January 25, 2011

we met with out neuro dudes today, Dr J and Dr S, to go over the scan that was done last thursday {1-25-11} the scan showed that the tumors have grown and there are new ones.

we were given 2 options. full brain radiation, or home health/hospice.

we have already done full brain radiation and it did nothing, and they dont believe it will do anything now, and if it did it would be temporary. after finishing full brain radiation in June we were given hospice as an option and it made jason miserable, sick and exhausted, he slept all the time i can only imagine what it would do now...

we chose home health/hospice

rigid bronch 1-21-11

Jason was taken back for surgery at 12, after 4 pokes trying to get an IV, yes 4!! i pissed off the nurse by telling her that she was only getting one try, and needed to find someone else to come do it, he gets poked too many times...she was a lil ticked...but oh well, Jason shouldnt have to be poked so many times and of course the FISH for the vein! which makes it even worse. it took 3 different people 4 pokes until they FINALLY got a vein, and one of the people was the anesthesiologist, who usually has no problems {she tried getting a vein in his ankle!} she got it second try, she injected him with number stuff {forgot name} so he didnt feel her poking him, thank goodness.

Dr R came in and talked to us before the surgery, he told us that the tumor is definitely bigger now than it has been before, so he is going to go in remove the tumor and scrape out as much as he can like he has done numerous times now. he believes that by removing the tumor the spot in his lung that has collapsed will fill back up {it is the middle of the bottom of his lung {2/3}, we were under the impression it was a small spot but its a little bigger than we were told}

Jason was done with surgery around 115, Dr R came out and talked to me, said he removed as much as he can, the airway is now clear {there is still tumor there that has gone thru the wall, so by removing it there would be a hole in the wall of his bronch which would be BAD!!} but his airway is clear and the 2/3 of his right lung that was collapsed is now inflated! so he can breathe again!! {literally!!} it took him a little longer than expected to wake up, but he came to drank 3 cups of water then we were good to go...he slept the whole way home, and is sleeping now. He has more color to him, so i am hoping that by having the surgery and being able to breath again he will come back to...

i was told yesterday {1-19-11} by Dr G's nurse, that they believe this is the" beginning of the end."

I had written her an email the night before explaining how jason is, he sleeps all day, hardly eats, says only a few words, but they are "I love you" so that seems to help make it a little more bearable. i believe his eyesight is giving him troubles, but he is so far out in zombie land i cant get a straight answer from him. he had been puking for a couple days, but has now gone 2 days without puking. Also, he has had some bladder control issues. which they believe could be caused by melanoma in the spine and pressing on the spinal cord {dr G}

Dr J's nurse also called, and said that he could have possibly gotten a flu bug or something, since he was projectile vomiting, and sleeping so much. later she called back, after talking with the dr, they upped his steroid to 6 mg twice a day, and scheduled us an appointment for tuesday, and a scan to be done today, to see if the cancer has progressed more.

i was also offered counseling, but refused it, i dont see what good it would be to sit around in a big circle and listen to other peoples problems. {thats my take on it} they offered home health care, and to have medical equipment brought in, brought turned it down. Jason is still able to walk and our house is split level so a wheel chair is going to do us NO good, and we sleep in our bed so we dont need an awful hospital one...

its been extremely rough the past couple days, pretty much pure hell. i dont know what it is i am supposed to do, im too young to lose my hubby, and he is far too young to die!

if you would like to help, please just think of something, and dont ask. i dont want to come off as rude, but i dont know what we need, mostly help with bills, jason hasnt worked since juneish and i havent worked since thanksgiving and have no idea when ill be going back. so please if you want to give money there is the pay pal on the top right side of the blog, along with open accounts at America First Credit union and Ireland Bank. {jason schenk charitable account} and if you want to bring dinner or food, or whatever just do it, we are here pretty much everyday. {ill try to post what nights we WONT be home, so you know} we appreciate your generosity.

this post bring back bad memories? like we have been here before...yup here...when we were first told they were pretty well done with us...the reason we went to Arizona.

surgery was postponed until Friday 1-18-11. the anesthesiologists were unavailable for tomorrow morning, and we found out this afternoon because they dont confirm the anesthesiologists until the afternoon before the surgery. So we are on for friday morning.

Jason seems to be doing about the same, possibly even a little worse. he is still sleeping all day, doesnt talk much, hardly eats and the past few days he has been puking {our poor carpet has had it rough!} he is extremely unsteady, leans to the right. He fell a couple nights ago when he was putting his shoes on. i dont let him go up or down the stairs without me behind him. im hoping this is just the bad before the good, were still in the process of weening him off of the dilantin and still hoping that once the drug is out of his system, he will come back to a little more.

last night i started to get a little worried about the surgery, mostly the anesthesia, some people have issues with it, and some old people have MAJOR problems with it and never come out of it, or take a long time to come out of it. Now i know jason is extremely young, {but obviously age doesnt matter with jason n his cancer} but he is way out in zombie land so you cant blame me for being worried that he wouldnt come back to from the anesthesia, and be farther out than he is now....

While talking to the nurse confirming jasons surgery this morning, i told her i was worried about jasons reaction to the anesthesia, since he is so far out in zombie land, if the anesthesia was going to make it worse we wouldnt be doing the surgery. but i was informed by her and the dr doing the surgery that jason will be just fine, that he will be groggy when waking up {like everyone else} but should have no bad reactions to the anesthesia, since he hasnt had any before. god i hope theyre right!

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.

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.

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.

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...

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..

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...