Friday, February 26, 2010

Day Five

We got to come home!! :)) we are so glad to be home...

Jason steal feels like crap :( but his swelling is starting to go down...n he is getting back his whiteness {he is now just blotchy not just red}

well we went to Idaho sunday to spend some time with my family.... and im positive Jason over did it!!! he helped Tim {my dad} with the cows..then later that night...he helped pull his first calf!! and of course i was here to document it!! {sadly it was like the HARDEST pull ever, and the calf probably wont live long.} {obviously the pics are in no special order..}
Jason looking a lil disgusted
steppy had to take a break...she has a weak stomach LOL
standing around wondering if the calf is actually alive :s
a baby cow!!

we went to SLC today for Jasons follow up appointment with his radio surgery {done in January} we have had it scheduled since January, told to be there {and have a paper sayign so} at 9:15 am we get there {ON TIME!!} we go to check in...and are told we dont have an appointment for you today, you have one scheduled on the 22. {WTF?!?!?!} so after listening how we were under the impression that our appointment was today {piss me off!} she realized oh..well it does now good to go to your neurosurgeon with out an mri of your brain to show him! {duh!} so they moved the schedule around...and our appointment was bumped all the way to 2!!! so we got to travel around SLC for about 4 hours trying to find something to do... {we were extremely bored!!}{and might i add...i have become an AMAZING SLC driver!!} finally 2 rolled around Jason got his MRI done...the we went to the other side of the hospital to meet with the nuero people! finally the drs came in, and showed us this....
The white part on the right side is the swelling!!! {MASSIVE} the tumor has shrunk a little {woohoo} but the swelling is obviously the cause of, the headaches, blurred vision, memory loss, word confusion, {i think thats all...if not ill add it later!!} so he has been put on Steroids for the next 6 weeks to reduce the swelling, if that doesnt work brain surgery here we come!! and of course the IL2 has been postponed... for at least 8 weeks...{the steroids counteract the chemicals in the IL2}

People from our church/neighborhood have started bringing us dinner {thanks to our lovely RS ladies!!} and its amazing!! lol one of these days i will get better at cooking... but until then ill enjoy what others bring me!! :)) {THANKS!!!}

well i believe that is all i have to say....any questions feel free to ask!!

Thursday, February 25, 2010

Day Four

the morning/night started out rough...Jason was up around 130 puking {right after his 9th dose} finally got back to sleep after 2, then was up again around 445 to "use" the restroom. then again a little while later to get his weight {he weighed in at 233, on admit he was 216{all water weight}} he is asleep again {thank goodness}, the only things he says to me anymore are "i love you" and "im ready for sunday"{so we can be home}

He was okayed for the 10 dose for around 930, and we were told that it will more than likely be his last dose {his platelet count has dropped a little bit they are down to 80} and he has almost maxed out his weight gain {he was allowed to gain 10%} all water weight gain.

I go for little walks in the mornings {mostly to get a soda outta the machine{i have no control stephanie i am ADDICTED}} but all i ever see are old people! we are so out of place!! so i asked the noc nurse last night if she sees many young people here or if its all old{cuz thats all im seeing!} she informed us the most of the patients she sees getting the IL2 are from 20-30 years old, and every no n again she sees people who are like 16-17! so i dont feel as out of place :s {even tho i still would really rather NOT be here!} i went this morning to get a soda {all i have is a 5} and the stupid thing wouldnt take it!!! grrr.... and i didnt have time to go down stairs and get change or check out the gift shop {it was about time for the dr to come in} so now i guess i shall be drinking water for a little while today...

they have finally decided to cut Jasons demoral dose in half!! it is so much easier for him to handle {not as much nausea}

Jason is complaining of his heart today...he is sick of the constant anxious feeling....and the feeling of his heart racing! his pulse now days is usually around 120+ when admitted it was high 50 {its regularly high 50}his pulse freaks out when he breaths in (does his lil breathing treatment}this picture was taken monday or tuesday {thats why the pulse is so low} the lowest i have seen his pulse today is 110
Jennifer, corky, steppy and jesse are comin down today... its good to have visitors {i think more so for me than Jason}he usually just sleeps the entire time they are here.... but it keeps me can only spend so much time online!! its so nice to not be alone while Jason is sleeping...n they bring me real food!! haha and soda! woohoo

So today im feeling it more... ive been strong the past few days no breakdown or anything... im hoping i can hold off a few more days n not break down until we are home... and not in front of Jason{he is having a hard enough time, he doesnt need to know i am too}

well jason was given his 10th dose{WOOHOO} and no more!!! YAY!!! they have decided he has been pushed to the edge!! and anymore would shuv him over!! {which we dont want} So were hoping to be able to go home tomorrow, and if not tomorrow FOR SURE saturday...but why wait?! lol they should just send us home!!!

Overall the day wasnt too bad, it started out rough but got better...Jason went for a walk {he hasnt left the room since tuesday} got visitors, he was awake for most of the day, he has peed! :), and finished IL2 for the week! so we had a very productive day!

Wednesday, February 24, 2010

Day three

this morning started very early for me!! {around 430} i woke up to jason shaking something fierce!! and he wants to be strong and not be the annoying patient, so he waits as long as he can before calling in the nurse, which means he suffers for a good 20-30 minutes {while im asleep, when im awake as soon as he starts shaking a lil bit the nurse is called in} but now they are going to give him his demoral about an hour after his IL2 {he usually get rigors about 1 1/2-2 hours after each dose} and we have also decided to get the anti nausea med before the demoral {we believe thats what is making him puke} and they also put him on dopamine {to make him turn all of his excess water into pee}

I've come to LOVE the noc nurse that we have had the past few nights...she is amazing!! :)) she is uber nice, knows what she is doing {so i dont feel the need to stand over her shoulder whenever she is doing stuff} she talks to us, and you can tell that she genuinely cares. Which makes it amazing for me! {i get to sleep!!}

So the hospital has a massage therapist, and Jason was alseep when she came in yesterday...but he is awake today!!! :) so the lucky butt is getting a massage now...n she is complementing his tattoo!
lol so many people get a lil butt hurt when they see tattoos {which makes no sense to me...your not forced to look at it!!} here in salt lake some of the people who work at the hospital have the craziest most random hair styles and i guess Jason kinda fits in! :))

They started giving Jason potassium today, to help pretty much everything, from proper functions of cells, conduct electricity in the body, help with heart function, also helps with digestion. since Jason is vomiting and having diarrhea not eating much, they are worried about potassium deficiency.

well Jason finally puked...he had just gotten his demoral, and had fallen asleep. Didn't even have enough time to say he was going to just happened :(( and it was like PROJECTILE vomit!! all over the place :( i felt so bad!! he was covered, but now he is squeaky clean!! :)) Steppy and Jesse were here when it happened, i dont think i have ever seen them move that fast!! {we were all sitting next to the bed playing mario bros} and now he is asleep again...

We get a new noc nurse tonight {uber nice!!} she seems a lot closer to our age, jokes around with us, asks if we need anything, told jason she would be in as much or as little as he wants her in during the night, asks about us as people not just patients and just overall amazing!! :) She complemented Jasons tattoo, so im sure he likes her as well!! lol

Overall today pretty much sucked for Jason he has felt crappy all day, and slept most of the day... BUT we are on dose 8, and still going strong, the platelets have leveled out around 100, which is good {we cant get lower than 40} his fever left!! he has had a normal temp all day!! :) his BP is still good {they said it would elevate} he still hasn't had any hallucinations!! so were doin good, and he still passes the little brain quiz every morning!

we want to thank everyone for everything that they have done for us during this stressful time!! we appreciate it so much! :)

well they came in about 10 and told me that they would be skipping the 1am dose and begin again tomorrow morning, because Jason hadn't urinated yet.... NOPE!!! he had just nobody had come in to dump it out its back on!! woohoo for dose 9! {maybe 8}

i think thats all i have to say... any questions feel free to ask!!

Tuesday, February 23, 2010

Day Two

well day 2 was a little rougher than day one... Jason has pretty much slept all day, he recieved a dose at about 1 this morning, then another at 930. He did good with the first one, and not too bad with the second, until about 2 hours after recieving it. He got extremely nauseas, and rigors way bad. So they gave him demoral, which makes the shakes stop...but also puts him out for about 4-5 hours.. Today he started to show more side effects from the drugs... his pulse has gone up to around 100 regularly {when starting they were worried because he normally has a low pulse{50ish}} last night {while puking} his pulse skyrocketed up to 148. He has pretty much completely turned red {looks like he is sunburned} and has had a temperature of about 100 all day. He hasnt done much but sleep today!

The nurses and aides are all really nice...but i wish they would talk!! one of the nurses on today came in ALL THE TIME {and honestly we thought he didn't/couldn't talk!!} then we heard him talk to another nurse{we were shocked!} i guess maybe they all just dont know what to say to us {since a lot of people dont} but i wish that they would at least tell us what they are doing {they do when its drugs} but when they are fiddling around with the monitor...they could tell us, make it a little less awkward... our room is right across from the nurses station which makes it even more awkward {the one wall is almost completely glass} i swear every time i look out there they are staring at us!!

The dr came in today {like usual} he is pretty much in shock with Jason heart {sinus arrhythmia} he tells us that he has NEVER seen it before, but talked to cardiologists and they say its normal {nothing to worry about} we were told what jason platelets were, a little over 100, and dr said since jason has the brain tumor he doesnt want it any lower than 40! so..we have a few more doses to go... we have gone through 5 now and were told that Jason would probably go through around 7 or 8. so hopefully he will stopped being pumped full after tomorrow...

Jasons temp has now gone up to 101, they just got done taking blood, 2 from his pic line and 2 from vein in the other arm. {they are worried that his pic line may be causing an infection which would be causing his temp :s so we will find out in a little while....Jason was just okayed for another dose of IL2 so the labs must have come back good...

well i think thats all that really happened today {not too exciting} so if you have any questions feel free to ask!

Monday, February 22, 2010

Day one

well...we have made it through day 1.... it started of as an extremely boring night, we got here around 4:45ish {we were told NO later than 5!} we got everything situated, the wii hooked up, skype was tested n good to go... then we got to sit here, we played wii for a little while, not very long tho our remotes were both pretty well dead. So we got to sit and watch tv for a few hours... Jason was given an Iv around 6ish last night, after about the 3rd poke they finally got the vein! {idk why they have so much trouble with his veins, they are big!} he was pumped full of saline {to keep hydrated} along with antibiotics {the biggest worry is infection} then we watched tv... n was bored outta our minds!! lol jason finally fell asleep around 10 last night, but that doesnt mean much when they come in and out every 2-3 hours... so its safe to say neither of us got much sleep.

This morning started out early, they got the pic line put in around 7. Watching them put in the pic line is kinda amazing, seriously little surgery goin on in the room! they completely cover him in drapes so he cant really see whats going on, use an ultrasound to find the vein, sterilize the arm, numb it, then shuv the 45 INCH catheter in!!! and he says hasnt felt much since so woohoo for him. Then Jason had to get an xray to be sure it was in correctly. after that was all done n ok'd the IL2 began! the first dose went well, no serious side affects, just a slight fever...the second went well, until about 2 hours after receiving it. He went a little loopy {but not much more than usual} then he went RED and got really warm. then vomited, EVERYTHING he ate today... {which made this harder to handle, it was all good when there was no side effects!} He also has gotten rigors, {shaking caused by chills} so he has received anti nausea along with demoral for the rigors and is now passed out, sleeping it off.

We found out today that Jason has a heart condition called sinus arrhythmia, which is the normal increase in the heart rate that occurs during inspiration {breathing in} which we were informed is nothing to worry about, it just means he has an irregular heart beat to begin with so it will need to be watched a little differently while on the IL2.

I was hoping that Jason would do amazing and not have side effects, or not be effected until the last day or 2....but now its happened {and from what im told it will only get worse}

Saturday, February 20, 2010

Jason had CT scans done on thursday {feb 18} and we went back down to huntsman for the results friday. All looks amazing!! {since the last scan in december} NO new growths, and the spots in his lungs have grown very little!!! so yay!! :)) so the plan is still on for going down sunday to start treatment... {pretty much scared out of our minds} we have been doing research on the IL2 the past few days {bad idea!!} i highly recommend everyone to STAY AWAY from the internet when going through something like this...its seems that the only ones who comment on the things are those with bad experiences! The Dr. also told us that jasons cancer is the weirdest he has ever seen, his tumors/spots are in the airways, not just spots in the lung tissue. He told us that he has never seen this yay for him! {he gets a new experience}

we learned that the IL2 shouldnt make Jasons hair fall most just thin it out a little bit {which wouldnt hurt at this point in time!} also it wont effect the spermies.... {lol} so we wont have to worry about troubles getting prego {later in life} The nurse who informed us of this on friday made us laugh pretty hard, after telling us there was nothing to worry about with fertility, so have a good weekend BUT... lol {maybe its one of those "you had to be there moments"}

While we were at the hospital on friday our social worker came to talk to us about all this, and was shocked at how well we are handling this. How we see it is that you cant dwell on it, or it will RUIN your life. Its a lot to take in and it is very hard to deal with, but its here theres not much more we can do about it... but fight it n kick its ass!!! :)) I told her that its the hardest to deal with when im at work. N that my favorite is when people ask me if im "OK", ya, "are you sure, i heard"{of course you heard theres signs posted all over the work place!! along with the newspaper!! and its a SMALL town!!} then once convincing them that i am in fact ok, they insist on telling me their cancer story, about the grandma having breast cancer or something like that{which is NOTHING like melanoma} and i know im sounding like a major BIOTCH!!! but it gets old...along with peoples nasty comments, it would be best if people who dont know what to say, would say nothing!! just ask how i am talk about work ANYTHING but cancer, we prefer not to think about it everyday. When were home, it doesnt exist...its me Jason n Frankie :) {NO CANCER}

well were spending our first night in the HUNTSMAN tonight, and we are already bored out of our minds!! we brought down the laptop {obviously} and the wii, we went n bought new games a couple days ago{family game night, super mario bros} and ofcourse we didnt charge the wii remotes before we came so they are dead :( but charging now! so i will be kicking jasons trash at ALL GAMES tomorrow thru saturday!!

I think that is all that has happened in the past week or so.... if anyone has questions feel free to ask {that would help me decide what to write!}

Wednesday, February 10, 2010

so its been a boring past few days...were just working as much as we possibly can right now before chemo starts... i got the rest of the cruise pictures up on facebook!! We never heard from the that means NO steroids!!! yay!! :)) so as long as jason doesn't seize again we will be set to start chemo on the 21!

the past few days i have realized how many evil people are out there!!! those of you who are friends with me on Facebook know most of all that has been going on...and most of my thoughts on the situation!! but for those of you who arent on facebook... GET ON FACEBOOK!!! haha its that happenin place! nah...its really not all that!! but i spend more time there than here!! altho all info does end up here {eventually}. well we have been having some problems with people talking behind our backs!! then they {one in particular} decided that they were going to tell us all the nasty comments they had to share {note to all} if you have a nasty comment.. KEEP IT TO YOURSELF!!! we have more than enough going on right now...we don't need you to add your drama to our lives!! I have always been told that family sticks together in times of need...well NOT ALL DO!!! but thats okay!! we will just forget about that one!!

other than all the friggin drama...we are doing awesome!! :)) and thanks to Miles n Jo we will be eating for the next week or so with no problems!! :)) thanks everyone for the thoughts n prayers!! and everything else!!! we appreciate it all so much!!! we have been able to realize our true friends, and know who truly cares during this hectic time in our lives!! {even tho we knew sticks out a lil more now!}