Just One Girls Head Noise UK

mommie

2006-06-13T00:23:00.000-07:00

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but it seemed outdated for me.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

2006-04-07T09:44:00.000-07:00

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 !!!

2006-04-05T07:09:00.000-07:00

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

2006-04-05T06:01:00.000-07:00

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

2006-04-02T10:16:00.000-07:00

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 !!!

2006-04-02T09:12:00.000-07:00

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?!?

2006-04-01T07:21:00.000-08:00

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

2006-03-31T20:45:00.000-08:00

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

2006-03-30T11:31:00.000-08:00

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 !!!

2006-03-30T07:20:00.000-08:00

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 ;-)

2006-03-29T13:01:00.000-08:00

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 !!!

2006-03-28T08:14:00.000-08:00

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

2006-03-27T21:14:00.000-08:00

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 !!

2006-03-27T17:17:00.000-08:00

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

2006-03-26T07:23:00.000-08:00

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

2006-03-25T18:12:00.000-08:00

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"

2006-03-25T09:16:00.000-08:00

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

2006-03-24T07:44:00.000-08:00

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

2006-03-23T09:09:00.000-08:00

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 !!!

day 271

2006-03-22T10:31:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

needing a little help

2006-03-21T20:42:00.000-08:00

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

:)

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

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

i'll owe ya huge hehe

day 270 (just a quicky!!)

2006-03-21T10:27:00.000-08:00

i just wanted to leave a quick update ;)

all is well, i just slept "wrong" last night and my rib is hurting like the dickens .. i also need to rest for my speech therapy at 12:30 and then i get my stitches removed at 3 (NOT looking forward to that lol)

anyway, i'm just too sore and tired to write much but hopefully i'll be feeling better tomorrow so i can update you on my head noise :)

day 269

2006-03-20T07:35:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

just adding a quick thought

2006-03-19T05:40:00.000-08:00

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

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

My Quit

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

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

day 268

2006-03-19T05:16:00.000-08:00

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

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

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

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

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

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

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

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

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

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

you all are the BEST !!!!!

2006-03-18T17:20:00.000-08:00

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

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

(Yes Paul, mess with my brain and i start thinking i'm from texas with the y'alls lol)

i love you all .. i really do

day 267

2006-03-18T14:13:00.000-08:00

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

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

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

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

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

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

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

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

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

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

day 266 continued

2006-03-17T23:00:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

day 266

2006-03-17T08:44:00.000-08:00

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

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

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

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

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

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

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

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

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

that was just so wrong ..

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

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

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

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

thanks for listening to my rambling !!!

day 265

2006-03-16T07:37:00.000-08:00

::sigh::

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

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

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

so, change in subjects ..

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

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

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

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

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

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

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

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

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

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

thanks for listening to my ramblings :)

day 264

2006-03-15T05:51:00.000-08:00

so much has happened in the past few months, its difficult trying to figure out where to begin .. add the fact that i'm trying to type with numb fingers (a long term side effect from the chemo)

i need to thank my sister, Nancy for keeping y'all updated .. i still can't believe she'd take on that responsibility and i feel i owe her for keeping my friends updated (sorry, those aren't the exact words i want to use, but the words are not coming out the way i want them to)

my battle with brain tumors isn't over .. i had a 2 inch tumor removed and have a small inoperable tumor that remains .. monday i begin a series of radiation therapy (20 doses) there is a 30% chance that the tumor won't respond and will require additional radiation (referred to as "boosts")

friday i return to my oncologist office to figure out where to go from here .. my lung cancer hasn't responded to either the chemo or radiation .. the radiation had me so wiped out that i had to take a break and try to recover my strength .. it was then that the brain tumor started growing .. looking back, i was having side effects from the tumor which included the seizures, weight loss (i was down to 89 pounds), loss of balance (i kept falling down) .. and loss of strength and energy

i am keeping myself busy trying to find physical therapy that is covered by my insurance .. the doc also thinks i'll benefit from speech therapy .. so i've been trying to figure out my benefits and there are times that i become overwhelmed

i don't know if my sister Nancy told y'all but my son has moved back home to be with me .. he is taking a break from college (the university of hawaii) .. i get choked up every time i think about the sacrifices he's making for me .. he's taking care of me .. i am so proud of him, words can't begin to describe how i feel

oh, before i forget, i want to thank my chemo angel Erika for the flowers !! i lost her email address so i couldn't let her know that i received the flowers yesterday .. thank you Erika :)

today i am going on my first outing .. i am going to get my eyes checked because i'm tired of not being able to see clearly .. Sears does the exam and only charges $65 (which i can afford) so i decided to throw caution to the wind the gather up the courage to go out in public .. my son will drive me and i'm scared to death .. i've decided to use the wheelchair i had my son buy me right before my 1st seizure .. i am nervous about going out in public when there is the chance that i'll have a seizure but they have me on medication to control the seizures (a side effect from the surgery and messing around with my brain)

oh, before i forget i've gained a lot of my weight back, weighing in at a whopping 102.5 pounds !!! and i'm sore lol i had no idea that i'd be this sore from simply moving around .. i am stiff and sore and you'd think i was working out instead of simply walking and moving around .. i can't wait until physical therapy starts hehe

well, i think i've done worn myself out by typing this little bit .. but i need to say one more thing .. thank you .. the support that i've received, the encouragement, words are failing me .. i can't begin to describe how much y'all mean to me .. i haven't quite figured out why i have so many friends who care so much about me but i've stopped trying to figure it out and i just want you to know how much your encouragement and support means to me (and i'm failing miserably at finding the words!) so THANK YOU !!!!

a picture is worth a thousand words !

2006-03-13T11:06:00.000-08:00

i thought i'd post a couple of really flattering pictures my daughter took of me during my recent hospital stay

i just can't seem to figure it out though .. hopefully this works

i lost count !!

2006-03-13T10:29:00.000-08:00

i have finally figured out how to post to my journal !!

i got home yesterday from 10 days recovering from brain surgery where they removed a 2 inch brain tumor .. i am happy to be alive

i am still rather confused .. a side effect of the surgery and words don't come easy for me .. but i needed to post an update for all the wonderful people who have been following my situation ... i don't know if you will ever realise how much y'all mean to me

sending hugs and promise to post more as my head clears :)

Day 189

2005-12-29T06:34:00.000-08:00

where does time fly when you're having fun eh? ;-)

christmas is over .. in my head i know its over but i can't figure out why they're still showing christmas commercials on TV and why they're still selling aisle after aisle of christmas decorations in the stores .. its like somebody is wanting to pretend it isn't quite over yet .. i suppose you can't start paying the bills for christmas until its over eh lol

my radiation treatment has changed .. its been so long since i've written i had to go back and read my journal, just to refresh my memory .. they are calling this "boost treatment" .. they're not radiating my entire chest area, but they're directing it only to the tumor in my right lung and the infected lymph node on the right side of my neck .. and i think i'm getting a total of 10 or 12 of these

the area marked in red at my collar bone, is where they are radiating my lymph node and the area marked in black is where they aim the radiation through at an angle to the middle of my chest to "get" the tumor

for those new to my journal, i do not have breast cancer, i have lung cancer .. the incisions you see are from the biopsies and inserting the mediport for the chemotherapy .. i am simply trying to hold my breasts so that anyone interested can see where they are applying the radiation without having to get an unnecessary view of my breasteses :)

i'm relieved because there are a couple of places on my neck and chest that are really burned and have been driving me crazy with the itching .. i think i'm supposed to have 10 - 13 boost treatments .. if i get to vote, i'd like to vote that the treatment end now please .. i have grown extremely weary of playing hide and seek with my lung cancer ..

the change over in my pain medication did NOT go smoothly .. the doc finally decided on low dosage morphine patches and a slightly higher dosage liquid morphine for the more intense pain .. the liquid morphine the doc prescribed wouldn't be in stock until wednesday (yea, that was yesterday), somebody at the drug store decided that my insurance company wasn't going to cover any more morphine patches .. so basically i endured the entire weekend without pain meds .. which of course made it impossible for me to eat or drink .. every single office was closed until tuesday and when i finally got to see my doc tuesday, he decided to try to hold me over with 20/mg morphine cause the 10/mg hasn't arrived at the pharmacy .. all in all, with all the side effects, i've decided i don't like morphine .. the lit bitty baby patches are ok .. i can tolerate those .. but anything higher than that scares me .. i want a medication that relieves my pain and discomfort .. i DON'T want a drug that makes me feel like i'm under the influence .. i ended up having nightmares about the plague .. and when i woke up at 8:30 am yesterday morning, i was so confused and weak from not being able to eat ..

(sorry .. i had to take a break from crying ... err, i mean writing) in my current state of mind, there is nothing scarier than having a nightmare and not being able to tell if its real or a nightmare .. i just get so confused at times .. not knowing which medication i just took because i forgot to write it down .. not even knowing what today is because i moved the calendar and now i can't find it .. so yesterday all i could do was wait until 9 am when i could call my mom so she could un-confuse me and tell me what is real and what isn't .. and mom reminds me to drink my after with my soy shake .. and she reminds me to remember to take it one day at a time .. and she keeps reminding me that she loves me .. and she knew right away that my nightmare about me having the plague wasn't real .. and she reminds me to eat something (which sounds silly, but i don't want to eat cause it hurts)

so at 10 am yesterday, i went to my radiation appointment and called my mom when i got back home .. and she tells me my lil sis Nancy and my brother-in-law Keith are bringing my mom here, to my house in california, from where they live in las vegas maybe as early as this weekend .. so she can hold my hand and tell me what things are real and what things are just in my head .. and she can hold me when i cry and she will tell me its going to be ok when i get scared from coughing up blood .. and mom will remind me to make my lists of which medications i'm supposed to be taking and i'll help by reminding her to check her blood and to take insulin ..

and my mom tells me not to worry about having to act all grown up around her .. that its ok for me to cry and be scared .. after all, i was crying the first time she ever laid eyes on me :)

(thank you Nancy and Keith and YOU too mom !! i love you all so much and i see you soon !!!!!!!!!!!!!!!!!!!!!!!!!!)

i'm back hehe

2005-12-20T14:19:00.000-08:00

not that i actually "went" anywhere mind you .. except back and forth to radiation .. i've completed my 17th radiation treatment (of 33 scheduled treatments) as of today .. and of course chemotherapy .. i just finished my 3rd on friday (out of 6 scheduled)

now, the reason i've been hiding is because of the tests yesterday .. my third brain scan and my 3rd CT scan of my neck and chest .. to see if the treatments are making any progress on the tumor and my lymph nodes and also to check and try to confirm the brain cancer .. the question mark in my brain, which started out on the right side; moved to the left side; has now moved back over to the right side .. not exactly behavior that allows them to confirm anything (that would be NOT bad news) .. we've always kinda known from the get-go that i have a very stubborn tumor .. so that wasn't really any surprise to me that it hasn't changed .. but it hasn't gotten bigger

they're changing my combination of pain killers again .. the last combo worked really good since i was in the hospital on the 6th and i've actually been able to get rid of the pain in my esophagus enough to gain weight .. but the last 2 days i've been feeling that stinging pain in my chest and neck again so the doc is switching up meds to see if any other combo works better .. i'm on double the morphine patches and double the liquid vicodin .. if this doesn't work, he's eliminating the patches and vicodin and putting me on liquid morphine .. anything is ok with me as long as i can eat and drink :)

my son came home from college in hawaii last night .. i had to wait up till 12:30 this morning and when i finally laid eyes on him i felt like my heart was going to jump out of my chest .. he looks like a 20 year old hawaiian hippy lol .. a cute one at that :) right now he's sleeping in his sisters room .. from what i understand they had a going away party for him and he partied it up pretty good before he came out here .. i imagine its going to take a few days for it to wear off .. poor baby lol

my friend Rover has disappeared .. he took off to go pick up a "check" and we haven't seen him since .. his friend, Julie, that he had left here to stay with me went out looking for him, but they ended up arguing and not knowing what to do, she came back here to stay .. no matter which way i look at this, our mutual friend has basically abandoned her at my house .. assuming i suppose that i'd take care of her .. word dude .. i've got enough on my plate and i don't appreciate you treating me like this .. i can't believe i was so excited about seeing my long lost friend .. guess he lost more along the way than i ever imagined

i'm not sure whats going to happen, but i do know i don't have the heart to kick anyone out on the street .. especially not during the winter .. especially not at christmas .. mostly i'm just disappointed over how Rover treated 2 of his "friends" .. bad bad dog

i have some pictures to show y'all of the hats that Rhonda had Dee crochet for me .. they are absolutely beautiful and i've already given one away to another lady who had lost all her hair because of chemo .. thank you both for being a part of something that makes other people smile :)

i'll make sure and post pics of these beautiful chemo caps as soon as i'm strong enough

on that note ~ i think its time for me to lay down and relax for a bit .. i hope y'all are enjoying the wonderful winter weather we're having !!!

Day 175 12:08 pm california time

2005-12-15T12:11:00.000-08:00

i just had a comment left in my guestbook by Bobby, wanting to know if i still smoke cigarettes .. and the answer is a resounding NO .. cancer seemed to be the motivation i needed to quit and i haven't even come close to having an urge to smoke again in 174 days

here are my "stats" by quitnet . com, on online service that has been extremely useful to me especially in the early days of becoming smoke free

My Quit My Stats:
Your Quit Date is: 6/24/2005 6:30:00 PM
Time Smoke-Free: 173 days, 20 hours, 32 minutes and 24 seconds
Cigarettes NOT smoked: 3477
Lifetime Saved: 26 days, 13 hours
Money Saved: $609.00

well, this appears to be the last shot of our accidental garden i'm going to be able to get for this year !! its gotten colder here the past couple of weeks and i haven't seen any new growth so i figured it was time to "harvest" the first crop of corn lol

does this qualify as "accidental corn?" hehe

obviously i'm a city girl, born and bred, so i'm really not too sure what to do with the corn stalks that remain after i harvested the corn .. am i supposed to leave the stalks? am i supposed to rip the corn out of the ground? is there anybody that reads my journal that knows a thing or two about corn crops? HELP !! i don't know what to do now !!!

i tossed the corn "cobs" into the squirrel food basket .. i'll check back in a couple of days to see if they've been hauled off for safe keeping during the winter :)

i have to confess that i've had a blast with the garden this year .. from its earliest beginnings to the actual harvest of almost a dozen ears of really strange looking corn .. i just hope mother nature is good to us next year and blesses us again with another accidental garden :)

::shuffling off singing "you've picked a fine time to leave me, Lucille ... four hundred children and a crop in the field .... "::

Day 173 - 8:51 am california time

2005-12-13T08:52:00.000-08:00

this is just going to be a quick entry before i call my mom this morning .. i slept in till 7:30 this morning so i don't have much time .. i am normally up and working by 5 at the latest so i really feel like i'm catching up on my sleep the past few days :)

i have company !!

a couple of weeks ago i decided to take a chance and send an old friend an IM on yahoo .. i lost touch with him around 3 years ago and i've really been missing him .. (on yahoo if the person isn't online, it will actually save the message until the next time the person logs on) i was really surprised when i checked the very next day and found a message from him asking for my phone number !! turns out he hadn't been online in months and just happened to log on that very day to find a message from me

i sent him my phone number and got a phone call from him the next day .. i explained my health situation to him and told him that i would really understand if it was too difficult to be friends with me right now .. he said not to worry .. i told him i'd call him back on sunday (he was staying with friends in the area) and maybe we'd be able to hook up if i was healthy enough to drive

i called and left several messages and never heard back from him .. until this last weekend .. he called and explained that he had lost his place to stay and was headed up to san francisco to hook up with another friend .. he asked if i'd get online for him, check his email and get the phone number of his friend .. i scolded him for not thinking of me when he needed a place to stay .. he said he didn't want to inconvenience me

sunday night, i was a bit surprised (pleasantly) when my friend (i've called him Rover since i've known him) and his friend, Julie showed up at my door at 10:30 at night, needing a place to stay

and its working out great !!! i never even go into the living room and i've got a huge couch in there that they can share .. i love having the company .. i even tried eating solid food yesterday, a bit braver cause someone was here in case i choked again, he could save me lol

Rover and i did go out for a few months some 7 or 8 years ago, but quickly realized that although we loved each other, IN love was just something we could never do .. but he's always been such a great person to just hang out with and i knew that if he took Julie under his wing,that she was good people too

i love that i can just walk into the living room and have a conversation with either of them .. if they're awake .. they've both been sleeping a lot the past few days, Rover says living on the streets does that to you .. wears you out down to the bones i guess

i told them both yesterday how grateful i was that they decided to stay with me and my home was open to them until my son arrived on the 19th and only then because i only have one bathroom and it would be a bit crowded in our tiny cottage .. Rover said that would be great cause he'd have "a check" by then and he could get a place to stay

i was in such good spirits last night .. we ran out and i got us some chinese food .. i told them both it was great having company for dinner .. Julie replies, "yea!! and its great HAVING dinner too!!" lol

i love that i have somebody to put the aloe vera on my back after my radiation lol

on that note, its time to call my mom :)

Day 170 7:51 AM my time

2005-12-10T07:51:00.000-08:00

i decided it was about time to get that ugly picture off the first entry in my journal lol

ick !! why did you guys let me put that up there? i can only claim insanity caused by 3 days in the hospital hehe

i'm at about 95% recovered .. i'm still on mostly a liquid diet but had my first scrambled eggs for dinner last night .. i'm craving something crunchy so i'm hoping my esophagus will heal completely quickly .. i want crunchy food !!! the liquid vicodin helps me eat and drink until i'm completely recovered .. unfortunately, the vicodin also makes my skin itch .. i can't tell if i'm getting sunburned from that radiation and it itches or if its from the reaction to the vicodin

my oncologist let me skip chemo yesterday .. he said i'd had a hard enough week and deserved a break .. so i came home, did a little bit of work for the office and then actually slept .. my first honest to goodness "nap" in months .. i don't know if my doc is going to have me make up the missed chemo at the end .. i'm really hoping to be done with all this treatment stuff on January 3rd .. ::keeping my fingers crossed::

while i was digging through our old family pictures looking for the picture of my lil sis Nancy, i ran across a couple of pictures of me with my Grandpa Joe .. i miss him a lot :)

home from the hospital

2005-12-08T17:12:00.000-08:00

i'm home and i have a very ugly picture from the hospital to prove it hehe

obviously i'm feeling 1000% better .. no more morphine, no more all the other drugs they kept pushing into me trying to make it more comfortable

i'm home and i'm comfortable (i also have the help of my liquid vicodin lol)

i hurt my esophagus and its getting better .. my doc promised me a rush discharge this morning so i made it to radiation in time .. tomorrow is my 12th radiation and my 3rd chemo .. i can't believe tomorrow is friday ..

my ex brought my daughter by the hospital last night .. we laid on the bed and i asked her just to hold on to me for a few minute so i could cry .. then i'd be all better and strong again .. i cried for a few minutes, she held on tight .. then she rubbed my feet .. a sure fire way to get me to smile :) then i got a quick call from my son making sure i was doing OK .. he said he could hear in my voice that i was doing a lot better .. he asked if it was ok if i held off getting our Christmas tree until he got home on the 19th .. we made a deal :)

i so appreciate my ex coming out of his way so i could spend time with our daughter .. i know he was uncomfortable because of his injury yet he still brought her over .. he even gave us a few minutes alone in the room so we could snuggle :)

i got absolutely nothing done on the list of office duties this week, so it looks like i'll be working well into the weekend .. lucky me eh :)

thank you for sticking by my side, for the support, prayers and encouragement .. i hope you all realize how good you are for my heart .. i don't know if i could do all this without you

Audio entry

2005-12-07T19:05:00.000-08:00

Day 166 - 'bout 7:17 am my time

2005-12-06T07:18:00.000-08:00

today i undergo my 10th radiation treatment .. 10 down, 20 to go .. i'll be 1/3rd of the way through !!! ::breathing a huge sigh of relief::

i was dreading the treatment yesterday, that one tech that absolutely refuses to crack a smile really bothers me .. in case you haven't noticed, i really am making an effort to remain cheerful and positive throughout this ordeal .. i simply do no have room in my life (or in my heart) for negative people .. thankfully she was gone yesterday and was replaced with a very sweet, good natured technician who kept trying her best to keep my breasts covered during the treatment .. her concern for my comfort really made me smile and i made sure that i let her know :)

i've had so much going on .. so many things happening that i wish i had time to write about .. i have been blessed with having so many wonderful caring and concerned people in my life who take time out of their busy days to bring a smile into my day .. i have been surprised with a gift of 3 new chemo caps (since i can't seem to stop giving them away lol thank you Dee and Rhonda !!!), i have a beautiful poinsettia sitting on my living room table (thank you Jeff !!), i have my two wonderful chemo angels Sandy and Erika (thank you both so much for all your attention !!) .. and i know i'm forgetting somebody important .. at least i think i am .. but then again i apologized to my sister Nancy for never thanking her for buying the sweater for my daughter and Nancy swears i've thanked her three times now lol

healthwise .. i'm exhausted .. i think its the radiation that has been irritating my brochial tube .. swallowing is difficult and i seem to be coughing a lot lately .. i guess its just part of the process of getting better .. i get up early in the day to get office work done, call my mom at 9 am and then off to radiation at 10 .. i know i should do grocery shopping or cleaning the house afterwards but i just don't have the energy

today i have the eye appointment for Laser Vision Correction to see if it is something that could help me .. i figure even if i chicken out or i'm not a candidate for surgery, i can get a new prescription for glasses :) i would love to be able to see well enough to drive at night !!

i got a phone call from my son sunday afternoon .. he's coming home on the 19th !! i'm crying just thinking about finally being able to see him again .. he says he's ok with taking me to radiation every day .. i'm relieved that if i get so tired i can't drive myself, i won't have to worry about that for a few weeks

i am kinda nervous about being around someone (my son) while i'm struggling through these treatments .. its one thing to have someone visit for a few minutes and another thing to have someone witness how sick i actually get after the chemo and radiation together .. kinda takes away all the glamour of being a cancer patient .. i know alot of you may not understand what i'm trying to explain .. its just that my children have never really seen me suffering .. and it breaks my heart that this is something that we have to go through .. i just wish i wasn't sick .. i just wish this wasn't something that i have to go through with them

when my son called sunday, i could tell he had just woken up .. he sounds so young when he's sleepy :) he asked me if i knew how to download music .. i said of course .. he gave me the name of the artist and a song that he wanted me to listen to .. i didn't think much of it until the next day when i actually found the mp3 and the lyrics .. i hadn't realized my son was giving me a message .. not just recommending a good song

i'm not a rap person by any stretch of the imagination, but (thankfully) it doesn't take a rocket scientist to figure out what my son was telling me

(i hope its ok to copy lyrics in my journal .. i left a few of the words out since they really aren't appropriate)

the song is Hey Mama by Kanye West
KANYEWEST.COM
[Chorus]
(Hey Mama), I wanna scream so loud for you, cuz I'm so proud of you
Let me tell you what I'm about to do, (Hey Mama)
I know I act a fool but, I promise you I'm goin back to school
I appreciate what you allowed for me
I just want you to be proud of me (Hey Mama)

[Verse 1]
I wanna tell the whole world about a friend of mine
This little light of mine and I'm finna let it shine
I'm finna take yall back to them better times
I'm finna talk about my mama if yall don't mind
I was three years old, when you and I moved to the Chi
Late December, harsh winter gave me a cold
You fixed me up something that was good for my soul
Famous homemade chicken soup, can I have another bowl?
You work late nights just to keep on the lights
Mommy got me training wheels so I could keep on my bike
And you would give anything in this world
Michael Jackson leather and a glove, but didn't give me a curl
And you never put no man over me
And I love you for that mommy cant you see?
Seven years old, caught you with tears in your eyes
Cuz a guy cheatin, telling you lies, then I started to cry
As we knelt on the kitchen floor
I said mommy Imma love you till you don't hurt no more
And when I'm older, you aint gotta work no more
And Imma get you that mansion that we couldn't afford
See you're, unbreakable, unmistakable
Highly capable, lady that's makin loot
A livin legend too, just look at what heaven do
Send us an angel, and I thank you (Hey Mama)

[Chorus]

[Verse 2]
Forrest Gump mama said, life is like a box of chocolates
My mama told me go to school, get your doctorate
Somethin to fall back on, you could profit with
But still supported me when I did the opposite
Now I feel like it's things I gotta get
Things I gotta do, just to prove to you
You was getting through, can the choir please
Give me a verse of "You, Are So Beautiful To Me"
Can't you see, you're like a book of poetry
Maya Angelou, Nicky Giovanni, turn one page and there's my mommy
Come on mommy just dance wit me, let the whole world see your dancing feet
Now when I say Hey, yall say Mama, now everybody answer me (Hey Mama)

[Chorus]

[Bridge]
I guess it also depends tho, if my ends low
Second they get up you gon get that Benzo
Tint the windows, ride around the city and let ya friends know (Hey Mama)

[Verse 3]
Tell your job you gotta fake em out
Since you brought me in this world, let me take you out
To a restaurant, upper echelon
Imma get you a jag, whatever else you want
Just tell me what kind of S-Type Donda West like?
Tell me the perfect color so I make it just right
It don't gotta be Mother's Day, or your birthday
For me to just call and say (Hey Mama)

Day 165 - 6:20 AM my time

2005-12-05T06:22:00.000-08:00

a very very long time ago in my home economics sewing class, i sewed a golden corderoy outfit for my baby sister Nancy .. i was so proud of the outfit, of the way it looked on her and how she modeled it during the annual fashion show that my school held to show off their students handiwork

Nancy and i have been discussing this memory for ages now and this weekend i actually found a picture of her wearing that outfit

talk about memories that bring a smile to my face !! so of course i have to share the picture here, in my journal .. sorry the quality is so poor but at least you can still make out the beautiful smile of this beautiful little girl

Day 164 - about 6:11 AM my time

2005-12-04T06:15:00.000-08:00

since i started my journal way back on July 20, 2003, its purpose has become varied .. mostly i've felt it was my place to get my head noise out of my head and down on "paper" .. an exercise, if you will, that has always seemed to help me figure things out .. sometimes i just wanted to share good or happy stuff that happens in my life .. a lot of it dealing with my experiences volunteering at the humane society .. then i was diagnosed with cancer .. and this has become my cancer journal .. i still have other stuff happen on occasion, but mostly this journal seems to revolve around the fact that i have cancer .. kinda like my life now seems to revolve around my cancer

my social life has basically been reduced to healthy people who have volunteered to help me out with a chore or two .. i used to have weekend long visits with my sister Susie, when i was receiving full dose chemo, she'd pick me up on friday mornings, sit with me through chemo and then spend the entire weekend with me .. but those visits stopped when the full dose chemo stopped .. when i had my restaging appointment on Nov 4th, Aunt Susie volunteered to go with me to hold my hand ..

at both "little" chemos that i've gone to since, somebody asks "where is your sister?"

ya see, i have this little issue .. i have a hard time asking people for help .. instead i let them know i have a "need" if you will, and wait to see if they volunteer .. i told my immediate family and friends that the docs expect me to be flat on my back after week 4 of radiation .. thats from dec 12th forward

i expect that i will need rides to chemo and radiation after Dec 12th .. thankfully thats about the same time that both my kids will be home from school and i've asked them both to help out and take care of me .. my son "warned" me that 2 weekends he'll be going snowboarding .. when Aunt Susie asked me if there was any place she could fill in, i told her about the 2 weekends my son would be gone
i thought that was what she came over yesterday to talk about .. i wasn't quite sure what we were going to do after we discussed my chemo schedule so i had made lists of things we could do .. shopping, errands .. chores .. just stuff .. cause i wasn't sure exactly how long the discussion was going to last and didn't want her to get bored lol

but she lied about her intentions ...

don't get me wrong, this is NOT gonna be a "pick on my little sister day" .. i've just got a lot of one rolling around in my head and for the life of me can't figure out what the three happened to my life .. what happened to the relationship i THOUGHT i had with my sister .. how can one person be convinced they have such a wonderful relationship with someone only to find out the other person feels crapped on?

especially when i thought i was treating her with respect, appreciation, concern .. i never wanted her to feel like i was taking advantage of her giving nature or didn't appreciate the effort she made in my life .. i couldn't have gone through the chemo without her help .. i tried as many ways as i could to let her know .. and i failed .. big time according to her

THAT is why she wanted to come over yesterday .. jeez .. if i ever stop crying i'll write this down .. i still am shocked .. and my heart is breaking .. seriously .. that my little sister could end up feeling so crapped on by me .. that i could make her feel "disrespected, unintelligent, controlled and manipulated" makes ME wonder what kind of person i am that i could make anybody, let alone somebody i love and respect so much, feel that way .. is there a monster hiding under my cancer? why don't i feel like a monster?

when she started explaining how it annoys her when she drives me someplace and i tell her where to park, i almost laughed out loud with relief .. ok .. i'm a backseat driver .. EVERYBODY hates those !! i can't fault her there .. even i hate backseat drivers .. but then when she threw in that she felt i do this in an attempt to control her because i don't respect her driving abilities .. my jaw dropped

she went on to explain that when i interrupt her i am being rude .. but she's not allowed to interrupt me because then i lose my train of thought .. so i'm rude and controlling and not respecting her right to finish a sentence

and when she tries to leave or hang up the phone, i never let her go, so i am attempting to manipulate her into staying longer

my jaw stayed dropped the entire conversation .. i think there was a comment or two in there about how i make her feel like "the hired help" and i make her feel "stupid"

i sat there, quite honestly, feeling like i'd been hit by sniper fire .. i can't remember the number of times i had talks with my sister .. to let her know that if i was doing ANYTHING wrong to please let me know so i could change it .. because i wanted her to feel good about helping me .. and i knew how hard it is to take care of someone, especially someone difficult .. and i knew how frustrating it could be to try to have a conversation with me especially with the chemo brain and being confused all the time

i was so afraid that i'd do something wrong and i'd lose her .. and i think it was her that told me "don't worry .. we're in this fight together, until the end" .. but maybe now i think i got her confused with someone else

cause yesterday, before she left, she told me to think about what she's told me and i needed to figure out if i am willing to change so she can stay in my life because she refuses to stay in my life if i can't treat her like she deserves to be treated

and she could arrange her schedule to take me home from 2 chemos but she wouldn't be able to stay .. i told her not to worry, i'd take a taxi

and then she got her stuff together to leave

and i had more stuff to tell her (i even wanted to show her my bruised toe) but i was afraid she'd think i was trying to manipulate her into staying longer so i kept my mouth shut

and she drove away .. and i think i feel like i lost my best friend ..

and i don't understand how i can make her feel disrespected when i RESPECT HER .. or how i can make her feel STUPID when i don't think she's stupid .. i still give her credit for hating a back seat driver .. but i swear i only try to keep her on the phone cause i like talking to her .. but i'm going to stop trying to keep her on the phone cause i know she hates it

and i won't try to keep her from leaving when she comes to visit .. cause i know she hates that too

but mostly i have a feeling i won't need to worry about most of this for awhile .. because i don't want to see her or talk to her .. i ended up hurting somebody without intending to .. and i hate when that happens .. ya see, i gone and screwed up the relationship with the one person who helped me through all of this .. and i ain't feeling too good about myself

i don't know if it helped, but i told her i was sorry .. really really sorry

good people .. hero's .. kind people .. they don't "lose" their little sisters

Day # ?? - but i know its saturday 7:34 am - my time

2005-12-03T07:40:00.000-08:00

why does it feel like its been days since i updated my journal? i updated on thursday, today is only saturday .. it really hasn't been that long right? from where i'm sitting, the past few days translate into probably over 100 cigarettes that i didn't smoke

i ended up talking to my daughter on thursday instead of driving over to visit briefly for her birthday .. i had dropped her gift off on their porch earlier that morning then scurried off to the safety of my bed to soak in the multitude of prescriptions that i have coming out of my ears .. odd .. my ears are probably the only thing i don't have a prescription for (did i just end a sentence grammatically incorrectly? ::shrugging::)

oh well .. welcome to my head noise :)

and i think i've discovered that i'm slightly allergic to vicodin .. i don't seem to react the same with liquid vicodin though .. WHY am i taking vicodin you ask? well .. let me try to remember .. ok, a variety of reasons .. it started, if i recall correctly, with needing some relief from some incisions in my chest for the odd assortment of surgeries, biopsies .. etc .. then it developed into needing relief from the pain in my neck and back, the result of laying still for hours on hard cold flat surfaces while they scanned every conceivable place that cancer could be hiding (a very uncomfortable and expensive version of "Hide & Go Seek ~ Come Out, Come Out, wherever you are !!!")

and now, after 8 treatments with radiation from the middle of my neck, to below my breastses, the cells previously lining in my esophagus are dying off and leaving the scene of what was once a wild party in my throat .. and trust that their leaving is painful .. emotionally as well as physically .. i had kinda grown attached to those cells lol .. oh, should i have said "they had grown attached to ME?!?!?!"

::cough cough:: ::swallow swallow:: .. just checking to make sure its all working .. and its ok as long as i don't try to swallow anything .. add one little ingredient like water and it changes things .. so i take liquid vicodin now .. cause i like to eat and drink :)

that sure was a very long answer to a very simple question

again, welcome to my head noise .. its crazy up here .. get used to it or you'll go insane from the sheer volume, trust me

i think i've got chemo brain again.. yesterday i received my 2nd of 6th chemotherapy (what is the plural for chemotherapy?) and life doesn't feel the same .. or i don't think i feel the same .. i am having a lot of issues trying to remember what i feel or think for that matter .. the task of trying to remember what i am doing, need to do or want to do is another entirely separate and confusing matter

i briefly got to visit with my MIA neighbor .. the wonderful hummingbird lady .. its a long story i've told before in my journal .. she came home for thanksgiving .. we met briefly in my driveway, then i think she went home to get something cause i remember sitting on the couch waiting for her to return .. i gave up after 2 hours and went to bed wondering if i'd said something or done something to offend her .. then i realized i could have just been really confused .. and was sitting and waiting for nothing .. sheesh .. i need to remember to email her to make sure she didn't drop off the face of the planet since thanksgiving eh

i know some very important things have happened in my life and i'm going to forget them .. or forget to mention them .. i keep thinking i should write some of this stuff down so i don't forget .. so here i am and i can't remember what i wanted to write

for the life of me all that comes to mind is wanting to share that i spent my entire evening last night watching That 70's Show reruns (a TV show i've never seen before so its all new to me lol) .. it was some kinda marathon .. and today i had to look up George Carlin's Seven Dirty Words so i could start using the numbers in place of the actual words .. come to find out, i'll only be using 2 numbers .. number 1 and number 3 .. the rest are useless to me .. of course i can't say the words, you have to look them up or perhaps you're a child from the 70's that actually has some fragment of memory of those times lol

oh, and i had a rotten day yesterday .. i woke in the middle of the night, in a drug induced haze and ended up kicking my bed ouching my little toe .. which really wasn't much of an ouch until the liquid vicodin wore off at 2 am and THEN my toe really hurt .. i ended up splinting it right after i got of out of bed and jammed my toe into the dining room chair .. thankfully its not broken .. just bruised .. i really didn't need a broken toe on top of all this ya know !

and my Sister Susie is coming over in half an hour .. and i can't remember why .. she just called to let me know she was on her way .. i sounded confused i guess so she asked if i was expecting her .. i answered yes, i knew she was coming over i just wasn't expecting her to call ..

and when i hung up i started crying cause i hate being confused .. i have so much to do .. stuff that i can't put off .. my life is kinda depending on me taking care of myself and i can't think straight .. i don't know if i've eaten .. i don't know if i'm hungry .. i know my house is a mess and the christmas presents i ordered for my kids are arriving .. and i know i'm supposed to call my mom at 9 but i need to call her and tell her i can't talk cause i have company .. cause my sister is coming over but i can't remember why

so i just sit and cry .. i don't think i have a pill for tears

sorry y'all .. i tried to warned ya about the head noise :)

Day 161

2005-12-01T15:46:00.000-08:00

and no Paul .. i haven't given up counting days .. did i ever tell you that when all this is said and done and i publish my book, the title is going to be the number of days we endured all of this .. besides, sometimes its easier to figure out a number than an actual subject line ;-)

today they have me on some liquid painkillers (ewwww .. they don't need to worry about me overdosing on THAT stuff) and a mouthwash called "Stanford mouthwash" .. * Stanford's Mouthwash: Tetracycline, Nystatin, Hydrocortisone, Chlorpheniramine (antibiotic, antifungal, steroid, antihistamine)

the pharmacist read the label on the bottle for me .. "gargle 20 minutes" .. eyes wide, i grabbed the bottle and continued reading "before meals" .. sheesh .. i almost saved me $14.10

the past few treatments, i've had a new radiology technician .. she's not rude, she's not grouchy .. she's just not .. well .. pleasant, let alone happy .. she is the epitome of technicians that i detest .. the kind that refuse to laugh at my expense

today while each technician was at my side peering onto my naked breasts (my breasts really WERE there, they were just kinda hiding under my arms .. they hate these procedures) .. when suddenly my cute funny male technician stands up headfirst into the radiation machine .. i could feel his pain and i think i saw one of two of his stars .. the female hitler said nothing .. i consoled him .. "now i know its not my lucky day .. had it been my lucky day, you would have fallen unconscious on top of me so i could have my way with you" .. he blushed .. the female hitler remained rigidly firm in her lifelong goal of never cracking a smile

tomorrow i'm making an announcement .. i am at an unfair advantage .. i get to lay topless while people stroll around nonplused and as casual as if i were receiving manicure .. tomorrow this ends

tomorrow i level the playing field

tomorrow i announce that ANY technician not willing to endure the procedure with me ALSO being topless will have to find something else to do for 15 minutes .. in order for them to fully appreciate the level of humiliation and embarassment patients endure, i will ONLY allow topless technicians to work on me .. and i'll smile and i'm sure they're going to think i'm joking ..

and today is my daughters 15th birthday .. i had plans to drive to her dads house to drop of a little something-something but decided instead staying safely in bed, sipping liquid painkillers would probably be a safer bet .. so i dropped the package off at her dads house earlier this morning .. i would have loved to be able to see her, but i would have cried .. today is a very emotional day for me .. 15 years ago i gave birth to an 8 week premature baby, born at 4 lbs 3 oz, dropping to 3 lbs 10 oz .. we weren't even convinced she was going to live until she was 5 days old .. she's actually already died once .. i've actually threatened to complete the job on several occasions .. when she was 3 days old i refused to go to the hospital .. i had convinced myself that i was falling in love with her and if i stopped going to see her it wouldn't hurt as much if we lost her .. and she's been a fighter since she was born .. thats my baby :)

ouch

2005-12-01T08:31:00.000-08:00

ouch

why did i think that when the side effects from the radiation hit me it would be this gradual, ease into it kind of thing?

after my radiation treatment yesterday i drove to my office thinking my throat felt strange .. within 20 minutes i couldn't stop trying to clear my throat .. its not sore, more like there is something stuck about half way down my chest .. dinner was no problem but around 10 pm last night i decided to take a sleeping pill and almost couldn't get it down, my throat was so tender

yesterday i asked the technologist exactly how much of my chest is being radiated .. for some reason, i came away from all those pre-meetings believing the area around my breasts was receiving the majority of the radiation. He corrected me .. its from the top of my neck, to just below my breasts (i receive radiation from both the front and the back) i haven't even gone that far with the aloe vera gel on the front and can't even get my hands close to my back

this morning i woke up with red itchy bumps on my neck and upper back .. the beginnings of a sunburn .. even though i'm sure in some book somewhere it says "DO NOT SCRATCH SUNBURNS", i don't care .. it itches .. it really itches .. and my throat is starting to feel a little less uncomfortable and a lot more like discomfort

can i go back to bed now? lol

on the "good news" front, i talked to my boss yesterday about borrowing money to have my eyes checked out and possibly go in for lasik (or laser) eye surgery .. it was something that i had started saving money for last year and now my eyesight has gotten so bad most days i struggle trying to read the leases they put on my desk .. he agreed to lend me the money and tuesday i have an appointment with one of the leading Ophthalmologists in the Bay Area !!!! ::insert happy dance::

on that note, its time for me to get ready to call my mom .. not that i'm actually going to be able to TALK .. but i can at least listen lol

my new guestbook

2005-11-29T16:08:00.000-08:00

i've been having problems with spammers in my guestbook for several months now .. hundreds upon hundreds of spam messages .. so today i got myself another guestbook where you have to type in the confirmation code before you can send a message

sorry its such a pain, i just got too tired of trying to remember how to delete unwanted messages from my guestbook

on the brightside, we have a whole new guestbook to fill up now lol

just check out the links in my All About Me Section over there to the left where the links will remain or just use these :)

[Sign My Guestbook] [View My Guestbook]
Powered by E-Guestbooks Server.

whoops i did it again

2005-11-29T06:04:00.000-08:00

10:15 am rain or shine (holidays excepted) you'll find me in the radiology department patiently waiting my turn .. in case you miss me during radiation, on wednesdays, you can run upstairs where i'll be partaking in my 4 hour chemo once a week .. (just so y'all know where to drop my christmas presents off .. i wouldn't want ya running around town getting lost ya know hehe)

most days the patients sit chatting quietly with each another .. yesterday morning there was a woman and her husband there i had seen on several occasions .. she was always quiet, never making a fuss .. just sitting there in those sexy hospital gowns in a hat on that reminded me of Gilligan's Island

i pulled my chair closer to hers and inquired, polietly, about her condition .. although her husband tried to interject on several occasions (to save his wife the effort of breathing i suppose) i really DID want to talk to her, to her hear side of her story .. pretty soon her gracious husband "got it" and was content to sit back and listen .. then i asked if her Gilligans hat held any sentimemtal significance .. she shook her head no

i pulled my hand crocheted chemo cap from my head (i was wearing my black and green one) and then i asked her if she'd noticed my chemo cap that was crocheted by a friend of mine .. she ran her hand over the cap, exclaimed how soft it was .. i encouraged her to put it on so we could see what it looked like .. and she looked like a queen .. a chemo cap fit for a queen .. just about that time my technician came to fetch me and i told her to keep the cap, it looks like it was made just for her and she looks beautiful

and tomorrow i know when i see my new friend, she'll have a smile on her face and a beautiful new chemo cap on her head .. its amazing, even when you're at your sickest, just doing a little something to make you feel pretty sure does do a long way

here's a pic of the cap that Dee crocheted

and Dee? http://journals.aol.com/crochetwithdee/CrochetWithDee/ ummm .. i'm running out of caps .. i only have my blue one left lol

we're going to need to work something out .. a payment plan perhaps .. well, at least until my eyes are better and i can see to learn to crochet myself i can't believe how such a seemingly small gift as a chemo cap can make a lady feel so happy i need to order to more caps please .. one in black and one in orange :) is that possible?

i swear, if ANYONE knows of a chemo patient, these would be the perfect gifts .. they are soft and NOT scratchy at all .. they're warm, yet loose enough weave not to be stifiling hot .. and the colors are beautiful .. i must have received 2 or 3 dozen compliments so far (which reminds me i promised a few ladies to get business cards of Dee's so I can pass them out during next chemo)

sharing pictures from Thanksgiving

2005-11-28T07:32:00.000-08:00

a quick picture of my daughter cooking Thanksgiving Dinner (me .. i watched and took pictures hehe)

from left to right .. my daughter, my niece Susan, my niece Jennifer and my big brother Jimmy

another picture of my brother Jimmy and my little sister, Charlene

thats me in the middle .. with the twins, Charlene and Susan .. my daughter spent the morning putting my makeup on for me .. i still can't believe how good that girl can made me look with the right amount of makup !!

my sis Charlene .. its hard to get her to hold still for pictures

My sister Charlenes daughters, Sue-Sue and Jenny

the cousins and my daughter in the middle

FOOD .. DELICIOUS FOOD

DELICIOUS PUMPKIN PIE

I had to throw this in cause she's such a beauty :)

the pic of my sis is kinda goofy but i thought my living room looked kind of pretty with the sun shining in :)

Day 157

2005-11-27T07:25:00.000-08:00

i have a feeling when my niece writes me an email reminding me i haven't updated my journal in a few days, its time to get writing eh !

~waving to my niece, Amy Janelle~

its been a busy few days and its looking like its going to get busier, so this is going to be a short entry, just to let y'all know how i'm doing :)

my teenage daughter actually did most of the cooking Thanksgiving Day .. i was flattered by her offer to come over and cook dinner for us, i was just a little unsure if she had any idea how much work she had agreed to lol

my sisters Susie and Charlene, my big brother Jimmy, and my 2 nieces Jenny and Sue-Sue all joined us for Thanksgiving Dinner .. i hope next year i'm well enough to be able to invite the entire family

i am feeling the effects from the chemo since thursday afternoon .. the digestion problems are probably the ONE side effect that hit me harder than any of the rest .. and of course, its the one side effect they have no pill for .. the best i can do is a pain pill for the cramps and a sleeping pill so i can sleep through the worst of it ..

yesterday it turned out to be a wonderfully warm day .. i took my little bald head out to the back yard where i just sat and cried wishing i wasn't in so much pain .. and when the cramps would ease up, i'd raise my face to the sun and enjoy every drop of sunshine .. i wasn't expecting my daughter to find me .. i figured she was glued to MTV for awhile .. she tried to get me to come back inside and get into bed .. i finally convinced her to stay outside with me and enjoy the sunshine between my tears :)

my daughter and i played monopoly wednesday night .. we took tons of pictures with the digital camera while we danced around and completely made fools out of ourselves (in the privacy of our own home of course) which i'll gladly share in my journal with complete strangers and my best journaling buddys just as soon as i find time to edit them :)

i got a phone call from my son who is colleging in hawaii .. his momma must have raised him good if he remembers to call all her on the holidays eh ?!? hehe .. i can't wait for him to come home next month

last night my daughter called her dad for him to come pick her up to go back home at 5 pm .. she hadn't said a word to me about when she was going home, i just noticed little things of hers weren't strewn about the house .. "are you going to cry mom?".. "no i'm not" .. "are you lying mom?" .. "yes i am" ..

i've only had 3 radiation treatments so far .. for a grand total of about 60 seconds of radiation .. i wasn't expecting to actually feel any benefits so quickly .. i can take deeper breaths without it catching or causing pain in the middle of my chest .. the coughing is a lot less and i'm hardly coughing up any blood anymore (sorry to ick you guys out) .. i'm thinking since i feel so much better, this would be a good time to stop the chemo and rad's before i get really sick .. right? lol .. i mean if i can feel the effects of the radiation killing off cells this quickly, i can only imagine what its going to feel like after 27 more treatments

and my daughters 15th birthday is Thursday .. my baby is growing up :( i'm not quite sure what she has planned so i've already given her birthday gifts to her .. i am hoping i feel well enough on Thursday to drive by her dads house and give her a card and flowers or something ..

on that note, i have a ton of office work to finish up .. and i'm hoping the sun will be shining again today so i can get a little sun on my head :)

i hope you all had a wonderful Thanksgiving holiday !!!!

1 down .. 29 to go

2005-11-21T16:36:00.000-08:00

(1 radiation treatment down and 29 to go, that is)

i got my first radiation treatment complete .. i arrived at the radiation oncology office at 10:05 and walked out at 10:38 .. sheesh .. almost wasn't worth bothering to put makeup on for lol

yea .. i was nervous .. its just so difficult to imagine that this radiation thing, xrays i've been getting since i was a child, is killing off my cells .. that something that i've perceived as harmless for so long is what is quite possibly going to save my life

they radiated me 11 second from the front, flipped the machine over and zapped me 11 second from the back .. treatment complete

somebody get out the calculator please .. 11 seconds per side; 2 sides per day; once per day for 5 days, and continuing for 6 weeks .. is what? 11 minutes of radiation? i'm still wrapping my brain around that one

but i survived .. it hurt as much as any ordinary xray :)

then i worked on budgets for the office for around 5 hours then slipped in a quick little nap before the office called .. i need to remember to turn off my phone .. i really really needed a nap .. i haven't been sleeping too good lately ya know !!!

anyway, i just wanted y'all to know i survived my first radiation treatment lol

oh .. and i had a little time this morning to do a little before and after with the camera .. one picture is me before makeup, the other after makeup and i'm taking votes .. which one would you least object to if it showed up on your doorstep? ROFL (now be nice!!!)

#1 NO Makeup

#2 Makeup & BALD
#3 Makeup & Cap

now don't forget to vote on your way out LOL .. ((waving to my adorable niece Amy who dropped by yesterday and left a comment in my UK Journal xoxoxoxoxo)

Day 150

2005-11-20T07:09:00.000-08:00

My Quit
My Stats:
Your Quit Date is: 6/24/2005 6:30:00 PM Time
Smoke-Free: 148 days, 15 hours, 1 minute and 49 seconds
Cigarettes NOT smoked: 2973
Lifetime Saved: 22 days, 17 hours
Money Saved: $521.50

pardon my showing off just a bit .. 149 days of being a nonsmoker .. it seems like a lifetime

these stats are from www . quitnet . com .. they really helped me during the hardest first few weeks when i quit smoking, but even now i can't wait to see my current stats .. especially how much lifetime i've saved by not smoking

i'm seeing more and more people who really do want to quit smoking .. i see that as more lives being saved .. a few weeks ago there was a brief discussion in one journal (forgive me for forgetting which one lol) about how outraged one journaler was when a city decided to ban outdoor smoking at public places .. a few months ago i would have stood on her soapbox, right along with her, in an attempt to voice my displeasure with the government telling people what they have the right to do in public

i have such a different perspective now .. why do people think they have the RIGHT to smoke in public? with all the proof on the damages of second hand smoke, why would any reasonable smoker want to risk hurting another person with their own bad habit? with all the proof that smoking kills .. how can anybody feel proud about killing themselves, let alone in public?

i can remember when it was COOL to smoke .. we had cigarette ads everywhere .. we had the marlboro man .. plus a handful of other cigarette icons .. smoking was glorified in the movies and on TV .. everybody smoked and it was acceptable .. slowly my daughters generation is realizing how dangerous and NOT cool smoking is .. one of the T-shirts being sold now is a cigarette with the circle and slash through it and beneath says "there are much cooler ways to kill yourself"

on top of all this, i was watching a show a few days ago .. about problems with littering in public places .. i had NO idea that almost 30% of littering is done by cigarette smokers .. tsk tsk tsk

just because you are killing yourself, doesn't give smokers the right to be rude too eh !!!

being a person who is a beginner nonsmoker, i'll be the first to admit that having to walk through a group of people standing on the sidewalk, smoking, really IS difficult for me to do .. i guess i'm just getting to the place where i'm starting to resent having to breathe other peoples cigarette smoke ::shrugging::

i'm all for banning smoking in public places .. lets stop exposing our children to cigarettes .. stop smoking in public for the children .. our children .. and keep our fingers crossed that they remain smarter and wiser than my own generation

::stepping off my soapbox:: sorry, i just had to get that out of my system :)

i've realized that the last week have been a transition period for me .. in changing from the massive chemo treatment to the radiation and chemo treatment really has been a transition period

i don't know any of the people .. the employees, the patients .. i don't know anything about the procedures, the side effects .. i'm having to learn so many new things .. i have always taken comfort in routines .. i kinda get shaken up when somebody screws with my routines :)

what is shaking me up the most are the change i'm noticing in the patients .. up on the second floor, in oncology .. we all sat around dressed in street clothes .. some of the females donning various head covers, hats, caps, wigs .. our faces a little drawn and tired but mostly in good spirits .. except for the fact that we were all hooked up to IV's, a pretty normal looking group

downstairs in the radiation oncology waiting room, we are actually a pretty sorry looking group of patients sitting around in hospital gowns that don't come close to fitting us .. each and every patient i've met so far has an exhausted look on their face .. walking slower, needing assistance in standing up .. some still smile, some still laugh .. but they're different .. tired .. one female patient decided to drop her gown and show me her scars from her double mastectomy and the results of radiation .. her raw red skin that was peeling off in chunks .. i'm not sure why she thought i wanted to see her scars .. i didn't .. like i wasn't scared enough

anyway .. i've got piles and piles of budgets to get working on for the office .. not like i'm in ANY frame of mind to be concentrating on details like this but i kinda don't have an option .. i hope the rest of y'all enjoy what is left of your weekend :)

Day 149

2005-11-19T09:16:00.000-08:00

i just have a moment this morning .. my daughter came over last night and this morning i'm taking her to her aunt's hair salon where she works a couple saturdays a month

it feels like i spent the week topless, in physically uncomfortable positions while strangers drew all over me with felt tip pens in order to get me set up for my radiation therapy starting on monday (in addition to the stickers, 3 tattooed dots, a couple of "x marks the spot", i now have a drawing looking remarkably like florida between my breasts) .. i have to confess that its probably been the most stressed i've been since this entire mess was discovered back in june

what i've discovered (much to my chagrin) is that the tattoos they've placed under my arms and in the middle of my chest are aligned with the red laser lights from the radiation machine so that the radiation is directed towards my tumor and lymph nodes .. and it is necessary that i be NUDE from the waist up in order to complete the alignment .. tuesday i walked out of radiation oncology noticing (hey, i may be old but i'm still a woman!!) the two very young, good looking male radiation technicians, thinking to myself "well, i'm glad i have female technicians" only to arrive friday to realize they've changed my technicians to guess who?

i must have been blushing all shades of red having these two young attractive men remove the sheet from my chest, peering closely at my chest, moving closer until their eyes are mere inches away from my chest, close enough i can feel their warm breath .. and i manage to whisper "ok guys, this is so embarrassing" .. to which one replies .. "don't worry, this is all medical to us" .. like THAT was supposed to make me feel better !?!?!?

i am not so old, nor so sick that i can't remember a time that i would lay topless in front of a male and it had AN AFFECT !!! this really was humiliating .. and they've got me signed up 5 days a week for the next 6 weeks .. sheesh

since i decided to do the last week on my own .. i didn't get the benefit of the anti-anxiety pills or pain pills (until AFTER the appointments) and then, depending on how much office work i had to get done in the few hours left of the day where i felt i could function properly

a couple of times last week, i'd arrive home, stiff and sore from laying on the xray table for 2 hours, pop a pain pill, get comfy in my bed, only to have my phone ringing off the hook for the entire afternoon, employees needing assistance or direction on a few issues that have come up at the office .. they apologize for "bothering me" and i apologize for being out of it and doped up and not thinking clearly

the wonderful part of the week was my long awaited appointment with my chiropractor of 25 years .. i have to admit that after knowing her this long, she really does feel more like a friend than a mere doctor .. and i gotta tell you, Dr Nancy knows her stuff .. within minutes i could actually breathe easier and it felt like i could take deeper breaths, stand taller and the tension in my neck was relieved .. i'm going to be making another appointment for next week, hopefully to tune up the rest of my back .. its amazing when a doctor can do something and you can feel the effects immediately .. i walked out of her office feeling more energized than i've felt in weeks

the best part i think, after i thanked Dr Nancy for arranging for me to make payments, she handed me an invoice that says "balance due ZERO" .. and then i got a pretty terrific Dr Nancy hug :)

and in response to Kathy's question "will you still have your chemo angels?" .. the answer is YES .. because (lucky me) in addition to the daily radiation, i get weekly chemotherapy on wednesdays .. but instead of being the 8 hour chemo, every 3 weeks, it will be 2 or 3 hours, at a much lower dosage than before

i am so hoping that i'm going to be feeling normal on thanksgiving this thursday .. i've got my daughter promising to cook dinner and i've invited my niece, nephew and sister to spend the day with us .. i'm not sure yet if they can make it over the hill, but i have a feeling my daughter is not going to be able to pull off cooking the entire meal by herself, regardless of her priceless intentions lol

i've got a couple of pictures here to show the markings necessary to get me hooked up for my radiation therapy .. not pretty by any means .. not exactly the kind of pictures i ever believed would be posted of me on the internet hehe .. but here i am during different stages of the preparation for the radiation simulation last friday

hilarious sheet guy

2005-11-17T06:00:00.000-08:00

this is perfect !!! to find a way to laugh at a time that has us all so frustrated .. Jimmy, aka Stupidsheetguy found a way

To Ad or Not To Ad...

you have to check this out .. it is hilarious !!!

thanks Jimmy :)

cheating? more radiation oncology

2005-11-16T14:07:00.000-08:00

is this cheating? merely moving my journal to aol.uk where the install to add advertising banners to personal journals hasn't occured yet?

so spank me .. when i was interviewed by The Washington Post it was because i was one person who "blogged for therapy" .. and i've been needing some therapy lately

moving from chemotherapy to radiation therapy has taken its toll on me emotionally as well as physically .. it was discovered during the bone scan done on July 7th, that i have arthritis in my neck, which would explain why i've been in so much pain/discomfort since i stopped going to my chiropractor over a year ago .. when she doubled her fee, even with insurance, i was no longer able to afford the two visits a year that kept me free from headaches

since the 4 mm mass was recently discovered on the left side of my brain, the question "are you suffering from recent headaches" suddenly takes on new significance

i decided it was time to spend my hard earned money, scrimping wherever i could, but it was time to visit my chiropractor .. but prior to making an appointment, i wanted to find out if she would consider accepting payments from me .. she's been my chiropractor for almost 25 years and never before have i not been able to afford her services .. and no, she had NO idea i'd been recently diagnosed with cancer .. so when she replied "pay me whatever you can afford, even $5 when you can, don't worry about it" really eased some of the stress i'd been feeling .. so tomorrow afternoon i have a MUCH needed appointment to see my chiropractor :)

tuesday was my first hands on appointment with radiation oncology .. i was so nervous .. nauseous, light headed, shaky .. my blood pressure was so high i had a very hard time hearing anybody speaking to me (when one of the technicians called out "i like your hat", i thought he said, "i like your TAT" and i was confused wondering how he knew i HAD a tattoo (if you're reading this Dee, i've gotten dozens of compliments on my chemo caps !!!)

after making me wait 30 minutes past my appointed time, the nurse went through a dozen documents, reading each one to me (heads up folks, i'm a visual person, NOT auditory in the least, so 99% of what she read to me went in one ear andout the other) all i remember from spending 30 minutes with her was that for the next 2 months i am not to use soap on my chest and i needed to buy aloe vera gel for when my skin starts reacting to the radiation

then two technicians led me to an xray room, stripped me naked from the waist up, laying on a hard glass table, arms above my head, proceeded to draw on me with a felt tipped pen, verified their markings with xrays, had the xrays verified by a physician and then made their felt tip marks permanent with 3 "tattoos" located in the middle of my chest and under both arms .. the tattoos were so tame compared to what i've endured with my real tatts .. mostly it was the discomfort, the muscle spasms from laying on the hard surface for almost an hour .. having muscle spasms, my arms going numb and not being able to move isn't my idea of a good time (hahaha) .. but mostly i think it was facing the unknown, alone ..

so far, thankfully, during each change in direction of my treatment, i've had somebody to hold my hand .. this one, except for the first appointment last friday, the radiation therapy, i'm beginning alone .. i think when i go with someone, have someone at my side, i'm stronger .. i think i hold it together for THEM .. cause i fell apart on tuesday, during my appointment, something i am not inclined to do

today i had the CT (or CAT) scan done .. it was done by the same technician as yesterday but with 5 assistants this time instead of one .. i even had a registered nurse (a tech can inject the contrast into my arm, but only a registered nurse can access my medi-port) at least this scan went quickly .. it was getting all my little marks lined up with the laser and then sticking the bb's onto the other stickers they'd placed on my chest to give the radiation techs landmarks in the xrays that took most of the time .. but thankfully, between the chiropractor visit tomorrow and the pain pills, i should be able to endure laying on hard flat surfaces for the next 6 weeks

we have a stimulation radiation therapy session set up for friday morning .. they say it takes about 20 minutes and again, its done for verification of the marks and also the stuff generated from the computer that was compiled from all my scans, reports and xrays

then, i believe, sometime next week, i start my daily radiation therapy

i have a lot more going through my head but my head is also killing me, my hands and arms are numb and my shoulders feel like a ton of bricks has been sitting on them .. time for a pain pill and some rest and relaxation .. it sounds like just what the doctor ordered :)

testing

2005-11-16T13:18:00.000-08:00

OK, so no spell check feature but so far, no banner either. knowing aol, the banners will eventually find their way over to UK and the other international journals, but so far, the coast is clear