lost count of my days again !!!

i think i'd like to go back to sleep for a little while ;-)

i woke up at 5 am and this just feels too early .. my rib was aching making it impossible to get back into a comfortable position so i finally just gave up and decided to start my day :(

i feel strange today .. kind of mentally shaken .. i'm not sure whats going on, i can only venture a few guesses but me thinks i'm just not looking forward to my day .. i've got my rads at 10:30 and another PET scan at 2:15 (this scan is from lower skull to mid thigh) .. the scan itself doesn't really take that long, (1 1/2 hours of "prep time" and 30 minutes of scan time) its just that i need to modify and restrict my diet before the scan to reduce the amount of carbs in my system .. i am the carb queen lol  since i am eatting small meals several times a day, for me to go without a meal for 4 hours is going to be difficult for me so i am not looking forward to it .. the ironic part is that i'm the one that requested the test !!  i told Dr Raymond (my radiation oncologist) that i would be more comfortable if i knew the status of the infected lymph nodes .. are they worse? better? no change?  just NOT knowing has been driving me nuts .. so he wrote an order for a pet scan and didn't seem to think my request was out of line thankfully :)

i've been letting my physical and speech therapy exercises slide for 2 days .. i'm just not feeling up to making an effort .. i stretch and do about half my physical exercises and i'm doing a lot of reading and writing and exercising my brain so its not like i'm completely vegging out .. i'm just tired .. way tired :)

a lot of what i'm feeling just might be emotional .. shoot, i'm crying now .. somedays certain things just get to me .. decisions i know i have to make .. the reality of what we're dealing with hits me .. there are certain decisions that i simply cannot put off and even though i try to find a "good" time to make these decisions, they're still difficult .. so i am trying not to put too much pressure on myself to make all these decisions at the same time .. its just that sometimes its easier said than done ya know

after monday if next week, they've changed my radiation time to 3:00 .. even though that is really late in the day for me (as my mom says, we turn into pumpkins that late in the day!) i have a feeling i will feel better having my mornings free to do the things that i want to do .. like call my mom .. right now my morning is just so rushed that its difficult to find a good time to call .. haha .. i just realized that i am so looking forward to the brain and rib radiation ending next week that i forgot that after the rads i start some kind of chemotherapy again which will have its own set of side effects to deal with ((rolling my eyes)) thats what happens when i take it moment by moment and forget the "big picture" lol

and its still raining and i am so ready for spring ..

today i am hoping there is time in my son's schedule to go and buy a walker for me .. it was recommended by my physical therapist so i got a prescription from Dr Raymond and then got the purchase preapproved by my insurance company .. i need to pay for the walker (its almost $200) but the supply company will bill my insurance company for me and that is one thing i won't have to deal with !!  i am still too wobbly and weak to be trying to walk on my own .. a couple of times my knees buckled and it kinda scared me so whenever i walk outside i push the wheelchair .. the walker will be easier for me to bring on my appointments since its such a chore to try to get the wheelchair in and out of the truck .. i am sure i'll have to take some time to get used to using the walker, but i think i'll be more confident walking on my own outside :)

oh !!  before i forget .. did i mention the possible side effects from the brain radiation?  hmmmm .. well, fatigue, headaches, nausea etc and quite possibly permanent hair loss (because of my dosage) .. there is also the possibility of seizures and brain swelling .. since i am already on seroids to prevent seizures, my risk is lower (thankfully cause i HATE seizures!!)

i found some interesting reading on the steroid i'm taking so i thought i'd through that in for good measure .. these are things that i didn't really know till this morning .. "Dexamethasone (Decadron) is a widely used, effective medication which controls brain swelling in and around tumours. There are a number of bothersome side effects of this drug, which include increased appetite and weight gain, roundness of the face, stomach acid indigestion, easy bruising, hyperactivity and interference of sleep." and i'm experiencing ALL of those side effects lol  the first thing my daughter mentioned to me was houw round my face had gotten lol

so i'm preparing for loss of my hair yet again .. (a side effect that can occur between 4 - 6 weeks after therapy begins) .. about half my head was shaved for the surgery to remove the tumor but the rest of my hair was about 3 inches long .. the last thing i want is my hair falling out so again i decided the best thing to do was to have my head shaved .. my son helped me with that yesterday afternoon since it stopped raining long enough to be outside for a few minutes .. so i'm bald again !!  i'm not sure how i am going to feel about being permanently bald .. most of the time, its more or less "hey, i'm happy to be alive" kinda thing .. hair or not, really doesn't make a difference ya know !!

i've noticed my appetite has been slowly changing over the past few days .. i think i'm just as hungry as before, but i am so uncordinated because of the numbness and tingling in my hands thats its become extremely difficult to do the smallest of chores .. and i've found that i actually weigh whether or not i have the energy to get up and cook .. sometimes i just don't have the energy so i think i'm eating about half of what i was a few days ago .. so i'm thinking perhaps its time i get back to have my son making me the high calorie soy shakes

i had a great day with my son yesterday !!  i've gotten into the strange routine of sleeping from 10-12 pm and then waking up at midnight for a few hours .. last night my son got home about the same time i woke up and greeted me with a meal from Chevy's Mexican !!  chicken and steak fajitas !!  and we're not talking leftovers here, we're talking a meal of my own !!  i had just had a bowl of shredded wheat so i wasn't too hungry but we sat together on my bed, i ate some of my dinner and he finished his leftovers .. i thought it was wonderful that he remembered that i told him that i was craving mexican food !!

i am relieved that i finally was able to get all my bills organized .. i still can't believe i let things slide for over 2 months .. i was so confused that there was NO way that i was capable of taking care of silly little things like paying my bills .. but it finally all came back to me, i sat down and figured out how much money i had and paid all my bills current !!!  and YES .. i took the time to write down the procedure for paying bills so if i am ever in that position again, i have instructions for either myself or my son to follow .. i couldn't even explain to him before how to pay my bills .. i use online banking for all my bills except my rent and just logging onto my computer was impossible for me .. so needless to say, i am so relieved to be caught up on the financial end of things !!

did i explain to you that my son moved into my daughters bedroom when he moved in?  we had painted her room yellow and bright orange (her favorite color) sometime last year .. all her bedding matched the paint .. and orange isn't my sons favorite color lol

while the last thing i will do is paint, i decided its time to get him some manly linens .. he wants black .. so i've picked out some linens online and need to remember to have him check out the stuff before i order it .. he's pretty excited that he's going to be getting his first down comforter !!  i think he's worth it ::big proud momma smiles::

i am sad .. for the last 20 years or so, i've been dealing with my dairy alergy (lactose doesn't bother me, its the actual dairy products) .. some of my favorite food is dairy and there are times that i actually decide that its worth getting sick over a small bowl of fresh peach icecream or perhaps a slice of cheese pizza .. i was amazed that since i got out of surgery, dairy products haven't been effecting me negatively !!  and i have been over indulging in eating dairy products and loving every single moment of it !!!  i must have dairy with every single meal now and i haven't been getting sick .. until last night :(  i am actually going to take something to try to settle my tummy down so that it isn't so uncomfortable .. but mostly i'm sad to think that this will be the end of my indulgence in dairy ::big sad eyes::

well, i guess i need to make myself something to eat .. high protein, low carb, and of course, dairy products are high on the list of approved food .. that and meat .. i'm not really thinking i want meat for breakfast .. eggs i guess will be ok .. i wish i had more energy to cook .. i'd rather be napping ;-)