stressing...

so the pay checks have finally stopped coming... :( so we are extremely stressed about financial issues right now...thankfully we dont have to pay for my flight...finding that out took a lot of pressure off our shoulders....but there is still EVERYTHING else that doesnt seem to stop coming even tho theres no money to pay for it... a lot of people ask why we dont just get financial help {government}..well that ones easy... WE DONT QUALIFY!!! which i find ridiculous, were paying for cancer treatment and we dont qualify for financial assistance.

its been a while since weve been to work, which i personally think is understandable, considering all the crap with have been stuck with the past few weeks...but were going back!! well i least i am! jason says he is going to try, im sure he will be able to just fine, since most of the photofrin chemical is out of his system he is feeling much better. but with all the trips to Arizona now, and jason starting chemo not too sure how the whole working situation is going to go... so were trying to find ways of cutting back...but honestly theres nothing we can cut back, we got rid of the hummer, we got rid of TV, we have the lowest cell phone plan possible, ac is set to 78 to keep the house just a little cooler than outside, all lights are kept off, we eat at home unless someone takes us out..really there is nothing left for us to cut back. {if some one says sell the house, i will smack you. :)}

the decision!

so after talking it through with jason we have decided to go with treatment in Arizona, it is an IV form of Chemo called DTIC. we are planning on going back around July 12, the drs are confident they can complete the treatment in one day, were not sure how many treatments jason will receive, we will have to go back every 3 weeks to receive treatment, and have blood work done. We found out today that our first trip down for treatment the first day they will teach us about ports, the second day they will insert the port, then hopefully later that day do the first treatment of chemo... i think thats all i really have to say about it...if i missed something ill add later, if you have any questions feel free to ask! :)

Arizona...

well overall we are feeling pretty good about arizona... the atmosphere is just so much better than Huntsman, you can feel/tell that the people there genuinely care for the patient..us! :)) CAncer treatment centers of america, offers a little bit of everything...they care about your nutrition, comfort, pretty much you as a whole...where as Huntsman made us feel mostly like a guinea pig..wondering how many drugs they could pump into jason...i dont mean to completely bash on Huntsman, we really like our drs there, and were confident that they were going to help us...but obviously that didnt happen...well enough of that time to let you know what we did while we were down there!! :))

Wednesday-we met with our family dr, he took jasons history, did a physical exam...ask us what kind of treatments jason was open to...{everything!!} made us appointments to meet/consult with a radiologist, a pulmonogist, a physical therapist, and acupuncture :)...He also told jason to STOP taking Ibuprofen, since his first seizure was caused by his tumor bleeding, he is worried that by taking the anti-inflammatory along with his steroids...has a BIG chance of making his head bleed again! so he gave Jason a prescription for tylenol 3 {huntsman would give any pain meds} after that we met with our naturopathogist, who talked about all the "cures" we have been told about lately, she gave us all the info on them...and how none of them have been proven to cure any disease, and told us what things not to do, since their side effects are well..not worth it! after that we met with our nutritionist..{AHHH} we havent exactly been healthy lately..mcdonalds has been our BEST friend with driving back n forth to SLC... she gave us lists of "superfoods" which are supposed to help prevent cancer, also gave us lists of food to help with nausea, diarrhea, constipation, pretty much everything...she also gave us "goals" to start eating breakfast, start eating "super foods" and start going on walks...{we usually do, but since Jason hasnt been able to go out in the sun for the past little few weeks, its been a while since we have gone on a walk...so its time to start again!!} our nutritionist taught us that 40% of people who die from cancer, actually die from malnutrition... after all our appointments we went to a food show type thingy...{the cafateria there is AMAZING!! n give the caregiver...me..an awesome discount!!} we tried all sorts of healthy food, stuff i would never think of eating...but it was all really nummy! after that was done n over with timari {my cousin} came, picked us up n took us away for a few hours!! {which was very much needed!!}

Thursday- we met with our family dr early in the morning, he gave us the results from jasons blood work..all came back normal, his red blood cell count came back a little low {so jason was prescribed vitamin B to up it} after meeting with the dr, Jason had a PET scan...{he has never had one of these} it took over 2 hours...ugh! so...how those work...jason was injected with radiated sugar, which the active cancer sucks up, so they glow like crazy on the scan! while doing the PET scan, they also do a CT scan, the PET scan shows active cancer that has sucked up the radiated glucose, and the CT shows everything...after the PET scan we met with a radiation oncologist to talk about radiation to the lungs, and pretty much just a history lesson {once again} he told us that he was going to have the physicists do some math and figure out if jason could have anymore radiation, and how much... after all our appointments we went to dinner with Jasons aunt n uncle {ray n dar} :)

Friday- we met with all of our drs to hear our treatment plan...we also got the results from the PET scan, which were great :) there is one active spot in jasons lungs, and according to the results, there are no active lesions on his brain, they showed up on the CT but not the PET scan :)) we met with an oncologist to hear our treatment plan...two different forms of chemo, or keep him comfortable..which was a little discouraging, since thats what huntsman offered, well they offered one form of chemo{the pill}...i guess i was just expecting more from the hospital in AZ. after meeting with the oncologist, we met with the natropathic dr, and our nutritionist. Jason was given a prescription for melatonin, which will help him sleep and also fights the growth of melanoma!!! that would have been nice to know a while ago!!! that evening we went to dinner with aunt geneil, my first time meeting her! :) we had a great time catching up..

Saturday- we came home!! :) with no problems with our flight! thank goodness!! BUT!!! i did get sick :( i hate flying i always get motion sickness...so if anyone has suggestions i would greatly appreciate it! im up to trying everything!!

we were bombarded with the awful news of having to pay for our hotel stay while down there along with my flight, luckily we have enough family that we can stay at someones house {totally going to start MOOCHING!!! haha timari!!!} thankfully 3 days after finding out that we would have to pay for my flight they told us that they would pay for my flight since jason shouldnt be alone! :) so yay!!! :)

getting to arizona

well we left for arizona Tuesday june 22...our flight was scheduled to depart at 2pm, and of course we were late leaving the house, but made it in time! :) well we would have...if we hadnt gotten stuck behind STUPID people who acted as if they had never traveled before in their lives!!! then add kids into the mixture, i was ready to SLAP someone if we were butted one more time because the person had a child!! we had been in line for over 20 minutes!!! BUT after all that torture we made it to our gate with 10 minutes to departure! {you cant seriously think it went this smoothly?!} we got sent away to the customer service desk...where we stood in line for a good 5 minutes and then was told our plan had left, umm no its there and the gate door is still open. Well we gave your seats away...WTF??!! ummm why? apparently southwest airlines gives your seat away to standby people 10 minutes before the plain departs....BUT WE WERE IN!!! they knew we were there and ready to go...EWWW!!! we were so mad!!! after complaining for about 20 minutes and getting NOWHERE!!! they told us we would be able to take the next flight, no problems.. so the waiting began...the next flight was to depart at 430, but was an hour late due to maintenance, so we didnt end up departing from SLC until almost 6 pm!! luckily the flight there wasnt too bad, and i didnt get sick :) we arrived in Phoenix a lil after 6 their time, then we had to go searching for our luggage, since it was on the flight we should have been on!!! luckily it was easy to find, and so was our driver! :) whom picked us up in a LIMO! to drive us to the hospital, he ordered us dinner since we wouldnt make it in time to eat in the cafeteria {which has AMAZING food} he got us to the hotel gave us a small tour, then handed us off to the hospitality lady, who took us to our room {the hospital has a hotel in it!} got us all settled...then gave us a hug {lil strange?} we were exhausted so we went to bed...

exciting news...

So with hearing the crappy news from Huntsman on Monday, we had a day or two where we did nothing but bawl...mostly me, then we started looking for other options! those of you who see jason, or have seen jason lately know that he doesnt seem sick, the sickest think about him is his shiny bald head! {which is starting to grow on me!} so we refuse to believe that hospice is our only option! we have started going to a dr in tremonton that works with your energy fields n such... we have also started drinking Reliv, a nutrient filled powdery shake mix stuff {that tastes like fish food} we have heard many positive stories about it so were giving it a try. Also jasons aunt brought a hospital in arizona to our attention, {cancer treatment centers of america} so we looked into it...

after checking out their website and started chatting with a guy told him everything that was going on, and that the hospital here had told us there was nothing else they could do, he informed us that they {the hospital} is confident they have more options for us!! so we gave them all our info and they told us they would have to get in touch with our insurance to make sure they would cover the costs... and of course we had to wait a day to hear from them, since we talked to them after 5 yesterday..but we heard from them today right after we got out of a dr appointment in tremonton!! and our insurance is going to cover it! CTCA is out of network, which doesnt matter, since we have met our deductible and our out of pocket max already!! so we will just be paying the $20 copay when we go.. and another up side!! the hospital pays for the trips to arizona! so our flight, hotel AND food are all paid for!!! EVERY TIME we have to go down!! :)) We fly out Tuesday June 24, and i believe come home friday or saturday...

we are uber excited and are feeling good about this place! they do alternative treatments, so its kind of thinking outside the box! which obviously is good for us since just medical obviously hasnt worked out too well for us!

June 15

well we had an appointment with the main cancer dr yesterday, n i really wish i could say everything was good...but sadly we were bombarded with awful news once again!! Jason had scans done that morning before the dr appointment, so we had a fresh clean view of everything {which sucked!!} The spots in his brain have pretty much doubled in size, are swollen and have new visitors!!! we arent exactly sure how many brain tumors there are now, but we do know there is more than 8!! We have pretty much ran out of medical options....we were given 2 options yesterday, hospice, and a pill form of chemo. Hospice is an option to make sure that jason is comfortable while the cancer runs its course. the chemo pill, is what we chose to do yesterday, after waiting forever for the pharmacy to fill it, we were told our total {$1100, after insurance paying at least $12000, and i know its just money you cant think about it that way..but we couldnt come up with that to get the pills} so needless to say we left without the pills.... they wouldnt bill us {which would have worked out great, but they wont unless you are a patient, like for chemo} the dr told us that the chemo pill is about 10% affective on cancer in the brain, and pretty much was just an option to not overwhelm us with hospice. The chemo pill will make jason's quality of life shit {for lack of a better word} he will be extremely sick, and sleep most of the day. so after being home and talking about it some more, jason has told me he doesnt want to do the chemo, if it had a higher rate of working or even if our dr had said that he was confident it would work, he would be all for it...the dr flat out told us it wouldnt "buy"time...so as of now we are looking into "natural remedies" so if anyone has one we would love to hear it!!

while in with the dr, i am pretty sure he left at least 3 different times. You could tell he was having a hard time telling us, especially after i started crying. His new nurse really didnt even look at us while the dr was talking, she kinda just stared at the wall.

Right now we have been asked again what people can do for us...and once again WE HAVE NO IDEA WHAT WERE SUPPOSED TO BE DOING!!! so dont be offended if wont dont say anything..or ask for anything...if you want to help out it would probably be best to just tell us what your going to do, make it up on your own, dont wait for us to tell you we need something... {it probably wont happen}

And please...dont say anything to us that is going to offend or upset us, granted it takes a lot to do that, but right now we are hurting, and dont need to be upset for your nasty comments added on top of it {this isnt towards everyone!}

right now we are just trying to wrap our heads around everything and decide what it is we want to do...since neither one of us is working right now.

june 7-11

Radiation is finished!!! :)) thankfully! they gave jason a certificate and a blankie! {ugly, its camouflage} we finished wednesday, june 9 and couldn't be happier! :) driving back n forth SUCKED!!! so now we wait until August 10, to have our check up to make sure everything worked nicely...which seems like a lifetime away... Well that was pretty much all that happened that week.... pretty lame but we were pretty stoked to have radiation done and over with!!! driving back n forth was getting ridiculously expensive!! BUT thankfully to steve n kelly we didnt have to drive monday! which was amazing to be a passenger again {its been so long!!} thanks again!!

May 31- June 4 & weekend

well not much happened this week, we had radiation tuesday-friday. the most exciting thing was probably shaving jasons head {were lame!!} but we had an AWESOME weekend!! :))

Saturday june 5 we went skydiving!! and LOVED it!! we had such a blast, i would recommend it ti EVERYONE!! i was nothing like what i had expected. There was a total of 12 in our group {we tagged along with melissa from work for her bday} Only 4 can jump at a time so we had 3 different groups. I had expected to be like riding a roller coaster, the butterfly in you stomach feeling when going down the hills, but it is NOTHING like that!! it seriously feels like your floating!

We were in the 3rd group, so of course we went last! we got there a little before 11, and didnt end up jumping until after noon. i was a little nervous peed like 5 times before, and didnt eat anything because i didnt want to puke! I think the worst part about it was the plane ride! {i dont do good with plane rides ever!! and this plane was just a lil one..} the plane ride was about 20 minutes long, and of course i got sick, you think i would learn and take meds before to prevent from getting sick, but i never think of it until its too late!! but i didnt puke on my jumper! {almost did, but i didnt!!} and i DIDNT PEE!!! :)) we free fall for about 45-60 second, the parachute down for about 4-5 minutes, depending on your jumper, Robert was the first to jump and the last to land, he went all over the place!! i was glad that i didnt, we spun around a couple times and after that i was ready to puke! {but i didnt!!} the free fall definitely felt that it lasted longer than the parachuting, i LOVED the free fall so much more!when they pull the cord for the parachute, im surprised i didnt get whiplash! it was definitely rough! and Jason ended up with a big bruise under his arm :( i got a small one, nothing compared to his. everyone asks about the landing...it looked rough with people who went before us, but really wasnt that bad! you land on your butt while your jumper dude stands.

before jumping, your jumper tells you what your supposed to do when jumping out, falling/floating ;) and when you land...but my dude didnt really tell me too much, just told me to the basics, but not the same as everyone else was told...we figured he didnt go into much detail with me since he was like twice my size! Jason says he was just wearing me as a fanny pack! :)

so i did good on the jump...dry heaved a couple times, i was worried i was going to up-chuck on my dude...but i DIDNT!!! :)) but i didnt last long after landing and getting out of my lil jump suit... i waslked outside to get money for a drink and lost all control!! :( but i didnt do it while jumping so i felt pretty good! lol

me n my jumper...his fiance works at huntsman!!

jason me n kamrie!

jumpin out!

free falling!!

as the parachute is opening

me n the ninja jumper!

jason had to dress as a ninja, since he cant go out in the sun yet

time to bic it!!!

well...i know i said we weren't going to shave jason's head, but we did...we were really going to let it all fall out on its own..but he just looked to sickly... and RIDICULOUS!!! so...we shaved it! :) it was both of ours first head shaving experience, so we went all out! we didnt have any shaving cream, and no new razors, so of course we had to go buy some! it was quite the wal mart experience, we were there a lil after 9. Jason had taken his ambien about an hour or so before that...so he was as high as a kite!! {he only takes one, and it doesnt knock him out like it should!} we got the goods then went to see if there was any good movies for sale {there wasn't} he would randomly stop, stare, and start to giggle!!! i would ask him what was so funny," i dont know, it just makes me laugh." ;) we came home and got to work! and im not going to lie...my hubby can pretty much ROCK the bic'd look! :)) it looks so much better!! he doesn't look sickly, it just takes a second to get used to it!

the last of the hair...obviously not where it belongs!!

prepping for bic-age

the bic'ng begins!!

he looks cranky...thats just how he always looks..he still has his "herpes" {dumb dr}

balding....

Jason's hair starting falling out on sunday, may 30, monday he had a bald spot on the back of his head. well...much more is gone now! :(( i was asked if we shaved his head...nope...we talked about it...but decided to just let it fall out on its own... well almost its own, we were "playing" with his hair last night....i believe it will all be gone within in the next day or two... he may end up having to shave his side burns...they are thinning, but im not sure they will completely fall out, and that would just look silly!!

the beginning little bald spot...

almost all gone!! :((