same as the most common type, clear cell. BUT, it also has shown some response to a nexavar and chemo cocktail combo that other RCC types do not respond to....so, i actually am rare as shit, but have a couple more options now for treatment that i didn't have before.
also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so, enough about that...i am not going to say any more about it except to state that i hope that the person that left the comment has since removed the link to my blog and does not continue to delude themselves that they are a caring person because they think they feel empathy for my pain.
In case some of you are wondering what comment i am referring to, it is in the comments section (anonymous comment #2) of the April 19th post "speedbump within the speedbump ... :(."
okay, on to other news....
percocet used to be my friend...then it started to make me sick. i could barely eat, it made me nauseous just to think of food...i was dehydrated cuz i could barely keep anything down. over a weeks time, i got my percocet dose down to 2.5 pills a day, then i went off it completely. i felt like i was detoxing off of meth or something. it was horrible. i was sick as a dog for 4 days....felt like johnny cash in "walk the line". couldn't move from one room to the next without running for the bathroom to dry heave.
after i made it through those 2 weeks of hell and was completely off of the percocet, i was finally able to start trying to eat normal food again...it was very hard and i had to force it down. one night my stomach ballooned up and we called the dr. the next day. Because of the timing, the nurse thought it was gas issues because the percocet had messed up my system. so, they told me what to eat and what not to eat...also to try to add probiotics back into my system to help my stomach learn to digest again....this went on for another week. my belly looked like i was 4 or 5 months pregnant and it was extremely painful. i was scheduled for a ct scan on May 12th and a follow up appointment on May 13th with dr doom to discuss next steps. well, when they scanned me, they told me that i had a bunch of fluid in my belly and it wasn't gastrointestinal problems at all. they called dr. doom and wanted to do a paracentesis right away to get the fluid down. i was not at my usual ct scan place cuz they were all booked, so i was at mercy instead of main or the other option i use sometimes. the dr at mercy started to drain the fluid and there was blood in it so he stopped and called my dr. again. dr. doom said to stop and have me come over to his offices right away. at this point, i knew he was going to admit me to the hospital. we left and went to dr dooms and after a short wait in the infusion center, i was admitted to the hospital.
so....i was in the hospital again....for 5 days.
the fluid build up was due to a couple cancer nodules that have attached themselves to the outer lining of my stomach....in the cavity of your torso where there is a lot of room for fluid to build up. i really looked like i was 4 or 5 months pregnant. it was extremely painful....
they drained 8 liters of fluid off of me....2 gallons...16lbs! 4 during each session over 2 days. since i have never been drained before, they only do 4 liters at a time so your body doesn't go into shock and you end up in ICU. it felt so much better after they drained it. then i was in extreme pain a few hours after they drained it cuz my body didn't know what to do with the extra room and it was killing me. a couple nights in the hospital like that and i was about to lose it. one funny story the tech told me was that he had a little old lady in there one night and they were draining her belly...he said they were on their 10th liter....that's over 20lbs of liquid! anyway, he said she had been really quiet and finally said "wow, now i know who's causing the drought around here!" hahaha...i was cracking up.
the whole time in the hospital i was still battling nausea and pain and not being able to sleep, then ONLY being able to sleep. i was released on Friday may 16th and have been getting better every day now that i am home again. my belly is still sore from the surgery and the fluid drain, but i am finally on the mend...i can finally see the light at the end of the tunnel. it has been a long and bumpy road.
i have an appointment tomorrow to talk next steps in treatment finally. they are going to start me back on the sutent as soon as possible to take care of the weeping cancer nodules in my belly. right now i am on steroids to try to help control the inflammation and weeping of fluid.
that is the only progression of the cancer during this whole recovery....the rest of the area that had been reduced already showed little change, so that is really good that it didn't come back like gangbusters while i was down and out.
luckily, CDRCC (what they finally determined i had) responds to sutent the same as the most common type, clear cell. BUT, it also has shown some response to a nexavar and chemo cocktail combo that other RCC types do not respond to....so, i actually am rare as shit, but have a couple more options now for treatment that i didn't have before.
Saturday, May 17, 2008
having a rough time....
sorry i haven't keep this up lately. i've been having a rough recovery. most recently, i had a bunch of fluid build up in my belly and i had to have it drained and was in the hospital for a week. hard to keep the blog up when you are feeling like complete shit, so cut me a little slack please. i promised to post more as soon as i am feeling up to it.
thank you for your interest and support. i truly appreciate it.
thank you for your interest and support. i truly appreciate it.
Saturday, April 19, 2008
speedbump within the speedbump... :(
this post isnt going to be the usual sarcastic kick cancer in the ass tone as i am still trying to recover from the surgery and it sucks. sorry i haven't updated the blog or talked to any of you, but i have been having a really hard time. plus, my meds tend to make me a little loopy, so my train of thought/writing is sometimes hard to follow.
basically, to complicate things, i managed to injure the piriformis muscle in my left butt cheek. yeah, what the hell is that you ask? well, apparently i am unique and talented as well. the prirformis muscle is a little muscle underneath the larger glute-max, kinda smack dab in the middle of the cheek. the symptoms are similar to that of a sciatic nerve injury because the piriformis muscle tenses up causing all the muscles and ligaments that are attached to it to tense up and that puts pressure NEAR the sciatic nerve causing similar pain. my whole left side has been painfully tense and i have pretty much been in traction. the treatment is the same as any soft tissue treatment. heat, stretching, massaging and time....LOTS of time. what's kinda cool is when you find that tense little bugger and rub it, ALL of the other muscles begin to relax....it is amazing how everything is attached in our bodies and one little injury can screw up so many other things. so, on top of the regular pain you have to put up with during open surgery recovery, i have had to deal with this other random problem. it's been a painful and difficult juggling act....up all hours of the night taking baths, getting massages, nauseous from pain meds, etc. etc. extremely frustrating, completely demoralizing and just plain ole depressing.
i also had another MRI because dr. doom wanted to make sure that the pain wasnt being caused by something else. a pinched nerve that could be treated with steroid injections or the original back pain coming back. both of those were pretty much ruled out when nothing new showed up on the MRI.
so, sorry team bean saver. i don't have any other good news except for the MRI at this point. i can say that i am finally starting to feel better, but it is slow going and frustrating....especially since i was making such great progress my first week home. anyhoo, hopefully the next time i update this blog it will be with better news and details of "plan B" since i have an appointment with dr doom regarding next steps in my treatment on May 8th.
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.
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