Sunday, May 30, 2010

"Are you okay?"

this has been the main question asked since everything went down in December... I've always been able to say yes... and answer as if..Why wouldn't i be?! it as always bothered me to be asked, mostly because it was people who have NEVER talked to me before asking. Overall i never thought about it much...just said yes and walked away...we were watching a show the other night and a girl on it who is sick, {i cant remember what her character has but she isnt expected to live long} she was asking for time off and one of her co-workers asked if she was ok..her response "obviously not" i dont quite know why, but this struck a nerve...this is now all i think of when people ask if i am ok... i know they dont know what i am going through, and probably just asked because they really dont know what else to say... but really... my husband has cancer, he is 21 years old...was told he would be lucky to make it 10 years...and that was with the IL2 treatment...which is no longer being done..I know people want to know info, and i guess try to understand all that is going on...but if they ask they shouldn't get upset with the answer that i give them!! i try to keep polite, and i believe i do an AWESOME job at it..but some days it is very difficult! and i just want to be left alone {especially with this subject!}

I know a lot of the blog has been venting... but that was almost the main reason for it, to help me get things out of my mind and off my chest so i dont get even more stressed out by keeping it in... It amazes me how many people tell me that they read the blog, and appreciate it so much... i appreciate all those who read it! {and dont get upset because we dont call every time we go to the dr to give them an update!}

Saturday 29, Sunday 30

I went back to work...Saturday, which just about KILLED me!!! its been about 2 weeks since i worked, i havent had to wake up before 9 for over a that i believe was the hardest part, especially since i dont sleep much at all anymore, i was at the very least EXHAUSTED!! by the end of my shift... luckily i worked with amazing people, so it wasnt as bad as it could have been! ;) Jason sat at home...all day, got to sleep in and finished putting our second dresser together! :) {although they still arent put where they are going to go, and are empty!} after work we went shopping, for a few groceries, and a prescription...we thought and were hoping it was just going to be a quick trip...NOT i swear EVERYONE was at wal mart that day!!!

Sunday i worked again...ugh, my body hurts everywhere!!! i seriously need a professional massage therapist!! less than a week away from sky diving!!!! ahh!! we are so excited!! and starting to get a little nervous!! Jason has started to lose his hair... the dr told us it would probably be gone by tuesday... Which makes it all more real... he is starting to look sick, and feel a lot worse....Makes it harder to keep up a front... i have a lot more breakdowns lately... it was so much easier to deal with when he looked as healthy as could be...but not so much anymore... we try to keep as positive as we can, but some days you just have to cry...and that was tonight, he told me that he was starting to lose his hair...{he has been saying this for a couple days} i told him whatever...well he proved it to me... :(

may 24-28

well this week was a lot like the last...we went to salt lake, almost everyday.... we should have gone monday through friday, but friday Jason wasnt feeling well at all, so we stayed home.

Monday, we had radiation. it was a good day so we decided to go to Ikea, we have lived in our home for over a year and are still trying to decorate it the way we want it. we had gotten 2 dresser thingys, and a shelf unit for our home started to take the first dresser out of the box...and realized we had gotten the WRONG color!!! WTF?!?! i guess that is one upside to going down there everyday...we returned/exchanged it the next day! but we got the shelf put together and set up in the kitchen.. LOVE it!! :) it fills the empty space so well!!

Tuesday, radiation....then back to ikea to get the right color of dresser!! :) then back to logan to have dinner at Texas roadhouse for dallas' graduation!

wednesday, radiation...of course then we booked it back to logan to pick up my camer {leave it to me to forget it!!} then on to Malad for graduation

Thursday, after radiation we met with the dr...didnt have much to say...said the treatments were going well...cant tell right now if they are working, since we are not doing scans until june 14ish. Jason has been having a hard time sleeping lately {but really who hasn't?!} so he asked for something to help him sleep. He was given Ambien, which we were very nervous about since we have all heard horror stories of the drug!! i think it worked well the first night...but im not sure its doing much for him now... Jason's face has swelled up like crazy, since he didnt cover up on one of our trips to SLC, it is so swollen that it has cracked, and the photofrin, causes him to leak a liquid that looks almost identical to iodine, so he has orangey colored scabs around his lips, and his nose. Well while meeting with the dr he told jason he has herpes!! haha!!! we got a good laugh about it afterwards...but seriously?! come on doc!!! nobody there has every dealt with the chemical, so we tried to explain that he leaks iodine colored liquid, and that is why his face is so swollen...but he wasnt we just let him make an ass out of himself :) haha

Friday...we got up started getting ready to go to SLC...and jason decided he felt like crap...and did NOT want to we didnt, we stayed home... which was nice not having to drive all the way down there...but i was bored out of my mind!!! so i decorated my moms bathroom mirror, her bathroom is tropical themed, so i decorated her mirror with sand and seashells, it turned out way cute!! just waiting for her to hang it up and add the finishing touches, a starfish and a sand dollar...once she does i will add a pic!

Friday, May 21, 2010

week May 17-21

This week was a very busy one...we had to be in salt lake everyday, which SUCKS!!!! Monday Jason started radiation, he says he doesnt feel it, but he told me that when he closed his eyes he could see the waves of the radiation, it only takes about 5 minutes TOPS!!! which makes it suck even more since we end up being in the car for about 3 hours to spend 10 minutes tops at the hospital. Jason was also injected with photofrin. Since monday he has felt very sick {nausea and vomiting} We were told to keep jason out of the light since the drug is activated by light. the weather that day was crappy, very cloudy and rainy, so we didnt think too much of covering him up, also the only time really spend out was the drive home...well thats all it took. Jason's hands and face are red and swollen. He says they hurt something fierce like a major bad sunburn, his hands are about twice the size they should be, it amazes me that he can still bend his fingers and everything. altho he can no longer, well has troubles opening bottles, packages, pretty much everything.
Tuesday we just had radiation, so a 3 hour car ride to spend 10 minutes at the hospital...ugh i swear the drive gets LONGER every time!!
wednesday, we had to be at the hospital by 7 for surgery. We had to wake up by 430 so we could leave the house by 5, the weather wasnt very nice that morning either. we made it on time, we're getting really good at that! :)) but obviously drs dont have to be on time... we sat there in out tiny lil room until 915!!! before they finally took him to the OR. {when scheduling the surgery, we asked if it could be pushed back later than 7, they told us no since the anesthesiologist was hard to schedule!!! we could have slept another 2 hours!!!} the procedure only takes about 45 minutes, and everything went well, the dr told me that he removed as much of the tumor as he could, it was almost as big as it was in january. After removing the tumor he shined a light on the rest of the tumor, to activate the chemical. The dr also told me that he figured we would more than likely have to come back in about 9 months to get the tumor removed again, which is about 4 months linger than now, but still SUCKS!!! after the surgery we had to go over to Huntsman for radiation. and thankfully it only takes a few minutes so they are fine with taking jason back early so we dont have to wait around forever! i was lucky enough to have Stephanie {girl from work} keep me company while jason was getting his radiation, which took longer this time because of meeting with the dr. Thanks Stephanie!! we were supposed to go out to lunch with her, but poor jason was feeling like death! :( which is understandable, it had been a LONG day and at this time it wasnt even noon yet, so we headed home. WE hadn't even made it to the interstate and Jason was passed out. We hadnt made it through the constuction and jason was searching for something to vomit in :( lucky me, lately i have had the weakest stomach in all the world! puking over everything it seems like.. {and DONT EVEN THINK IT!!!} thank goodness theres exits like every 2 minutes so we weren't stuck with the stench for too long!
Thursday, we had radiation...but we didn't make it... we left the house and were on our way. The weather was AWFUL!! i could barely see. We got to brigham and jason told me that he didn't feel well and didn't want to go, so we turned around and came home. they will just add the missed radiation to the end of the 3 weeks so we will still get in 15 treatments.
Friday, We once again had to be at the hospital by 7 am, ugh, the same procedure that was done on wednesday was being done again. Once again they didn't take Jason to the OR until after 9! but this time it was only about 30 minutes, they were just sucking out all of the dead tissue in the bronch, and now the dr is confident that we will have at least a year before having to go back! possibly even 2 years!! He told jason that he got the base of the tumor!! yay!! :)) Jason is still feeling really crappy today, has been extremely nauseated and puking. thank goodness no blood tho!
We got amazing nurses today! :) i LOVE the nurses in the GI lab at the University hospital, they are all so nice and just amazing!! luckily as of lately we haven't gotten any crappy nurses!
I think that is all we have to update as of today...
his extremely swollen hand
not the best picture, but the tumor {1}
shining the light on the rest of the tumor {2}
clean{ish} airway {3}
where the tumor is/was
CLEAN airway!!! :))

Sunday, May 16, 2010

bucket list...

so since the news friday we have kind of been trying to think of things we want to do {before we die} its not the easiest thing to think of! ya there are so many thing that we want to do...but given the circumstances where we feel that we kinda have to decide what we REALLY want to do before one of us is gone, it makes it even harder to think of things!!! Also, considering the fact that we dont want to think of death, i believe makes it harder to think of things.

So we have tried to start our bucket list, well i have, Jason has a harder time...he is worried about finances mostly and since EVERYTHING costs so much it understandable.... i have reassured him about a million times that we will be okay, we need to just have fun and live our lives to the fullest. i have gotten out of him that he wants to go to cancun, we went to cabo san lucas for our honeymoon and LOVED it, so we have been searching lately for a trip there, but since we have already been to Mexico i kinda want to go somewhere else, like Greece, Australia, Fiji...well pretty much EVERYWHERE!!! so we are definitely having a hard time picking a place... and trying to decide what else to put on our bucket list... so if you have any ideas we would greatly appreciate them...

We are going skydiving June 5, so we will be able to scratch that off of our bucket list!! :)) which will pretty much conclude our list, since that is all that is on it right now! we are uber excited to go! im convinced i am going to pee my pants! {good thing i work at a place filled with adult diapers, so i am set!}

Saturday, May 15, 2010

lucky numbers....i think not!!

we were married 08-08-08, and when buying my dress the chinese girl told me that 8 is lucky!! :) so i was so excited starting the marriage on a good note! i always figured that 8 would be our lucky number.. :) lately i have started to change my mind, so i figured since everyone always says how 7 is a lucky number {vegas} that could be our back up! NOPE!! 7 is the amount of NEW tumors in Jasons brain...with a now total of 8 tumors in jasons brain.... its official, we have no lucky numbers....

we found out friday may 14, that Jason now has 7 new brain tumors... which we found from the MRI that they lost on tuesday!! which i now believe that girl should lose her job! but thats just me.... we were stuck at the hospital pretty much all day! our appointment was at 11, we got there on time :) had to go get labs done...which took forever, the one guy in there was freakishly slow!!! so they called in another dude... thank goodness, so we finally got done with labs around 1120, and back to the waiting room... we didnt see the dr until around 1240... UGH!!! i am NOT a patient person.... especially when we were getting test results!! but i believe they made us wait so long so they could take their time with us... our main cancer dr showed us the MRI then called in our neuro dude to decide what to do.... He told us that there was a BIG chance we would be admitted that day...thank goodness we werent....

we spent probably a good hour talking to the drs. Jason said that when the drs finally came back {after calling the neuro dude over} they were picking who had to tell us the bad news.. {i was in the potty, like always} its obvious that they all have troubles talking to us, unless its good news. When its bad {like it always is} they dont look us in the eyes while they talk to us... mostly the floor, occasionally they will look at us but only for a second. but who can blame em...not many people know what to say to us, and i can see why, we dont know what to do ourselves...or what to say, we mostly joke about everything, but we have to keep a smile on our faces! :))

we didnt get a body MRI done, so we arent exactly sure how his lungs are looking, but we cant help but wonder if there are new spots in the lungs since 7 new ones have shown up in his brain, in just one month..but we have another month to wait on that one...

we forgot to ask about the clinical trial... and obviously so did the dr, since the brain is such a huge next time we will find out about that!!

So the plan now is full brain radiation.... it will last 3 weeks, everyday monday-friday, it takes about 15-30 minutes for each dose, so we will drive down get zapped and get to come home, they told us that it will make jason tired, scalp tenderness, some people claim they can taste it or smell it, and also by the 3rd week...jason will LOSE HIS HAIR!! :(( good thing he got it donated so there isnt much left to lose!!! also some people get sick but they said over all jason should feel pretty good and be able to work during... just have to leave a little early to make it to SLC in time for our appointments. Jason got all set up for it friday {may 14} we were asked it we wanted to start that day n get another dose on saturday, but the dr didnt feel that starting friday or waiting till monday would do much of a difference, so we chose to wait until monday and try to enjoy our weekend. we also start the process of removing that tumor in the bronch, so he will be injected with the photo chemical and start radiation monday...

if full brain radiation doesnt work we will do stereotactic {radio} surgery on each tumor, like they did on the first tumor back in were hoping that full brain radiation will kill the tumors so we dont have to do the radio surgery as well...

Wednesday, May 12, 2010


Jason's treatment has been postponed...once again... so instead of starting this week with the PDT Jason will be starting next week. Which pretty much sucks, because once injected on monday {May 17} Jason will need to stay out of the sun as much as possible...and Dallas' graduation is the 24, we will more than likely be missing out on that one....

If jason goes into the sun without proper covering, such as long sleeves, pants, gloves, sunglasses, hats, he will burn, not like a regular sunburn, his skin will swell and be extremely painful, the drs claim it will be much worse than any regular sunburn. He will have to stay out of the light for 4-6 weeks... so hopefully the weather stays the we wont really miss out on too much sun!!

we had our appointment on tuesday {may 11} with the neurosurgeon, which was a complete waste of our time!! Jason had his MRI done here at the logan hospital on May 3, we had to go down to SLC for an appointment the next day, so we just took the cd with his scan on it down. Went to give it to the neurosurgeons nurse, but she was out of town, so the receptionist {who is there ALL the time} told us that she would get it scanned into the system so we would be set for our appointment the 11. Well, she LIED!!!! we drove all the way down there, to sit for about 40-45 minutes, to be told, well...we LOST your cd, so there really isnt anything we can say about your progress...which makes it very difficult to ask about surgically removing the tumor, when we dont know how it is looking.... so when we go back down on Friday may 14, we are supposed to have them page our neurosurgeon so he can come explain the latest scans. {they were resent tuesday after we left the Huntsman. MRI from the 3, and CT from ER vist the 5}

Friday, May 7, 2010

Hair cut!!!

so i was checking the blog, for comments...n to make sure all was up to date...n i realized i didnt post about our hair cuts!! :)) we donated our hair monday may 3! a girl i work with also cuts she did it for us! :) and is sending it to pantene beautiful locks. we were going to send it to locks of love UNTIL!!! we found out that locks of love doesnt donate their wigs to cancer patients...they sell them!!! but pantene donates the wigs, so were/jess is sending it there!! :))

we completely chopped off our hair!! and i got highlights...which i LOVE!!!

jason's short!! but very nice.... :))
my hair all gone!
getting all foiled up!

the outcome!! LOVE IT!!!
i look very annoyed...but it took jason like a million tries to take this pic! lol

Thursday, May 6, 2010

Thursday May 6

well we went to the Huntsman this morning for Jason's surgery, well at least we thought thats what was going to happen.... but it wasnt...they just checked out the growth in his throat, and made a game plan for next week we are doing to PDT, so we aer going to have a LONG week....
Monday-we go down so jason can be injected with the stuff to kill the tumor
Tuesday-we meet with the neurosurgeon, and hopefully make a game plan on what to do about the brain tumor, we are going to propose the idea of just going in and removing it, we are sick of all the crap it is causing!!
Wednesday-we go down and the light gets shined on the tumor in the airway to activate the chemical that was injected on monday.
Thursday-as of now this day is still open {who knows how long that will last tho!!}
Friday- MRI, appointment with main cancer dr to see how everything is looking {mostly to check growth} and removal of {hopefully dead} tumor in airway.

see...long disgusting week ahead of us... altho it isnt even close to chemo week, so we will be able to handle it with no problems... hopefully....

Wednesday May 5

>Another seizure to add to the list.... Jason was asleep on the couch, at exactly 8:07 he started to seize. he started out laying on his back on the couch and ended up on his knees with his face into the couch, where i, once he stopped seizing, had to pull him down onto the floor and roll him over to his side/back. he bit his tongue extremely bad this time, and bled all over the place!! usually he comes back to within 15 minutes of the seizure, the last one he had {april 1} he walked out to the ambulance! this one was different...he faught the entire ride up to the hospital! we had to stop about half way and get one of the firemen into to ambulance to help the 2 who were already in the back, hold jason down. {they send a firetruck when i call..} they couldnt get vitals on him, they had the IV in, went to tape it down and jason ripped it out.... he finally started coming to as soon as we pulled into the hospital parking lot... he was out for a good 40 minutes...

We have to go to the ER everytime Jason seizes to have a CT done to be sure that there is no bleeding in his brain, {that is what caused the first seizure}

This may come off as extremely strange, morbid and just awful...but i videoed this seizure, well the second half... Jason wanted to see how it was, since he is completely unconscious for it. its only the second half of the seizure so he had calmed down a lot, and also i didnt get the creepy sounds he makes in the beginning {they are probably what scare me the most...i call it his seizure breathing.} i will try to upload it here, jason put it on facebook. but WARNING!!!! this is very disturbing for some people, so if you get freaked out easily.. DONT WATCH!!! and also, i dont need any rude comments of videoing it or anything like that, jason wanted to see it, and i was on the other phone with 911 while recording.
click here for the seizure video and please keep all nasty comments to yourself, i again dont need them!!

after a few hours in the ER about 10 minutes with the dr and a mini family reunion! we got to come home, the ct showed no bleeding {thank goodness} they upped his keppra {antiseizure} and just told us to follow up with our neurosurgeon...which we do on tuesday May 11.

if you have any questions feel free to ask! :)

Jason's poor tongue :(

dr appointment Tuesday May 4

well, we met with the dr who removed the tumor from jason's airway in January, on Tuesday. we decided that it would be best to go in and remove it once again. It is about half the size as it was in January, and growing. He talked of this treatment, photodynamic therapy {PTD}

in the first step of PDT for cancer treatment, a photosensitizing agent is injected into the bloodstream. The agent is absorbed by cells all over the body but stays in cancer cells longer than it does in normal cells. Approximately 24 to 72 hours after injection , when most of the agent has left normal cells but remains in cancer cells, the tumor is exposed to light. The photosensitizer in the tumor absorbs the light and produces an active form of oxygen that destroys nearby cancer cells. In addition to directly killing cancer cells, PDT appears to shrink or destroy tumors in two other ways . The photosensitizer can damage blood vessels in the tumor, thereby preventing the cancer from receiving necessary nutrients. In addition, PDT may activate the immune systemto attack the tumor cells.

we are hoping to be able to do this, we just have to get the OK from the radiologist, which im sure we will have no problem....and hopfully it will completely kill the tumor in jason's airway. We wont be able to have it work on any other spots due to the facts that a light has be shown on the tumor to activate the chemical... but one down 6 more to go!! :) {hopefully}
So thursday is the planned day to go in and start all this :)

Tuesday, May 4, 2010

birthday weekend....

well my birthday was on saturday...n of course i had to work!!! {so did jason} but we had friday off so we improvised! :) thursday night we stayed at the anniversary inn {LOVE IT!!!} we are lucky enough to have jasons cousin work there so she hooked us up with an awesome deal! :) and we are very thankful for it! {thanks stephanie!!} it was so nice to have a wonderful relaxing evening {even tho it was like 5 minutes from our house! lol} well we stayed in "la hacienda" {the rooms are themed!!} it was amazing and HUGE!!! spanish styled room...with cheesecake and cider {eww} waiting for us, a long with chips and salsa! :)) {i took pics of the room but am having troubles uploading i will try again later}
i got an uber cute watch! {which i LOVE} and a new camera!! :) a professional type one, none of this cheap digital walmart cameras movin up in the world!!

sunday pretty well sucked {seriously} i wasnt feeling well, mostly just having an off day.... but anyways...went to work, about 10 minutes into my shift i FREAKING FALL!!!! ya right on my TAILBONE!!! it hurt soooo bad!!!! {i was showering a resident and fell in the shower :(} thankfully kimberly covered my shift and i went home! and pretty much died on the couch. after jason got off work i made him take me to the dr, {instacare, i figured the terrace would thank me since they would be paying and instacare is much cheaper than the ER} they did some x-rays, drug test {since it was work related} and came to the conclusion that it was just bruised {extremely bad!!!} and now its thursday night and still kills!! i feel for those who have broken their tailbone...i wouldnt be able to handle it!!
HUGE bathtub!!! pretty sure i spent most of my time here! :)
GIANT bed!! i had to jump to get on it lol
to the right
in front of the door
hammock when you first walk into the room...{to your left}

meeting with the radiologist....

well we met with the radiologist last week...which i strongly believe was a WASTE OF OUR TIME!!! {grrr!!} she just kept telling us how she doesnt want to do radiation to the lungs right now, its not bad enough YET!!!!

i am so SICK N TIRED of hearing that!!! now i know that they get cases that are much worse than jasons...but they need to realize from our point of view... {in december he had a 6-8% chance of beating this {n he still does}} we dont want it to get any worse, we want it taken care of NOW!!! not wait to see how it grows..{n oops we waited to long theres nothing we can do}....but they act like it magically got better..n now we can wait forever or at least a few more months for treatment... she wants to wait and see how it grows over the next few months... n i feel if she wants to know how it grows she can just get the scans that have been taken since december n watch those as much as she wants!!!

but...if radiation does become the treatment of choice, we are getting a NEW dr...we do NOT like her at all!!! and also, from our understanding if we go that route they will only zap 2 spots {theres 7 total} which confused us!!{and leaves the other 5 spots.... which we have no idea what would happen with them} treatment of radiation will take about three weeks, jason would receive a zap every day monday through friday... which would pretty much suck because its on a good day an hour n half drive for a 5 minute zapping!

but as of now that isnt much of a choice, she said that she would rather us get into a clinical trial {which main cancer dr wanted to do if that radiation didnt take} but before that...we are meeting with the dr that removed the tumor in jasons airway back in january {it is growing back!} we meet with him today {may 4} in hopes that he can go in and remove it once again....

the tumor that is growing back in jasons airway has started to cause problems again.... jason has been complaining of his chest hurting lately along with having a cough :( so im hoping that the dr can go in and remove it again {or at least most of it...he couldnt remove that whole thing in january because it has grown through the wall of the airway, so if he remove the entire thing it would cause some major problems and discomfort...}

i think thats all we got from that dr appointment...ive been slacking!! lol but if you have any questions feel free to ask!!