day 280 - what happened to miss independence?!?

have i explained how chemoangels came into my life?

i know i have new readers and i try to stay away from continuing a story without explaining whats going on (i hope that makes sense .. my brain is feeling scrambled today hehe)

 

if you have no idea what and who chemoangels are, please go to chemoangels . com to read about the wonderful things that these volunteers do :)

i've been hooked up with chemo angels for months .. i have 2 angels, Erika and Sandy, who are never ending in their support and encouragement .. i receive cards, flowers and small gifts from them on a regular basis .. they've made it fun to go to the mailbox cause i never know what i'm going to find LOL

its been a delight .. pure delight ..

when i got out of brain surgery (for the record, i had a mild seizure on friday march 3rd, was taken by ambulance to the hospital where it was discovered that this "question mark" that had been showing up on my brain scans were now 3 brain tumors .. one (left side above my ear) had grown to 2 inches in about 2 1/2 months

what i've realized is amazing is how my wonderful friend Tracy just happened to be here at my home during my first seizure (i didn't even know what it was, i just told her that there was something wrong and to please call 911)  the 2 seizures i had at the hospital within hours after i was admitted, i was still in the emergency room .. my curtains were closed .. the door to my room was only open a few inches and my emergency button was completely out of reach (not that they would have responded in a timely manner haha) but i tried for at least 10 minutes to get anybody's attention after my seizures .. when i finally got my nurse's attention, he told me there was NO way i had a seizure .. but thats another story eh

when i had my 4th seizure, after the surgery, my physical therapist was with me .. i knew enough by then to know that something was wrong again so i told her "something is wrong" and laid down and prepared myself for another seizure .. she ran out and got my nurse (and about 5 other people) and held my hand during my seizure (which lasted about 2 minutes) i was kinda amazed afterwards that there was nothing anybody could do to stop the seizure .. they just all stood around watching, asking me questions that were impossible for me to answer .. and afterwards, everyone just kinda disappeared .. except my therapist that is (what a wonderful lady!!)  she understood how afraid i was of being left alone .. even though nobody could do anything, i didn't want to be alone if i had another seizure .. so i called my son, explained that i had another seizure and didn't want to be alone .. and she sat with me for the 40 minutes it took my son to get to the hospital !!

(and just in case anyone is wondering .. i am writing this all down because i forget sometimes what i went through .. for the longest time, i had no idea when i went into the hospital, when my surgery was .. i basically had to reconstruct the timeline of what happened when LOL  people would ask when i had brain surgery and my answer was always "i have no idea" .. it helps me remember things when i write them down :)

so .. after tests and more tests, it was decided that surgery to remove the largest tumor was the best thing for me .. i had 2 more seizures while waiting for surgery

my surgery was on tuesday march 7th and lasted (i think) for 5 hours .. Dr Jason said it went as good as it could have and there were no complications :)

my release was scheduled for friday march 10th (i think) but i had yet another seizure .. this one caught everyone off guard .. even though they are very typical (messing with my brain, the swelling .. etc) makes it very common for my brain to seize up .. i still hate them though !!  i hate them like you wouldn't believe !  i know they're mild, i'm remain conscious .. i don't thrash around or anything, i just kinda stiffen up and my arms and legs curl up to my body .. i can't talk and i am sooooooo sore afterwards .. i can't believe the amount of energy these seizures sap from me

but anyway ..

i was put on seizure alert at the hospital while my release was postponed .. i got the news sunday, march 12th that i could go home !!  ask me how scared i was !!  this is difficult to explain but i felt like i was living my life anticipating another seizure .. i was afraid to go out in public .. of course, i can't drive anymore (legally for a year after my seizure) but i wouldn't anyway because of safety reasons 

any notion i had of regaining my independence had flown out the window .. if you know me you'll realize what a difficult reality this was for me to accept .. i am still fighting it .. i don't want to dwell on this aspect, but i will admit that it has been frustrating being limited and i've tried so hard NOT to push myself too far and be aware of my physical and mental dependence .. i get frustrated because there are times that i need help and i have NO idea where to get help !!

things like rearranging my bedroom furniture .. when my mom stayed with me for 2 1/2 months (i think hehe) i had the 2 maintenance men come and move my bedroom furniture around so that i could put part of my sectional sofa and a table in here for mom .. when mom left, i wanted the furniture moved back out, so i asked my son to take move the furniture back out before i came home from the hospital

well, my son thankfully moved the furniture, but the position of the bed leaves me less than a foot to squeeze through just to get into bed .. i am getting tired of having to squeeze through !!  i called the maintenance man to try to get some help but after standing me up twice, i gave up on asking him for help

i know that if i ask my son again that i will stress out .. he and i just do things differently .. i move all the small furniture out of the way first, move all the stuff off the dressers so nothing gets broken, i've made a drawing to make sure the furniture will fit where i've planned, i take the drawers out of the dressers so that they're easier to move .. ya know, kinda organized .. (can you say anal? LOL)  my son has a tendency to throw caution and planning to the wind and usually ends up damaging something simply because he's not careful (which is OK .. i'm not faulting him really, i am just aware of how he is and i really don't want my stuff damaged!!)

i don't know why i'm going on and on about something so silly .. its just one of those things that i've wanted taken care of since i got home on the 12th and i've just about run out of patience trying to figure out who i can get to help me since i can't physically do it myself .. i try to only ask favors from people if its really important .. i don't want to be using up all my favors too soon hehe

my daughter is home for a few days :)  my son is out on a dirt bike/camping trip/memorial for a friend thing with his dad .. i didn't want to be left home alone so i asked my daughter if she could spend the weekend with me .. she rolled in around 11 pm last night after a dance at the rec center and promptly went to bed .. i find myself fighting not to go in and check on her like she's still a baby hehe

i wish i were in better spirits .. i know its easier for her when i'm positive and upbeat ..

ya know .. this is NOT what i had planned on writing about in my journal today lol  i started off wanting to thank all the special assignment chemo angels, then i was going to talk about how i (this is hard to explain) am slowly changing how i feel about accepting gifts from people .. but now i've worn myself out and its time to take my pills and eat breakfast .. i wish i would have remembered to ask my son to make me a protein shake or 2 before he left .. i really am low on energy and drop just about everything that i try to pick up !!

thanks for coming back and sharing my head noise !!