i hate not updating my blogg in forever because now i have A LOT to update. i guess ill start with the most fun since im too lazy to re-read what ive already written. ok, here we go...

so i mentioned i wished i could take my family to disneyland before i got worse. but i didnt have the money anyways. suddenly Jennifer tells me she has a friend who does fundraisers for situations like mine. so she filled a bus full of people ready to donate more money and head to a casino to loose it hahah. anyways, everyone had a blast. then i had my wonderful Hyrum ward send me some donations which i didnt expect it.then our car club did a cruise for us too. then we had random donations from friends as well. now ive also filled for the make a wish foundation for adults but i dont think i will get the dates i wanted but hey, its all donation so i guess i should be grateful either way.

on a sad note these past few weeks ive gone down hill pretty badly. i no longer have controll of my legs from my waist down. im not sure if the 3 falls previous had anything to do with it but oh well to that too. its the strangest feeling staring at your own feet and not being able to move your toes.every now and then i just move my legs manually for a bit. and i cant tell you how humiliating it is to have robert be the one to clean me up when i need to use the bathroom. i really wish there was an easier way.

now the good news. Alicia is almost one week away from her due date. shes so late she has to pop sometime. im excited to see what her baby will look like.. and thats the update

a long awaited update...

well... the chemo didnt work. i lost all my hair for nothing and my cancer had a field day and grew like crazy for 2 months. the tumor in my left hip bone fractured my hip and now im completly disabled. :( i use a walker everywhere i go. unfortunatly its putting a lot of pressure on the rest of my body. im sore all over. especially my joinr in my legs. i had someone ask me i didnt start mitotaine in the beginning, this was my reply:

the first doctor i had started me on mitotaine but it made me so sick i couldnt function and he just didnt seem to care enough to get me the right anti-nausea regime, so i found another doctor and he he started me on clinical trials. they worked for a little while then they stopped. now im on mitotain again untill another trial becomes available. only this time, ive been on so many drugs the mitotaine doesnt make me sick. lol. it does however make me super tiried. im also on a water pill for the swelling.... that makes me dizzy. i feel like im living life through a fogged mirror. and recently my pain has increased. i cant even get out of bed right now. thank goodness for laptops. or i would go crazy. i just wish i had the courage to use a bedpan at home because getting uo to go "potty" is quite painful. just LAYING here is paindul... and then my son, (whio is almost 2 and sleeps in the crib next to my bed) wakes up crying and i cant pick him up or do anything about it. this is so frustraitingl i wish this would all just go away for 24 hours. just one day is all i want...


well, i, getting groggy and its hard to focus so goodnight,,, or good morning

guess im not as lucky as i thought...

Before going to bed tonight I noticed my head was a little itchy... my hair has officially started to fall out. I knew this day was coming eventually but I honestly thought I had more time. Or the small chance that I would not loose my hair at all. As I stared down at the patch of hair in my hands, I couldn't muster a single tear. I hope this means I'm ready. I hope that the next few days will be the same. I hope I will be brave enough to see the new me. Goodbye beautiful hair... goodbye.

whats going on with me?

So. the past few weeks have been an emotional train wreck. i think i was able to hold it together up to the point when i had to have my first wig fitting. thats when i realized exactly how sick ive gotten. i think somewhere in the back of my mind i really thought it was all going to just go away with the last clinical trial. i was going to be home by christmas. and home as in Hyrum utah. in the house that im paying for still but dont get to enjoy. when the sales girl placed the wig on my head i realized im probably never going to go "home". i saw everything slip away. and its not like i looked THAT different, i still have my hair right now. (doc said it could take about 2 or 3 months to fall out so ive still got time... and MAYBE a 15% chance it wont fall out at all!!! so, for a girl who gets the slim % of all the crappy things, lets pray i get that %15 this time!) anyways, after i purchased my new hair i felt fake. i went to this class to learn to care for my hair and make-up while im on treatment. i was the only one not bald and covered in bandages. so, where do i fit in now? it was nice to talk to them though and meet others who have already gone through what i am about to face, but at the same time i felt like they were... not jealous... whats the word i want to use? i dont know. but i felt alone again. all the while, im now on crutches because my hip is to the point that meds dont take the pain away anymore. ive learned to just deal with it. which is where i feel i fail again. i cant lift my son. i cant put him in the car or take him on long walks to the park. i cant lift him in and out of a bath. or carry him to his bed when he falls asleep in my arms. after the chemo i was out for about 5 days. i lost my ability to taste. my ability to control my aggression. i felt tired and hot and swollen. i had pain. and worst of all i wasnt allowed to touch my son for 3 days. no kisses goodnight. no hugs, to snuggles. my body was so toxic i was forced to avoid the one person in this world that i wanted closest to me. i cried uncontrollably and just slept. i didnt want to do anything. and just when i was finally coming around to feeling better... tuesday rolled up and i started all over. i cant tell you how frustrating it is to feel like a prisoner in your own head. someone would laugh or make a joke and it would make me so angry and i would snap at them, but while im being Mrs. Monster Mommy, the real me inside is crying and begging that someday someone will forgive me. i wish i could just say its mind over matter but it really isnt that simple. the poisons they are pumping through my body are changing me into a person i dont ever want to be. someone ive strived my whole life to avoid. dr jeckle mr hyde crap. im hurting so many people and i want to apologize to anyone that ive offended. yesterday i hit rock bottom. i broke hard. i started to cry while they were taking my blood at the hospital and didnt stop. that mixed with no sleep and various other arguments ide had in the past few days exploded out of me. josh saw me crying i think for the first time in his life. it broke my heart to have him see me like that but he knew what i needed. he gave me a hug and a kiss and sat next to me. it helped me more than he knew. hes such a smart kid. i love him to pieces. i also took my new puppy Pippin to the shelter. ive been trying to find him a home for a while since i cant care for him while im on chemo. sadly, no one bought him so now hes at the shelter. he will go fast there though. so i had a rough day that just kept going down down down. luckly, my mom offered to watch josh so robert and i could go on a real date. we havent had a date since i can remember. usually, we go out with family, or friends or just get dollar menue. but it was nice to be out and not have to worry about kid or bills and just be there for eachother. i have been trying to work on keeping monster natalie at bay, i want to think im strong enough to keep her away forever, but sadly... im not. she will be back when i get my next round in 2 weeks. but for now, i think im back to me again. and thats whats up with me as of now. well, im off to go get groceries... lol bye!

chemotherapy blues

today i went in for my first ever chemotherapy. i was scared and depressed these past few weeks. i havent been sleeping and i have been eating anything to get my mind off the fact that im probably gonna look like voldemort soon. but, after a nice talk with the girl at the wig shop, i think i might learn to enjoy that im going to have great hair days every day. and i can invest in some adorable vintage swim caps. right? ive got my wig lineup thanks to Amber and the cancer aide society, i have my options. i think if i continue to psych myself into believing that i dont care about loosing my hair, i might make it out okay. i even decided to get some Lady GAGA wigs and a nice blue Katy perry one too. as for my first infusion...

i showed up at 7:30 am at the hospital and was finally relased at 7:30 PM. yeah, thats right. ALL DAY. the nurses were awesome. i was basically the only patient there so i was given the royal treatment. i didnt even feel the two iv's she placed in my arms. one for blood draws, one for chemo. we told jokes, and they socialized with me. My sister took the whole day off just to be with me, as well as one of my best cousin in laws ever, daniel. Robert had to leave out of town for work, so he couldnt be there. :( miss him. im glad i had people to talk to though. it made today just feel like hanging out and watching movies. i got a little nauseated, and i saw spots for a min. but other than that i felt normal. they didnt give me anything to knock me out, but i didnt need it. im so greatful for all the help ive been reciving from everyone.

lastnight my mom, Jennifer, took me out to eat with my sister. we went to Chiles. yum fajitas! then when alicia took me home, i was surprised to find daniel vacuuming my apartment and he also gave my dog a bath. the two things i knew i forgot to do and didnt want to. lol.

anyways, i hope next week goes as well as today did. sadly, i have to distance myself from josh for the next few days, and im starting to feel groggy and sick since starting this page. i can hardly keep my eyes open, so goodnight everyone.

been a while

so its been a while. heres an update. we went on major family vacation to san diego with my sister in laws family. robert got to relax a bit after all his hard work. i got news that my treatment ive been on for my cancer was no longer working. ive been removed from the study and my doctor gave me all the paperwork to apply for another study. he said my tumors on my liver grew 3times as big in 2 months. not good. i was scared and quickly signed the paperwork to start chemotherapy. i was scheduled to have a port inserted in my body so that i could start the treatment. ever since ive signed the papers though i havent felt right about it. ive decided to try a different route and ill keep you all posted with how it goes. sadly, more bad news. some of you know that we had been trying to sue the hospital for not catching my cancer, even though i had been to the hospital 7 times for severe pain in my left side. (oddly enough where a giant tumor was growing...) unfortunately, my lawyer said he cant afford to continue the case because he was doing it for free untill we won. hes not sure he can win enough to cover his losses, so basically, he dropped me. cant blame him i guess. he is sending me all my stuff back and all his notes. maybe i can find another guy who wants to pursue this. anyways, thats the quick version of whats been going on these past few weeks. i dont know whats going to happen in the coming months, but if my new treatment plan works, maybe i can be healthy enough to go home, or, i might be dying faster. i just hope its not the latter.

YAY!

it only took 2 weeks but i think im over my sickness! (i had my bishop and hubby give me a blessing... so... ) anyways. i just hope that i dont celebrate too early. hahaha.

ugh.....so sick...

so i woke up this morning at 3 am. robert took my fever. 101.5. not that big of a deal right? maybe for you healthy people. if i reach 102.0 i get to be hospitalized... again. 3 times since feb. yay. im so hot but im so cold. its probably just what my son had, but thats still not very good. curse me and my weak immune system. its bad enough i dont have a spleen. thanks doc in utah. all of this would have been a little better had you listened to me almost 4 years ago... but hey. they went to med school for a long time to make the big bucks right?... what do i know...

WARNING: BAD DAY- you know what isnt fair???

healthcare. when we were forced to move to california because we didnt have any other option, (other than just roll over and die)we HAD to drop our private insurance because it didnt cover anything outside the state of Utah. Now im stuck on crappy State insurance just so i could get on a clinical trial that probably isnt working anymore. Now, if i want to go home or go somewhere else for treatment outside of california im NOT INSURED because insurance companies wont go anywhere near me. why do they have to make this so hard? i cant keep moving every time a new clinical trial opens up. I called the Cancer center in AZ, the one i went to last year. NOW they have trials open for Adrenal cancer. and sadly, i would have to pay out of pocket to go there. my last week there cost $32,000. so, i can only assume what it would cost me now. is it really worth it anymore?? i cant keep putting this type of stress on my husband. we will never be able to afford keeping me alive it seems. i know i am probably going to sound like a baby but it really isnt fair! why is the treatment so damn expensive!? the hospitals charge 1000 times more for treatment and pills and doctors visits than they have to. there isnt even any type of assistance for people like me. im going to die and im going to be in pain the whole time. i hate this! i see all these teenagers who are whining because they dont have a car, or lots of friends, or they dont have a boyfriend or girlfriend. they think their lives are over. you know what: screw you! there are worse things. i hate to see some people throw their lives away so young. they have so much potential and they dont care! they have young healthy bodies and they SMOKE and DRINK! you want bad lungs? you want a failing liver? you can have mine. im stuck living in an apartment when i have a perfectly good home in utah. i want to go home so badly, but its getting to the point where i dont know where home is anymore... i may have family close to me here, but i miss the feeling of peace. if im going down fast i want to at least be somewhere peaceful...

sunshine

my sister cousin found out she is having a baby boy today. thats so exciting! my sister is pregnant as well so i get to enjoy 2 babies this year! i cant wait untill they get to see how fun (and difficult) life with a child is. i still cant believe im a mom. josh is a lot of work but hes worth it. yesterday was valentines day. josh and i worked together to make a few cards. he really liked painting and using stickers. i hope he has an interest in art like i do. every day is another surprise.

stupid doctors

ok, so after my blog post i was sent to the cancer center to get my radiation. right as i finished my treatment the fire alarm went off. fire department was on their way and everything. they started to evacuate everyone but i was in a wheelchair. i was the last one. i thought i was going to burn to a crisp. then this girl came out of the kitchen yelling "im sorry! its just my toast! no fire!" they evacuated us anyways. after i got out of that mess i came back to the main hospital and back to my 14th floor. as soon as i got off the elevator an automated womans voice came on the intercom along with a siren she said "level red emergency. please evactuate level 14. fire hazard. level red emergency. level 14" i looked at my driver of my wheelchair. "what the heck, didnt we just leave that?" it was a drill. i thought it was following me everywhere. lol. anyways. after that fun moment i had a doctor come in and tell me there was nothing else they could do for me. the treatment isnt working. she said she was sorry then left. after falling into a spiraling depression for a few hours my real doctor calls me and tells me that isnt true. i will be starting up my treatment again next week. i hate hospitals. they are all so stupid.

why do i have to be in pain to learn a lesson?

i think its time i updated everyone on whats going on.

last sunday the 23rd of jan i woke up with a pulled leg. this happens sometimes because i roll too fast in my sleep and my left leg has cancer tumors in my hip so about the size of golf balls so it hurts. anyways, woke with a bad leg. tried to take care of robert and josh. (robert had the flu) josh was still healthy but he was go go go. finally on i called my mom and asked her to take him. my cousins hubby matt took him to my moms. i was able to rest my leg. i tried taking tylenol. no. prescription pain killers. didnt work either. later i tried a muscle relaxant. nope. i was in a lot of pain and i am not ashamed to say i was bawling like a baby. throughout the night i wasnt getting any sleep and robert took the bed while i slept on the couch. i made a bed out there in the front room ut no matter how i tried, i was never going to get some sleep. tuesday rolled around and i felt the same. my pain was throbing and i cried anytime i had to walk to the bathroom. finally, my mom took me to the doctors to get some nice morphine. guess what... it didnt work. i went back to her house so she could watch me. i saw my son. he was crying though becase i was crying. suddenly i had a panic attack. i couldnt breath and the pain increased somehow, if it was even possible. my mom called 911 and for the first time in my crazy unhealthy life i rode in an ambulance. i got my good drugs there and for the first time in 3 days i was pain free. then they wanted to send me home. i knew the pain free was temporary...i got home and did okay through the night. the next day i went to a doctors apointemt and went over the CT scans i had a few days earlier. he said the tumors in my left leg were agitaitng my bones or something was cracking. great,just what i wanted to hear. then he admitted me to the hospital so they could figure out why i was in so much pain. after a few more labs and a lot of painful MRIs and exrays, they told me i had infeccted fluid around my right hip bone. they wanted to stick a needle down in there and pull it out. sounds like fun. so they did. hurt like hell even with the numbing meds. my doctor came in and told me my cancer is probably spreding to my right hip. dont know how long im suppose to be here now. sort of just waiting. side surprises ive had have been a nose bleed, a really bad reaction to my pnumonia vaccine, and not being able to potty because of all the meds.... whoopie! this pretty much coveres sunday to monday morning at 6 am. sigh

Happy new years... now time to get busy

since this is a new year, i wanted to write down a list of things i want to do this year. i hope to do all of them.

1. travel to a state ive never been to before.
2. plant something.
3. go to the ocean.
4. play the violin again. (kinda need to get my hands on one first.
5. finish my book
6. be cancer free

:)