Friday, July 29, 2011

emergency room weekend


warning this is an extremely long post. congratulations if you make it to the end. sorry, i have sooo much to say!

well well well...
where would i even start? first of all, i am sorry i have completely abandoned you all. i had quite a hard time july 15th-22nd. friday the 15th was the day before a fundraiser that my aunt was putting on for me. i woke up in absolute terrible pain. so much pain that i made an appointment with my doctor and asked for an MRI to see if their had been any dramatic changes in my tumors. i also had my blood drawn and some xrays. well results came back that their had been no significant changes in any of my images and my blood work was ok as well. i was relieved of course. but i WAS a bit frustrated feeling like my body had no 'new' reason to be feeling such a dramatic difference of pain.

i knew i needed to rest up really well for the next day so i could be feeling fantastic for my fundraiser. i was going to show up no matter how much pain i was in. (or so i thought).

saturday 2am: woke up in a torturous pain. head to toe. i cant even describe the pain but i CAN tell you that i have felt a tumor removal surgery before because the surgeon only numbed my skin. and i would rather go through that again than to feel as i did saturday AND sunday. as i laid on my bathroom floor throwing up, i screamed. i howled. i punched things. slammed my head on things. said some things i shouldn't have., terrible. cant describe it.
i refused to take pain killer. why? cuz i am so stubborn. i thought i could handle it. well, i went through this whole screaming, pacing the house, throwing up 'deal' about every 45 minutes that night.
i'm trying not to make this too long but its hard to spare some of these details.

here, less details more facts.

8am: called my mom told her of my night, said i may not make it to the fundraiser for a couple more hours.
9am: still throwing up.
10am: still throwing up. start having body shakes/convulsions. more crying and screaming.
11am: trying to drink water to take my anti nausea meds.
11:01: threw up water.

meanwhile i keep getting phone calls from family and eli to see how i'm doing and if i'm feeling well enough to at least make it to the lunch/auction.

12:00 my mom calls. hears my voice and knows its serious and that i need her.
12:20 mom arrives at my house.
12:45 keep throwing up, start convulsing harder.
12:50 mom takes me to ER.

finally i had an iv in me that gave me fluids. anti nausea meds and pain killer, and they took some blood. i was there for 5 hours. i had numerous visitors. i felt very loved. after a while i felt fine. so i was released and doctors told me it was the gleevec that had made me feel so sick because my labs were fine and i had no signs of anything wrong with me.

6:45 get home.
6:50 eli makes me toast.
6:55 throw up toast.
7:00 take anti nausea pill.
7:15 fell asleep.
1:00 am woke up...and went through the exact same thing as the night before. exact.
8:00 am called mom. asked her to come over...

we tried to handle it on our own, but we very quickly came to realize that i needed to go to the ER again. must have been the laying on the shower floor throwing up while having insaine body convulsions that did it for us both.
this time in the ER the IV started a lot quicker than the day before, maybe cuz i was on the 'red' side. (more serious side of ER). i have never actually been excited for an IV. until then. that day the doctors ordered the same tests as the day before, but they also added a pelvic exam and an abdominal and chest xray. apparently i'm fine!?! dr's never really gave me a reason as to why i was going through so much that weekend. they think i was on too much gleevec for my body size. we are all still confused.

i hear that your body can reach a point where it is in so much pain that you throw up. maybe that was it? maybe it was the gleevec? i know i didn't catch a bug. eli woulda been sick too.
so anyways, i begged the doctors to keep me over that night. i was terrified to go through a 3rd night of 'hell'. but they didn't want me! i wanted to be admitted so bad.
so anyways, i went to my moms for the next few days and lets just say i dont remember much at all. i was on so many pills that it is a blur. i remember my mom feeding me muffins. i remember my lovely friend addi bringing me flowers (that i have a pic of above). its like when you try to remember a dream and you only remember little pieces. for 3 days. apparently i walked around the house in my birthday suit. parents house. at least i have numerous pills to blame it on.

it took me a full 7 days to even feel like a human again...weird stuff was goin i tell ya. worst pain i have ever felt. i have been off of the gleevec for 13 days now....and i will go back on it. pretty sure my dosage will never get up to 6 pills a day ever again. but i will reach for 4. and be proud if i make it there.

things i learned from my torturous weekend.

1) my boyfriend is so incredible. he stayed with me in the ER. tried to crack jokes to make me laugh while i was getting pumped with fluid. he fed me food while i was recovering at my moms. he did other things...that i'm embarassed to admit. i am so lucky to have a man that doesn't let my health stand in the way of his feelings for me. he deserves a gold metal.
2) when i am sick, there is no comfort like what my mom can give, her home made muffins, helping me bathe, feeding me by was amazing to have her help me feel like it was going to be ok. that i didn't have to be strong, her strength allowed me to be weak.
3) eli tried to take me to ER but i didn't let him. i will still obey my mom. apparently my mother knows best. still.
4) iv's don't hurt all that bad. i have refused iv's through all of my 30+ MRI's and asked for a butterfly needle instead. well, iv's aren't that bad.
5) my body is not normal. i need to take way better care of myself. eat healthy and its ok if i take pain pills. i need to stop allowing myself to be in agony just because i am scared of addiciton.
6) my mom makes really good muffins.
7) my mom is better than yours....just kidding...maybe.

did you make it all the way to the end??? kuddo's for you! you may be the only one. sorry for the leangth. i just had so darn much to say!!

ps how cute is my parents dog 'rudy'? i have a lot of pictures that i took of him cuddling me during my recovery, but i dont remember it at all. =(


  1. Ugh this breaks my heart!! You are the toughest person I've ever met. (And I'm sure you're tough/strong enough to avoid getting addicted, too-- relieved to hear you're going to be a little more gentle w/ yourself in the future.)


  2. I came across your blog through another NFers.

    All that stuff you went through is crazy! I was in the Gleevec trial when it was still a pilot trial and was on 800mg. Didn’t have much trouble on that dosage (I’m 5 1 and 125lb ish) and only got taken off by my home neuro, not Dr. R at IU when one of my normal meds I’ve been on caused a seizure and my home neuro wanted to be safe rather then sorry. I only found out for sure it was my other med years later because of newly published data that stated the generic version of that med released 25% of the 24hr dose in two hours.

    I did have severe edema toward the end, like 20lb weight gain just due to the edema, but I’m pretty sure that was partly due to after effects of the seizure and not just gleevec. I wish I got to take it longer then 3 months I was on it.

    Are you on zofran? they have under-your-tongue melty ones so you don’t need water to take it. My insurance only covered 8 per month, so I said forget that and went to costco and paid around $50 for the 60 8mg. One months worth lasted me me around two since I didn’t need it every day/dosage. The only downside is it tastes pretty gross, bitter strawberries. Blach. Who ever developed the drug and picked strawberries has never experienced severe nausea. I wished it was minty every time I took it.

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