Saturday, January 15, 2011
surgery
jason is scheduled to have a rigid bronch Wednesday January 19, 2011 to remove the tumor from his airway. i thought we would be meeting with the dr first, but considering he has had this done like 3 times so far they know what they're doing and are just going to get in n get it done.
Friday, January 14, 2011
Dilantin
i LOVE when drs realize im in the right, and they are WRONG!!!! :)) Jason is now being weened off of the Ditantin {thank god!!} the dose prescribed is 200 mg twice a day, so starting tonight he will be on 100 mg twice a day for a week, then down to 100 mg once a day for a week...and then DONE!! it will take longer than i expected but he will be off of it and thats what matter! im really hoping that after he gets off of this drug jason will get out of zombie mode.
He has been a little better, i got him out of the house the other night, we went to the movies and dinner with a few friends...it was good to get out and have some different scenery :) altho it wiped him out the next day and he slept ALL day... but one good night was definitely worth it.
Wednesday, January 12, 2011
new plan... January 12, 2011
I just received a phone call from Dr. Reddy's scheduler. Dr Reddy is the dr who removed{s} the tumor out of Jason's airway. Anyways, she was calling to schedule a Rigid Bronch {remove tumor} {ya what?} then informed me that radiation was also being talked to...after informing her that i had no idea what she was talking about, that we had only been told to wait a month then hopefully be heading to California... She decided it would be best to call Dr G's people and get back with me... about 10 minutes later, DrG's nurse called to apologize {yes APOLOGIZE!!!} for not calling and informing us of what they had discussed after we had left our appointment friday. After we left Friday they looked at the scans a little more and discussed them with the radiologist and decided that it would be best to remove the tumor from Jason's airway now, and not give it time to grow. considering the spot of his lung that has collapsed along with the rapid growth rate of the tumor in the airway, they want to remove it now, and not wait for him to have difficulty breathing and were hoping it will get rid of his cough.
So now we will be having surgery to remove the tumor, we have our appointment next wednesday. The surgery doesnt disqualify Jason from the trial in CAlifornia, and im still trying my hardest to get him active and back to normal, so hopefully we will be headed to cali in a month.
Friday, January 7, 2011
January 7, 2011
we met with the oncologist today, got a lot of info, but then not so much at the same time.
our appointment was at 130, we were told to be there early for labs {that they never did} we were on time! {woohoo for us!} like it matters tho, we didnt see the dr until almost 3! we met with his nurse long before he came in, she took down our history for the last 6 months, they were under the impression that we went to idaho cause it was closer to home..{ya right!! remember that one day june 14, when you offered us hospice, ya thats why we left!!} but after explaining everything that has happened, and complaining that they hadnt gotten our history from the precvious hospitals, we were done with her...then waited for like 20 minutes and the dr finally came in!!
the scans that were done Decmeber 24, 2010 showed new spots in Jasons abdomen, but none on or close to major organs. they are anout the size of bb's but from an oncologists view point, its stable.since its not growing extremely fast {or spreading} the spot that has been removed twice in his airway has grown a little, which causes a cough. The main tumor in his lungs has grown a little, and the cluster of tumors {that havent been mentioned for a LONG time} have caused a spot in his lung to collapse, so they cant tell by the scan if they are growing or shrinking. His has ulcerative colitis, which is caused by the Chemo{ipi} which is a good sign, showing that the chemo is doing something! in dr g's words Jason's immune system is turned on by the chemo! {also all the swelling in jasons brain shows good things from the chemo} Right now we are hoping for a delayed response from the chemo. {which is extremely common} We go back in a month for a check up, theres not much we can do right now with the way jason is {not exactly back, still in zombie mode} along with the amount of steroid he is on theres not many types of chemo for melanoma that you can do, or that will work while on steroids {ipi, being one of them} so when we go back in a month get checked up on, if jason is feeling better, and back to his normal self, or at least close to his normal self, then we will be heading to LA, yes Los Angeles, California...for a clinical trial for the BRAF mutation.
So right now i am busy trying to get Jason back to normal, being awake for more than 4 hours a day, being more active and back to talking as normal as possible... and of course saving up money to pay for the trips to california...im not sure the schedule of the chemo, or even if we will get into it, but were planning for a yes! and trying to prepare for it...
our appointment was at 130, we were told to be there early for labs {that they never did} we were on time! {woohoo for us!} like it matters tho, we didnt see the dr until almost 3! we met with his nurse long before he came in, she took down our history for the last 6 months, they were under the impression that we went to idaho cause it was closer to home..{ya right!! remember that one day june 14, when you offered us hospice, ya thats why we left!!} but after explaining everything that has happened, and complaining that they hadnt gotten our history from the precvious hospitals, we were done with her...then waited for like 20 minutes and the dr finally came in!!
the scans that were done Decmeber 24, 2010 showed new spots in Jasons abdomen, but none on or close to major organs. they are anout the size of bb's but from an oncologists view point, its stable.since its not growing extremely fast {or spreading} the spot that has been removed twice in his airway has grown a little, which causes a cough. The main tumor in his lungs has grown a little, and the cluster of tumors {that havent been mentioned for a LONG time} have caused a spot in his lung to collapse, so they cant tell by the scan if they are growing or shrinking. His has ulcerative colitis, which is caused by the Chemo{ipi} which is a good sign, showing that the chemo is doing something! in dr g's words Jason's immune system is turned on by the chemo! {also all the swelling in jasons brain shows good things from the chemo} Right now we are hoping for a delayed response from the chemo. {which is extremely common} We go back in a month for a check up, theres not much we can do right now with the way jason is {not exactly back, still in zombie mode} along with the amount of steroid he is on theres not many types of chemo for melanoma that you can do, or that will work while on steroids {ipi, being one of them} so when we go back in a month get checked up on, if jason is feeling better, and back to his normal self, or at least close to his normal self, then we will be heading to LA, yes Los Angeles, California...for a clinical trial for the BRAF mutation.
So right now i am busy trying to get Jason back to normal, being awake for more than 4 hours a day, being more active and back to talking as normal as possible... and of course saving up money to pay for the trips to california...im not sure the schedule of the chemo, or even if we will get into it, but were planning for a yes! and trying to prepare for it...
Wednesday, January 5, 2011
neuro appointment 1-4
we had our appointment with the neuro dudes yesterday. Dr s n Dr j... jason also had a scan.
We get to the huntsman for the scan, and of course we are late! but only by like 10 minutes {and its not like they're ever on time!!} go up to the desk tell them who we are, they look at us retarded tell us we were supposed to be there at 1 {i called the day before they said 120} and the proceeds to tell us how they wont be able to do the scan today, umm no we came from logan you will be doing the scan, i called yesterday and was told to be here at 120, if were supposed to be here at 1 make our appointment for 1!...needless to say the scan was done...oh it looks like we do have time to do it today, good thing! stupid imaging department! these are the people we have the most problems with there! this department is where the lady told jason getting cancer is a good thing, and this is the department that has messed up on our schedule numerous times, so we have had to spend all day hanging out at the Huntsman {which isnt really a happenin place!} ugh! it would be so much easier to not have to deal with them!!!
after the Jason's scan was finished we had to go straight to the clinic, because it was time for the appointment, we started to get checked in and the friggin fire alarm started going off!!! {luckily it was just a drill} it was the most annoying sound in the world n went on for 5+ minutes!! Jason was getting his vitals taken when it finally shut off, it took the nurse 3 different tries to get his blood pressure, then his pulse was 180!! Jason has a regularly low pulse, 60-80 so it being this high is kind of a big deal...she checked it again with the pulse ox {reads oxygen in blood, on your finger} and it was saying his pulse was 247, i dont trust the pulse ox to get the pulse from it always reads it weird, but still that is freakishly HIGH!! finally the drs came in...
the drs informed us that the scanned showed more swelling around the the tumors along with the area that they removed tumors...also some of the tumors look a little larger, but they believe they arent growing, but they are getting bigger... {dumb, confusing yes but let me explain} its like a balloon, when the balloon isnt blown up its just a balloon, then to make the balloon bigger you put air in it, so its bigger but not necessarily grown {make sense?!} so they think the tumors are bigger because of swelling in them, and we are hoping they are right, but cant be certain unless they remove them, which many of them they cant..also the scan showed NO new tumors! yay!!
so the plan as of right now is, to up jasons steroid to 4 mg twice a day, {to reduce swelling} for one month then to go back the 14 n 15 of february have another scan done and make a game plan, hopefully one that actually involves something! after meeting with the drs we hit up tha tlab had blood drawn then went home! :)
last night at 10:35 pm!! {yes pm} the dr called with jasons sodium levels. here i am thinking its going to be freakishly low that why they are calling so late to tell us to get to the hospital ASAP...well luckily i was WRONG!! his sodium was high, yes high 145 {ya thats what they wanted it to be when we were in teh NCCU and now its high} its not super high, mostly they are worried with how fast it went up, so he is off his sodium pills {yay} and he can have water again!!
we have our appointment with Dr G {oncologist} on friday to get the results from the body CT that was taken when we were in the NCCU..
We get to the huntsman for the scan, and of course we are late! but only by like 10 minutes {and its not like they're ever on time!!} go up to the desk tell them who we are, they look at us retarded tell us we were supposed to be there at 1 {i called the day before they said 120} and the proceeds to tell us how they wont be able to do the scan today, umm no we came from logan you will be doing the scan, i called yesterday and was told to be here at 120, if were supposed to be here at 1 make our appointment for 1!...needless to say the scan was done...oh it looks like we do have time to do it today, good thing! stupid imaging department! these are the people we have the most problems with there! this department is where the lady told jason getting cancer is a good thing, and this is the department that has messed up on our schedule numerous times, so we have had to spend all day hanging out at the Huntsman {which isnt really a happenin place!} ugh! it would be so much easier to not have to deal with them!!!
after the Jason's scan was finished we had to go straight to the clinic, because it was time for the appointment, we started to get checked in and the friggin fire alarm started going off!!! {luckily it was just a drill} it was the most annoying sound in the world n went on for 5+ minutes!! Jason was getting his vitals taken when it finally shut off, it took the nurse 3 different tries to get his blood pressure, then his pulse was 180!! Jason has a regularly low pulse, 60-80 so it being this high is kind of a big deal...she checked it again with the pulse ox {reads oxygen in blood, on your finger} and it was saying his pulse was 247, i dont trust the pulse ox to get the pulse from it always reads it weird, but still that is freakishly HIGH!! finally the drs came in...
the drs informed us that the scanned showed more swelling around the the tumors along with the area that they removed tumors...also some of the tumors look a little larger, but they believe they arent growing, but they are getting bigger... {dumb, confusing yes but let me explain} its like a balloon, when the balloon isnt blown up its just a balloon, then to make the balloon bigger you put air in it, so its bigger but not necessarily grown {make sense?!} so they think the tumors are bigger because of swelling in them, and we are hoping they are right, but cant be certain unless they remove them, which many of them they cant..also the scan showed NO new tumors! yay!!
so the plan as of right now is, to up jasons steroid to 4 mg twice a day, {to reduce swelling} for one month then to go back the 14 n 15 of february have another scan done and make a game plan, hopefully one that actually involves something! after meeting with the drs we hit up tha tlab had blood drawn then went home! :)
last night at 10:35 pm!! {yes pm} the dr called with jasons sodium levels. here i am thinking its going to be freakishly low that why they are calling so late to tell us to get to the hospital ASAP...well luckily i was WRONG!! his sodium was high, yes high 145 {ya thats what they wanted it to be when we were in teh NCCU and now its high} its not super high, mostly they are worried with how fast it went up, so he is off his sodium pills {yay} and he can have water again!!
we have our appointment with Dr G {oncologist} on friday to get the results from the body CT that was taken when we were in the NCCU..
Sunday, January 2, 2011
being home...
i LOVE being home, its so much nicer than being in the hospital especially the NCCU! sleeping in our own bed is magical!
but jason hasnt fully come back....i ask him to come back every day, he gives me a dirty look and says he will.{i feel like im in the notebook but a billion years younger than them!} he doesnt know too much of what is going on. He is pretty much in zombie mode... they started him on Dilantin, an anti seizure, {and kept his keppra} idk if im being naive, but i am blaming it for jasons behavior. and it could possibly be because im in denial, but i refuse to believe my husband is going to die from melanoma at the age of 22..we havent lived yet, we're still kids...and yet we have had more experiences this past year than many of you will have your entire life..we should have 70+ years to look forward to with eachother...but right now in our third year of marriage i am scared to death that i may end up alone before im even close to being prepared...
but jason hasnt fully come back....i ask him to come back every day, he gives me a dirty look and says he will.{i feel like im in the notebook but a billion years younger than them!} he doesnt know too much of what is going on. He is pretty much in zombie mode... they started him on Dilantin, an anti seizure, {and kept his keppra} idk if im being naive, but i am blaming it for jasons behavior. and it could possibly be because im in denial, but i refuse to believe my husband is going to die from melanoma at the age of 22..we havent lived yet, we're still kids...and yet we have had more experiences this past year than many of you will have your entire life..we should have 70+ years to look forward to with eachother...but right now in our third year of marriage i am scared to death that i may end up alone before im even close to being prepared...
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