mommie

hello again.

thank you all so very much for the kind emails.

they have made my day just a little easier to get by

they brought me smiles and tears.

good tears.

from the bottom of my heart.

nick and i thank you.

its been very hard for us. we try each day just to get through.

its been hard for me lately. don't know why but it seems like its starting to sink in.

seeming to sink in deeper and deeper each day.

i was just going through all the boxes i have of her stuff.

our memmories of her

i tried to keep everything of hers as i could but than after 4 cars  full.

i knew that i couldn't take it all with me

she was my hero and best freind.

that one person i could talk to about anything anytime.

i miss her voice and her hugs the most.

sometimes i just want to give up but she would never let me crumble.

i hope i can come out even half as good as the women she was.

i live each day for her.

 

i love you mom

and will talk to you tonight in my dreams.

 

 

i am going to try to keep this journal and add to it. for her.

but im not all too sure how.

haha. she always wanted me to have one// go one it with her.

but it seemed outdated for me. boy was i wrong.

help. would be nice=]

thank you again.

 

 

 

day 287

i'm not quite sure if i have the energy to finish this entry but i do know if i don't write stuff down that i forget .. so here i go .. nothing fancy .. just plain too tired

i had mentioned the baby bump right above the tumor on  my left rib .. this isn't under my arm so much as just a few inches above my tumor on my rib so there is no way its a lymph node .. i got in to see dr raymond and he asked me if it hurt or if it bothered me .. i said no to both .. its just there .. he said around their office if something doesn't hurt or bother the patient, they don't worry about it .. i can do that as long as this isn't the tumor thats going to kill me .. he reassured me that in the scheme of things, this bump is really minor ::big smiles::

my numbness in my fingers and hands seems to be changing .. less numb at times .. then back to the typical level of numbness .. i really like my hands being less numb .. it makes me feel more normal :)

this tumor that appeared on my left rib is causing less pain !!!  i stopped using the morphine patch and i'm popping about half the vicodin that has been prescribed .. thats good news hehe

i've been on steroids since my surgery (to reduce brain swelling and elimiate seizures) and now they've begun to wean me off the drug .. its a 3 week process where i reduce the amount of the drug by 1 mg a week .. i am (i think) already feeling less of the side effects since tuesday (which is also a good thing!!)  i actually had one morning where i had more energy than i've had for awhile .. i think i overdid it on that day and now i've decided to take it easy so i don't use up too much energy in one day :)

i am nervous about being weaned off the steroids .. even though i don't want to take them any longer than necessary, its probably that i'm  nervous about having more seizures if i'm no longer taking the meds .. i'm keeping my fingers crossed !!

today, if all goes well, is the last of my 10 radiation treatments .. i hope 10 is enough .. i suppose they're gonna run a few tests and scans just to make sure the tumors are gone .. ::big sigh::

monday i'm turning the big 5 0 !!!  i decided that i wanted to be treated to a massage package at my favorite day spa which is right next door to my office just a few miles away .. i'm a bit nervous about being away from home for 2 hours, but i'm really looking forward to being spoiled !!

here's the description of the package that i decided on ...
"Head to Toe Revival ..

Our most popular package. A full body massage melts away all your tension using a blend of aromatic essential oils. Then our Aroma+ facial cleans, conditions, and exfoliates your skin, ending with a warm mask and a delightful foot massage. An incredibly luxurious and pampering experience.
Please reserve about 2hrs."

ask me if i'm looking forward to the treatment on monday !!!

well it appears that i've done run out of energy for awhile .. i was hoping to be able to write more but i am still fatigued easily .. maybe i'll take a nap before i head off to my rad treatment at 3:30

and of course ... huge thank yous !!!

please forgive me if somehow i've managed to get the names and the gifts switched around .. i've tried to hard to keep them straight !!

thank you to Nettie who sent me 2 beautiful pairs of summer pj's!!  i can't wait till its warm enough to wear them !!





Erika !!!  thank you so much for sending me 2 of your copies of the Washington Post !!  i really made myself ill thinking i'd lost them forever !!!



Cyndee & Steve ... what beautiful additions to add to my candle collection !!  the fragrance, the design .. trust i won't be burning these candles .. they're just too beautiful !!!  thank you :)



Nelle !!!  ok, so there used to be more stuff, but my daughter decided she REALLY wanted the slipper LOL  thank you for sending such sweet, thoughtful gifts !!



and from the awesome Chemo Angels, a few of my journal readers (waving to Jimmy!!!), i received "some" get well cards !!!  how i wish i had the time to thank each person individually .. thank you all .. so very very much :)



and as promised .. here's me and my new prescription glasses !!! I CAN SEE !!!!  I CAN SEE !!!!! hehe

day 285 - CCCMA

i thought i'd take a few morning and try to catch up a bit .. this appears to be easier said than done .. my fingers aren;t going anywere i intend then on going!  this entire litte paragrah has taken me at least 10 minutes .. makes me give considertion to composing voice entries !!

can YOU say numble fingers ??? hehe



here is a little blurb publised by GotCancer . org featuring the CCCMA shirt my sister Nancy got for me !!  just thought i'd take a momemt and share it!! here i am with my nephew, Michael :)

She's a Fighter

Tune in to "Just One Girls Head Noise" - Pamela's chronical about her battle with lung cancer. Be sure and keep track of her "quit days" too, as it wasn't that long ago that she was <whisper>smoking</whisper></WHISPER />. These days she's a CCKMA'er, as you can tell from her photo!

» Go CCKMA!
» Want to add your photo?

gotCancer.org Action Shots



i can't believe how totally and completely exhausted i've been the past few days .. all the while, attributing it to the brain rads and finding out that this is more than likely because of the dexamethasone (steriods) .. these pills control the swelling in my brain, the side effects are sometimes intolarable !!  i can't wait until i'm off them completely and don't need them anymore !!

today they start weening me from the steriods (i guess it could be bad to just stop taking the pills) so they have a plan to reduce the dosage by 1/2 gram per week, which will take 4 weeks to eliminate the drug from my system.

i have to confide that i'm nervous .. these are the drugs that are controlling the swelling in my brain, reducing the chances of having another seizure .. me has a feeling i'm going to be sticking close to home for the next few weeks (just to make sure!!!)  wish me luck .. wish me a seizure free life please :)



backtracking a few days so i don't forget to share whats been going on .. my son left friday morning to attend a dirt bike memorial for one of his friends .. my daughter came and spent the weekend so i wouldn't be alone .. it was awesome spending time with her again !!  when my son arrived hone around 7 pm, he surprised me by saying "i missed you!!" i missed him too :)  i wanted to tell him that even though i've been emotional lately its NOT because i'm sad .. i'm just feeling overwhelmed at times .. i started to explain .. "my life has been ... " .. "no Mom" he corrected me gently "your life IS!!"  a subtle correction for sure, but an attitude that i want to adopt as my own :)



i was in the process of attempting to clear off my computer desktop 2 days ago and ran across my son's request to the Unversity of Hawaii to take a leave of absense for 2 semesters because of my health .. obviously he had assistance with the letter because of all the precise detail .. but non-the-less it really shook me up to read the words he has write ..

"Unfortunately she has not responded to any of the treatments.

She is living alone and has n o one to cre for her and is increasingly unable to care for herself.   She is extremely fatigued, unsteady and weak and only semi-ambulatory. Her cognitivie function varies from day to day.  My Mother desperately needs help and I am truly the only person who can provide the assistance that she requires."

He goes on the explain that he requires 2 semesters leave.

i know there was so much more that i wanted to write, its just that its taken almost 3 hours to get this far !



i am a collector of stuff .. a teacup collection started by my paternal grandmother; a harmonica collection started by my paternal grandfather; pill boxes for my daughter; dice collection for my son; ceramic artwork prepared by my children; troll collection for ME !!  shot glasses for ME !! Beanie Babies for ME !!  i have NO idea if any of this stuff means anything to anyone but i know i just can't ignore the fact that something needs to be done with all this stuff .. it appears that a huge gargage/estate sale is in my near future .. i know f sure i'm going to need help organizing .. i have an entire attic full of clothes and unused funiture .. it appears that i'm gonna have my hands full for several months .. i just hope i have the strength to pull it off
!!



i had the shock of my life yesterday .. i subscribe to monster . com where employers advertise for employees .. imagine my surprise when i realized my employer was advertising to fill MY job .. what does this mean for me?  i have NO idea but i think its about time that i start looking into receiving social security and/or california state disability benefits .. i don't even know who to ask .. i also need to make sure that if i'm placed on medical disability that i don't lose my life, dental and medical insurance .. that would screw things up for me for sure .. does anybody have any idea who i can get these answers from?  i really am clueless !



i got my daughter to help me take a few pictures of the gifts i've received the past few days !!  hopefully i'm going to have the energy to post the pictures and thank my friends :)

enough rambling eh?!?

let me see now if i can post a few pictures .. and as always, thanks for sticking around and sharing my head noise (ps .. my default dictionary is still MIA so please pardon the lack of spell check!!!!)

xoxoxox

the not so happy side of cancer

i've decided to try for 2 entries .. this one, more serious than the previous .. even though i wish i had nothing but good news, that just ain't my life :)

i appreciate the fact that so many of my journaling friends encourage me to share the not-so-happy stuff here in my journal .. i've decided to make this "serious" entry separate just in case anybody wants to skip over it :)

here goes ..

i have 3 journals that i'd like to find out if anybody would like to adopt .. no strings attached of course

i have kept a record of the Editor's Picks with screen captures since October 2004 (not updated since Oct 2005)

http://journals.aol.com/his1desire/EditorsPicksArchives/

i have kept a journal where i tried to help other people with their own journals since October 2003 .. i have NOT updated this journal since the latest install where so many features were added or changed to our journals .. yet there i think there is still some useful information

http://journals.aol.com/his1desire/AOLJournals

and of course, the AOL Journal Directory that i started oh-so-long-ago

http://journals.aol.com/his1desire/AOLJournalDirectory

i know that there are still 20 or 30 people who access the directory daily, so even though i haven't updated it since December 1st, some people find that its still a useful tool (i still use it when i can't remember somebodys URL to their journal)

these journals, especially the directory, are my babies .. i really wanted to help the journaling community as much as i could so that each person could get as much enjoyment out of journaling as i have gotten

and i want to know if anybody wants to adopt any of my 3 journals .. no strings attached, i promise .. the journal(s) would be yours to have full control over .. i would prefer somebody who i know without a doubt would take care of my journals and update them for the other journalers .. i am not sure how the transfer would be done except for someone to copy entry by entry .. its going to be a lot of work for someone .. keeping the journals updated is also a lot of work .. i would hope to find someone who feels that keeping the journals would be rewarding

i think it would make me sick to simply delete these journals but its something that i need to take care of .. it would make me so happy to turn these over to people who would be excited about having them :)

hollar at me if you're feeling like you're up for the task k? hehe

i only have one more thing that i want to cover in this journal entry .. the other stuff is just too serious for me right now

i was sitting last night eating pizza with my baby girl when i reached up under my left arm to scratch an itch .. and i found another lump .. a baby lump .. can you say "freak out?" .. in my world, this is called "canceritus" (sorry i forgot the spelling) .. but its a common symptom of having cancer .. freaking out thinking every single thing (a cough, a bruise .. etc) is cancer .. when sometimes it is, sometimes its merely a side effect of some medication

(this baby lump is on the same side as the tumor on my rib .. yet way smaller)

without thinking, i was sitting with my daughter and was feeling this lump and i (tears) got so scared .. i don't want anymore tumors .. please .. i don't care if its nothing .. i just feel like i'm dealing with enough right now .. i don't want to have to deal with any thing else for awhile .. ok .. i am really scared ..

my daughter took my hand and felt the tumor herself .. "mom .. take a deep breath .. freaking out is just going to make you feel worse .. lets make a note to discuss this with your doctor and stop stressing about it cause it won't help .. besides, its just a baby" .. and she got my book of notes and wrote a reminder to talk to my radiology oncologist .. she wrapped her arms around me and comforted me .. like only my awesome daughter knows how .. and within seconds i had a smile back on my face .. knowing, i guess, that the only thing i can control is how i react to my situtation and i my attitude

Dr Raymond, my radiologist, is out of the office this week (mostly surgery) and i'd have to see somebody i don't know .. so i think maybe i'll call Dr James (my oncologist) about my newest lump .. its just that he was so casual about the lump on my rib that i feel he didn't really give me enough information .. it was more like "hey, these are common .. we'll just radiate it" .. i would be more comfortable having just a tad more information but i am hesitant about searchingthe internet for information about lung cancer metastazing .. there are just some things i DON'T want to know .. not now, perhaps not ever .. but i need to pick and choose when i'm ready for receiving perhaps devistating news .. i can only do what i can do to make sure the rug isn't yanked out from under my world unless i'm prepared

(example .. i don't ask, refuse to ask .. don't wanna know "how much time do i have left")  i'm kinda hoping when the fat lady is getting ready to sing that somebody will tell me, but until then, i don't want some self-profilled prophecy (boy did i get the spelling screwed up on that but my aol dictionary is still MIA) cause i intend on fighting this

and that is all i want to say about that .. except of course, that i'll fill ya in when i get any news .. i am trying to remain calm and not run off to the emergency room so i can get a diagnosis on my latest .. i just will refrain from giving it much thought .. but the LAST thing i will do is pretend that its nothing .. because being realistic .. it is something .. how serious it is will be the answer i'm looking for

now i need to shake these thoughts .. get the head noise to stop .. relax and distract .. eat?!?!?  now thats always a good distraction LOL

trivia time !!!!!!!!!!!

my favorite song .. one that has great sentimental meaning for me is "do you believe in magic" by the Lovin' Spoonful .. its MY song lol

OMG !!!  as much as i love and adore my cats, one of them just farted and i swear i've lost my appetite .. sheesh .. have they NO respect? ROFL

day 281 - enjoying life and being thankful for my friends !!!

have i ever expressed exactly how much i despise daylight savings time?!?  let it be known now that i do believe that it is one of the worse "inventions" by man .. like my life (selfish me hehe) doesn't have enought to worry about, now i have to try to remember how to change all my clocks too ::big sigh::

 

hehe



i spent the day being lazy with my daughter !!  i had actually prepared a list of things that i wanted / needed to accomplish with her this weekend (mostly going through hair and beauty products that i want to make sure she doesn't want before i toss them out - or sell them at a yard sale)

nothing got done on this "list" except i got a wonderful hand massage ::big smiles::  the hand and foot massages really feel like they help get circulation back .. and even though i try to remember to keep doing little stretches and massage them myself, word .. it AIN'T the same hehe



it feels so good to just hang with my 15 year old daughter for a few days .. it was just a coincidence, but a week before i was diagnosed back in June, she went to stay with her daddy and 2nd mom for "a few weeks during the summer" .. because of my treatments and diagnosis, she ended up moving in with them a few months later .. i was (and still am) grateful to them both for stepping up to the plate and taking care of her .. we would both be so lost without them

it was just kind of ironic .. the timing .. i had just finished suing my ex for child support for the first time in the 11 years that we had been divorced .. i had asked for support before, a minimal amount .. but never followed through on it hesitant about "making waves" .. the court awarded me support just a few months (maybe 3 payments) before all hell broke loose medically speaking .. last week i called the court and requested that they drop the case .. i mean cummon .. rightfully they should now be getting support from ME .. and i gotta tell ya, because of the amount of medical bills i've got now, paying support would so screw things up for me .. i'm just thankful that he's agreed not to pursue support from me .. he said i have enough to worry about and he just wants me to concentrate on getting better .. and yea .. i'm getting all kinds of teary eyed because of the generosity and kindness both my ex and his wonderful wife have shown to me

i've always had what i felt was a very unique relationship with my daughter (who turned 15 back in december) .. with us, there don't seem to be any boundries about what we are comfortable talking about .. while my son will and does fequently tells me "i don't want to talk about it" .. i have never heard those words from my daughter .. in fact, i'll have to confess that there are times i get too much information !!!  i have always tried to give her advice that is realistic .. i try to give my children information so they can make the right decisions .. they've each been given the responsibility of making some decisions at a very young age .. i figured that way they could get a lot of practice and learn about consequenses before they were in a position to make decisions that effected their entire well being and their lives .. so far, i feel like i've done well by them both ((thankfully!!!!!)



i am sleeping so much better now !!!  before i was lucky to get in an hour at a time (which, trust me, does not make for a restful nights sleep lol) .. i now have a new routine .. dozing off usually around 10 for about an hour, then waking up for a few hours and falling asleep again around midnight and waking about 7:30 am .. i am able to sleep laying down now, and i don't know if its because of the pain pills or that my rib is slowly getting better, but i only wake up uncomfortable NOT in pain !!!  i like not being in pain so i'm a happy camper :)



for the sake of my daughters privacy, i'm going to keep this short and sweet, but she had her first big disagreement with her first boyfriend yesterday .. it made her literally sick to her tummy and my heart just broke for her .. all i could really do (i felt) was to let her know that every day that passes by will lessen her pain and that i was proud of her for being honest about making a mistake in judgment .. that (to me) it was difficult enough to admit to someone else that you'd screwed up bad .. but it was far worse to lie about it .. in my book, and hopefully my children's books too, its worse to be thought a liar than a person who made a mistake .. trust is a tricky thing and i've found that usually once trust has been messed with, it can be impossible to regain it .. and then i just held her .. she's such a wonderful girl .. a fighter for sure .. kinda like her momma .. she's been a handful since the day she was born 8 weeks premature .. and i adore her .. whole bunch, whole world ::big proud momma smiles::



i wanted to let everyone know (thems that reads my journal(s) that is) how much i appreciate that you are all so encouraging of my journaling efforts .. i know (really i do) how difficult "our" journey is .. and yea, i really do feel like you are here with me, taking this journey with me .. and i swear i'm not going to cry !!!  but i want and need you to know how good it feels not to be expected to have a happy face on all the time .. even though i try to remain upbeat .. sometimes all this just really gets to me .. reading your words of encouragment and support means the world to me .. it really really does .. i think i'll keep y'all around if thats ok .. you've each touched my heart in a very special way :)



i think i have 3 more things i need to vent about .. i am trying to go back to using my "hummingbird line gifs" to separate my thoughts (since i bounce around from subject to subject so much hehe .. i used to use the lines all the time and then got to the point where i couldn't even remember how to insert images into my journal .. thankfully that has gotten so much better !)

but i don't know if i have the energy to finish empty my head of all this noise lol

maybe i'll separate this into two entries .. this entry and a more serious one that people can skip over if they need to .. i wish i didn't have serious subjects that i need to write about but if i have discovered anything, its that my journaling friends seem to have a never ending supply of "different perspective" and helpful advice !!  how many times have i come to you seeking advice?  lots !!!  its so wonderful feeling like i can turn to you for a different perspective .. you've given me so many different ways of seeing my situation .. of coming up with resolutions .. do you know how much i appreciate you?



i think the last thing i want to share in this entry is how i feel about accepting gifts from people .. i've never (EVER) been comfortable accepting charity or gifts from people .. i don't mean birthday gifts and such from my family .. i have always felt that i was the one that gave .. i am more comfortable giving than receiving .. its my nature .. and its deeply engrained (sorry my spell check dictionary has gone and disappeared so you're gonna have to put up with my spelling errors today)

after i was diagnosed with cancer and shared the news with my journaling friends, the offers of help, financial assistance, advice, and offers of gifts started rolling in like i couldn't believe .. the offers made me extremely uncomfortable .. i NEVER wanted anyone to doubt what was important to me .. that every single gift of advice, support, encouragement, heck, just the fact that some of my friends keep coming back to share my journey with me makes me feel more blessed than i probably deserve .. i had seen other journaler's reputations get flushed down the toilet after rumors started about them faking an illness or faking their situation simply to get attention or gifts

i never ever wanted anyone to doubt what was important to me .. the fact that you are here, by my side .. means more to me than i could ever completely explain

and yet the offers of gifts kept rolling in .. i still don't quite understand why so many people are so kind to me (i am crying again .. cause i'm just so amazed at the kindness and generosity that you've shown me) .. maybe it means that i've touched your hearts like you've touched mine .. maybe it means that i've been blessed to be surrounded by some awesome kind people who go out of their way to make other people feel better .. i don't have the answer really, but i am blessed .. that much i DO know !!!

i think my change of heart started when i received the mass of get well cards from my friends and the awesome chemo angels .. perhaps it was the fact that i no longer felt afraid to give out my address to those who asked (people i was familiar with that is) .. i mean cummon .. lol .. if i feel threatened in anyway by any of my friends, i should probably see a shrink not an oncologist hehe

is it odd to confess that i have decided that i really like getting presents? LOL  there are days that i go to the mailbox and there will be a gift (or sometimes 2) from either a chemo angel or one of my journaling friends .. and i swear, i am like a kid in a candy shop LOL  i always end up in tears (the good kind !!) .. and i've come to the realization that i LIKE getting presents .. they make me feel good .. they make me smile, even the smallest things like receiving a tea bag or a bookmark .. its an awesome feeling that someone took the time to think about me and want to let me know !!

its strange how less important my "journaling reputation" is to me now than accepting kindness from my friends .. before i felt like my reputation was all i really had .. now i have to admit that i feel like i've won the jackpot when it comes to my friends !!  each and every single gift that i've received puts a smile in my heart .. and i have a fondness for smiling LOL  i have decided i like being happy !!! 

i DO have a question however (if you've made it this far through my ramblings today hehe) if i "brag" in my journal about the gifts i've received in the past few days, will y'all think less of me?  would anyone doubt my motivation of just wanting people to know how much their gifts mean to me or would it be seen as a possible attempt to solicit more gifts?  i know that i am now making an effort to thank each person privately .. trust that it breaks my heart that when my brain tumor was growing out of control, i didn't even open my mail for over 2 months let alone acknowledge the wonderful gifts i received .. i never want to get that sick again .. that is NOT who i normally am

so what do y'all think about me acknowledging gifts publically?  good? bad? questionable?  i really could use your input :)



its breakfast time .. i don't know if i have the energy to compose a downer of a journal entry today .. but i think i'm going to at least start another entry .. i can't believe just one girl can have so much head noise LOL

sending you hugs and kisses xoxoxox

day 280 - what happened to miss independence?!?

have i explained how chemoangels came into my life?

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

 

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

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

its been a delight .. pure delight ..

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

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

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

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

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

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

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

but anyway ..

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

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

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

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

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

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

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

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

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

thanks for coming back and sharing my head noise !! 

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

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 ;-)

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 !!!

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::

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 !!! 

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

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 :-)

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 :)

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 !!!