Friday, March 31, 2006

day 279 - facing a fear

i was hoping to have more energy today, at least enough to write in my journal, but it doesn't appear that energy is coming soon .. i think i've taken a good half dozen cat naps (less than an hour each) today, but i'm just not feeling rested .. i canceled my speech therapy for today, just wasn't up for it

oh well

the indigestion is driving me nuts as well as the tingling and numbness in my hands and feet (which has gotten worse the past few days)  it might be because of the fatigue i'm feeling, but i feel like i've got chemo brain again .. forgetting things .. losing my train of thought so easily .. not being able to figure little stuff out .. mostly i guess i feel like i've made strides forward and this is the first time that i've had to take a step or two backwards .. and i don't much like it .. i prefer progress .. its weird but when i am forced to take a step or two back in my recovery, it scares me that the back steps arent gonna stop .. i'm so afraid that i'll just keep going back and back and not have a chance to be healthy for awhile

i really want a chance to be healthy for awhile

sorry ... i usually try to be so positive and upbeat but sometimes this stuff scares me .. i think if i let it scare me little by little instead of hitting me all at once, it isnt paralyzing .. anyway, thanks for sharing my fear with me and i promise i'll get control of my fear real soon

Thursday, March 30, 2006

day 278

i made an executive decision today and cancelled my PET scan .. after only getting a few hours sleep and experiencing extreme nausea, i realized today just wasn't a good day for a 2 hour test :)  i feel so relieved

my son is out running a few errands for me and then he's running up to his Aunt's to put in a few hours work
 
me?  i'm gonna see how good my self-control is as far as being able to rest and relax and keep the head noise to a minimum !!!  this might be a good time for me to listen to my new Joss Stone CD's that i got from my son for christmas !!
 
since i don't have to worry about the PET scan for a few weeks, i really am feeling less pressure and a whole lot relieved !!!  ::big happy smiles::

happy hour at my house for naps LOL

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 ;-)

Wednesday, March 29, 2006

sleepy day ;-)

my update today is gonna be quick (y'all can thank me later hehe)  my fingers and hands are unbelievably numb and its taking forever to type so its frustrating .. hopefully later today or tomorrow i won't find it such a chore to type

my 3rd rad treatment went off without a hitch .. i met with the radiation doc yesterday for my scheduled appointment .. i'll write about it tomorrow

even though they're saying its probably too soon to be feeling any side effects, i did sneak in 2 naps during the day yesterday .. a first for me in 5 months !!!  i love my naps !!
 
gonna eat a bit of food, got my physical therapy at 1:30 .. then hopefully nap time !!!

Tuesday, March 28, 2006

day 277 - doing the happy dance !!!



ask me .. cummon and ask me !!!

ya KNOW ya wanna ask me why i'm doing a happy dance this morning !!! LOL

'member just a few days ago i was griping and moaning cause back in april 2004 and august 2005 i had decided to work on printing out a hard copy of my journals .. seriously i was up to at least a thousand pages (mostly there were so many pages because i was printing out the comments too)

i was going on and on about how frustrated i was because during my "unconscious brain tumor time" (for lack of anything better to refer to the 2 1/2 months i was so out of it i was sleeping 20 hours a day, not eating for days on end and being too weak to even open my mail or pay my bills) .. i had misplaced my hard copy of my journal .. it is one of those things that i have on my own to do list .. to get it organized just in case i really DO decide to pursue publishing a book of sorts .. perhaps its just a pipe dream, but hey !  allow a girl to dream eh !!!! hehe

i found my copies of my journal yesterday !!!!!

i can't believe i just kind of calmed down, got in a good head space, and went straight to the 2 places where i had stored the copies .. i swear i went straight to the copies just like they were never misplaced !

last night i decided to start finishing the copies and get them organized .. i have them in 3 inch binders indexed by year and month .. these journals are so important to me for a variety of reasons and i can't begin to explain how it would effect me if i couldn't pass my journals on to my children later on down the road

so far i had printed out July 23, 2003 (the beginning) through October 29, 2004 and June 23, 2005 (day 1 after cancer diagnosis) to September 19, 2005 .. i figure i have about 200 journal entries left to print and got a healthy start last night by printing out November 1, 2004 through April 3, 2005 !!  

my son happened to come home (around midnight) while i was still working on printing out my journal .. my kids have always been aware of the fact that i have been keeping an online journal for the last almost 3 years but they've never really shown any interest in reading it .. which i am really OK with .. i don't think i could be as open if i knew my 2 children were sharing so much of my pain .. (i usually do the protective momma thingand try to shield them from pain) .. and there are times that they would be hurt because they read something in my journal before they heard it directly from me .. so i've never really encouraged them to read it, but they ARE aware of it

not only are my children aware of my journals importance in my life .. but they understand how therapeutic writing has always been for me .. they know how much my journaling friends mean to me .. i share with them each "award" or recognition i've received from different places .. the post article, the awards last year and the first year .. the fact that i can google my own name and actually have articles found .. i am still in awe that people can pick up what i'm trying to express from my heart .. never once in my wildest dreams did i ever think i'd publish my journal publicly

but i wander off track with my thoughts hehe

so while i'm printing my journal out last night i hollared into my son and asked him if he could hear me .. i read him the journal entry i had written about the April Fool's Day trick he played on me last year ..
http://journals.aol.com/his1desire/GirlsHeadNoise/entries/1121 and he surprised me by laughing out loud hehe

he told me that he was glad that i had written that down because he had forgotten about it !!  then he confessed to me that he really thought it had sounded like a good prank to pull but afterwards he felt so guilty for doing that to me .. and then it was MY turn to laugh and tell him that after pulling what he did, he DESERVED all the guilt LOL

and then i hugged him .. and i have a feeling he's going to appreciate reading my journal one day cause its filled with stories about my children that i never want to forget ::big big huge smiles::

Monday, March 27, 2006

radiation pictures



here's the latest picture (taken yesterday) of my son and his new dirt bike !!  they had just gotten back from a day of dirt bike riding in san jose .. dirt bike riding has become my son's current passion, along with working out at the gym with his dad 5 days a week (a healthy lifestyle if i do say so myself!!)  cute ain't he !! LOL



here's the first picture of me right before my first brain radiation therapy .. and also a picture of the technician taking my picture for their records .. just for the record, that "lump" on my left side is NOT the tumor .. i just have weird ribs when i'm skinny lol  the tumor is actually quite small .. and looking at my picture, i don't think i'm looking all that thin at all !!!!  the mask holds my head in place during the treatment but it also makes it so that i can't talk or open my eyes .. weird feeling !!!! :)



David took another shot of me before my first brain rads, but a bit further away to try to show the machine better .. what isn't shown is the actual part of the machine that transmits the radiation .. they hadn't moved that into place before the picture was taken .. i'm kind freaking out here cause i had NO idea what i actually looked like .. at least you can see how short my hair is now !!



this picture shows the machine set up for the radiation treatment to my left rib .. it is kinda looking like my entire left rib is wacked but its just cause i'm too skinny right now .. the actual tumor is quite small and is being "hidden" by the machine .. they outlined the tumor in blue permanent marker to help in locating the tumor during each treatment (and yes, that means i need to leave the marks on for 2 weeks hehe lucky me eh !!!)

(sorry that one picture turned out so big hehe .. i'm just too tired to go back and resize it .. lazy .. thats what i am .. pure and simple, i've become a lazy bum lol)

day 276 - brain & rib rads begin !!

i'm exhausted but i want to keep everyone updated :)  i've learned how easy it is to "get behind" in updating my journal and i never want to get to that point again .. not only to update all my friends but it really does help me recall what i've done on a certain day .. and i can use all the assistance i can get with my spotty memory lol

i got up at 6 am, and promptly started my day by paying a few bills and organizing a few important lists .. i called mom for a bit (at least i think i did hehe) and had breakfast

i tried to shave my head (since i'll be losing what hair i have left) but quickly realized that my electric razor was not going to do the trick .. so i skipped that part and took my first full body shower since the brain surgery !!!  i didn't have enough energy to scrub down, but just letting the warm water run over my head was such a delight !!  it was so odd going from daily showers to sponge baths so i'm looking forward to having the strength to take daily showers again !!

i had my first brain rads and rib rads at 10:45 this morning .. i took an ativan prior (an anti-anxiety drug) so i didn't have any feelings of claustrophobia **mucho thanks for comment left that recommended that!)

my son had arrived home after 2 am sometime so i didn't have to worry about tracking him down and waking him up for our 10:45 appointment for radiation .. and yes, it does make it easier if he spends the night here when we have an early appointment !!  david, the technician, was asking if we could move the appointment to perhaps 3 pm, he'll check the schedule tomorrow, but my son was all for that !! 

other than the technicians running about 30 minutes late and a technical difficulty with the rib radiation machine, my first treatment went off without a hitch !!  david, my tech, was even gracious enough to snag a couple of pics of me just before my treatment began so i could share this part of my journey with you !!  i'm just a bit too tired to upload them today so please be patient with me :) 

while i was in treatment, my son ran a few errands for me, which of course included a new set of clippers so i can shave my head and not have to worry about my hair falling out !!!  now i just need to work up the courage again hehe

my ex-wife-in-law, Suzan (my childrens second mother, my ex-husbands wife) came over today after the radiation therapy at my request .. even though i had the "they have no cure" talk with my daughter 2 weeks ago, i had not yet had that talk with my son .. and i asked for her help and she agreed to do what she could .. she is the most awesome woman i could hope for the mother of my children and also used to work in radiation oncology !!  i'm lucky shes a part of my life .. we're all lucky :)

so we had the "talk" .. none of us fell apart .. i think part of my son already knew they didn't have a cure for me and my miracle was going to be that i am going to live with cancer .. but now he's heard it from me .. and i told him that even though we're gonna have some hard times, its gonna be ok cause thats the way i want it to be .. and he promised that if he needed to talk to someone, anyone, that he let me know so he doesn't go falling apart on me :)  i am trying so hard to always be aware of how much of this i put on his shoulders .. but i know, with all my heart, that he's taking care of me because he WANTS to .. and sometimes he gets grumpy .. sometimes i get grumpy .. but i'm loving the hell out of my son and the man he's grown up to be .. i REFUSE to ask "how much time do i have left" because that is NOT the way i am going to live my life .. i can't see me making any really drastic changes in my life (except taking care of the putting my affairs in order) i will want to know (of course) when i get a symptom that they can't "fix" or at least make tolerable, but i can't life my life as if i've been handed a death sentence .. how depressing ya know !!  i love my life .. i will continue to live my life with an appreciation of all that i've been blessed with .. my son kinda absorbed the information and then went back to sleep .. part of me wants to check in on him, part of me is hoping that if he needs ME that he knows  i'll be there for him too

Suzan had asked me about the possibility of my son joining her son for a memorial of one of their friends who passed last year .. he was a dirt bike riding buddy and the plan was to have a 2 day camping trip with dirt bike riding as a memorial .. my son had responded that he couldn't go this weekend because i had just started my radiation .. ::ain't that sweet?!?::

so i explained to Suzan that if my daughter could spend the weekend with me that it would be more than ok for my son to take off .. its just that since seizures are a possible side effect of brain radiation, i really don't want to be left alone for the entire weekend, a least for a few weeks ..

now for a few details on my radiation therapy .. i am receiving full brain photons .. one 22 second shot from the left side and the same dosage of 22 seconds aimed at the right side of my brain .. this is to insure (ensure) that my entire brain gets hit with these photons

since my left rib tumor is superficial, they are using electrons that only have to go through skin and not into any organs which is going to cut down any possible side effects since the treatment will also be superficial ((good news !!  good news !!))

i had my physical therapy at 2 pm, and i'm still shaky from that .. i honestly don't believe that i could be experiencing the side effect of "sleepy" after only one treatment but i'll find out tomorrow during my appointment with my doctor hehe  i think i'm just plain tuckered out :)

my favorite candles in the entire world arrived from oxyfresh . com this afternoon so i've got 2 burning right now !!  they are angel food scented and just have this way of putting me into a really good head space !!  of course i can't leave the room because of the possibility of cat vs candle but even though the rain is coming down by the bucketful (we've got a big storm rolling in tonight) i am completely enjoying my day because of a few silly candles LOL !!

i'm going to finally sit and relax for the rest of my day, enjoying the latest 2 episodes of Judging Amy that are on my dv recorder .. enjoying my candles, my kitties and knowing my son is here .. at home .. where it feels like he belongs right now :)

thanks for coming back to share my head noise with me !!!
 

Sunday, March 26, 2006

day 275 - sharing a few pics

haha !! wish me luck !!  i've done worn myself out trying to figure out how to get images transfered from my camera, upload the images to my file manager (oh, where did i put that link???), and then copy the images into my journal entry .. this sure is a lot more complicated than i remember lol

so again, wish me luck cause this make take a bit :)

here are a couple of pics that my son took of a few of our cats when he arrived home a few weeks ago ..

this is a very rare shot of Mocha and Sad Eyes cuddling up together sleeping .. Mocha is NOT one to cuddle under any circumstances hehe



i'm just home from the hospital, loving that my babies have started returning home where they belong :)



my son, Nick, had been sleeping on the couch for the few weeks while my mom was still here .. Sad Eyes wanted to share his bed with him



and of course, my son (who will be turning 21 mid-April !!!)  this is how he looked straight off the plane from hawaii .. he's got a clean cut look going on now but i was loving the hawaii look hehe



and of course here is a picture of Bubba after i had Bubba groomed last weekend (which just means i had his belly and chest shaved .. with his missing long hair, he looks like he lost 10 pounds but he's a much happier camper now that he's not covered with a half dozen mats

Saturday, March 25, 2006

emotional support from Chemo Angels

last week after i was discharged from 9 days in the hospital following brain surgery, i received 3 cards and a beautiful flower arrangement from my Chemo Angels Erika and Sandy .. it brought me so much comfort to know that they had somehow found out about my surgery and they knew i was ok :)  Yea, ok, stupid me .. i've losted the email addresses for both my Angels so i can't thank them at the very least electronically sheesh (so Sandy and Erika, if you read this please resend me your email addresses ok? !!!)

yesterday i received 10 get well cards from an awesome group of special assignment Chemo Angels !!!

today i received 10 more get well cards from yet another group of special assignment Chemo Angels !!!

i tell you NOTHING compares to the feeling of winning the card lottery and getting 23 get well cards in the mail when i all i was expecting were more hospital and doctor bills (can YOU say $200,000 for 9 days ?!?!)

i am feeling like a child at christmas .. my son even commented on the number of cards i had received .. i told him its cause "i'm special" lol  and i swear thats how the cards and these ladies are making me feel !!!

i'm going to make sure and get the cards lined up and try to capture a picure of the cards .. they are beautiful and so unexpected !!  i'm loving the attention hehe  i've never received 23 cards for anything in my life !!!!!

i'm tickled pink, and kinda choked up with happy tears and i thought i'd share with my good friends :)

day 274 - one step closer to "normal"

and it brings me comfort to be closer to "normal" than before !!  a silly little thing like the pleasure of enjoying a cup of coffee .. in my previous life (hehe it feels "previous"!!!) coffee was a major part of my life .. for  ver 20 years i made fresh ground Millstone vanilla nut creme coffee .. i would enjoy perhaps 5 or 6 mugs of coffee today (hello Gilmore Girls lol)

back in january my coffee maker broke .. i had a hamilton beach coffee station that stores the brewed coffee inside the machine so there is no need for a coffee "pot" .. the coffee is heated on the sides and bottom which prevents scorching .. when my coffee maker stopped working, i was so sick that i couldn't really do much about it .. i just stopped drinking coffee .. i felt like i was dealing with so much already that it just wasn't important

my new coffee maker arrived yesterday and today i made my first pot of coffee in 2 months !!  i know its silly in its own way, part of me wonders why i'd spend $40 on a new coffee maker since there is NO way i'm going back to drinking more than one cup of coffee a day (i figure its better for me not to have so much caffeine) but being one step closer to "normal" feels so good .. its such a relief (tiny tears of joy and happiness!!)

and i'm gonna add a YIPPEE cause while its been raining all morning, the clouds have parted (at least for the moment) and we just got a flash of sunshine that instantly cheered me up hehe !!

and i also want to add a note that i appreciate all the comments about the trick in changing font sizes, but i have a laptop and touch pad instead of a mouse with a clicker and i can't seem to duplicate the trick on the touchpad :(  maybe once my bedroom furniture gets rearranged again i'll be able to set up my wireless keyboard and wireless mouse .. right now i am typing from bed cause i don't have the strength yet (and it hurts my rib too much) to sit at a desk for any period of time and i have a limited number of electrical outlets available in my room ..

i need to make a note to let Dr Ray (my radiology oncologist) know that taking one vicodin every 4 hours isn't working and i've increased it to 2 every 4 hours .. plus the morphine patch .. i just don't see the point in being in any amount of pain .. and so far, all my doctors seem to agree with me, but i still feel i should let him know that i'm going through the pills twice as fast as he intended

i appreciate all the helpful comments on helping me deal with my new bifocals !!  it makes sense that while most book reading is done glancing downward, working on the computer requires now that i tilt my head back to see out of the lower portion of my glasses which is really uncomfortable !!  i've kinda messed around with the position of the glasses while i'm on the computer and i've found if i put them really high on the bridge of my nose and hold really still, i don't need to tilt my head back to be able to see clearly .. ok, so i look really silly and i can't cough less my glasses move out of place, but give me a little credit cause its working LOL

i've been spending time trying to get organized .. since my thinking process has changed so much, i've had to learn new thought processes to compensate for the changes .. in a strange way, i am really enjoying this because i'm learning new things .. something that i've always had a passion for !!  in fact one of the main reasons i've been at my job nearly 25 years is because the position i was in allowed me to take on a multitude of responsibilities and i was constantly learning new things .. it was NEVER same stuff, different day .. and i loved it !!  i am so hoping that i can get back to work soon .. part of me feels its not going to be a major focus of mine right now, but it would bring me that much closer to being "normal" again, and that would feel good :)

speaking of back to normal (i'm going to stop using quotes for the word now hoping that its understood that it just means i'm getting back to my routine again and back to doing those little things that brought me so much comfort before !!)  like writing in my journal again !!  back in december i was getting so frustrated because i seemed to have a virus on my computer .. my router no longer worked, my wireless internet connection no longer worked and my internet explorer had been hijacked by some gambling company (all attempted links would only take me to that one gambling page) .. it was too much for me to handle .. then it became so far beyond my ability and strength simply to remember how to log on to my computer .. i was sleeping perhaps 20 hours a day .. staying awake long enough to acknowledge my mothers presence (on my good days) and then go back to sleep .. i remember days going by without being able to eat .. i remember i kept falling down when i tried to get up to use the bathroom .. and the rest of it (2 1/2 months) is a complete blur .. i don't even remember my mom leaving .. i remember her telling me it was time for her to go home and that my son was coming home .. and looking back i can't believe (especially as an accountant) that i had given no thought to the fact that i hadn't paid my bills for over 2 months and really didn't care .. thats scary .. of course, hindsight is an awesome thing but i wish i would have seen the warning signs that i had a brain tumor .. its still frightening that my previous brain scans revealed what they were calling "question marks" first on the left side, then the right side, then back to the left side .. and to go from that to 3 tumors (new news to me too cause i thought i only had 2) and one was 2 inches long in the space of only 2 months still shakes me up and makes me realize how quickly this can get out of control if i'm not monitored closely .. just as a sidenote, the remaining 2 tumors are the size of a pin head .. and supposedly i don't have "brain tumors" i have "lung cancer that has metastasized to the brain" .. sheesh .. talk about technicality !! 

anyway .. so much for the medical stuff .. if i think about it too much it can really start weighing me down .. but at least i've realized when i need to draw a line in the sand and say "stop!!" :)

back to the point i was trying to make !!  i am back to talking to my mom at least every other day on the phone :)  she too is finally getting back to her routine .. my sister Lindas daughter had been staying with Mom until last week i believe .. which i believe was such a good thing for Mom !!  there are days that i just have too much going on to be able to call my mom but there is no way i'm going to let so much time go by without contacting her .. she is still the one i can talk to about anything :)  waving to my mom just in case Nancy reads this entry to her !!  part of me wants to apologize to my mom for the way i was when she was here from december to mid march .. but i wasn't myself cause i had a brain tumor that was growing out of control .. but mom knows that i realize how hard this visit was for her .. that she came all the way here just to have me "ignore" her .. and i realize how hard it was for her but i'm thankful that i didn't have to go through it alone .. i love ya mom :)

i had a realization yesterday how important my journal is to me .. i had started printing it out several months ago (pre-cancer) and i was filing each entry in these huge black binders so that the hard copy would never be lost .. and i've misplaced all the copies i made of my journal .. i'm talking thousands of pages are gone and i have no idea where to start looking .. i want to give my journal to my kids .. i feel i couldn't have chronicled my life in a better way and i really do want to be able to share it with my children way down the line .. i am kinda freaking out about not being able to find all the copies i made of all my journals and i'm not sure how to go about getting help finding it .. i think i have the journal in 2 places, 1 is the binder and the 2nd place would be the copies i had made to read to my mom in the recorder .. i lost the recorder too !!  as much as i want to find my journal, i know i can't be stressing out about it cause i would have to rely on my son pulling my house apart from attic to the laundry room and he really wouldn't understand the importance .. ::big frustrated sigh:: so for now, i'm going to add this to my list of goals .. FIND MY COPIES OF MY JOURNALS !!!  lol

while my children are aware of my journal, they don't read it .. which i feel better about .. i wouldn't be able to share as much as i do if i knew my kids were receiving the information from reading about it than straight from their momma's mouth .. but i think reading my thoughts afterwards would be a good thing !!!

speaking of back to normal ... my daughter called last night and when i asked how she was doing, she replied "ok" .. i asked her what made her day go from good to just OK .. and she relayed a problem she was having with the way her dad had reacted to one of her decisions .. they were butting heads so to speak .. i guess its not really important WHAT they were having a battle of the wills over .. its just that it felt so good to be a "hands on" mom again, if even just for a moment .. my daughter was tearful, needing to know how to convince her dad that he needed to back off just a bit and allow her to compromise on what she was going to do last evening (family plans were conflicting with friends plans) .. after she cried her tears and vented her frustration, i just calmly explained to her that if i were her, i'd give her dad a few more moments and try calling him again asking him to compromise .. and that even if he wasn't willing to change his mind after talking to her, it wasn't because she had done something "wrong" in fact, i was so proud of her for being able to talk through her feelings and explain perfectly how she had come to her decision .. i am so proud of her for being able to put into words how she feels .. its always been something she struggled with, so emotional, taking after her father and being less than completely open .. holding in her emotions .. and i am so relieved shes learning how to express herself brilliantly .. <--- one very very proud momma !!!!

during the conversation my daughter told me that she'll be starting drivers education (on saturdays) in a few months .. talk about getting choked up lol !!  my little baby is going to be driving soon !!!  word .. don't turn around cause your babies are gonna be all growed up next time ya look !!!  and what makes it ok is that i adore the adult she is growing up to be .. which means, all in all, i (we .. me and her dad) did ok by both our kids .. we didn't screw em up so bad they couldn't function as adults .. we did ok and i'm soooooooooo OK with that !!!!!  i swear my kids are the best thing i ever "did" .. i'm so proud of them both :)

lesliehydeart reminded me in a comment about something i wanted to share .. a man (another patient) that my sister Susie and i met really early in my chemo treatment .. i believe i met him right before my first xray that showed that there was no change in my lung tumor .. his name is Chet (i got his last name from Dr James, my oncologist) and he had been living with a 2 inch lung tumor for 7 years .. i felt and immediate "bond" with Chet .. i usually don't hug people i have one conversation with but for him i definately had a connection going on that i really couldn't explain and didn't stop to question .. but i knew i met him for a reason ..

in a few hours after i was informed that there was no change in my tumor, i KNEW in a way that is more of a feeling that i didn't want to admit rather than anything else, that even though i had my tattoo picked out forme to get when i was "cancer free" that i just didn't think that was going to happen for me .. that i would be one who's miracle was that i was going to live with cancer .. like Chet .. and Chet was my miracle ..

i was having issues with believing in miracles .. not that my faith has ever been that strong, but it was becoming impossible for me to believe in miracles when none seemed to be happening for ME and it just ended up with me becoming more and more frustrating .. i kept hoping and believing that they'd find a cure and make me cancer free and with each passing test and failure of my tumor to respond to treatment .. i was at the end of my rope and just about threw my faith out the window .. till i met Chet .. and he made me realize that miracles aren't always what you expect them to be .. sometimes .. just sometimes .. (sorry tears here) god has something else in mind that you didn't want and weren't expecting .. what i do know is that i am alive .. i am recovering . i have NO idea what my future holds but i know i can control my attitude .. which is what has always kept me sane !!!  so i'm going to keep the CCKMA attitude !! (cancer can kiss my ass hehe)

(and no .. i don't want to establish a connection with Chet .. i need to believe that he is alive and kicking and keeping up the fight and if i found out otherwise, i don't think i'd handle it well at all)

i was hoping i had the day off yesterday but ended up getting an appointment at the last minute for an hour of speech therapy .. she was running about 30 minutes late and was interfering with my meal time so i wasn't happy when she arrived lol  but i got several tasks done without getting a bad headache so it turned out to be a good thing !!  its just strange doing "baby work" just to be able to practice my thinking process without becoming frustrated and overwhelmed !!  talk about having to put my ego aside hehe !!  but i'm loving the progress that i can see and feel on a daily basis !!  i am so encouraged !!!

i think i'm going to try to take a nap during my days .. it would require that i turn off my phones and possibly miss phone calls, but i have been getting up at 7:30 am and i swear i'm ready for sleep at 7 pm which is just way too early .. perhaps if i am able to sneak in an hours nap i'll be able to stay up longer .. i am surprised that while a week ago i felt that i was enduring moment by moment, struggling to cope with all these emotions .. my days seem so filled with things for me to do and i'm never bored .. never !!  i'm constantly doing either my physical exercises, organizing my life, taking care of business, working on word puzzles, writing in my journal .. EATING !! hehe  i also make sure and have "down time" where i just veg out, relax andwatch 1 hour of Gilmore Girls and 2 hours of Judging Amy (thanks mom for introducing me to both shows !!  i am going to be so sad when i run out of reruns of Judging Amy and i still can't believe they canceled such an awesome show!!)

well again, it seems like i've worked up my appetite .. i weigh a whopping 109.3 pounds again !!! 

i am nervous about starting my radiation therapy on my entire brain and left rib on monday .. i am hoping that with only 10 treatments that the side effects will be minimal .. but i confess that i still haven't come to terms with fact that i'm going to have permanent hair loss .. i know i'm going to cry and that so upsets my son .. but damn .. i'm scared !!  i try to make myself aware of the possible side effects but not to let the possibilities scare me and just deal with the reality of my own side effects but when i found out that seizures were a possible side effect of brain radiation, it just about knocked me on my butt .. 

in my best whining voice (if there IS such a thing) "but i don't wanna have cancer anymore !!"

i think i'm gonna close now .. i could probably ramble on for hours but i'm getting tired and want to call my mom before it gets too late in the day .. i think for kicks i'm going to keep track of my diet for a day just to let you guys know how much time and effort is going in to keeping me from being hungry .. perhaps i'll even improve my diet just so i don't embarass myself with the 2 krispy kreme donuts, 4 M&M peanuts and 1 mini tootsie roll that i allow myself every single day regardless of how "unhealthy" they are hehe

thanks (you all mean sooooooooo much to me) for coming back and sharing my head noise .. you're helping to keep me sane :-)

Friday, March 24, 2006

day 273

ok

my son went down and picked up my new glasses for me and they're driving me nuts !!  i am SO not used to wearing bifocals lol

the bifocals have NO line so i can't really tell where i need to look through for the "close up" vision but i am feeling like its such a small part of the actual lens that i need to tilt my head back to be able to use the close up part of the lense

most times i forget, use the long distance part of the lense and wonder why i can't see close up hehe  i can "see" this will be taking some getting used to !!

in the meantime, the new glasses are making me just a tad sick to my tummy so i'm trying to keep my reading to a minimum (at least for now) so this will probably be a short journal entry, i just need to make an honest effort to keep y'all updated as often as i can .. it broke my heart when my head was so confused that i couldn't figure out how to use AOL or to even get online .. all kinds of things got so messed up and i don't want that to happen again .. bless my sister Nancy who so generously gave up her time to keep my journaling friends updated on a regular basis .. you are a wonderful woman Nancy !!!!!

one of the benefits of having cancer is that i get to participate in being the recepient of cards and small gifts from an organization that calls themselves "chemo angels" !!  (in addition to the heartwarming gifts and cards i've received from my journaling buddys!!) i have 2 angels that send me snail mail, small gifts, gifts for my cats, gift certificates, cards at least once a week .. it was initially very strange for me to be on the receiving end of such generousity (since before cancer i was the one volunteering my time to different organizations) it required that i learn how to accept generousity from perfect strangers and i will confess that i've gotten pretty good at accepting (hopefully gracefully) gifts from my friends and chemo angels :)

it appears word got out amongst the chemo angels (i'm not sure how it works exactly) about my surgery .. (was that YOU Erika? hehehe) and i have received at least a dozen cards and small gifts from other chemo angels (they usually put the words "angel mail" so i know that the cards are coming from chemo angels .. i plan on taking a picture of the cards (IF i can remember how) to in a very small way thank the wonderful people who have decided to brighten my life (cause they have certainly succeeded!!!)  everyday is like christmas around here and i'm loving going to the mailbox and having something to open besides medical bills !!!  i wonder if those ladies know how special they make me feel ::big smiles::

speaking of medical bills .. i have GREAT medical benefits .. my out of pocket per year is limited to $2,500 plus a portion of the prescriptions and a $20 per doctor per visit copay .. its been a struggle trying to find the money to pay the $5,000 out of pocket expenses but so far no doctor has refused to accept partial payments from me .. it feels silly to only be able to pay $20 a month towards a $1,000 doctor bill, but i'm doing what i can to get the bills paid off cause i'd hate to leave these bills behind for my kids (sorry, baby tears here cause it bothers me so much) .. ANYWAY .. i've wandered off subject .. sorry ..

i spent 9 days in the hospital .. without seeing the bills from the doctors, just the hospital .. it has reached over $150,000 .. my portion (so far) is only $1,000 .. like i said, i am blessed to have excellent medical coverage but what do people do that have no coverage?  it really helps me to step back and realize how lucky i am .. i even have a case worker with the medical insurance company that has been helping me figure out my benefits and makes suggestions on services that i qualify for .. i didn't know that a wheelchair could be covered by my insurance (it was supposed to be approved BEFORE i bought it) but she said if i get a prescription from my doc and a detailed receipt that i could be reimbursed up to $100 for the $300 chair !!  where i come from $100 is $100 LOL  i'll take it :)

on my progress with speech therapy, i finished one crossword and one crisscross .. most of the time its not too difficult but then i'll get "stuck" and have to put the books aside so i don't get too frustrated !!  i can feel my reasoning and thinking skills getting better with each passing moment !!

update on physical therapy .. my endurance sucks lol  i got a small set of 3 different "exercises" leg lifts, heel and toe lifts and rotation (stretching) of my feet and ankles .. baby exercises for sure but even those silly little exercises wear me out .. i only have to do a set of 5 for 3 times a day thankfully in addition to little exercises that i do to try to encourage feeling to return to my hands and feet .. mostly just tapping on my feet and hands, stretching, rotation, and using soft touch to get my hands and feet used to having feeling in them again

update on my radiology treatments .. they have this "mask" made of this hard white mesh that they made special for me to hold my head still during ratiation .. when the mask is on (very form fitting) i can't open my eyes or mouth .. its a very uncomfortable feeling not to be able to see or speak .. when they put the mask on yesterday and told me it would take 20 minutes, i kinda freaked out a bit and made them take the mask off .. hehe .. i surprised myself but not knowing i'd react that way .. so i took a few moments and got into a better, more relaxing head space .. took a few deep breaths and started humming to myself, basically blocking out what was going on around me .. i had a few shaky moments, but all in all, i was glad to be able to control my discomfort :)

so they decided NOT to start the actual therapy yesterday, they just finished up taking the beginning x-rays of my head .. the actual treatments scheduled (10 of them so far) won't start until monday .. and YES i'm way nervous !!  but i'll deal with it !!  but that means today i have the day off from any appointments !!!  ::doing my little wobbly happy dance:: hehe  i really just want to take the day off .. maybe i'll start reading my new sidney sheldon book as long as i don't get another headache

so much for a short journal entry eh? lol  i hate it when i make a liar out of myself hehe

i have succeeded in giving myself a headache so i'm going to close for now .. i'm going to do one set of my exercises, make myself a quick breakfast and then see if i snagged any reruns for the Gilmore Girls or Judging Amy (currently my new favorite TV shows!!)

again, thanks for returning and sharing my head noise with me :)

Thursday, March 23, 2006

day 272

before i even begin, i want to know if my font is readable to y'all .. for some reason my font is so tiny i can't even read it so i just want to make sure the font is large enough for other people to read so please let me know ok??  (to me it appears to be a size 6 font but its supposed to be size 12)

oh now let me see .. where to begin ?!?! i swear starting some journal entries is so difficult, at least it gets easier as each word pours out !!

i had the visit from Ms JoJo, my home nurse and it went well .. it brings me comfort that she'll be "holding my hand" through the possible side effects of the radiation .. its sometimes confusing to know what i should or should not be concerned with and since i only see my radiology oncologist once a week, i am really appreciating the in home nursing service that my health insurance allows !!

i also had my second speech therapy session .. without fail, every single time i've ended up with a headache (i believe from the stress) .. we talk a bit and then Ms Eileen has me do word puzzles .. like find the word that doesn't fit, fill in the missing letters to find the names of states, countries, animals, etc .. oddly enough i am filled with relief when i complete a puzzle successfully .. i know they are on a very low skill level and i am still having some difficulty but every single day i am feeling like my brain is getting back to where i used to be !!  i am also really excited to have tasks, games and processes to relearn .. it feels good to be moving forward with my thinking and reasoning (perhaps because its been such slow going recovering physically) 

my new glasses have arrived and my son will be picking them up later on today !!  i am hoping it will cut down on the number of eye migraines i've been having .. my order arrived from Barnes & Noble about 10 minutes before my speech therapy appointment (talk about perfect timing hehe) so she got me started on crossword puzzles and crisscross puzzles .. the books are at child level but anything more would probably do nothing more than frustrate me (which would not be a good thing lol) and i also received a Sidney Sheldon book in large print (can you believe they only have ONE of his books in large print still in publication?!?!)  anyway, it feels good to kinda have a plan .. to be learning new hints and tricks to make my brain function a little better and to have some compensatory methods to use .. i have really learned a lot so far .. i had NO idea i'd be getting this much out of speech therapy !

physically, even though i've been regaining my weight (can you believe i'm up from 82 to 110 pounds and have just 28 pounds to go before i reach my original weight !!!) my endurance sucks huge .. a few minutes of physical exertion is all i can seem to manage and it is still really frustrating .. my fingers and feet are still numb and tingly, so i am missing any fine motor control .. i have learned to rely on scissors, knives, box cutters and my teeth lol  there are times that i have to learn patience and will set something aside until i can get help .. this being dependant on someone for a physical task is a lesson in humility for me .. but i think its a good lesson eh? :)

my daughter dropped by (with her daddy) after her counseling last night !!  it was really a wonderful surprise and i'm loving it hehe  when her dad asked if there was something he could do for me, i actually said yes (usually its difficult for me to ask for help but i am so getting better and taking people up on their generous offers !)  so he ended up walking to office depot to pick me up a few things (and oh so generously refused to allow me to reimburse him !!)

i've decided (i think) that i don't want to make major changes in my life .. without getting into too much detail that would just end up making me cry and feel sorry for myself, i am happy with the way i've led my life and really wouldn't make changes (except 2 changes) but what i'm trying to say is that i don't have this huge "to do" list, i have no major changes i feel i need to make in my personality .. i don't feel the need to rush in and make all these changes in my lifestyle .. BUT i saw this on Gilmore Girls and thought it was a good idea .. when Rory and her mom couldn't see each other because of their busy schedules, mom started writing little notes down to remind her of the things she had wanted to talk to her daughter about but couldn't because she wasn't there .. so i had my ex pick up some index cards and i've been writing little things i want to share with my kids .. i figure thats a happy medium that i can be happy with .. i don't want the pressure of feeling the need to write some important stuff that is my legacy to my children .. i figure if i haven't done something right by now, its probably too late :)  but i do want them to know how happy i am and how blessed i feel (ok, this is too emotional for me right now and i really don't want to get into it)

i have my very first of 10 radiation treatments starting today at 11:30 .. i shouldn't feel ANY side effects yet (thankfully) !!  at least i'm keeping my fingers crossed :)  and then i have my 2nd physical therapy appointment at 3 pm .. Ms Nicky wanted me to venture outside today but i kinda beat her to the punch and made 4 trips outside yesterday to the garbage cans and mailbox !!  little trips for sure, but i used my wheelchair to push along and it made me feel so much more comfortable rather than being out there on my own lol  i did really well until i got to the mailbox and then turned around in time to watch the wheelchair go sailing across the street into the parking lot ROFL  me, out there in my pj's, blocking traffic, waddling slowly across the parking lot to fetch my wheelchair hehe  i HAD to laugh at myself and quickly learned why they have brakes on the chairs hehe

i had one of the best nights sleep so far!!! i went to sleep at midnight and slept until 2 am (just when my son arrived home) so we hung out together for about an hour .. then i went back to sleep at 3:30 and slept until 7:00 !!  i tell ya, i am realizing how important getting enough sleep is .. i also need to learn to shut off my phones when i take one of my infrequent naps cause without fail the phone rings every single time i get to sneak a nap in (about once or twice a week)  its just that i find myself being able to fall asleep and i'm not prepared for taking a nap (does that make sense?)  its been so long since i've been able to fall asleep instead of feeling like i'm forcing myself to sleep .. i am happy that i can doze off now .. i love having silly little things that make my life easier :)

well its 9 am and i'm really hungry plus i want to call my mom .. my appointments started arriving about 45 minutes early yesterday and it really messed with my schedule .. the appointments (nurse and speech) really wear me out so i don't feel much like doing anything except eating and getting in some more rest .. that is probably one of the most difficult things to learn .. is when i need to stop my activities and rest .. i have always pushed myself, taking care of whatever business comes my way.. but i am learning to pace myself .. not to take on too much .. take it slow .. rest when i need to !!!  i think these changes are pretty much all good things that i should have learned a long time ago so i'm happy !!!
 
thanks for sticking around and sharing my head noise with me :)
 
sending warm hugs to all my friends and family !!!

Wednesday, March 22, 2006

day 271

even though i'm tired i thought i'd write a bit .. just to keep the ol' brain functioning and to let you know that although i'm a bit tired, i'm doing well !!  i think i'm just not getting enough sleep .. i was an 8 hr per night person and i'm getting about 5 hrs now, at best, an hour at a time .. plus i'm recovering from major surgery hehe <-- good excuse to be tired ;-)

i had the pleasure of having dinner with my son AND my daughter on monday evening !!  since both their dad and 2nd mom were out of town, my son picked her up after school and brought her over to the house !  i'd just got done preparing fettichini alfredo with leftover lobster tail and snow crab (yummy) and threw in a small salad and garlic bread .. it turned out great if i do say so myself and the kids enjoyed it !!

afterwards, my daughter did the dishes ((big smiles)) she talked to her boyfriend for about an hour (it was wonderful to hear her laugh and made sure and included me in on the conversation) .. then i got her to treat me to a hand and a foot massage and then we just hung out and chatted about all kinds of things .. mostly we just laughed !!  around 8:30 my son brought her back to her dads house where he kindly accomodated his momma and spent the night with his little sis (i really wasn't comfortable with her spending the night alone) .. i'm glad he didn't give me a hard time about hanging out with her :)

i got all my stitches out yesterday !!!  only removal of 2 of the stitches were uncomfortable, the rest were cake !!  in just a few more days i get to take a shower now and not have to worry about getting the stitches wet

my neurosurgeon, Dr Jason, patiently answered all my questions about pain management, the steriods, the laser surgery should the radiation not be successful (turns out Dr Jason's partner invented the procedure known as the "cyberknife") but he explained that was something my radiology oncologist (Dr Raymond) would perform if necessary

i have to confess that his confidence in my quick recovery gave ME some much needed confidence!! its amazing that when someone has that much confidence that its so easy to get caught up in the feelings and want to prove to them that they have every right to have that much confidence in my recovery

oh, new development .. the "fracture" in my rib isn't really a fracture, its quite possibly another tumor (thatnobody but me seems to be worried about) .. i just know that its painful and that they are going to hit it with 10 radiation treatments so hopefully its going to be taken care of soon ::in my best whiny voice:: i want to sleep like a normal person !!!!  of course radiation to my rib is going to bring on its own little set of side effects but hopefully the effects will be minimal ::keeping my fingers crossed::

this only being able to sleep for 1 hour at a time, waking up in pain, is for the birds !! hehe

yesterday my son ran to the drug store to stock up on my meds and then ran to the grocery store for me to fill my fridge and cupboards again .. even he is amazed at the amount of food i've been going through hehe

today i have an 11:00 with the in-home nurse and a 12:00 with the in-home speech therapist coming up .. other than that, i don't "need" my son until 3:00 on thursday for my first radation treatment so i "sent" him off to play .. i think its really important that he NOT feel like he's stuck in the house and that he continue to maintain his friendships

my son gives me a hard time every single time i cry but even Dr Jason says its healthier for me to release my emotions .. in a perfect world tears wouldn't be necessary but things have been tough and i told my son that i'm proud of how i'm handling things .. i don't fall apart .. i don't get hysterical .. and i do wonderfully for about 23 hours a day .. there are just times that i get frustrated and overwhelmed and he needs to learn to expect an emotional reaction from me .. perhaps if my son continues with his "no woman no cry" attitude i can have Dr Jason call him and set him straight :)

well, i've got the maintenance man here taking care of a few things around the house and its too distracting to try to write a journal entry so i'm going to get going :)

thanks so much for sharing my head noise with me .. you DO know what a comfort you all are don't ya?!?!?!

Tuesday, March 21, 2006

needing a little help

i am in dire need of a little help (from my friends of course)

:)

in case you haven't noticed my memory is kinda trashed right now and i need to ask a huge favor .. my journal was featured on the front page of the washington post on october 12, 2005 .. it was an article on blogging as therapy .. because of possible copyright violations i didn't copy the article word for word and now i can't seem to find any email with the article and i can't find the actual newspapers i had saved

i can buy the article from the Post but my computer seems to have blocked the cookie required .. did anyone manage to copy the article and be willing to share it with me?  i was bragging to Dr Jason, my neurosurgeon, about being "almost famous" and he showed interest in seeing the article and maybe even possibly reading my journal **ask me how flattered i am !!!** anyway, i can't find the article anywhere and its driving me nuts .. i've managed to misplace a lot more things but i swear all i need is help finding the washington post article (for now) lol
 
i'll owe ya huge hehe

day 270 (just a quicky!!)

i just wanted to leave a quick update ;)
 
all is well, i just slept "wrong" last night and my rib is hurting like the dickens .. i also need to rest for my speech therapy at 12:30 and then i get my stitches removed at 3 (NOT looking forward to that lol)
 
anyway, i'm just too sore and tired to write much but hopefully i'll be feeling better tomorrow so i can update you on my head noise :)

Monday, March 20, 2006

day 269

**well i've got a hammer .. and i've got a bell to ring** whoops, guess i'm getting a little carried away here hehe

but i DO have a bell to ring :)  my sister Susie brought the bell over while i was sick a few months ago .. it belonged to my grandma Madge and it is so precious to me so i asked her if i could keep it .. i am thankful she understood how this little bell could mean so much to me

i hadn't even realized my son noticed i had the bell .. but last night he surprised me by telling me that if i had an emergency during the night to ring the bell .. i had a feeling of deja vu last night and it freaked me out thinking i was going to have another seizure so i had him come in and "hold my hand" for a few minutes till that awful feeling went away .. i'm sitting here now appreciating that he didn't give me a hard time or think i was silly for being so scared .. i am so damn proud of that boy words don't do justice **big proud momma smiles**

yesterday, by far, was the most difficult day i've had so far .. i just hung on moment by moment and pretty soon it was easier to accept that i was having a hard day and i just tried to "roll with the punches" so to speak and look for positive things

i explained yesterday how i woke up in pure pain from my rib after only 4 hours sleep .. i was rummaging around and found morphine patches that i had been prescribed for the pain from the radiation treatment .. i read the pamphlet carefully (and realized that i couldn't use a heating pad and the morphine patch at the same time) and decided that i could really benefit from stronger pain medication .. its a 3 day patch .. kinda mild dose of morphine, but its enough to take the edge off the pain .. ask me how relieved i was to have the pain subside :)

i was treated to the most delicious dinner last night !!  i have been craving lobster like a mad man .. they have these commercials running for the lobsterfest at Red Lobster and i can't seem to get my mind off lobster lol  my son called yesterday afternoon where he was shopping at costco with his Aunt .. she asked me if i wanted lobster or crab (or both) !!!!!  she and my son ended up preparing a salad, lobster tail and baby zucchini and then my son came home, sautéed the zucchini and broiled the lobster tail (a HUGE tail if i do say so myself!!) he refused to let me help !!  i am still sitting here in awe of the completely generous act my ex-sister in law and my son .. we couldn't even finish the lobster and didn't even touch the snow crab legs so today my son is running to the store to get some fettichini alfredo so i can throw together the leftover lobster and the crab .. afterwards my son refused to let me help clean up and did the dishes and cleaned up the kitchen (a well done job if i do say so myself) .. anyway, i'm feeling like the biggest spoiled person right now and i'm loving it hehe  i even got him to massage my hands and feet last night (he said all i had to do was ask) !!  i'm in heaven !!

i had a change in the feeling of my hands and feet yesterday .. the closest i can come to explaining the feeling is that when your foot goes to sleep and it starts to "wake up", it can be painful .. a burning aching feeling that really hurts !!  well i was in so much discomfort yesterday i was basically worthless .. not only were my hands and feet numb, but they were burning and itching too but i hoped that was a GOOD thing and it meant that maybe, just maybe, the numbness was going away .. sure enough, today i have less numbness in my feet and hands !!  it hasn't gone away completely but i can tell its about 30% better than before !!!  **insert happy camper dance** lol

when my son got home last night i told him that i was thinking about going back to online grocery shopping again .. he looked at me and told me that it wasn't necessary because he actually enjoyed doing the grocery shopping for us !!  how sweet was that?!?!  i was trying to think of ways to lessen his responsibility for me and for now at least, he swears the responsibility isn't too much for him to shoulder .. again, ask me how proud i am to be this young mans mother !!!

this morning at 10 am i have my initial in home physical therapy treatment .. basically it will just be getting set up, finding out how much i need and how much i can tolerate .. i think i could manage about 5 minutes of exercise before i'd collapse in exhaustion !!  i can't believe how drained i've been feeling but i really do feel stronger as each day passes and i'm doing little exercises on my own, mostly just leg lifts and stretching

then at 2:30 i have my first appointment for radiation .. we're just going to do the measuring and stuff, no actual radiation but i'm nervous nonetheless .. my son is bringing me to the appointment and his presence really helps me be stronger .. he HATES it when i break down and cry so i somehow usually manage to be just a bit stronger because he's there with me :)

i got some reading done yesterday !!  i ended up with a headache and frustrated because i kept getting words wrong but i finished a few articiles in the readers digest and actually comprehended what i read !!  i can feel the changes in my ability to think and process thoughts as each day goes by .. its a huge relief to see progress cause i have a fondness for my brain lol  i happen to like my brain the way it was and can't wait for it to get as "back to normal" as it can !!!!

i feel awful for having good news that i managed to complete;y overlook and not share because i was caught up in all the commotion .. it turns out my lung tumor is just a BIT smaller than before !!!  which is actually the first really good news that i've gotten so far !!  both my oncologist and i were really surprised and it was the last thing we were expecting !!  i am relieved and gonna take this good news and make the most of it !!!

the other good news i neglected to share is that after 5 hours of brain surgery, it went as good as it could .. my neurosurgeon had explained that sometimes tumors can be "sticky" and harder to remove .. turns out my tumor wasn't connected to any brain tissue and it made the removal so much easier !! (by the way i get my stitches removed tomorrow and i'm so NOT looking forward to it lol i know its going to be uncomfortable .. i've got at least 30 stitches that need to be removed and i'm a huge baby when it comes to pain so i'm gonna make sure and pop a few vicodin before my appointment (i am taking ALL the help i can get hehe)

i have managed to get my weight up to 106 pounds !!!  **insert yet another happy dance !!**  because of the steriods i am eating about 10 meals a day .. it feels completely unnatural to have such a huge appetite, being hungry again within 10 - 20 minutes of having a full meal but thankfully i need to put the weight back on .. my ideal weight was 138 pounds and its my goal to put on as much weight and regain as much strength as i can before the possible side effect of loss of appetite from the radiation .. i made my son promise last night that he'd force me to drink 2 protein shakes a day if i lose my appetite .. he promised :)

i can't believe how quickly my brusing has gotten better !!!  when i got home from the hospital, my legs and mostly my arms were literally covered with bruises from all the IV's and injections .. the bruises are basically gone now after me expecting them to last for weeks !!!  i am wondering if it has anything to do with the mega multi-vitamin/minerals that i'm taking ::shrugging::  what i DO know is that these horse pills are so huge that i have to cut them in half and the taste like garbage LOL

well i've managed to work up an appetite (so whats new hehe) so thanks for taking the time to share my head noise .. you guys never fail to amaze me at how you've taken an interest in my life and my journey .. even though i don't really understand it, i've stopped questioning the fact that i've got the best journaling friends in the world and i simply appreciate the fact that i've got y'all in my life .. ((waving at Andi cause we shared the most awesome phone conversation yesterday !!!))

i'm gonna go eat now hehe (and pardon please my lack of spell check lol)

Sunday, March 19, 2006

just adding a quick thought

i forgot to add that even though i've been successful at quitting my addiction to cigarettes, 2 days ago i was hit with the strongest urge to far to have a smoke .. so i'm back on the nicotine patch again .. its really the first time that i've had ANY strong urge to quit and it really took me by surprise

i thought i'd add my stats from quitnet . com that was really helpful in offering advice on how to quit smoking

My Quit

My Stats:
Your Quit Date is: 
6/24/2005 6:30:00 PM
Time Smoke-Free: 267 days, 14 hours, 1 minute and 44 seconds

Cigarettes NOT smoked: 5352
Lifetime Saved 1 month, 10 days, 21 hours
Money Saved: $938.00

day 268

the groomers showed up yesterday afternoon and i tell ya Bubba is one happy camper !!  he's our only long hair cat and being indoor/outdoor its difficult to keep the mats under control .. one little thistle and its a mat waiting to happen .. when i returned home from 10 days in the hospital i realized right away that it was time to have him groomed .. he was so unhappy and uncomfortable he wasn't even acting like his usual bouncy self and had even started sleeping UNDER the bed instead of on top (what was up with that?)

he had his tummy shaved completely, his nails trimmed, ears cleaned and his first bath as an adult cat .. and his behavior has changed so much that he's taken Momma's standard sleeping place on my bed lol  he looks like he lost about 10 pounds of weight getting rid of that extra hair but he is so much happier i can't believe the difference !!!

i was happy to find a mobile service that came out on weekends .. the woman and her assistant were very pleasant to work with and i could tell immediately that they really cared about the pets they worked on .. and it didn't cost me an arm and a leg .. so if you're in the bay area of california and need mobile pet grooming service, i've got a company i can recommend

(i'm going to try to figure out how to transfer pictures from my camera to my computer a little bit later in the day) .. i'm kinda stuck in bed right now and don't have the energy to sit at my desk long enough to figure it out .. i woke up in a considerable amount of pain 2 hours ago .. i'm not sure if i was sleeping "wrong" but my rib was causing me so much pain i just couldn't stand it .. i took a couple of vicodin and i'm using a heating pad and combined the pain is tolerable .. unfortunately i have to cough and i'm not quite sure how to do this without causing myself a lot of pain lol

anyway i took a couple of "after" pictures of Bubba that i'll share as soon as i can get out of bed :)

i decided to spoil myself and buy my favorite candles online .. they are made by oxyfresh, they're soy candles (as opposed to parafin) and have the angel food scent .. i also got one of their holiday candles and some laundry detergent .. if you're into candles as much as i am. these candles are pure heaven .. even though the soy lasts twice as long as wax i burn through them really quickly .. anyway, the website is oxfresh . com and i can recommend all their household products and be confident that people will get their money's worth of product :)

even though my son technically "lives" with me, he really doesn't spend more than a couple of hours a day at the house .. he comes home, takes care of things i need done, we "hang" out for about an hour or so and then he takes off .. i am really comfortable with the arrangements because i don't feel as if he's stuck hanging around the house .. yesterday he did the grocery shopping, restaked one of the rose bush trees that had fallen over, and fed the squirrels .. come to find out he's been feeding them on a regular basis and hadn't even said anything to me !!  thats my boy !!  today he's putting in a couple of hours working for his aunt to earn "us" some spending money .. those were HIS words not mine lol

he's made sure that he'll be here tomorrow and tuesday for my doctors appointments .. and he's becoming quite an accomplished grocery shopper .. i'm rather picky about the brands of products i use and he stopped giving me a hard time about it lol

well happily the pain from my rib has all but gone away .. as much as i want to be off pain medication, i don't think there is anyway i can get through the day with my rib .. thankfully i have doctors who don't want me to suffer or be in pain

i'm going to try to catch a few more hours sleep .. wish me luck ;-)

Saturday, March 18, 2006

you all are the BEST !!!!!

if i were able to figure out how to add fancy fonts and elaborate graphics, i would .. in the meantime, please make do with my words as they come from my heart

i think i've cornered the market on being surrounded by loving, caring, supportive family and journaling friends .. y'all are THE BEST and i can't begin to explain how much you mean to me

(Yes Paul, mess with my brain and i start thinking i'm from texas with the y'alls lol)
 
i love you all .. i really do

day 267

today at 4 pm i've arranged for a mobile pet grooming service to come out and groom bubba cat .. he is our only long hair cat and at least twice a year he gets so matted that i need to shave his belly .. last year i had access to the professional heavyduty clippers at the humane society plus the help of my daughter, but this year i figured it wasn't something i was up for doing .. the first mobile service i called only charges $40 to shave his belly .. a price i couldn't refuse !  it just requires that i contain him (unhappily) in the carrier until they arrive (can't have him escaping out the back door!)

i'll be relieved when i know he's more comfortable .. he's a big scared baby but this really is best for him .. my daughter always says how happy he acts after his mats have been shaved off :)

i am irritated to no end with my oncologist ... he decided to removed the tape from my rib "to get a better look at it" and besides "the tape serves no purpose" but i disagree strongly .. the tape was making it possible for me to get comfortable during the day and at night time .. the doc wants the radiologist to take a quick look at my ribs and then i'm rushing off to miracle worker Dr Nancy to get it retaped .. i didn't get to sleep till 4 am because of the pain from my rib and i couldn't even celebrate saint patricks day with a green beer :(

my day began with my first home visit from the home care nurse .. at first i questioned how could i benefit from in home nursing visits and then Suzan (exhusbands wife) suggested that perhaps if i'd had visits from nurses that some of the issues like my anemia, dehydration etc wouldn't have gone ignored for so long .. i think she had an excellent idea :)

my first speech therapy began at 12 (another in home visit!) we talked a little, getting a little background on my medical condition, my goals .. how far i've come, how far i see myself going .. and she did some testing requiring that i read questions and find the most suitable answers .. obviously they got more difficult with each one until the last and i read that outloud and it took every ounce of brain power i had to figure out the answer (hahaha and i got it right lol)

she had me read aloud .. i kept getting the words wrong and ended up in tears of frustration .. she was very understanding and gave me a few minutes to compose myself .. it was about this time that my migrane started lol

she suggested that i begin crossword puzzles and criss cross puzzles (childrens published by Mensa) .. i'm nervous knowing its going to be difficult for me initially but at the same time i'm excited about having tools to improve my brain function .. she also suggested i start reading fiction novels again but begin with an "easy" author like sidney sheldon so i ordered one of his large print books online from barnes and noble .. the therapist suggested that i begin reading each paragraph then stop and say aloud what information i gathered from that paragraph because the words are refusing to stick in my head .. i read the words aloud and they have NO meaning .. i'm beginning to read today, starting out with short stories from readers digest (before cancer i was a very avid reader of fictional novels .. courtroom drama, anything forensic) i am excited to think that i might be enjoying reading again in the near future !!

as far as the status of the accidental garden .. i haven't put seeds in the squirrels basket for months .. not only do i lack the energy to be taking care of the squirrels but its just too cold for anything to grow !!  perhaps in a few weeks i'll have regained enough strength to start taking care of my squirrels again .. i put a corn cob up for them yesterday morning and by the afternoon they had eatten all the corn lol  it was refreshing to see the squirrels scampering around the trees again :)

well i've seemed to have worked up my appetite again .. since i didn't go to sleep till 4 am, i woke up at 7 and took my medication, managed to fall back to sleep at 8 and slept until 1 !!  that is the most sleep i've gotten since i was admitted into the hospital on June 3rd !!

thanks for checking back and listening to my ramblings :) xoxoxoxox

Friday, March 17, 2006

day 266 continued

pssst .. i'm gonna let ya in on a little secret .. but listen close cause i'm only gonna say this one time (hopefully) cause i absolutely CANNOT dwell on this news and i refuse to let it get me down .. i REFUSE to give up and let my fears consume me

i'm letting you know .. even though the last thing i want is sympathy .. the very last thing i need is sympathy .. i am letting my journaling friends know before my own children know the news .. perhaps i'm practicing on finding the right words

perhaps its best that you just absorb the news without commenting for now?  if i feel ANY sympathy coming from my friends its gonna really piss me off royally .. it hasn't really sunk in yet .. i just received the news a few hours ago and i'm falling apart just a little bit at a time

because of the brain tumors the doc has upgraded the stage of my cancer at level IV .. less than a 5% chance of living more than a year .. its time as they say to "get my affairs in order" .. please say a prayer for my children who i believe need your prayers more than i do

i am not going to focus on the fact that i'm dying .. i am going to continue my fight .. i'm not throwing in the towel .. i've started physical therapy, speech therapy .. hopefully massage therapy .. and a regimine of dietary supplements including some B vitamins, milk thistle and mushroom extract for cleaning my liver (the oncologist thinks its a waste of money) i'm getting set up for radiation treatments beginning with the measuring, a test run .. on monday .. i'm finally getting my stitches out tuesday and have my second appointment for speech therapy on wednesday .. i'm going to focus (i NEED to focus) on all positive things happening in my life .. gaining weight, gaining strength .. becoming as healthy as i can .. and toning up my muscles ..

when i feel i am ready i will begin getting my affairs in order .. i've got some research to do but i'm simply not ready to accept the fact that they cannot cure my cancer, they are going to try to extend my life as long as possible and i KNOW that the more positive things i can add to my life, the longer i am going to live .. i KNOW that as sure as i live and breathe .. so think positive people .. THINK POSITIVE !!! please ?

its not that i'm refusing to accept the facts .. i just need to do it a little bit at a time cause its hard ..

i wanted so bad to have a drink (my first in probably 4 months) but the doc said i needed someone here to hold my hand cause i'd risk having a seizure .. i decided it wasn't worth it

it was great seeing my oncologist again .. he and i have a pretty unique relationship .. we've gone way beyond mild flirting and i have a really good time during my appointments .. we take care of business and then have a few laughs .. what more could i ask for?!?!?!  i go back to see him after my radiation is complete and we'll strike up a plan E to see what we can do to extend my life as long as possible .. i feel as if i am surrounded by a very special caring team of physicians .. my radiology oncologist, my oncologist, my neurosurgeon, my home care nurse, my speech therapist, my chiropractor and my health insurance case worker .. i feel they are all fighting FOR me .. i am receiving a great deal of comfort from each one of these extemely special people who make ME feel very special and worth fighting for .. i have a very special relationship with each one of my physicians that i treasure

i guess thats all the news i have for now .. remember .. not a word about my little "secret" for now ok?  focus on the positive !!!!!

tomorrow, i'll fill y'all in on my first speech therapy .. and how i got so stressed out i got a migrane lol .. i was exhausted by the time it was over !!  who'd of thunk i'd be tired from using my brain eh !!! hehe

taking a big deep breath .. and smiling softly
(i hate being the bearer of "not good" news so lets just forget i said anything please?)

day 266

today i am going to sing high praises for a woman that i trust with my entire wellbeing

my chiropractor, Dr Nancy (waving hello !!!) 

i have been seeing Dr Nancy for about 20 years for a variety of ailments .. mostly headaches from having a very crooked spine .. i've learned that i can trust her to "fix" just about anything that ails me .. she knows my body better than i do .. to top that off, this woman has so generously decided to treat me (no fee) for the next year ..

i have been extremely uncomfortable because of one of my ribs on the left side .. out of sheer frustration and pain i ended up calling her at 11 o'clock at night trying to get an appointment the next day .. i just couldn't see suffering any longer .. i have NO idea what i did to cause an injury but it hurts like hell .. turns out i have a broken rib .. nothing could be done except to tape the rib .. it really does ease the discomfort that i'll be dealing with for about 6 weeks or so but mostly i'm dying to find out WHAT i did to cause this injury !!  it hurt like crazy in the hospital but with all that was going on, i felt like a baby for being uncomfortable because of one of my ribs .. today i coughed .. and ended up making it worse lol  i have realized that the pain pills i'm taking are half for the headaches and incisional pain and half because of my rib

i can't wait for the pain to diminish !!

my new glasses won't be ready for about a week (big pouting lips) .. i am so excited about being able to see clearly .. being able to read is something i've enjoyed and i've basically stopped all recreational reading since my glasses stopped working .. i am so excited i can't begin to describe how i feel (but needless to say i'll be doing a happy dance when my glasses arrive!)  i need bifocals for the first time in my life .. before my prescription was for reading only and now i need long distance and closeup vision correction .. i'm getting old hehe what can i say :)

today i have a day full of appointments .. the most important is my oncologist at 4:10 .. i'm a tad nervous but mostly i am anxious to begin my fight again .. i refuse to sit by quietly and let this cancer eat me .. i'm back to living on my attitude and it feels so damned good !!!!!  i have pulled myself out of this funk i was under and it feels so good to laugh and smile again and to mean it .. its not that the fears have gone away but i refuse to let my fears get the best of me or take over my emotions .. even my daughter says i sound more and more like myself .. i consider myself blessed by being surrounded by loving caring family and friends

i gained 1/2 a pound lol  i weigh 104 pounds now and with the help of my new physical therapist, i'll be turning some of it into muscle .. i have a feeling it will be slow going .. i can't believe how a mere 10 days in a hospital bed can wipe me out .. well i guess i'm also recovering from the stuff that was going on before the surgery .. turns out i had a lot going on, anemia, high blood sugar, electrolytes out of whack, dehydration, low potassium level .. and those are just the things i can remember they told me were wrong !! no wonder i wasn't feeling well lol

i am thinking about calling the hospital and letting them know i have a few complaints about the level of service i received .. not that anything major happened, but a couple of things bothered me about the way i was treated .. when i was in the emergency room i had a seizure and was unable to get anyones attention .. it was so frustrating to be conscious but unable to talk or move .. when the seizure was over i literally screamed for help .. i told the nurse i had a seizure and he had the audicity to tell me "NO, you didn't" .. he was convinced that i was wrong and that made me so angry .. i finally got ahold of a doctor and explained what had happened and they confirmed that i had a seizure .. i looked at the nurse and i said "I told you i had a seizure" and he has the nerve to say "i know you did"

that was just so wrong ..

2 days after my surgery my neurosurgeon, Dr Jason, decided i was doing remarkably well and decided to release me .. and then i had another seizure .. this one lasted 2 minutes .. i am consious but can't talk and get all curled up .. it ain't pretty .. well this seizure completely took them by surprise and ended up postponing my release for another 2 days ..

in the meantime the hospital had me on what they call seizure alert .. i was concerned because one afternoon i hit my nurse call button and it took them 40 minutes to respond (i think i was calling for pain medication) .. it made me realize that IF i had another seizure i'd be going through it alone because i couldn't count on the nurses to respond to me promptly ..

i think these 2 instances are worth making changes .. i'm not convinced that the hospital will really do anything because of my complaints but i feel its worth taking the chance on improving the level of service .. maybe some other patient can benefit if i take the time to let them know they need to make changes :)

well now i've done worn myself out again hehe  i am sitting in bed comfortably (as long as i don't cough or move) and i'm surrounded by all my kittys .. Mocha, Sad Eyes, Momma and Bubba .. they are all sound asleep and i'm loving it !!  i need to arrange for a mobile pet grooming service so that Bubba can be groomed .. he is the only long hair cat i have and he has a mass of mats that need to be shaved off (i shave his belly 2 times a year) and it really does make him happier .. it really isn't "pretty" but he's got to be so uncomfortable .. normally i do the grooming myself but it takes 2 people and i'm just not up to it right now so i'm going to make a few calls this morning to find out if i can find a mobile grooming service

thanks for listening to my rambling !!!

Thursday, March 16, 2006

day 265

::sigh::

i just got done reading about half the posts to my sisters group (
http://health.groups.yahoo.com/group/updateonpam/message) where she so kindly kept you updated on my condition .. then i got to the post where i was swept off to the hospital and they discovered i had 2 brain tumors

i kinda got too choked up to continue reading anymore .. i'd say hands down it has got to be the scariest thing i've had to deal with thus far in my journey .. looking back i can see where i should have known something was wrong .. all the symptoms .. i can only pray that the surgery and upcoming radiation "fix" whats wrong with my brain

this is so difficult to write about .. scared shitless .. thats what i am lol

so, change in subjects ..

my new glasses will be arriving in about a week !!  my adventure went smoothly .. my vision isn't as bad as all that, about 20/25 .. but its enough to make it extremely difficult to read without a magnifying glass .. my son and i had a good time picking out my new frames (i lead a sheltered life and get my fun where i can) hehehe

my ex-husbands wife, Suzan, has been a great help to me .. she worked in oncology for a few years and has agreed to take me to my appointment with the oncologist on friday afternoon .. since the original lung cancer didn't respond to the radiation and previous chemo, its time for plan D

i had hoped it wouldn't boil down to me being some guinea pig, but i think thats just whats going to happen unless they've come up with some miracle chemotherapy in the past few months ..

i have a busy day scheduled tomorrow .. a chiropractors appointment at 11 am; getting signed up with a home health care nurse who will visit me once a week at 12:30; physical therapy starts at 3 pm and the oncologist at 4:10 .. i'm trying to get the chiropractors appointment moved to today but its difficult since i have to rely on my son for a ride and he is still on hawaii time (sleeps until 2 pm) lol

i am so proud of the progress i've made so far .. you'd never know i underwent major brain surgery less than a week ago (i swear i can't figure out what happened on what day .. the days are kinda messed up lately) hehe

the doc has me on a prescription to prevent additional seizures, a prescription for pepcid (to protect my tummy) a steriod to control the swelling and vicodin .. the pain is mostly tolerable .. it waivers between incisional discomfort and headaches .. the headaches are the most difficult to tolerate .. it might be my imagination but they seem to get to me mostly at night when i'm trying to get comfortable .. i ended up popping 4 vicodin last night before it had an effect on the pain .. oh, i'm also on sleeping pills (restoril) .. hehe .. i have NO idea if anyone is interested in the drugs that i'm taking LOL 

i've gained a pound !!  103.5 pounds :)  the doc says the steroid dexamethasone, will effect my mood and my appetite .. i swear i must eat 8 meals a day .. its a wonder i haven't gained more weight .. last night i had a craving for kryspy kreme donuts (i had my son pick up a dozen donuts) and ended up nuking 3 glazed donuts hehe 

i almost feel good enough to start working again .. i am relieved that my head has cleared enough to be able to figure out what i'm supposed to be doing (i'm an accountant and have totally missed the year end closing on about 40 sets of books) .. i have NO idea why my employer has been as generous .. i guess 24 years of loyalty counts for something .. i am so relieved that a paycheck isn't something i have to worry about .. they are paying me even though i haven't done any work for a few months .. i am so grateful to them, they have no idea

i have a stupid question .. does anybody know if my hands and feet were numb before ?  as stupid as it sounds, i can't figure out if this is something new or something old .. i just know its frustrating trying to write or type .. so if anybody knows if i mentioned tingling in my feet and hands, i'd appreciate a reminder :)

on that note, i've done worn myself out !!  this is great exercise for me .. being able to sort out my thoughts .. and i'm finding the words are coming out better every single day !!

thanks for listening to my ramblings :)