Friday, December 31, 2010

gifts...

while we were in the hospital one of our neighbors/ friends email me to tell me we had gifts sitting on our porch and asked if she wanted us to get them for us since we had no idea when we would be home! {yay for good neighbors/friends!} Robert and Kacey came into town and were nice enough to stop by her house and pick them up for us, and also do a drive by of our house and picked up another box. :)
all of the gifts left on our door step werent signed to let us know who they were from. one said from your sister so im guessing a church sister? i dont know!! but thank you!! we appreciate it!!

gifts that were left on our porch!


from timari!!
from timari!!


gifts from the porch!



whoever you are you know me so well! sebra striped black n gray scarf!!! LOVE it!
{dont pay attention to the the creepy look on my face!}


a jewelry box, with a bracelet in it, jason a candy bar n gift card
shaving kit! {hopefully he uses it soon!}

our christmas celebration

we celebrated xmas in idaho the night we got out of the hospital {12-27} we opened presents that night and had a big dinner the next day! heres a few photos not in any particular order...

wesley n jason

jareth n wesley..they were sick so they had to wear masks{so jason would get sick}
dr frank n schenk!


frankie lovin on jason






Jason is always so grouchy!!




wesley opened this sceram "a box!!" then went on openeing another gift. when told to see what was in teh box.. "AHH ANOTHER BOX!!"





the boys wanted to open more presents after they were finished with theres so im pretty sure they opened everyones gifts! and were so excited that you got "your very own box!"

opening their gift from jason n me!



us girlies got jennifer a cricut! she had NO idea!




kacey got a nighty from jennifer, and jareth opened it...it was PRICELESS!

Thursday, December 30, 2010

one year ago...


well this post has been ready for a while, but with everything thats been going on i havent posted it until now...



One year ago today, our nightmare began, well to us its our nightmare some try to look at it as a blessing with letting us know that jasons cancer was back…but really there was things that Jason should have gone to the dr about, but those of you who know Jason personally, you know how stubborn he is, n he always did tell me he didn’t want to go cause he was worried of what the dr would say. I never really thought much of his cancer coming back, I didn’t know much about cancer before, especially melanoma. But Jason had had a mole removed when he was 19, along with all of his lymph nodes out of the left side of his neck, I thought that was the end I never thought he/we would be battling it 2 years later, especially to this extent…


The symptoms Jason was having before were his god awful headaches, along with always sleeping, and spitting up bloody mucus at least once a day {early in the morning while he was at work so I never did see it} I tried talking Jason into going to the dr, but we all know how stubborn he is and we all know how busy we were last year, with working full time and going to school. Which really isn’t an excuse, but that’s what were sticking with!


It all began December 22, 2009 we had gotten home from work, and luckily I had gotten a phone call that day telling me class was cancelled and to have a great break, they would see me next year, and Jason was out of school for the holiday, we had gone to Costa Vida and gotten food, it was the same as any other day, we were both exhausted from working that morning and didn’t want to cook. We got home changed into jammies, turned on the TV{we had cable then}we were watching the office {dumb show} ate and Jason had dozed off. He wasn’t asleep too long before he started making a god awful noise, and started convulsing, what happened next was kind of a blur, but I did call 911, screaming n balling, telling the operater that my husband was having a seizure, {or what I thought was to be one since I had never seen one before.} I remember having to pull Jason off the couch onto the floor so he would be on a hard flat surface in case I had to start CPR. Poor Frankie was in between jasons legs, and was getting squished, I had to put him in the kennel so he wouldn’t get in the way of the EMT’s. Jasons seizure lasted a little over a minute, which after he started his heavy odd breathing, which is just about as scary as the seizure itself. I had opened the door, turned on the porch light {even tho it was still light outside, its to show what house to go to} for some reason the 911 operator had hung up the phone with me but had called me back to tell me that the officer was at the house saying that it was an open lot {idiot} she made me go out n stand on the lawn even tho the ambulance and fire truck were parked in front of my house. The EMT’s came in took jasons vitals got his drug list {none} all his info then tried putting him on the stretcher….Jason is quite the fighter, especially when he is out of it. It took I believe 3 emts to get him strapped down. They had threatened him more than once that they were going to get a drug to make him calm down, but Jason finally started working with them… he was yelled BABY!! The entire time, “don’t this to me! Let me go!” which again started my crying!


After the operator had gotten off the phone with me I called my mom, and thankfully she n my dad were in logan finishing up their xmas shopping…they rushed right over. I rode in the ambulance to the hospital with Jason, he was starting to come to so wasnt fighting as much anymore. My mom called jasons dad, told him what was going on {there was no way I could talk}. Jason was taken for a CT scan of his brain. My parents were in the waiting room when the dr came in to tell us there was a bleed in jason’s brain, so they would be transferring us to the UofU hospital in SLC, to have more tests done. I went straight to the waiting room..crying of course…n we broke the rule of only 2 or 3 people in the room. There was my parents along with jasons dad brother n sister.


We were transferred to SLC via ambulance, my family was to follow and meet us there. When we arrived they took Jason back for an MRI, which took forever, while he was there the dr had come in and spoken with me about jasons medical history, and said right off the bat that his guess would be that it was his cancer moving up from his neck. After talking to the dr, the nurse came in and told me the MRI was going to take about an hour, so I could go out in the waiting room with family if I wanted to…I did J my parents n sisters were there {along with their significant others} and Jasons sister n husband were there.


About 2 hours later they moved Jason up to the Neuro ICU, where the nurses are bitches! That don’t know what they are doing! It took 2 nurses 3 tries each to get one of jasons Iv’s in. and the one went fishing for a vein, so Jason ended up with a HUGE bruise… we had been told they were thinking of removing the tumor surgically, but obviously we didn’t.


The next morning my parents came back along with jasons other sister n husband. Jason had gone for an MRI of his chest abdomen and pelvis. After which he was moved to the acute side of the hospital {much nicer!} Later that day the dr finally came in and told us that the MRI had shown some spots{7} in jasons lungs. And later that night a dr from the huntsman had come over to talk to us about our options. He explained the radio surgery, and said that would happen in January, said we would get to go home before xmas, and he hoped we could enjoy our holiday… he was the one who told us about the IL2 and that Jason would have a 6-8% chance of beating this. Then everyone left, so Jason n I could talk to the dr alone. Im not sure I ever told people what we talked about, but you are all finding out now. We asked about fertility, and got more personal explanations of everything which is nice, he made sure we fully understood EVERYTHING. He told us he would get info on a sperm bank {which we later found out the IL2 wouldn’t have an effect of spermies} it was such an emotional night im not sure how the dr fully understood anything that was coming out of my mouth. Im sure I am missing a lot of what was said that night, but I remember like it was yesterday how Jason had told the dr the biggest thing he was worried about was me, because if he died it would overall effect me more than him.


We got to come home the next day, my parents came over and took us home…


So theres the story, I know its long, and im sure ive missed stuff but im balling so that’s my excuse! Now for the second part of our 1 year ago…


In the past year Jason n I have become closer than I thought we could ever be, we have had to talk about everything from babies, to life insurance, wills, and death. Not exactly the first things you think to talk about in your second year of marriage… We have had multiple dr visits, hospital stays, crys, laughs and hugs…along with words of hate. {never towards eachother, always from others} we have been talked down to, up to, at, and about, we have lost family n friends knowing that our life would be easier without them and honestly it has been. We have learned who is here to really help and show support {and become extremely close with family and new friends}, and who we were better off having nothing to do with. We have learned to live our life with this dark cloud constantly following us around and still be able to have a good time. We have a whole new appreciation for our jobs! And our community, with all the love and support we have been shown along with the generosity from so many people we are so thankful for! We have learned to voice our opinions, this is a BIG one for me, and stand up for ourselves. We have learned how to act with bad news, in public and private. We have been able to keep a private life although everything is so public. This hasn’t been the year I expected to have in 2010 but it’s the one I was dealt so im trying my hardest to live it up with my Love, and I am thankful its over and hope that the new year will bring on better news.

Tuesday, December 28, 2010

were free

were home! well were i Idaho, we got to leave the hospital 12-27, around 330, and it was amazing! :)) ill get on later and give a full post with all the lovely details. just wanted to let you all know we finally are free!! {for about a week}
well we finally got to come home the 27, we left the hospital around 330ish and headed to idaho. We had to wait for JAsons sodium levels to come back, whcih ended up being 139 when we left. We were told the entire time in the ICU that his sodium needed to be 145-150, then they decided jasons would be good at 140-145.
sadly we didnt make it in time for Chris's wedding, so we went straight to idaho after leaving the hospital.

Sunday, December 26, 2010

december 26, 2010

well we were really hoping to go home today! {jason is suppose to be chris' best man tomorrow} so we are still really hoping to get out of here in time, but are worried we wont :(
The nurses let us sleep in this morning! ♥ so we got to sleep until about 830, which was great! Jason took his IV out... {grr} but it has been bothering him since it got put in, back in tremonton the 22, and it had to be changed today, so either way it was coming out! Britt{nurse} was out nurse last year while we were here! she is really nice we like her, she has been waiting to come back n put in a new IV, since were still in the NCCU.
Dr jensen stopped by this morning, was saying he figures he had a seizure because Jason was taken off the steroids too fast... and once he is weined off of the 3% we will get to go home...so hopefully early tomorrow, but possibly the next day, since they dont want to take him off of the 3% too fast. His sodium has been stable between 141-142. they lowered his sodium {3%} down from 70 to 60, so its going to be a slow process... He knows where he is, and all his questions..he is just really antsy and wants to leave, cant really concentrate on one thing...
Jason was doing a word search today, working his brain :) he didnt spend much time on it, but he did a few. He is mostly just dosing off n watching tv.
Jasons sodium level dropped, about 3 points when they lowered it to 60 U from 70 U, so he is on a higher dose of salt tabs and is salting EVERYTHING, hoping to keep it stable and be able to get off the 3% so we can get outta here!
we were finally moved out of NCCU and to NACU {floor} yay! and hopefully as long as jasons sodium stays stable we hopefully get to go home tomorrow!

we needed to replace our photo from the UofU last year so here is the new one. UofU 12-26-10

December 25, 2010

well we spent our christmas in the NCCU.. but it hasnt all bad we had visitors, opened gifts even got a wonderful christmas dinner...

we still havent gotten our ct results back, we have learned that jasons sodium level now only has to be 140-145 {we have been told 145-150} it has been pretty stable at 141, so we are hoping to get moved soon. They accessed his port FINALLY!! so now when they come every 6 hours for blood they wont have to pook his poor hands, they can just take it out of his port.








Friday, December 24, 2010

December 24, 2010

im going to add some to this during the day, with the updates/info i get. :)
merry xmas eve! lucky us get to spend it in the NCCU....Jasons last sodium level was 142, so its going up...but not very fast!! He has a CT scan scheduled for 10. We had a pretty good night, he only got up a couple times, and since he has been walking he is much steadier on his feet! When the dr came in this morning, he had to wake him from a deep sleep, and ask him all the lovely questions, jasons didnt get any of them right...but Nykol came in about an hour or so later and jason got them right, except for saying were at the huntsman...still hoping to be moved to NACU {it would be nice to not have to walk down the hall to go pee! :)} we have added our wedding date to the list of questions. he got it right after a few times last night, and ws convinced it was 10-10-10 today, when i told him its 8-8-8 he replied "i think your lyin!" {lol it was funny!} he is getting quicker with his come backs :) when asking him our wedding date last night, i told him he picked it because its really easy! he looked over to linda, "its easy but i cant remember!" couldnt help but giggle a lil bit! :)

Jason had his scan this morning but we have yet to get the results. He is answering his questions correctly still, has been really tired all day, hasnt gone for any walks other than to the toilet. He asked about frankie earlier, he thought he heard him doing his freaky breathing thing, and asked me if he was here... his sodium is still low, and once it is raised and stable we will get to move to the floor, dr said it should happen within the next couple days. then we will be in the NACU for lord only know hows long!
i asked about the CT scan, but since its xmas eve and ours apparently isnt "urgent" it hasnt been finally read, so we will hear about it tomorrow {which worries me that its bad, since they want to wait for the final read before telling us}

I GOT MY SHOWER{this morning}!! i am a whole new woman!! :))
MY mom and dad came down to spend the day with us. Randy {cousin} came up from colorado and stopped by for a while, his mom {aunt} chris came too! who brought us, well me dinner! but i had already eaten so i have lunch for tomorrow! {lasagna! garlic bread n dr pepper ♥} thanks!!

Thursday, December 23, 2010

December 23, 2010

well today was better, much better! jason got up was walking around, is now allowed to get up to the bathroom {toilet in corner of room} He sat up for a couple hours talking to us, played on the computer, then was out like a light!he was cleared for a regular diet and celebrated with a cinnamon roll! He is still really confused not well oriented with much of anything, altho he did get the president right this morning, but was just asked again n answered 50 cent...he has been watching tv, which i think makes it worse, his brain stays with the tv while he is supposed to be answering questions, so whatever is on usually ends up being the answer..when asked questions this morning on his walk he was right on, or extremely close{saying huntsman not the U} he randomly laughs, told us earlier that EVERYONE is a liar, a pain pill is now a coochy pill, and he has a string tied around his pee-pee {his words} i still have to watch what he is doing when he is playing with his arm, he tried pulling both ivs out and apart...so we definitely need something for him to do with his hands, the laptop occupied his time for a little while but he grew bored of it quickly...we had some good laughs, and some GREAT nurses, the 2 from yesterday we were blessed to have again today...n i know nykol is here tomorrow morning so it will be another good day :) {at least nurse wise} DR G {oncologist} came in today, to tell us some medical options after we leave the hospital, we have a couple chemo options {trial being one, BRAF treatment 2nd} but for either we have to wait for jason's brain to settle down, and no seizures, or growth...im not exactly sure for how long. Theres no news on when we will get to go home, and nothing in the nurses notes either, but our nurse tonight {linda} said that with how jason is doing she would imagine we will be moved to either NAC or the huntsman tomorrow. but we cant hold her to it, since no scan has been done, and she isnt the dr so she cant give the last call... Jason actually asked for a pain killer today! its the first one he has gotten since being here, linda told me he asked for one last night but didnt have anything ordered so had to be evaluated by the dr here n when he came in jason kinda looked at him like he was an idiot because he wasnt in pain!
dallas, and my mom came down, brought me some clean clothes, my tooth brush♥ and a shaver! lol {my underarms were outta control!!} but i am feeling a million times better! and might break down and use the public shower tomorrow :s{my hair is getting pretty gross} if theres no word of us moving to the NCU {floor} gpa n chris came today too! brought us Cinnamon rolls, n couple other goodies!

Wednesday, December 22, 2010

december 22, 2010 evening

jason has slowly started to come back to,he ate well drank his dinner of jello n root beer. he is talking more, not back to normal but its definitely much better than it was earlier today, he hasnt been able to get up and walk yet, but hopefully will tomorrow morning. he still isnt quite sure on the year, and believe he said that the president was tiger...BUT at least he is talking!! those are the only things as of right now that he isnt getting right{that they have asked} after sleeping 2 days straight, he is starting to wake up and is watching tv right now. Still have to keep a close eye on him with his IV's he isnt a fan and tries to pull them out {but really who can blame him! they are a pain!}
Last time i talked to the dr was a few hours ago, and he had said that he was going to get a hold of DR G {oncologist@huntsman} to see what he had to say, i dotn know if he didnt get in touch with him, if he had nothing to say or if the dr just hasnt made it back to us yet...
i finally got some sleep, about an hour {so i now have 1 1/2 hours in the last like 34 hours, but whose counting!}

december 22, 2010

well i have this huge long post of how this day went down last year, and what has happened in the past year..BUT before i post it...i will let you know what is happening this day THIS year...exactly 1 year from when our cancer fighting began.

were staying in idaho for christmas since we had chemo sunday and monday we didnt exactly see the point in driving to logan just to drive back out a couple days later, so we have just been chillaxin in idaho...well we were at my moms getting ready to head to steppys {we stay in her extra bedroom} i had been trying to get jason out to the car for about an hour. He was pretty out of it {and still is} he had walked up and down the hallway twice but ended up just laying back down on the couch and going back to sleep. well at 1223 {so technically 12-22} Jason was asleep on the couch and started seizing. yup he had a seizure, and yes it has been since MAY!!! so it was completely unexpected and nerveracking for my mom who was the one who called 911. and trying to explain to the operating where stone, idaho is...is well almost IMPOSSIBLE!!! then having to explain why you want to be picked up by the UTAH ambulance is even harder! but after explaining it about a million times she finally figured it out! the seizure was like all the others, grand mal {shaking} he bit his tongue, but not too hard, {for all you haters, i didnt record this one! but ill be glad to post the other one again!}

the ambulance finally got there {in the middle of nowhere its all volunteer and surprisingly some people are asleep at 1230am!} they loaded him up and we headed to tremonton. usually he starts to wake up about half way to the hospital when were in logan, but wasnt having such luck this time. we got the tremonton hospital, got him into the er, hooked up to all his gadgets, blood drawn, then came the CT scan...which was a chore!! jason would hold still, UNTIL you told him to hold still! it took about 4 different tries, and some valum! and we finally got a good picture! finally after many phone calls by our er dr jeff, to all sorts of on call drs and the U hospital along with the Huntsman they came to the conclusion {about 430am} to send us down to the University hospital, just to be safe, since they have all the scans, the surgery was done here, and overall they know what going on a little better! {altho i LOVED the er peeps in tremonton last night! thank you for being such wonderful healthcare workers} after a long sickening ride to the U, in th eback of an ambulance, in the snow, we made it in one piece! jason was having a really hard time hodling still, im sure he spun himself completely around at least 3 times!

At the University ER they got us into a room, took the history, along with more blood, and then another CT scan.. The scan showed that the tumors{6} in jasons brain have more swelling around them, so we figure this is what has caused the seizure, and we assume that the swelling is caused by the chemo treatment he received monday. so after a couple hours in the ER they decided to admit us to the neruo critical care unit {NCCU} which is just fancy for ICU neuro style! and luckily twice in a row now, we have had AWESOME nurses! i am so thankful for Nikol today, she is amazing! BUT anyways, Jason is on a limited diet {clear liquids only} incase he seizes again gets a bad ct scan and has to go to the OR {worst case scenario...JUST IN CASE} we are staying here tonight for observation, and hopefully will get to go home tomorrow, but we really wont know until tomorrow. They are pumping him full of steroids for the swelling along with anti seizure meds. He has yet to wake up and have an actual conversation with anyone. he wakes up for his hourly nuero checks {barely} he nods or shakes his head, tells us the year is 1998, flintstone, and im sure theres others i just cant think of them. i told him its 2010 but he tells me he cant say it. BUT on the bright side he knows his full name and mine..so thats a plus he hasnt forgotten me...

Tuesday, December 21, 2010

December 20, 2010

Jason had chemo today. I know I said earlier that he wouldn’t be having anymore chemo, but I lied! No, steve called the beginning of last week, and asked if he wanted the last dose of chemo, okayed it through the Huntsman and scheduled us to be there Sunday and Monday. We had to be there {Twin falls, Idaho} Sunday for labs, they all have to be done the day before so the drugs can be shipped from Boise. We were told the front desk and lab had everything we needed so it wouldn’t be any trouble getting labs done, they really lied! We sat around for over a half hour waiting for orders to be found, well they weren’t found{until after we left!}, so we had to wait for the on call dr to be called, then had to practically argue with him over the phone with what we needed {he was a prick!} finally he agreed to order labs, but no UA, so Jason got his blood drawn, and we had the rest of the day to blow…

Monday we had to meet with the dr at 1130, but of course didn’t see him until after 12, then had to wait for the chemo…we were told it had arrived while we were seeing the dr, but just didn’t get started with his chemo until almost 3! And we were taken back to start chemo at 1! We finally finished with chemo around 430, but had to sit for an hour for observation. All in all it made for a LONG day… Jason is now done with the clinical trial, he will have a follow up appointment with Dr G at the Huntsman to decide if he qualifies to be in the second session of the trial, if he does he will start that in about 12 weeks.

The elementary school in Snowville, had their Christmas program Monday night, we were supposed to make an appearance…but since chemo ran late we didn’t make it in time :’( we felt awful! Wanted to be there so badly, but we were called and sang to over the phone! The children had done a fundraising type thing, asked for donations for us so we could have a merry Christmas! It was such an amazing thing! Since we didn’t make it Monday night, we went in Tuesday morning and saw the kids… We had been there for about 5-10 minutes waiting for the kids to finish recess when Jason puked…ALL over! So the kids got an extra long recess while we got Jason all cleaned up and changed into fresh clothes. We didn’t want the kids to get too close, since its cold n flu season and jasons immune system is pretty well shot right now. So the kids stood outside the classroom and sang a few songs to us, gave us letters they had written and a jar of money they had collected for us{and about 4 boxes of food!!}. They were all so cute and it was such a wonderful experience I don’t think there was a dry eye in the place! In between songs they all wished for Jason to get better… I heard some of the stories of how the children acted throughout the entire experience and it just amazes me how giving they all can be at such a young age. One child had brought in his tooth fairy money to give to us, one little girl felt she needed to give us her ornament that she had made. I am also told that in their letters to santa some of the students wished for Jason to get better, hopefully I will get a copy on the Tremonton newspaper to share the letters!

I am so thankful for coming from such an amazing community, they never cease to amaze me with all their love and support!

Jason has been passed out since we got back to my moms from the school, he isn’t feeling the best today, im unsure if its from the chemo or something in his brain, on the ride home Jason was having a lot of troubles with his words. Our trip began in Cincinnati, we hit up Hollywood, Bali, and ended in snowville! {had to hit up all the big cities!} he was stuck on the number 124 when he was trying to tell people what mile marker we were at…it is all fun n games, we laugh but it worries me so much, that something that shouldn’t be going on is…I try to keep a good spirit with it but after so long it gets frustrating, when Jason takes over 5 minutes to tell me one sentence, its hard for us both to handle…

Wednesday, December 15, 2010

staples are gone!

thats right! jason got his staples out today! and you all would be so proud of me! i didnt puke pass out or anything i WATCHED!! we were so glad we didnt have to go to SLC for this since it took less time than a dose of radiation we would have been really upset!
jason staple free! :)) he had lots of goobery scab things but dr said nothing to worry about its normal, it will all come off in the shower...{unless your wife picks at your head...then its comin off sooner!}

Wednesday, December 8, 2010

pathlogy report

DR Jensen called a little while ago to give us the results from the pathology report... the main/first tumor was DEAD...yay! BUT the 2nd tumor they removed was still alive, which more than likely means the other 6 tumors in Jason's head are still alive...

So as of now the plan is to go back to the Huntsman in a month have an MRI and hopefully schedule another brain surgery, the dr is confident that there is at least 1 more operable tumor, and hopefully the MRI will show that he can get to more than just the one.

We will be meating with both of Jason's Neurosurgeons which means radiation might be an option, were hoping the steriotactic radio surgery, which jason had done to the first tumor in January 2010 {and it was DEAD!}

but that is all we know as of now, as we find stuff out ill let you all know! :)

Clinical trial-
we have been done with the clinical trial for a while now, Jason only received 2 of the 4 doses because of his up in steroids, along with the surgery. We planned on starting the second session at the huntsman, but now with the possible 2nd brain surgery we are unsure that he will get back into it...

Monday, December 6, 2010

12-6-10

well its been a couple days so i figured i would give a quick update as to how things are going.... We have been home a couple days now and love it! so much better than being stuck in the hospital {with no sleep!!}

Jason is practically back to his regular self! hard to believe he had BRAIN SURGERY 4 days ago!! we thought we would be barely coming home today... but we have been blessed throughout this past week, with how AMAZING everything has gone!!

Jason will get his staples out anytime after the 14, and has to have his sodium levels checked next week,{hopefully we can do both of these here in logan} but other than that i think we were done with hospitals until next month {so this is a vacation for us!!}

Saturday, December 4, 2010

post surgery Saturday 12-4

last night was a good night! Jason's sodium keeps dropping so he is off water, but can have pretty much anything else! They tell is its a normal thing for brain surgery patients, so its not too big of a deal! his pain isnt too bad, but we have to keep reminding him that he wants to keep it under control, its easier than having to try to get it back under control! he doesnt like his morphine so i think thats why he is telling us he has no pain, but luckily our nurse today explained to him that he doesnt have to take the potent stuff, he can have tylenol if he feels that will help...he took percocet :)
we got the results of the MRI today, they said it looks GREAT! there is a significant change in the swelling! so as soon as we get the orders from the dr we will get to head home! but were not expecting this to happen too early today, considering were waiting on the dr and its saturday!

his eye is swollen more today, and were told it will get bigger tomorrow before it comes down, and will take 5-6 days to be normal!
the bandage was taken off of his head today! so he is good to shower n all that fun stuff, just needs to be careful not to scrub it to hurt it...the staples will come out in 12-14 days.

{4:00} Were HOME!!! :))

Friday, December 3, 2010

post surgery Friday 12-3

Friday {12-3} Jason had a good night last night, the left side of his face is swollen {but thats because of surgery} he was having a few issues with his words this morning, but catches himself right after saying them. they were having a hard time controlling his BP this morning it was around 164/86 {latest is 118/47}. He is getting morphine and percocet for pain, its kind of hard to know how much pain he is in, due to his word scrambling. We are now in a regular room, which is so much nicer! quieter, bigger, more visitors at a time just over all better! :) were still waiting for the MRI to show how much swelling is still in his brain

4:00 Jason just had his MRI, but we are still waiting for the results {6:40} were hoping they come back soon and in our favor, it all depends on the MRI for when we get to go home!

Jason's eye keeps getting bigger, pretty sure it is going to be black! :(
Jason all puffy on the left side, its gotten a little worse, but he is asleep so you will have to wait for a better pic!

Thursday, December 2, 2010

surgery...

so ill add things to this as they happen throughout the day...
they finally took jason back into surgery around 1020 {so much for between 8-9} the nurse will call every 2 hours with an update, and so far all is going well :) {11:30}

surgery started around 11:30, it takes about an hour to get him sedated and prepped for surgery. he is stable and doing well {12:10}

{1:50} Jason is stable, they have removed about 1/2 of the tumor, and expect the surgery to take about another 2 hours..they want to be sure they remove as much as they can.

{315} Surgery is over they say jason did great, as far as i know they removed all that they wanted but i am still waiting for the dr to come talk to us. he is awake extremely drowsy but awake. they are taking him to the ICU now and we will hopefully get to see him soon.

{4:00} dr says he got ALL out that he wanted {2 tumors and swelling} all came out nicely, he will want to do a scan probably tomorrow. He said Jason woke up immediately, moving and talking {which is GREAT} we should get to see him in a few minutes, and hopefully get to head home by saturday!
Jason is having kind of a hard time with his words, but that is to be expected, he overall is doing amazing!much better than they expected! having no problems with his right hand! :)

Jason all ready for surgery!

battle wounds, im hoping they come in and change the bandage soon so i can get a better pic!
.

Wednesday, December 1, 2010

surgery

surgery is scheduled for tomorrow morning {DEC 2} to begin between 815-915, and is scheduled to last around 4 1/2 hours...at the UofU hospital :)
just thought i would let you all know! ;)

Monday, November 29, 2010

thank you! to whoever you may be.. :)


we received a gift in the mail the other day {not sure when it came we dont check our mail too often!} it was a gift card to pier 49 pizza! and was sent with no letter, or return address so we could stalk whoever sent it to us ;) but wanted to be sure to thank whoever you may be! so i hope you read this and know that we are very thankful for your generosity! :)

thanksgiving to now :)

we celebrated thanksgiving with my family this year, in Idaho where it was FREEZING!!! ugh! we drove out there Tuesday the 23, the day of our awful "blizzard" {the blizzard wasnt as bad as they said it was going to be} but the roads SUCKED!! it took close to 2 hours n it usually only takes an hour. when we finally made it to my parents house we started watching the news come to find out the road was closed..n had been for a while...oops! they really need to get better at posting it being closed! :) but either way we made it safe n sound..n slowly! We celebrate thanksgiving a day early with my family, it makes it easier for all of us to be there {theres 6 kids, 4 are married...plus a few close friends! so we have a houseful!} we had such a good time! {we always do...never a dull moment when were with my family, we are all very loud! n hold nothing back, makes for some good laughs!} After gaining about 50 pounds we played a few games then watched zombieland {if you havent seen it, you HAVE to watch it, hilarious!!}
We came home Thursday, we wanted to leave early...ya right! everyone knows were ALWAYS late!! lol so we headed out around 5...we were really worried the roads were going to SUCK since it had been so cold, but they actually were really good!
Friday we went shopping! {of course cant miss black friday!} We werent really looking for anything, just going for the fun of it...but we ended up with a christmas tree{we broke down n bought a fake one :s}, digital camera, and Jareth n Wesleys x-mas gift :) We got our tree put up friday, all decorated n looking good! {i LOVE it!}
Sunday, it stormed...all day! {im so sick of the snow, i hate being cold} so after work i started shoveling the driveway {jason told me if i did it, it would count as my work out for the day lol} well it sucked! i am almost to the point of paying someone to do it! ;)but our wonderful neighbor walked out while we were shoveling the sidewalk and told us not to worry, he would get it with his snowblower once it stopped snowing...so we were done! ;) yay for great neighbors! Later in the day, Jason received a blessing, from his Uncles, Lance n Miles, along with his dad {john} we had such a good visit with everyone who came {miles n jo, lance n kay, John n zach}
the surgery is getting so close! i cant believe its already time! but were still really excited and feeling good about it.


it was -13 at my moms, and by the time we made it to my sisters where we were staying it was -16 :(
Our Christmas tree! :)
ok, so i know i said i shoveled it, but a girl can only do so much ;)

Thursday, November 25, 2010

being thankful...

so ive seen a lot of people writing posts about what they are thankful for and decided i would join them! :)
i am so very thankful for
-Jason, my wonderful hubby even tho he makes my life hell some days, i am MADLY in LOVE with him!
-Frankie...he will always be my baby :)
-the fact that "real love stories never have endings"
-My wonderful crazy, LOUD family, and how close we have all become as we get older, i know i can always count on them for anything!
-Jareth n Wesley, how innocent and full of life they are, i LOVE them much n much! ;)
-all of my AMAZING friends!
-pictures, to catch all of the precious moments in our lives
-work, for both jason and myself, and the fact that they work with our hectic schedules!
-coming from a small community, its like having a HUGE family, that i can count on...
-drs, hospitals, modern medicine, you all know the hell we have been thru the past year, and im positive it would be so much worse without the amazing drs we have had
-the ability to make my own choices. whether its what dr to go to, what procedure to have done or even just what to eat for dinner, i am glad i have the right to choices, and a wonderful husband who backs up the choices i make {the important ones}
-the ability to stand up for myself, this is newly acquired! and i LOVE it!!
-all of the amazing people who are in the military, i have an extremely close friend in Afghanistan right now, and am so thankful for her n all the sacrifices she has made to fight for out country, love you Brit!
-the people who stalk this lovely work of art! {blog}
-for people who have nothing but positive thoughts towards us
-for having the ability to "block" the ones that are just plain rude.
-texting, since theres always those awful times that its just too hard to talk..
-to have a roof over our heads.
-all of the time that Jason and I get to spend together, we have become so much closer over the past 11 months...
-depressive days, i know WTF?! but really i can't be shooting sunshine out my ass ALL the time, and with my life...HELL no! ;)
-i am EXTREMELY thankful for all of the people who have helped us, and are helping us.... we appreciate you all so much! more than words can ever explain!
Now, i am certain i could go on and on, and i will probably add a little to this post every now n again, but for now i am done, {im crying...time to stop} i am so thankful for my life, altho there are many days i hate it and wonder why i have to be the one that deals with the crappiness of a cancerous hubby, and all else that has happened lately...but i LOVE the people in my life, and know that it will all be worth the fight {hopefully soon!} i hope everyone had a wonderful thanksgiving! we did!!

Saturday, November 20, 2010

brain surgery....

the surgery has been scheduled! well the pre op has anyways!! we have to be in SLC at the U of U hospital December 1st for blood work, and later that evening for an MRI to map out where the tumors are in jasons brain. After the blood work results have come back and as long as they are all good and within normal ranges we will be told a time for surgery for the 2nd, the surgery will also be done at the U of U hospital, which is right below the huntsman}. Jason will be staying in the ICU the night of the 2nd {as long as all the blood work comes back good n the surgery is done} then hopefully He will only have to stay in a regular hospital room 3 nights at the most, before getting to come home :)

we have been asked by quite a few people lately what they can do to help...well the only things we can really thing of are food, and financials...n you all know we hate to ask..but we know we need help... as you all know jason hasnt been to work in months, and i work as much as i can...but with the brain surgery were unsure with how jason will react with everything, so were unsure when i will be going back to work{the account at America First Credit Union is still open, Jason Schenk Charitable Account}... and well honestly...were always up for free food :))

Tuesday, November 16, 2010

Huntsman November 16, 2010

well we had our appointment with Huntsman today, and figured we would be hearing our options on radiation...but we were wrong! after a LONG 50 minute wait we finally saw the dr...

we were informed that according to the MRI that was sent down from ST. Lukes in Twin, Jasons Neurosurgeons {jensen and Shrieve} would say that everything is stable! there is some more swelling, around other tumors, but over all they all look very stable. Also most if not all of the tumors have bled, which means they are DEAD! or at least dying! yay! so the treatment plan we heard today, which is completely Jasons choice to go thru or not... is brain surgery... kinda a big deal! lol but dr jensen wants to go in a remove the first tumor {the one who started all this cancer crap!} all the blood around it and hopefully a tumor next to it!

the dr says worst case scenario, jason will be set back about a month with speech and possibly ROM in his arm...but that is WORST case scenario, and theres only about a 30% chance of it happening {if he had to give it a number}

so Jason has chosen to go with the surgery, and hopefully it will be done the first week of December, we were given the option to have it done before thanksgiving but dont want jason to be feeling crappy for the holiday, plus black friday! ;)

Also by doing brain surgery, it will show if the tumors are truly dead, and give the drs an idea of how well the treatment has worked. along with ending jasons blood brain barrier, which means the trial chemo will now go into his brain!
if you have any questions feel free to ask!

as of late...

well we have a lot going on the past week or so...that has well been rough...so we havent been up for talking to anyone too much lately but are slowly getting back to normal {well as normal as our lives get} so i just wanted to do a quick update and let everyone know we heard back from the huntsman last week, Jasons Neurosurgeons {yes he has 2!} met and presented his case with the tumor board, and apparently it didnt go too bad cause we are to be down there today at 4 to find out what the treatment plan is.. {i had jason call to make sure there was going to be a treatment plan, cause thats a long drive and a waste of money if they are just going to tell us they are doing nothing...}
And i finished my book, it was good! definitely a tear jerker!! so if anyone has any recommendations i would be more than glad to hear them! we dont have TV so reading helps pass the time...and is just overall so much better than gettin fat in front of the TV! {even tho we are AMAZING at that!}

Tuesday, November 9, 2010

books!

so we just finished reading a book called Stronghold by Joe Fornear. It is about a man who is diagnosed with stage 4 melanoma, and lives {but it never was in his brain, and thats where all our problems come from..} It was very interesting to read all of the things that he tried, most of which jason has done all of them...a long with the pain meds. it got a little too religious in parts but overall was a very good read and i would recommend it to everyone! especially to our families...i think it was very informative about cancer, the treatment, and drugs....

I also just finished a Grief Observed by C.S Lewis, and i really liked it. His books get a little confusing, but this was just some of his thoughts after his wife had died from cancer{ it doesnt say what kind she died from} He explains his understanding of grief and how he feels towards his wife dying, the world, along with god...

and im uber excited to start my new book today, The Last Lecture, that is written by a professor who was diagnosed with terminal cancer. ive read good things about it..so im pretty excited to start it! n ill let you know how it is once i finish!

Monday, November 8, 2010

Twin Falls November 4-5

so the last couple of weeks with pneumonia and headaches have pretty much been hell, and just kept getting worse as it got closer to the dr appointments so the drive {3 hours} sucked more so than usual!

Thursday November 5-
we had our appointment with the drs at 1 along with blood work... and jasons head was killing him! he gave it a 9 on the scale of 1-10 {which is amazing he gave it a number since he NEVER has before, at any hospital} so the PA ordered a brain MRI to be done but of course the radiation department was BOOKED! along with all the other places in twin {booked until tuesday} they even ordered it STAT but oh well...we had to wait. After jason had his blood drawn we went to talk with the PA who did a nero exam, and like a half a physical, then checked his vitals, he did orthostatic vital signs to check jasons hydration level, and he was dehydrated. which doesnt surprise me since the past almost 2 weeks he has done nothing but sleep and puke. so after meeting with the dr and trying to figure out a time to do an MRI jason was shot up with some saline to hydrate him back up, along with anti nausea medicine and dexamethazone {steroid, to help with his head ache} while we were waiting for him to finish the fluids, steve {nurse} came in to tell us the soonest they could do the MRI would be friday morning at 6 AM!!! {and of course we had to be at the hospital at 5:45} thank goodness where we were staying was right across the street from the hospital. {so we made it on time!}

once jason was done with the fluids we were done for the day so we went over to our extremely ghetto apartment, then got some dinner and called it a night {extremely early!}

Friday November 5
well our day began far too early! we had to be at the hospital to check in at 545 for jasons mri, which felt like it had taken a lifetime! and after the mri we had to search the hospital to find someone to flush his port with heparin. after being sent to the cancer center and noone was there for another hour we went to the ER, and thankfully didnt have to wait very long!
our next appointment wasnt until 1, so we had some time to lounge around {nap}
As soon as we walked in the building steve took us back to a room, so of course we knew there was bad news {story of our lives} steve informed us that the mri didnt come back good...there are new tumors, most of the tumors have grown and they all have more swelling... after steve told us all that was going on the PA came in and told us the same thing...they wanted to up Jasons steroid to 12 mg a day {he started at 2, but we were told that it isnt uncommon to see people with brain lesions to be on 16-18, surprise to us!} so after deciding on 12 mg we went over to get shot up with chemo. during th e3 hours of chemo, steve came over to talk to us, the change the steroid dose over and over again! we settled on 8 mg. it was hard to make a decision based on the fact the the trial chemo ups T cells where the steroids suppresses T cells, so have a steroid dose too high it counteracts the chemo, which there for make it useless. we think Steve was kind of in shock that we had taken the news so well, he kept asking us if we had any questions, or if he had explained it that well. I informed him it was like the 3rd time we had received this news, so we pretty much understood what was going on.

now decision for the brain tumors, we are trying to see if jason can have any more radiation to his brain {full brain or stereotactic radio surgery {which was done to the first tumor in january}} we were given the option to go to logan, arizona, or back to the huntsman. Then the option was taken away from us, since all of the drs, and trial people think that since the radiation was already done at the Huntsman {SLC} it would be best to go there. so now its a waiting game, to hear back from the Huntsman to see if they will agree to more radiation or leave us be... they called monday to tell us they were waiting for the MRI from Twin, then Jasons Neurosurgeons would be meeting wednesday morning to decide what to do, and we will be called once they have made their decision...

Also! we found out that the trial jason is in, in Twin just opened in SLC, so we may be transferring to go there so we dont have to drive as far {and i dont have to take as much time off of work, surprisingly bills dont stop coming when the money does!!} it is a 3 hour drive to twin {one way} and we have to go at least one day before he is to be injected with chemo for blood work, since the chemo comes from boise so it needs time to get to twin, where as in SLC the huntsman will have the chemo and it takes about 15 minutes to get results from blood work, and its only an 1.5 drive!

honestly were not getting our hopes up on more radiation, the Huntsman has already told us once they couldnt do anymore...so it will be a major shocker if they decide to do more radiation... were not exactly excited to be possibly going back to the Huntsman, but were up for anything...good news has eventually got to come our way....were too young to get nothing but bad news...

Wednesday, October 27, 2010

Oct 22-24 friday, saturday, sunday

i am very grateful to work for a place that understands what i am dealing with, and gives me days off for my hubby being sick :) they completely understood when i called in thursday night. :)
Well thursday night i was up checking Jasons temp every hour...it never reached 100, and we never heard from the drs {eww!!} so we called them again the next day, and of course all fo the trial dr's were out fo town until the 25! so we talked to the triage nurse, who made an appointment to see Jason's regular physician here in Logan. He had labs drawn then we saw his dr. The labs all came back good, so the dr just told us to keep an eye on the symptoms and of they got worse to go into the er {thanks for nothing!} jason's eye was still really bothering him, so after seeing dr huffman, we went n saw dr young, an ophthalmologist, who gave jason a prescription for a steroid type eye drop {which we never got filled, his eyes stopped hurting} but he did say jasons eyes looked all within the normal range!

Saturday-
Jason woke up with his fever, again! he moved from our bed to the couch, and slept all day! he finally woke up around 630ish i took hos temp again, and it was over 100. so i got him some tylenol and a cold rag n held that on his head trying to cool him down a bit, while he took his test for school...after taking his test his was just laying on the couch, and randomly just PUKED!!! all over EVERYTHING!!! he was covered, along with his laptop, blanket, and couch! {i am so sick of vomit!} so he went up for a shower, after that we checked his temp again...this time it was 101.6, so we went to the ER. the visit was about 5 hours {it is never any shorter} they did blood work, cultures to check for blood infections, from his port and arm {2 different areas that way if one comes positive its easier to find out where the infection is} and tried for over an hour to get a hold of the clinical trial people. but that never happened to we winged it {sort of} we had to wat for all the labs to come back to check liver function and everything before giving jason any meds. Finally when all the labs came back good {his white blood cells were a little high} they gave him some tylenol to help with the fever, and some anti nausea meds. after waiting a little while, the dr came in and decided to get a chest xray {thank goodness!} and come to find out Jason has Pneumonia! so they pumped him full of antibiotics, IV and pills then gave us the option to either stay at the hospital of go home for the night and come back..we went home! the hospital is like a 20 minutes drive, or a quick call to 911, so i wasnt too worried about getting back if something happened for the worse in the middle of the night.

Sunday October 24
we attempted to sleep in {but sleep doesnt come to easy.} so we checked jasons temp in the morning, and it was coming down! {it had started in the er, but by sunday morning it was below 99.5!} we chilled out on the couch for a little while, then headed to walmart to fill jasons prescription {zpak} then back to the hospital. it felt that we had sat there for well over an hour before the dr decided to do more antibiotics. When we first got there they couldnt decide if they wanted to do more antibiotics or not since he seemed to be doing so much better!} so the antibiotics finally got started and about 2 hours later we got to come home! they also did another WBC {white blood count} it had lowered from the day before so it was back to normal!

we never could get a hold of the drs for the trial, which really pisses me off, since they want us to tell them as soon as he starts to feel symptoms, but we cant seem to do that when ALL the symptoms start after hours!! but luckily none of what jason was feeling was symptoms to the chemo, it was all the pneumonia. so hopefully the next doses jason feels normal, and doesnt get sick!
Jason seems to be feeling much better, but is still exhausted and sleeps most of the day {but if i could i would too!}

Thursday, October 21, 2010

October 21

well jason has been feeling pretty good since starting the trial friday. While we were there Steve had told us that the person who started it before Jason was having no symptoms. {jason is the second person to do the trial at ST Lukes} but we were also told that people doing it in Boise had to symptoms either. So we were pretty stoked, hoping that Jason would be the same! but...of course not that would make things too easy!
he hasnt been feeling the great the past couple days..but it got worse last night and really bad tonight. last night when he got into bed he had an extremely bad headache and his eyes were red and sore, and he told me that he had gotten up to puke in the middle of the night..well tonight is even worse.... he puking started early...around 730ish...took his temp of course he has a fever 99.6 he is also looking a little jaundice. so we called St Lukes to see what it is were supposed to be doing, but no one is in the cancer center after hours so they transfered us to internal medicine..which did NO GOOD she told us to call back in the morning. WTF!? so were waiting to hear back from another dr to find out what to do. we were told that the trial wouldnt cause a fever, so i am confused on what it is i am supposed to be doing...i tried talking him in to going to the ER but he doesnt want to..so i am waking him up every so often to recheck his temp.
He had been in bed for about 30-40 minutes when i heard him puking, i thought he had made it to the bathroom...i was wrong!! poor jason was covered...along with our freshly made bed...so he got in the shower n our bed was once again made with clean EVERYTHING! rechecked his temp still 99.6 so at least its not going up super fast... oh n to top it off he is extremely confused...he went to call ST Lukes, and handed me back the phone because he has no idea how to use it... {he used to have one identical to it!}

so this is my night...waking up every hour to take a temp on someone who just gives me dirty looks because he has no idea what i am doing...im hoping that i can get a little bit of sleep in n that his fever will go down so we dont have to visit the ER {we always end up being there for at least 5 hours!}

well that kept me occupied for a little while...time to go recheck a temp!

3rd hospital in less than a year?!

YUP! we were called by steve at ST Lukes in Twin the 13 n told that all of jason's labs came back good {he doesnt have HIV!!} so he was to start the trial on Friday the 15! {which kind of sucked since its a 3 hour drive one way, and we went twice in one week!!}

Friday October 15, first day of trial!
we got to twin around 1 for Jason's first treatment, and they didnt start until after 3! it takes an hour n a half to inject the drug, then we have to hang around for a whole hour after for observation! {every time!} so we didnt get to leave until after 6 which totally sucked! but hopefully worth it!

we were told by the main nurse on the trial that the drug is unknown to pass through the blood brain barrier. If he had brain surgery the blood brain barrier is broken so it would pass, but since jason has only had radiation it will not pass. BUT it hasnt been studied to see if it passes through or not.. the drug is supposed to train the immune system to fight against cancer cells, so if the drug works correctly the and trains the immune system there will be no problem with the blood brain barrier. they also told us that the drug can mess up babies to no getting pregnant while jason taking it n up to 6 months after {uh duh! seems to be the story of our lives..everywhere we go were told DONT GET PREGO!} steve {the main nurse for the study} told us only sex with condoms n spermicidal lube! {the drug hasnt been studied on fetus reaction, but they believe it can and will cause some major birth deffects!}

i think that is all we learned about the study..so if you have any questions really feel free to ask! {and if your embarrassed to ask publicly, try doing it anonymously or you can message me on fb or email schenk_hope@yahoo.com}

Meeting with Twin October 12

we met with the dr in Twin on the 12, to find out if jason would be accepted into the trial. we got there a few minutes late {go figure!} and of course had NONE of the paperwork for them {history that they mailed to the house, but we hadnt been home since early friday} so we had to fill it out there which sucked, we were rushed n it was just a pain! well after we finally got the paperwork all filled out, we went back to meet with the dr. she got our history{the hospital had misplaced it, thank god im psycho about keeping records of EVERYTHING from the hospital} so we pretty much just passed around our binder full of papers. The dr did a skin check {we were told she was going to do a full physical..but didnt} after meeting with the dr, and learning all about the trial, jason had labs done {all of his labs have to be done at the hospital in twin since its lab is certified by the government for a trial, which really sucks cuz it is a 3 hour drive!!! and labs have to be done at least one day before he is to be injected with the drug} we had to wait to hear back from the hospital, the next day, to know if jason was in or not...

Arizona October 8-11

i know its long over due...but i have been busy not to mention exhausted! :) We had such a great time in Arizona! {we always do!} we went down friday and spent the weekend with timari n the girls, then Sunday had a great day at a BBQ with all of our friends there! we had such a great time! thanks everybody!!
Monday we had an early start at the hospital, the took an x-ray of jasons chest {he has had a cough since the last visit to Arizona} it showed some fluid in his left lung so the dr put him on an antibiotic. He had labs taken, all came back normal! {which is surprising since jason has had all the chemo, his labs have always come back good!} Jason was given a stronger pain med for his head aches, his hydrocodone hasnt really helped too much :( so they gave him Dilaudid. {narcotic pain reliever} they also had him up his dexamethasone{steroid, but he has tried this in the past, it doesnt help} As of now he has only taken his Dilauded a few times so he hasnt exactly decided if he likes it or not..

Wednesday, October 6, 2010

Clinical Trial

We found a clinical trial in Twin Falls Idaho!! :)) {a little closer to home} We meet with them on October 12 :) the day after we get home from our last trip {we think} to Arizona. If Jason clears all of the qualifications he will begin the trial around the 18.

CA 184-045 study for Ipilimumab
The trial is a compassionate care trial which means everyone who qualifies will get the drug, no placebos given! {thank god} Jason will go n receive the drug every 3-4 weeks for 4 doses. scans will be done randomly throughout the trial to see if the cancer is reacting the way we want it to, if it isnt we will be advised to stop the trial and i guess go back to Arizona and start up chemo again... and if it works in our favor we hopefully will be given the option to receive another 4 doses. Jason will have his blood drawn before every dose, which we are so happy it isnt every week like now, since his blood draws have to be done in Twin falls. They are very persistent with NO getting pregnant while receiving this drug, since they have not studied the effects on the fetus.
Steve {the clinical trial dude} told us that the drug is a lot like the IL2 that Jason received in February {week of pure hell, thank god for my family being there} so were not looking forward to the effects of the drug, although we were told the main side effect people have are fatigue and diarrhea.{the drive will suck since there is NOTHING out that way so hopefully jason doesnt have to poop too bad!} they are also really worried about bowel perforation, especially since Jason has received IL2. Steve also told us that the drug has a 25% working rate {coulnt think of a better word} which is hella higher than ANYTHING Jason has received before or been offered! so were feeling pretty good/excited about this! :))

if you have any questions feel free to ask! i kinda shortened the info... A LOT...

Tuesday, September 21, 2010

Anatomy of Jason's tumors...

I have been asked a few times where all of Jason's tumors are located, and really haven't looked into it too much, until now. I got copies of all of the reports from jasons scans the last time we were in Arizona, so now i can tell you where all for the tumors are located!

Brain {about 8 tumors}
12 mm{9/15/10} previously 6mm {8/3/10} Left medial temporal lobe.
Temporal lobe-hearing.
10 mm{9/15/10} previously 6 mm {8/3/10} Right posterior temporal lobe.
Temporal lobe-hearing.
there is now edema surrounding involving these 2 lesions
6mm {9/15/10} previously 4 mm {8/3/10} right frontal parasagittal
Adjacent to the temporal lobe.
7 mm {9/15/10} previously 3 mm {8/3/10} right posterior parietal
Parietal-sensory, motor, pain, heat, touch
10 mm {9/15/10} previously 7 mm {8/3/10} right occipital lesion
Occipital-vision
2.9 cm stable lesion {9/15/10} left posterior frontal {main tumor}
{compairable to a cherry or grape}
Frontal- emotions, personality, morality, intellect, speech
1.9 cm stable {9/15/10} right frontal lobe
frontal, emotions, personality, morality, intellect, speech
Vasogenic edema surrounding these 2 lesions appear improved slightly
9 mm stable {9/15/10} right cerebellar lesion
Cerebellum- muscle tone, equilibrium, walking, dancing



Chest
Lungs
3.2 cm lobular in right lower lobe. {9/14/10} Which previously measured 1.8 cm {6/25/10}

Abdomen and pelvis
clean!






Monday, September 20, 2010

Arizona September 14-17

well we left for Arizona not so bright n extremely early tuesday morning. We had originally planned on flying there that morning and home that night, so i can work more...but that didnt happen! the day was awful from the beginning!
we made it to Arizona on time, but transportation didnt have us scheduled, so we sat at the airport for an HOUR!!! yes a WHOLE HOUR!!! ugh!! but we made it to our first appointment right on time!
Jason had blood draws, then had a CT scan of his chest, abdomen and pelvic regions. then we FINALLY got to eat breakfast ;) when we met with the dr, he gave us the results of the CT scan...which pretty well sucked. but could have been worse. The ONE spot in Jason's lung has almost doubled in size. :( so we talked it over with the dr, and scheduled an MRI of Jasons brain for the following day. While talking with the dr he gave us our options...we could either do a stronger dose of chemo, or i guess quit chemo all together n just search for a clinical trial. We chose the stronger dose of chemo, and are also looking for a clinical trial. The new chemo still has the DTIC which jason has been receiving since we started going to CTCA. It also has 2 new chemo drugs: BCNU {carmustine} and Cisplatin {platinol} . Jason receives the DTIC and Cisplatin all 3 days, and the carmustine 1 day. It is all given IV through jason's port, over about 7 hours, for 3 days!! {which feels like forever!!!} tuesday was an extremely LONG day, with waking up at 3, to get to the airport on time, waiting for transportation, meeting with the drs, then waiting 7+ hours while Jason received his chemo, and FINALLY getting to leave the hospital at 11:30.

Wednesday started off early, we had to be at the hospital for chemo at 9...the had the MRI at 2:15ish. then back to chemo until 730 that night.

Thursday we had another early morning, our appointment to meet with the dr {oncologist} was at 8:30, where we got th e results of the MRI, which once again sucked... 5 of them are growing, 3 are stable. So we were told once again that we need to try and get into a clinical trial, so the lady in clinical studies, was beginning to search for us! after the appointment with the dr, we went up to infusion for jason to get chemo, and got done n was out of the hospital by 6! :) after chemo Jason received a new drug, Neulasta, which is used to stimulate the growth of "healthy" white blood cells in the bone marrow, since the chemo lowers all blood counts, and is given as a single injection under the skin {so it stings/burns, unlike when things are injected through the port. no feeling} the symptoms for this chemo are supposed to hit A LOT sooner than the other chemo, about half way thru the first dose, and lasts up to 5-6 weeks later! They are also worried about kidney toxicity. Jason will get blood draws once a week while we are home, so the hospital can keep an eye on his blood counts. After leaving the hospital we went to In n Out for the first time! :) {everyone is surprised by this!!}

Friday, we met with the clinical trial lady and found a trial in Twin Falls, Idaho called them up and got all of Jason's medical history, and reports sent to off to them to find out if we qualify! after meeting with her we finally got to come home! :)

the lovely suite you get when your receiving 7+ hours of chemo
jason's best friend during chemo, "betty box"
In n out

Bees game!

this post is forever overdue, but ive had no motivation lately to update the blog, so please forgive!
since we didnt get the BBQ in our backyard for Jason's birthday, KBER wanted to send us to a bees game, and hook us up with a suite, n some food! {n you cant pass up free food!}
we had a lot more fun that we had expected! we got to take 12 friends but had a couple back out at the end, so we took 11 :) after the game there was a butt load of fireworks, and a SNAP presentation! {OMG!! i hope they get paid lots}
view from our suite!
US!
the group! we had a great time, n hope that everyone else did too!

for some reason i didnt take a pic of the suite, which is odd, since im like a photo freak..but oh well..

Friday, September 3, 2010

we're home...

sad day! we got home sept 2..we departed Hawaii the 1 n had 3 different layovers!! ugh! i will NEVER do that again! but we had such an AMAZING time!! LOVED every minute of it! n definitely plan on going back!!
we flew out of Arizona the 25 bright n early, arrived in Hawaii n spent the day at the hotel, we were exhausted! the time change totally kick our butts! {they are 4 hours behind us here{utah}} Thursday we hung out at the beach, had a blast. Friday we had the rehearsal dinner for timaris wedding, then jason went to the bachelor party! Saturday was the wedding, which was gorgeous! pretty much came to the conclusion my next wedding will be on the beach! :)) sunday we went to peral harbor and then a loauo with grandpa, chris n mike. Monday the guys went fishing, and reuben {cousins hubby} caught a HUGE marlin! it was 12 feet long 600lbs!! while they were fishing us girls went shopping hung out on the beach, went on a booze cruise, pretty much just had a good time! :) tuesday we drove around the island {ohau} stopped at the valley of the temples, some truck thing to at lunch, a macadamia nut farm, a couple beaches, Giovannis shrim truck {which EVERYONE should stop at! so good!!}

the first day we went exploring, i was taking pictures, and found out my camera had DIED it would take the pic, but the pic was all white, and you can kind of see the outline, so we have NO pictures :(( but the people we went with are all pretty much amazing and are going to hook us up with photos :) probably wont be for a few weeks, when we go back to arizona, but better late than never!!

as soon as i get the photos ill post them! :)

Monday, August 23, 2010

Arizona 8-23-10

TODAY!! well we just got done with treatment :) this morning was pretty slow...our first appointment wasnt until 11:45 {we thought it was earlier} were staying with timari so we had her drop us off on her way to work...so we waited for a couple hours before actually having to do anything! When it was finally time to meet with people, jason had labs done then we had an hour to kill {so we ate lunch} we met with the dr. {not ours he isnt here mondays...but thats ok we will see him in 3 weeks.} he told us the labs looked great! {so we coudl have another treatment} We told him about the pain in jasons side, and said that we think it might be his appendix, he told us if it keeps giving him toubles to call! but if nothing too horrible happens we will be okay to wait until next time and Jason will have a full body scan, to show whats causing the pain. after that we met with our nutritionist, naturopathic dr, and our care manager.
OH!!! i guess we havent shared this with our blog stalkers! we are totally going to Hawaii! :)) timari {my cousin} is getting married, and totally hooking us up! we fly out of AZ this Wednesday {August 25} we are uber excited!! :) i think thats all i have to tell you! :))

Wednesday, August 18, 2010

kber..

so i was reading the blog {checking jasons post!} and realized i didnt do a post about what happened with the BBQ from KBER. well we didnt get it :( they said they wanted to do it for us, but it wasnt feesable for them to come all the way to logan... so we were pretty bummed!! :(( but they are going to send us to a BEES game {baseball} they are giving us a suite, and catering it! :) so were pretty excited for that! but we still wish we could have gotten the BBQ from KBER...but oh well, ya win some ya lose some...

Tuesday, August 10, 2010

Good News!

So Hope was getting tired of being the only one to write on the blog.... so I'm going to give it a shot. Just don't expect too much of me. We went back down to Arizona on the 2nd for yet another round of chemo and some scans to see how well things were going for either me or cancer. So the first morning we started out early to get my scan all done and over with then it's time to wait for the doctors... that can be a very long wait sometimes and that day they were short staffed but finally trusty Dr. Brunk shows up to check me out tells us how everyone is kind of behind then decides to go check the scan. Meanwhile the naturopathic Dr. came in and put me on another pill COQ 10 which is supposed to help my heart then after a couple of nurses stop by to ask us if we could use a bottle of water or something while we wait the Doctor returns with GREAT news... the tumors in my head had shrunk and the edema surrounding them had also gone down a bit! This is the first good news we've ever heard on my cancer.
So after the good news I still had to see the acupuncturist fella, but was slightly nervous having never been to one before. They set it up so it was supposed to relieve stress, as the guy starts stabbing my ears, between my eyes, my hands, legs and feet kind of explaining how the nerves are supposed to be connected to organs and such to help me feel better as I lay like a pin cushion. After like 45 mins. the pins we're removed and I didn't feel any different or better, oh well it was worth a shot. They also set me up to talk to the physical therapist to see if they could help me out with regaining strength. As walked in the physical therapist talked to me for like 10 minutes then decided that there was nothing she could do nor could she justify to my insurance company any need for me to be in any physical therapy.
Now we just have to head back to Arizona every 3 ish weeks so I can be juiced up again and figure out how things are looking :) hopefully only more good news!

Monday, July 26, 2010

KBER

so i know i need to update, but that has to wait!! i need to ask ALL of you to do me a favor!! Kber {the radio station here in Utah} is have a contest to have a BBQ in your backyard on July 30. We are trying to get it for Jason, July 30 is his birthday! so please get on to www.kber.com and write why Jason should win it! i would appreciate it so much! we are trying to get as many votes/reasons for him to win as we can! so please help us out!!
Thanks!