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.
Thursday, February 28, 2008
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!)
once i got in to see dr. cold fish, he began by going over my scan and saying that the kidney was still not "ideally" operable. he said that the mass surrounding the vein and artery that connect the kidney to the aorta had significantly been reduced, but there was still approx. 2cm of cancerous "stuff" surrounding it and he would not know if it was possible to get the kidney out until he was in. he was reluctant to consider surgery at that point and we all kind of looked around at each other like "wtf". then he called dr doom and after 10 minutes of very big dr. words and debate of a couple options, he decided to move forward. basically, dr doom is concerned that the effectiveness of the sutent has almost run its course and that if we are going to attempt to get the kidney out, now is the time...before my progress begins to reverse. he also said that my obgyn onc surgeon (dr. T) is fairly certain that the ovary is cystic in nature and just needs to come on out. dr. cold fish said "that thing is huge...it's like you're pregnant." i said: "yeah, pregnant with a period." he's right, that thing sticks out like a big ole grapefruit..i will be happy to get that out.
so, since they want to get the enlarged ovary out of me anyway and there is only a small window to do surgery now since theoretically i am near the end of the effectiveness of the sutent, he is considering me an emergency case, adding a day of surgery to his already booked month of march and working on getting me scheduled for emergency open surgery on march 17th. (maybe if i tell everyone i am irish i'll get lots of extra stuff for st. patty's day.) he is going to reschedule all of his appointments and said, with authority: "I will get OR time." as of today, this date is still tentative because they don't have dr. T on board yet, but they wanted to let me know what day they are shooting for. that said, there will be an update to confirm all of the details once i have them...date, time, location, etc.
surgery details: (turn away if you are sensitive to gore...parental guidance is advised)
they will have to cut me from sternum to pelvis, wide the hell open. dr. T will remove the ovary and then he will remain to assist dr. cold fish while he attempts to do his thang. together they are Team T. (nothing very original there...both of their names start with T)
A side note: originally, dr doom said dr cold fish would only be removing the kidney, that he would leave the surrounding lymph nodes, but as dr. cold fish was dictating in his little recorder thingy, he said "Radical Nephrectomy".....definition: Surgery to remove an entire kidney, nearby adrenal gland and lymph nodes, and other surrounding tissue.
surgery could be anywhere from 6 to 8+ hours from what i have read, but who knows. when they close me up, they will be using a "zipper" method...thats what dr. cold fish said into his little dictation recorder anyway. i looked this up and it is pretty cool. the link is below if you want to see....its not gross...its an illustration. sorry about the asian characters, some of the paragraphs are in english, so you can get the gist of it. i will be in the hospital for 4-6(?) days if there are no complications. the recovery period is approx. 6 weeks.
http://www.medizip.com.cn/prodprofile_fr.html
so, needless to say, i am going to be partying my ass of for the next two weeks....well, as much as i can without overdoing it. then, bring on the drugs...and dont hold back, bring on the GOOD ones...i dont want to feel a damn thing!
well team bean saver, that's about it for now. the next cancer chapter of my life is about to begin. live long and prosper! (that's a shout out to all my geek buds!)
Monday, February 25, 2008
Have your people call my people and we'll work something out.
for those of you that have been checking my blog to see how the pre-op appointment went...i apologize for not updating sooner!!! Dr. T, my surgeon, was called into emergency surgery last week and they had to reschedule my pre-op appointment for this tues, feb 26th at 4:30. the good thing is that morning, he is meeting with several other doctors during a "small tumor and kidney conference" and they will be going over my scans, laying out/finalizing my surgery plan, etc.
so, i will try to update the blog in a more timely manner this time. sorry team bean saver!
so, i will try to update the blog in a more timely manner this time. sorry team bean saver!
Monday, February 18, 2008
The little engine that could...
i think i can, i think i can....i KNOW i can, I KNOW I CAN!!!!! The 3rd and final round of sutent worked...you can see the veins that connect the kidney to the aorta now. the cancer surrounding them has been reduced so much that you can see them! the surgeon can see them which means he can get the kidney out! i am no longer in the "inoperable" category. what seemed like an unachievable goal 5 months ago has been achieved...phase 1 accomplished. dr. doom is so pleased with my response to the sutent, he is all smiles each time i see him now. that just feels wonderful.
the pre-op appointment with my surgeon is this thurs., feb 21st. i am excited and scared at the same time. the earliest that surgery could be scheduled is the first week in march. they cannot operate until i have been off of the sutent for at least 1 month. my last pill was jan 30. i have no idea when they will actually schedule the surgery however, i only know the earliest possible date. i expect to find out when they want to schedule it at the thurs appointment. i'm also hoping to find out whether they can do laparoscopic or open surgery, now long i will be in surgery, the risks involved, length of hospital stay, recovery time, etc.
i'll update when i find out more...
surgery is phase 2 of my fight against cancer. dr. doom has more plans for me. after successful surgery and recovery, the plan is to start me on Interleukin-2. this will not be fun....not like any of the challenges i have had to face have been easy in this battle, but i think that the IL-2 will be the worst. IL-2 is another immunotherapy treatment that is administered intravenously over a 5 to 7 day period in ICU. it is the only treatment that has had any success as far as complete remission in RCC patients. it is a highly toxic treatment which is why i must be in ICU for the duration of the treatment. it is also the most aggressive approach, but my dr. has confidence in how my body will handle it since i was so tolerant of the sutent. the IL-2 treatment is so toxic, that they will only administer it a maximum of 3 times...and only if you show progress between each of the treatments. if you show no progress during the first treatment, your doctor may or may not choose to put you through a 2nd round. if you show no progress during the second, they will stop. also, it is so tough on your body, on your heart and lungs, that there is a 6 to 12 week "recover" period between each treatment. the immediate side effects should subside in just a week or so, but they will not put you through the next treatment until your body has had a chance to rest.
once again, the odds are stacked against me. the success rate percentages are low...15-20% partial or complete responses to the treatment with a 10 year survival rate of 12-15%. i LOVE proving the "odds" wrong. i've already proven the odds wrong once and damnit, i am going to do it again. i HAVE to...i have no other choice. i WILL prove them wrong. this is one time in my life when it has paid to be stubborn. ha!
here's a link to info on IL-2 if anyone is interested in more details.
http://cancerguide.org/rcc_il2hd.html
one good thing about the surgery date....the 15th is a saturday and last i checked, they don't schedule surgery on saturdays. so, it will not be during the ides of march. no need to fear the "impending doom" as poor Julius Caesar should have. Ha!
the pre-op appointment with my surgeon is this thurs., feb 21st. i am excited and scared at the same time. the earliest that surgery could be scheduled is the first week in march. they cannot operate until i have been off of the sutent for at least 1 month. my last pill was jan 30. i have no idea when they will actually schedule the surgery however, i only know the earliest possible date. i expect to find out when they want to schedule it at the thurs appointment. i'm also hoping to find out whether they can do laparoscopic or open surgery, now long i will be in surgery, the risks involved, length of hospital stay, recovery time, etc.
i'll update when i find out more...
surgery is phase 2 of my fight against cancer. dr. doom has more plans for me. after successful surgery and recovery, the plan is to start me on Interleukin-2. this will not be fun....not like any of the challenges i have had to face have been easy in this battle, but i think that the IL-2 will be the worst. IL-2 is another immunotherapy treatment that is administered intravenously over a 5 to 7 day period in ICU. it is the only treatment that has had any success as far as complete remission in RCC patients. it is a highly toxic treatment which is why i must be in ICU for the duration of the treatment. it is also the most aggressive approach, but my dr. has confidence in how my body will handle it since i was so tolerant of the sutent. the IL-2 treatment is so toxic, that they will only administer it a maximum of 3 times...and only if you show progress between each of the treatments. if you show no progress during the first treatment, your doctor may or may not choose to put you through a 2nd round. if you show no progress during the second, they will stop. also, it is so tough on your body, on your heart and lungs, that there is a 6 to 12 week "recover" period between each treatment. the immediate side effects should subside in just a week or so, but they will not put you through the next treatment until your body has had a chance to rest.
once again, the odds are stacked against me. the success rate percentages are low...15-20% partial or complete responses to the treatment with a 10 year survival rate of 12-15%. i LOVE proving the "odds" wrong. i've already proven the odds wrong once and damnit, i am going to do it again. i HAVE to...i have no other choice. i WILL prove them wrong. this is one time in my life when it has paid to be stubborn. ha!
here's a link to info on IL-2 if anyone is interested in more details.
http://cancerguide.org/rcc_il2hd.html
one good thing about the surgery date....the 15th is a saturday and last i checked, they don't schedule surgery on saturdays. so, it will not be during the ides of march. no need to fear the "impending doom" as poor Julius Caesar should have. Ha!
Thursday, January 31, 2008
Worse than the dentist
last night was my last sutent pill for this round. the side effects hit me hard at the end of this cycle. they tend to build up, but this time it was like a smack in the face one morning....BAM!! we're here! tongue peeling, sensitive mouth, lack of taste, painfully dry skin around my nose and in other random places on my body, nose bleeds, fatigue and the never ending bathroom visits. oh joy! although i have mentioned that the side effects are a small price to pay if the "miracle drug" is working, it is definitely worse than the dentist.
right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.
once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!
right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.
once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!
Sunday, January 27, 2008
Dates, Dates and More Dates...
this is just a quick update on all of my appointments coming up. the Jan 23rd appointment went as usual, the only thing that came out of it was that they reduced my thyroid meds from 75mcg to 25mcg. other than that, same ole same ole. i was fighting a head cold last week which is not a good thing to have to do when your white cells are down because of the sutent, but i managed to kick it to the curb. :)
okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.
tootles.
okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.
tootles.
Friday, January 11, 2008
One small step for WOman...
one week into the sutent cycle. side effects are minimal still so i try to take this opportunity to visit with friends...before i get too tired and before my white cells are down too much. this time, i am still basking in the glow of good news of how great the drug is working...so much so that i am starting to take my life back. starting to see more and more of my friends and meet new ones. wanting to celebrate this first step in a long line of steps to beating this. i want to scream from the rafters...i want to brag to anyone who will listen....I AM WINNING!!!!
one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thyroid issue which, as i mentioned, is being affected by the sutent. dr. doom says that the thyroid should return to normal when i am taken off the sutent, but until then, they will monitor it with the other blood tests and adjust the dosage accordingly. i HATE how thin my hair is now. i know it seems extremely vain in the grand scheme of things, but i have always had thick hair...a lions mane my family called it. now that it is so thin AND the fact that it grows in white while im on the sutent makes it look even thinner. my hair part looks like i have a skunk stripe on my head. i have been getting my roots done every 4 wks, but i am not due until the 20th and i already need it now....BAD. uggg.
ok...enough whining about trivial bullshit...on to the important stuff.
follow up appointment for the usual blood check and physical is Jan 23rd. last day of sutent in round 3 is Jan 30th. my next scan to determine whether i am heading to surgery or not is Feb. 11th(happy Val-dog Day). appointment with surgeon is currently set for March 11th (assuming the scan looks good). maybe the Easter Bunny will take my kidney and ovary for me this Easter! ha!
anyhoo, i probably won't write much, if at all until i get more news or something else happens. i try to stay busy visiting "Team Bean Saver" members as i already mentioned. tootles!
one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thyroid issue which, as i mentioned, is being affected by the sutent. dr. doom says that the thyroid should return to normal when i am taken off the sutent, but until then, they will monitor it with the other blood tests and adjust the dosage accordingly. i HATE how thin my hair is now. i know it seems extremely vain in the grand scheme of things, but i have always had thick hair...a lions mane my family called it. now that it is so thin AND the fact that it grows in white while im on the sutent makes it look even thinner. my hair part looks like i have a skunk stripe on my head. i have been getting my roots done every 4 wks, but i am not due until the 20th and i already need it now....BAD. uggg.
ok...enough whining about trivial bullshit...on to the important stuff.
follow up appointment for the usual blood check and physical is Jan 23rd. last day of sutent in round 3 is Jan 30th. my next scan to determine whether i am heading to surgery or not is Feb. 11th(happy Val-dog Day). appointment with surgeon is currently set for March 11th (assuming the scan looks good). maybe the Easter Bunny will take my kidney and ovary for me this Easter! ha!
anyhoo, i probably won't write much, if at all until i get more news or something else happens. i try to stay busy visiting "Team Bean Saver" members as i already mentioned. tootles!
Saturday, January 5, 2008
Mmmm....Mmmmmm...Sutent.
can you hear the Mmmm...Mmmmm....Campbell's tune playing in your head as you read my title?
HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!
HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!
Thursday, January 3, 2008
I AM A CANCER KILLING MACHINE
Jan 2nd. follow up appointment. dr. dooms assistant, the immunotherapy coordinator comes into the room and has a big ole smile on her face. she says that dr. doom has plans for me and that i should be so excited. we chat for a bit and then she leaves as we wait for dr. doom.
dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!
we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also been reduced by about half. so much so, that the surgeon is fairly confident that after just one more round of sutent, he will be able to operate and get the kidney and at least some of the surrounding cancer out. he is so confident that he has already scheduled an appointment for me with him March 11th.
also, i had two spots on my liver previously...the scan now showed that one was completely gone and the other had significantly reduced in size as well.
w00t! w00t! w00t! i can't believe it. it is too good to be true, yet it is true. the 30% of patients that responded to the sutent the way that i have had already had the "mothership" aka the cancerous kidney removed. the best chance of reduction in amount of cancer was when the source had already been removed. that is why my case was so grim originally. why my original diagnosis was 3 to 20 months. but, as i have mentioned several times now, i am a cancer killing machine and have beat the odds so far. i am going to continue to beat the odds i know it! i can do this. i can beat this.
50% reduction is almost unheard of with just 2 rounds of sutent. my dr. was very pleased. dr. doom blushes!
so, the plan is one more round of sutent. i start tonight, yuck. in 3 weeks i go back for my usual mid-cycle check up and blood tests. then get another scan in 7 weeks to see if i am still a cancer killing machine. my surgeon will look at that scan as well and then i have the appointment with him march 11th. im hoping this appointment will be a pre-op consultation. i never thought i would be hoping for surgery, but i never thought i would be diagnosed with stage IV inoperable kidney cancer either.
thanks to everyone for your well wishes and support. i greatly appreciate everything. i never knew i had so many great friends and people who love me.
dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!
we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also been reduced by about half. so much so, that the surgeon is fairly confident that after just one more round of sutent, he will be able to operate and get the kidney and at least some of the surrounding cancer out. he is so confident that he has already scheduled an appointment for me with him March 11th.
also, i had two spots on my liver previously...the scan now showed that one was completely gone and the other had significantly reduced in size as well.
w00t! w00t! w00t! i can't believe it. it is too good to be true, yet it is true. the 30% of patients that responded to the sutent the way that i have had already had the "mothership" aka the cancerous kidney removed. the best chance of reduction in amount of cancer was when the source had already been removed. that is why my case was so grim originally. why my original diagnosis was 3 to 20 months. but, as i have mentioned several times now, i am a cancer killing machine and have beat the odds so far. i am going to continue to beat the odds i know it! i can do this. i can beat this.
50% reduction is almost unheard of with just 2 rounds of sutent. my dr. was very pleased. dr. doom blushes!
so, the plan is one more round of sutent. i start tonight, yuck. in 3 weeks i go back for my usual mid-cycle check up and blood tests. then get another scan in 7 weeks to see if i am still a cancer killing machine. my surgeon will look at that scan as well and then i have the appointment with him march 11th. im hoping this appointment will be a pre-op consultation. i never thought i would be hoping for surgery, but i never thought i would be diagnosed with stage IV inoperable kidney cancer either.
thanks to everyone for your well wishes and support. i greatly appreciate everything. i never knew i had so many great friends and people who love me.
Dec 28th - the big call
waiting, waiting, waiting...it is the worst thing. i hate waiting...trying to keep your mind off of what you are waiting for.
ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.
good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slows the growth.
yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!
my follow up appointment to see my scans and get word about surgery or no surgery is Jan 2nd.
fingers, toes, arms and legs all crossed again.
ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.
good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slows the growth.
yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!
my follow up appointment to see my scans and get word about surgery or no surgery is Jan 2nd.
fingers, toes, arms and legs all crossed again.
Scan Day - Merry Xmas
December 27th has finally arrived. My anxieties are high. i don't want to drink the nasty dye. i get to my appointment on time and am taken back into the "drinking room" and get settled in the little hospital bed to get my drink on. this time, they offer me an alternative to the 6 mega-shots of nastiness. they offer me what they call a "Banana Smoothie" and i only have to drink 2 10oz cups of it vs. the 6 6oz cups of nasty. supposedly the side effects aren't as bad either. BRING ON THE BANANA SMOOTHIE!
well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white, half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. i manage to only spit up a little of the stuff and choke the rest back down. this happens again on the second cup and halfway through the second cup the nurse(at least i thought she was a nurse) comes in the with IV bucket of tools and proceeds to try, i stress try, to start my IV. i have the worst veins...they just dont want to come out and play. because of this, i always have to get stuck in the hand. all the nurses hate this...smaller target requires more talent. every single one of them that has had to start an IV on me or take blood for tests has insisted that they are good and want to check my upper arm to see if they can "get me" and every single one accepts defeat and ends up going for the hand. Well, the "nurse" tried the hand and ended up blowing my vein and giving me a big ole bruise. she then says "oh, you are hard, i'll have to call the RN and get her to start your IV." CALL THE RN. WHO THE HELL ARE YOU THEN?!?
within 5 minutes another lady comes in with the IV bucket of tools whom i presume to be the RN. she tries the other hand and gets me no problem.
oh yeah, i forgot to mention that this time, i also have to drink gatorade with baking soda in it every hour for 4 hours after the scan. this is to help my kidneys push the dye out of my system since it is not good for it to stay in there for too long.
anyhoo, on to the scan. it goes off without a hitch as usual. it is simply the prep for it that i dread. the IV dye that they inject just before the scan i am starting to enjoy. it gives you a weird warm feeling all over as it flows through your veins and all around your body. like a big warm fuzzy...it also makes you feel like you have to pee, but that quickly passes.
now the wait. it is a holiday week. my dr originally wanted to do my scan the first of the year, but i insisted on having it before the end of the year for insurance purposes. my deductible was met long ago and i wanted to fit as much into 07 as possible before the deductible reset. he understood and moved the date without hesitation. so, like i said, now the wait begins. it is a holiday week, but luckily my dr is on call and said he will call with preliminary results as soon as he gets a look at my scan.
fingers, toes, legs, arms...all of them are crossed for good news. please let it be good news!!
well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white, half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. i manage to only spit up a little of the stuff and choke the rest back down. this happens again on the second cup and halfway through the second cup the nurse(at least i thought she was a nurse) comes in the with IV bucket of tools and proceeds to try, i stress try, to start my IV. i have the worst veins...they just dont want to come out and play. because of this, i always have to get stuck in the hand. all the nurses hate this...smaller target requires more talent. every single one of them that has had to start an IV on me or take blood for tests has insisted that they are good and want to check my upper arm to see if they can "get me" and every single one accepts defeat and ends up going for the hand. Well, the "nurse" tried the hand and ended up blowing my vein and giving me a big ole bruise. she then says "oh, you are hard, i'll have to call the RN and get her to start your IV." CALL THE RN. WHO THE HELL ARE YOU THEN?!?
within 5 minutes another lady comes in with the IV bucket of tools whom i presume to be the RN. she tries the other hand and gets me no problem.
oh yeah, i forgot to mention that this time, i also have to drink gatorade with baking soda in it every hour for 4 hours after the scan. this is to help my kidneys push the dye out of my system since it is not good for it to stay in there for too long.
anyhoo, on to the scan. it goes off without a hitch as usual. it is simply the prep for it that i dread. the IV dye that they inject just before the scan i am starting to enjoy. it gives you a weird warm feeling all over as it flows through your veins and all around your body. like a big warm fuzzy...it also makes you feel like you have to pee, but that quickly passes.
now the wait. it is a holiday week. my dr originally wanted to do my scan the first of the year, but i insisted on having it before the end of the year for insurance purposes. my deductible was met long ago and i wanted to fit as much into 07 as possible before the deductible reset. he understood and moved the date without hesitation. so, like i said, now the wait begins. it is a holiday week, but luckily my dr is on call and said he will call with preliminary results as soon as he gets a look at my scan.
fingers, toes, legs, arms...all of them are crossed for good news. please let it be good news!!
Wednesday, December 19, 2007
Die, die, die my darling!!!
i am a walking, cancer killing machine...or so i hope! tonight is my last sutent pill in round 2 of the sutent cycles. thankfully, i wont be feeling like ass over the holidays since my 2 weeks off starts tomorrow. yippie! the side effects will slowly subside over 4 or 5 days and then i get to have over a week of normalcy. its funny what you start to be thankful for...i am thankful for feeling normal for a day. w00t!
the only day that will suck is the 27th, the day of my scan. my onc nurse told me that i will have to do the drinking dye, not just the IV dye. yucky mcyuckerson!! i have had 5 CT scans and have only had to drink the dye once. that stuff is disgusting. they give it to you in 6 cups, like they are lining up shots on a bar. then they ask you what your favorite drink is so they can add it to the cups to "cover up" the taste of the dye. NOTHING can completely cover up the taste, but ginger ale does a pretty good job. anyhoo, you have to drink each of these mega shots within a hour and a half. one every 15 to 20 minutes(if you do them all at once you will puke your guts out). by the time you finish the last one, the first one is already screaming to come out the other end. this is not fun. you dont know whether to put your head in the toilet or your ass on it cuz you dont know which end is going to blow first. by the time i got down to the ct room, i had already puked once and blown out the other end at least 6 times...within an hour. i couldnt make it longer than 10 minutes without needing to be near a bathroom. so, because of this lovely side effect, i am dreading my scan day.
there is a medical reason for the way this dye reacts in your body. it is not good for the digestive dye to sit in your system for very long, so they add the special "trigger" to it so your body will get rid of it as soon as possible. great. bombs away! but, if the scan comes back and shows that i am killing cancer, in the grand scheme of things....it sure as hell is worth a little colon blow to kick cancers arse!!
the only day that will suck is the 27th, the day of my scan. my onc nurse told me that i will have to do the drinking dye, not just the IV dye. yucky mcyuckerson!! i have had 5 CT scans and have only had to drink the dye once. that stuff is disgusting. they give it to you in 6 cups, like they are lining up shots on a bar. then they ask you what your favorite drink is so they can add it to the cups to "cover up" the taste of the dye. NOTHING can completely cover up the taste, but ginger ale does a pretty good job. anyhoo, you have to drink each of these mega shots within a hour and a half. one every 15 to 20 minutes(if you do them all at once you will puke your guts out). by the time you finish the last one, the first one is already screaming to come out the other end. this is not fun. you dont know whether to put your head in the toilet or your ass on it cuz you dont know which end is going to blow first. by the time i got down to the ct room, i had already puked once and blown out the other end at least 6 times...within an hour. i couldnt make it longer than 10 minutes without needing to be near a bathroom. so, because of this lovely side effect, i am dreading my scan day.
there is a medical reason for the way this dye reacts in your body. it is not good for the digestive dye to sit in your system for very long, so they add the special "trigger" to it so your body will get rid of it as soon as possible. great. bombs away! but, if the scan comes back and shows that i am killing cancer, in the grand scheme of things....it sure as hell is worth a little colon blow to kick cancers arse!!
Sunday, December 16, 2007
2 Dollars - I want my 2 DOLLARS!
The drug that i continue to refer to that i am on, sutent, is a whopping $8500 for 28 pills(1 cycle). and no, i didnt forget the decimal point. with my insurance, i pay $2500, then all Rx after that are completely covered because 1 cycle of sutent alone meets my deductible. the reason these little capsules of diamond dust cost so much is because the drug is so new and only available through pfizer. the drug also has limited use currently because it has only been tested on a few things. if they found enough other uses for it, the cost could come down. this is another reason the post below is so exciting. whether my nerve bump is related to the cancer or not, the fact that the sutent seems to have an effect on it is big news in itself. if i was a dr. with a patient that could put me in the the pages of medical history, i'd be pretty damn giddy too.
Tuesday, December 11, 2007
Dr. Doom DOES Laugh!
3 weeks into the sutent cycle, i have to have my white cell count, platelets and hemoglobin checked to see if i can safely finish the 4 week cycle. so, today i had my 3 week checkup. i wore my "My oncologist is better than your oncologist" t-shirt...hoping for a smile to appear on dr. dooms face like at the end of the grinch that stole christmas. not only did i get a smile, he was laughing and blushing...it was great. i told him that it is my goal to make him laugh every appointment...he told me that it is his goal to get the bad kidney and ovary out of me.
after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly optimistic tho since the sutent hasa lot of work to do to get to the point where my kidney is operable. so, i am hopeful, but realistically hopeful so that if i receive bad news come Dec. 28th, i will not be completely crushed, it will simply be a minor setback.
on a side note...i have what my family has always called a "Nerve Bump" on my arm. it is an extremely sensitive nerve ending that has grown up from the muscle and forms a bump just under the skin. it looks like a bug bite. i have had it since i was 18. with some light research online, my family believed it to be Reed's Syndrome. my grandmother has some on her arms, my aunt has them all over her arms and back, my mom has a handful on her leg and i have 1 on my arm. my aunt found out that she had a large fibroid tumor. it was benign and she had it removed. my mom also had fibroids years ago...i however, have never had any fibroids. my aunt is in so much pain all the time due to her nerve bumps that she has done a great deal of research online and found some research that linked these bumps to fibroids AND cancer! It is now called HLRCC(Hereditary Leiomyomatosis Renal Cell Carcinoma). we brought this to dr. dooms attention a while back and he looked into it, but determined that based on what the pathologist saw from my original biopsy, they were not related.
Today i tell him that my nerve bump is not only much less sensitive, but it also seems to have reduced in size. he was so excited and interested in this fact, he said "we're going to make you rich and famous!" he left the room and went to get who will hopefully be my surgeon, dr. white to show him this amazing bit of biological material....first thing dr. white said was that he wanted to get a t-shirt like mine, then he said he wanted to biopsy the nerve bump because it was fascinating! they were like giddy school kids...they were so excited by the potential discovery that could be awaiting them if they could just get a piece of me! then a little bit of reality set in and they said they wouldnt do it until my blood work came back. at that point, we decided to schedule the biopsy for a later date...once we got my blood work back and it looked good to proceed.
so, THAT was exciting too! if they find a link between my nerve bump and cancer...i might be famous! i might actually be going through all of this for a reason....to help others in the future...and i might actually get to see and be a part of this medical advancement. today was all positive. absolutely wonderful. I am still keeping my fingers crossed for my scan on the 27th....please be good news!
after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly optimistic tho since the sutent hasa lot of work to do to get to the point where my kidney is operable. so, i am hopeful, but realistically hopeful so that if i receive bad news come Dec. 28th, i will not be completely crushed, it will simply be a minor setback.
on a side note...i have what my family has always called a "Nerve Bump" on my arm. it is an extremely sensitive nerve ending that has grown up from the muscle and forms a bump just under the skin. it looks like a bug bite. i have had it since i was 18. with some light research online, my family believed it to be Reed's Syndrome. my grandmother has some on her arms, my aunt has them all over her arms and back, my mom has a handful on her leg and i have 1 on my arm. my aunt found out that she had a large fibroid tumor. it was benign and she had it removed. my mom also had fibroids years ago...i however, have never had any fibroids. my aunt is in so much pain all the time due to her nerve bumps that she has done a great deal of research online and found some research that linked these bumps to fibroids AND cancer! It is now called HLRCC(Hereditary Leiomyomatosis Renal Cell Carcinoma). we brought this to dr. dooms attention a while back and he looked into it, but determined that based on what the pathologist saw from my original biopsy, they were not related.
Today i tell him that my nerve bump is not only much less sensitive, but it also seems to have reduced in size. he was so excited and interested in this fact, he said "we're going to make you rich and famous!" he left the room and went to get who will hopefully be my surgeon, dr. white to show him this amazing bit of biological material....first thing dr. white said was that he wanted to get a t-shirt like mine, then he said he wanted to biopsy the nerve bump because it was fascinating! they were like giddy school kids...they were so excited by the potential discovery that could be awaiting them if they could just get a piece of me! then a little bit of reality set in and they said they wouldnt do it until my blood work came back. at that point, we decided to schedule the biopsy for a later date...once we got my blood work back and it looked good to proceed.
so, THAT was exciting too! if they find a link between my nerve bump and cancer...i might be famous! i might actually be going through all of this for a reason....to help others in the future...and i might actually get to see and be a part of this medical advancement. today was all positive. absolutely wonderful. I am still keeping my fingers crossed for my scan on the 27th....please be good news!
Sunday, December 2, 2007
Sutent - he loves me, he loves me not...
this post will be short. the side effects of the 50mg 4 week cycle of sutent tends to sneak up on you. the first week or so into the cycle is not so bad, after that, the side effects start to build up. you have good days and bad days...bad days include extreme fatigue or not being able to stay out of the bathroom and having to force yourself to go do something cuz you know it is good for you to get moving...even if it is just to the store for a quick outing. good days include less time in the bathroom and enough energy to feel almost normal again. today was one of the bad days and im barely in the middle of week 2.
i do have to admit tho, i have been lucky. i have read multiple other accounts from patients on sutent that have more and worse side effects than i do. if the nausea, diarrhea, sensitive fingertips, pealing tongue, sensitive mouth, white hair, weight loss, yellow skin, highlighter yellow pee...all of the side effects i am experiencing are the price i have to pay for my "miracle drug" to work...bring it baby. i can take it! i may be a whiny baby for a couple weeks during the full 6 week cycle, but if its working, its worth it. PLEASE let it be working! December 27th...the date of my next scan to see if there has been any change...please, please, please be working.
i do have to admit tho, i have been lucky. i have read multiple other accounts from patients on sutent that have more and worse side effects than i do. if the nausea, diarrhea, sensitive fingertips, pealing tongue, sensitive mouth, white hair, weight loss, yellow skin, highlighter yellow pee...all of the side effects i am experiencing are the price i have to pay for my "miracle drug" to work...bring it baby. i can take it! i may be a whiny baby for a couple weeks during the full 6 week cycle, but if its working, its worth it. PLEASE let it be working! December 27th...the date of my next scan to see if there has been any change...please, please, please be working.
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