Wednesday, December 31, 2008
so it's been awhile...
...i still have that last pesky drain, but it's not a huge bother (kinda)...the antibiotics got the better of me, but i've seemed to bounce back from that too...which is a relief! the scars are way less gnarly than they were originally and that's great also...things really are going well...
...the holiday has been great...tons of friends from LA visited and that makes me super happy...i think i overdid it a little (hence why i still have the last drain) but it's totally worth it...i am paying for it now though...exhausted...totally exhausted...all the time...but i'm managing, and again, it was totally worth it to see all those beautiful faces back in my life :)
...my body is still not my own...foreign figures and all...but it's getting better i think...coming to own it a bit more than i originally had...which is definitely a good thing, as i wasn't sure how that was going to pan out...now i think it's going to end up ok...but i'll tell ya this, i sure am looking forward to march when i get nipples!!! i never thought i would hear that sentence come out of my mouth, but how true it is!!!
Saturday, December 27, 2008
things are going well...
...a little more about anesthesia brain...basically my mouth feels anesthetized when i eat...really weird sensation...and i'm tired all the time...but besides that i think that i'm doing really well...
...the one drain is still producing heaploads...but that's to be expected...or so they say...it doesn't bother me really...i'm so used to having my little girl with me that it really doesn't bother me all that much...i mean don't get me wrong, i'll love it when she's gone, but that little #6, she's ok...
...something i dont' know if i blogged enough about earlier...the doppler...when i was in the hospital they had to check the blood flow in my breasts every hour for the first 48 hours and then every four hours after that...basically it's this little ultrasound machine that they run over the breast looking for the heartbeat in the artery that was reconnected...now this is a rather scary process...waiting to hear the heartbeat...because if they can't find it, it is back to surgery for me...while on the other side now...at the time it was super scary...running that cold machine over my boobie...waiting...listening...being so quiet trying to hear that heartbeat...and now granted they found it every time...it was just nerve-racking while they were looking...i dont' think i've really done this section justice...but i suppose you get the point...
...now i'm sleeping better...sometimes on my side even...which is really great because sleeping sitting up for two weeks is no fun! it's because i can't lay flat...my stomach is pulled too tight for me to lay flat...stand up straight...all that stuff...so basically i sleep sitting up and stand hunched over...though it is getting better everyday :) a little better everyday...
Friday, December 26, 2008
two weels...
...this recovery process has been amazing...watching my body heal...well the best that i can without actually looking in a mirror...i still haven't looked in a mirror...can't do it...not ready...the physical healing is a lot easier than the psychological...i can't really feel this new body yet, so it's tough for me to look at it...i do love my bellybutton...but the rest...i still feel my big belly even though it's not where it used to be...i can feel the weight of my breast pulling, but i have no other sensation...when i get cold i can only feel it in my body...it's really really really weird...it's like the feeling just stops at my chest cavity...and it doesn't hurt...it's not a bad feeling...just a new feeling...
...i still have anesthesia mouth...every time i eat my mouth feels a little numb and the food tastes just a little funny...it's really weird...amazing how long it stays in your body...this whole process has been amazing...learning so many new things about myself...what i'm capable of...what i can accomplish...i feel pretty proud of me :)
Wednesday, December 24, 2008
and then there was one...
...my mom and i went this morning, her pushing me through the hospital in the wheelchair, me trying not to freak out at the prospect of having something plucked from inside of my body...i think we both did our jobs well...
...this road i'm on now is so much different than that which lead up to the surgeries...this is a road to recovery, health, peace, happiness...that was one of fear, unknown, uncertainty...not in my decision, but in the happenings...what was going to happen, was i going to wake up, how was i going to live? but i overcame all of that...it happened, i woke up (I WOKE UP!!!), and i am just living...this journey is new, fresh, and so much freer...painful...but freeing...i love this journey!!!
nurse's apt today...
...anyway...things seem to be getting better daily...or so i keep telling myself...here's the thing...i am only really comfortable in one position...laying down with my back propped up...so it's either the couch or the bed for me...ah the monotony....it's redic...i wake up...take my husband (which has been my savior...you know one of those pillows with arms) and my pillow...and don't forget my shopping bag of pills...and move down to the couch...i'm there the entire day...save some excursions such as hospital, walgreens, or picking up my mail from my house...and then it's back into bed at night...it's tough...especially the time when i'm done being on the couch and not yet ready to get into the bed (btwn 7-9 usually)...that's the toughest time of the day for me...i get so rammy and there's pretty much nothing i can do about it...and now i'm waking up in the morning thinking to myself...ugh another day...which is so not my positive attitude shining through...i have to figure out how to turn this recovery time of mine into something really positive...keep my attitude up and spirits high...i keep reminding myself how much better off i am now...how much happier...but the monotony is still looming and encroaching on my space...stinkers...but so much better than before...
Tuesday, December 23, 2008
independence...
...until now...
...in the beginning of my recovery my mother was doing everything for me...well she wasn't doing any basic bodily functions for me, but she would have if she could have i'm sure...besides those however, she did everything...bathed me, brushed my hair (which became super greesy over my hospital stay and i was very attractive), fed me...everything...i mean my mother literally got into the shower with me to bathe me...how humiliating...i couldn't do anything for myself...
...but i'm doing better now...i can shower myself start to finish...and yesterday i blow dried my hair alone! that was a big one...now granted i need to take at least an hour nap after i shower, but i can do it myself...
...what i can't do is stand up straight...i'm still hunched over from where the sewed my belly together...so weird....i feel like i got sewn in half...really odd sensation...and now i have to stretch it all back out...not so easy...but i'm working on it...
...my pop asked me what my recovery goal for today is...i think that's a great thing to do...set a recovery goal for each day...yesterday i took a trip to the video store (which required a 2.5 hour nap when i returned) and today maybe i'll do something else...gotta think of what though...maybe walgreens would be fun...am i serious? maybe walgreens would be fun? is that really where i am in my life? apparently so...baby steps...baby steps...
Monday, December 22, 2008
my body...
...i feel so detached from this new creation...where's my belly? i think i can still feel it...but it's surly not still there...where are my breasts? i can see them...but i feel flat-chested...like i drop off from my shoulders...something of a ski jump...
...i haven't looked in the mirror yet...well i've caught fleeting glimpses, but i haven't really looked...i'm not ready...it doesn't feel like me...my head feels the same, and my legs feel the same, and my arms kinda feel the same...but my middle...my entire torso...it's not mine...it's some wu creation...from what i hear it's beautiful...but i can't see that yet...i can't feel that yet...
...even when i look down in the shower...scar running from one side to the other...literally the entire front half of my body was sliced open...i thought it would go hip bone to hip bone...but no no, it's the whole front side of my body...gnarly scar...i see the drains coming out from below the scar line...i imagine once they're out i'll have something of a sad face looking up at me...drain holes for eyes and scar for frown...but i'm not sad...i'm happy...though this is such a weird physical place to be in, it's far far better than the terrible psychological place i was in before...this place is way better...foreign body and all...
...one part that i love is my belly button...they had to craft me a new one, and it's so cute!!! i love it :)
let's try this...
...so after our 48 hour stint in the ICU...being woken ever hour for my doppler (the ultrasound that they move over the breast to make sure that the blood is a' flowin) and having spiked fevers of over 102, we were finally moved to our own room!!! it was wonderful...the hourly wakenings going to closer to four hour periods, though i think i lost count while in and out of my own dream states...my parents got a cot! so no longer sleeping sitting up in chairs or laying on waiting room floors...it was magic!
...so it's finally time for me to get up and do some walking...here i go...i got all of my bags and hook ups managed and ventured into the hall...pop taking pictures on his camera phone all the while...well after about ten steps i have this really weird sensation of wetness...from my waist down...pouring wetness...holy shit what the hell is going on!?!?! abort mission abort abort!!! i freak out...turn around and haul ass to my room...what the hell is going on!?
...as i later come to learn...some of my drains were dripping...which is totally normal, but no one warned be about that...no one warned me about this drain business, the leaking, the draining, the clogging...no one tells you about this part...the gross stuff...
...well needless to say, i had my first cry...i sat in my private bathroom and for the first time through it all, i shed a few tears...now this wasn't a total breakdown, but i cried...it was all just too much...
...but then the nurse came in and explained to me what was going on and i cleaned myself up and pulled it back together...back to bed for me...the walk was nowhere near the success i was hoping for...but a necessary experience none the less...
...so these drains that no one tells you about...two from each armpit, two from my belly...these long tubes with big bulbs on the end to suck the fluid out of me...gross...how to manage them? well in the hospital they were all pinned to the inside of my gown...which let me tell you was FUN!!! every time i stood up, which due to my hunched over position, i felt like a cow with utters hanging down...so friggin gross! but once i got home (the beauty of writing after the fact) my mother created me these little vests with pockets...so instead of pinned up, i just had to put the drains into the pockets and it was far more manageable! the little things....did i mention what an amazing woman my mother is? she is unbelievable...just speaking about drains, she takes care of them for me...empties them, measures them, strips them...everything...and it's all so gross, i don't know how she does it!?
...well about two days after i got home the top four drains came out...i had to go back to the hospital to have them taken out (hurt like a mo fo!!!)...but it was so worth it...i was finally able to move my arms again!!!! ah the little things...right now i am waiting to have the bottom two removed...i thought it would be this morning, but as it turns out i'm still producing too much on 6 and it looks like i will need to wait until tomorrow or the next day...no worries, i can deal....
Saturday, December 20, 2008
48 hours in the ICU...
...i've had this piece written for two days...haven't posted...every time i go to finish i get nauseous...so for now...no finishing this post...i'm trying...
Friday, December 19, 2008
...and we're back...
...i don't even know where to start, and to be honest, i'm overwhelmed at the prospect...so much has happened in that last week...
...it began a week ago last night...christopher came down...we stayed up most of the night...he fell asleep and i took a long bath...he said he'd set his alarm for 430 so that he could get up and shower...well i must have fallen asleep at 427 because the next thing i knew it was 513 and my parents were outside...i scrambled to get the two of us out of the house...which if you know christopher is no easy feet...luckily i'd pretty much packed the night before...well the week before (typical)...so i was ready freddy...
...out the door into the cold morning air...christopher and i in his car...following my parents as my pop raced down the back streets of the main line in the rain...scary!!! we got to hospital and there were were...four of us together....walking toward an exciting unknown...
...they took me into the room where they put this gown on me that had hoses where they hooked up hot air...very cool...my aunt judie and aunt flo arrive donning their dunkin donuts and smiles...dr wu came in and kicked everyone out...she drew all over my body and took pictures...then she left to speak with dr sabol, after which she redrew some lines...
...they then put in the IV and on came the drugs!!! vercet...yum...i started to giggle and my pop gave me a word to remember...blackjack....they wheeled me away and i thought to myself...if i jump off of this gurney now, will anyone notice???
...in the OR...holy shit...here comes the mask...
...and i wake up...still intubbated...elbows, heels, body, screaming in pain...i sit up...try to breathe...no luck..."cough" i hear...so i cough...and then AIR!!! yes, breathing on my own...my first words..."i woke up" i finally woke up...i'd been waiting for months to wake up...and i did it...I DID IT!!!! I WOKE UP!!!
...so they wheel me to the ICU where my parents and family are waiting...the first thing i said to them was...pop, i have one word for you...BLACKJACK!!! and everyone burst into laughter...
Sunday, December 14, 2008
Live from the ICU....
I've been here in ICU for 2 days now and things do keep getting easier. My nurses have been amazing, all with their own styles. The first one I liked the most, maybe because the drugs were the strongest, or maybe because she was so kind and gentle.Thats what I kept saying when they were taking me from the operating room to the ICU.Please be gentle...And I do think they try, but I bet it's a really difficult job.
Having been here 2 days, my fever has gone up and down, and it's been sometimes sweaty and gross. But they have me on morphine, so I don't mind the grossness so much.
But Pop is typing this for me....he and my mom haven't left my side. They rotate in shifts when they can sleep, but I haven't been alone, not even for one minute.
My pop played a joke on me by asking me to remember words that he told me before my operation. And guess what, for the most part, I remembered the words!
When I woke up, my elbows were in so much pain from having been stretched out on the table for so many hours.. I couldn't move my arms, and they kept looking at me like they were confused as to why...that was rather irritating.
Now it's time for a nap, sorry if it doesn't make much sense, but I just wanted to put something out there....Thanks to all of you for your continued support
Friday, December 12, 2008
see you on the other side....
...and i'm excited...i'm ready to go....like getting ready for a trip to disney...or something like that...but truly excited...no more agonizing...no more draining my social economy...no more of this...now people will be able to help me in concrete ways and i think that will make this whole process easier on those who love me...
...this has been quite an experience for me...for all of us...i know i'm not alone in my experience of this, and that we all deal in our own ways...but i'm ready to be finished dealing...it will be nice...next the physical...that i can deal with...the emotional...that's the real bitch...but 80 minutes and we're leaving for the hospital...let's get this party started!!!
...i'd like to take this last paragraph to thank you all for your amazing support...your comments...the time you've put into reading my blog...and the love you've shared with me...i truly thank you and i could not have done this without you...
...i'll be back as soon as they let me...rock on with your bad selves...and i'll do the same :) kick ass!!!!
t minus five hours...
...christopher is here with me...he's actually staying for the surgeries...which i clearly didn't expect...
...so i pretty much have no idea what to do with myself...we're watching a movie, but seriously? attention? right? my executive skills have been in the shitter for days...my house is basically clean except for all of the clothes that are drying in random places...boy do i hope they dry before i leave because i really want to leave a clean house...i never got my car washed...
...i'm packed for the hospital and my parent's except for my toiletries...i need those because i plan on showering around 3:30...i figure give myself an hour...long hot shower, shave, relax a bit...maybe a bath...hmmm....not a bad idea....anyway....get dressed...thundercats t-shirt...do my hair...pack up last minute belongings...run the dishwasher...
...i took off all of my essential jewelry...my mommom's chain, my aunt miriam's pendant, my chamsah, my west coast heart, my rings, jesse's bracket, marc's bracelet, cancer bracelet, mommom's emeralds, mom and bio dad's anniversary diamonds, cartilage hoop..belly button ring...which i'll never get back since they'll be cutting a hole around my belly button...anyway...that was weird...i live in those pieces...but it's more important that i live than i live in those pieces...i packed them up in a little bag with a rock from the western wall that my bubbie gave me...
...so i don't know if theses will be final thoughts...maybe i'll have more to say in a bit...but what i think about is that i can't believe it's here...i can't believe this is real...it's today...zero days left...be at the hospital in five and a half hours...this path i'm walking...i see the light...it's getting brighter...my heart is beating in my stomach...clonapine...pukey...darkness...resolve....i can't believe it's finally here...
...the fear of not waking up knocks...but i know that's not the case...so i don't answer...
...i don't really know what i've learned about myself through this process...except that i have the most amazing friends and family ever....they are unbelievable...the outpouring of love and support has been amazing...
...you know i was talking to christopher tonight, and part of this is the immortality factor...i still have that going for me...i'll never get cancer....but then the numbers set in....85% chance? 90? shit....i'm a numbers lady...not playing the odds so much, but analyzing the data...how do the data fit...what makes sense based on how the data comes back...this data came back a no brainer...and even though i feel like i'll never get caner now...i know i will...i mean i know i would...without this procedure...which is why i haven't second guessed myself yet...and i'm not now...no need...numbers are my thing...this is just a numbers game and i'm going to kick its ass!!!
...i'm stoked...i'm up....i'm ready....four and a half hours till we leave....
Thursday, December 11, 2008
6am...
...so i finished all of my reports...transferred all of my open cases to dan...and bounced...
...now i'm home...packing...doing laundry...getting things in order...
...christopher just texted...he's on his way down from new york...should be here soon....
...time to get it in gear...
...go team...
tomorrow...
...i got in the shower this morning and i thought...last time i'll wash these boobies? no wait, i'm going to shower tomorrow before my surgery, because who knows when the next one will be...i'll do my hair...will it stay straight during surgery and after...how long will i look presentable? until it curls up and i look like a rasta as my bro would say...
...remember the little things we've been talking about? well this is one of them...in other news my eyebrows are waxed and my hair is died...so they're something...
...one more night on the couch...one more night of being scared to sleep...one more night of anticipation...one more day of chasing clonapine with diet sunkist...it seems to be the perfect balance...one more day of droning on to you guys about all of this...about my fear...about my excitement...about my insecurities...about my neurotic thoughts...and about my waxing strength...which i must say is going strong...i threw up a few times yesterday and once already this morning...apparently my stomach isn't as strong as the rest of me...though my stomach is generally where i feel my emotions...
...i'm getting ready for work and i have a bright pink SAVE THE TA-TAS t-shirt on...let em say something to me...come on!!! if not now when!?
...i still have three reports and five background sections to write...better get to the office...
Wednesday, December 10, 2008
i should be writing...
...do i need the robe in the hospital...will all the things coming out of me...tubes, hoses, drains, whatever...fit underneath? i was given the most amazing robe by jackie and michael...but it's huge...so plush...it will never fit in a small bag...fuck it i'm taking it...
...do i need nighties or can i wear jammie bottoms? i have been given so many beautiful button up the front jammies with bottoms....can i wear those in the hospital? how long before i can wear bottoms? so i know i should pack nighties, but how many...and jammies are my preference...i don't want to be there and want them and not have them...fuck it i'm taking them...
...how long will i be in the hospital? how many wardrobe changes? why do i even care? i'm not going to then...i just don't want to be dirty...hospitals smell...i don't want to smell...i want all clean beautiful things...and i have them...i just want them with me...fuck it i'm taking it all...
how am i supposed to work!?
...i put up little notecards all over my house with positive thoughts...i took pictures that i was going to have made into a collage so that i could post it, but mcwilliams and i couldn't get it together...they are everywhere...it's great...my cleaning lady must think i'm nuts, but that's the least of my worries...my bathroom mirror says fight....
...and that's what i'm trying to do...be a warrior...but this warrior is beat...and i have so much to do...so much positivity to maintain...so many reports to write...three...but that's about 12 hours worth of work...good thing i don't sleep...i WILL get it all done before tomorrow...but seriously, how am i supposed to work?
two days...
...people are starting to call to wish me well...starting to send more personal emails...i'm never really sure how to respond...i feel like i keep saying the same things over and over...thank you, i appreciate the support, i love you too....it feels kinda weird...
...in these last few days...i can't handle anything...it's taking all my strength to stay positive...i am working from home today because apparently my office is not the best place for me to be...too many little things...too many unexpecteds....i just need to be here...cuddled up with tina...writing...writing...writing...and one more writing to end this small thought....
positivity attacks?
so here i am...4 pm...in my office, writing reports...and this mother...this ridiculous mother who i thought i was finished with months ago (and happy about that) left me a voicemail after having her kid's teacher call me...she wanted to amend my recommendations...which i hadn't even told her yet!!! so i decide that me calling a difficult mom right now would not go well....so i sent her an email instead (yes i have her email because there was a period of time where she was emailing me every time this kid took a crap!) just saying that i thought her message was a bit premature and that i would be in touch as soon as i knew something...well she emails me back demanding that i write a letter to the school district so that they will fund my recommendations...and she calls me danielle...she is my ONLY patient that calls me that...
...now in a normal day this is nothing...i can wrap that with my eyes closed and my brain shut off... but today...what happened? everything got black, i couldn't get a breath in, and my face when sheet white (or so i hear)....panic attack...hasn't happened in a few weeks...but holy crap did i lose it today...i packed up like five bags of books and computers...and a protractor?!?!?! and got the hell out of my office...not to return till thursday...i put an outgoing voicemail to call carla, i emailed the practice, and got the hell out...still way short of breath and trying not to puke...it was awesome...
...so i went to my sister's and spent time with my niece and nephew (so cute)....and i think by the way i looked when i walked in that she knew i needed something...so she took me to get my eyebrows waxed...something i have been fretting over for days now...no time no time who's got the time!??! it helped...my niece and nephew help...the glass of wine helped...
...so on my way home it started again...tight chest...thoughts of getting in bed...thoughts of the fear...scared to go to bed...last night jason talked me to sleep...i can't ask him to do it again...will i sleep tonight? i know i can't get into my bed...that's for sure...another night on the couch? sign me up if i could just sleep...
....so it's the anxiety dinging me now...but i was being so positive...although i may have shed one tear somewhere between my panic attack and my clonapine...but seriously...i'm so up for this...nerves? maybe what i am calling anxiety is nerves? are they that different? i'm so ready...but i can't handle the little things...the unexpecteds...i hope to coast through these next two days...no bumps in this gravel road...
Tuesday, December 9, 2008
mania and the like...
sleeping on the couch with all the lights on....
...so needless to say i couldn't sleep...well i have to tell you an unexpected friend came out of the woodwork...i had called him earlier that evening...when i was making all of my..."i can't sleep west coast calls"...and no one was home...or no one was available....and then he called me back...he let me stay on the phone with him...just talking....about his life and experiences....what i'm going through...just let me talk...just talked to me...for an hour and a half...until after two in the morning...when my eyes finally started to close and i finally started to find some peace...he just talked to me....apparently all anyone can do is just talk to me...
...and for any of you insomniacs out there....gimme a buzz....i can't imagine the nights will get easier...but as long as i maintain my strength during the days...i will be ok...i will be ok for the next three days...three more days...
Monday, December 8, 2008
it comes in waves...
...in an earlier blog i said that i'd be more forgiving of myself should i falter...and while i don't think this is faltering, i need to be more forgiving of myself right now...that i can't think of the perfect thing to say to take away my friend's pain....that i can't handle listening to anyone else's pain right now...that i can't handle the little things...that it's all i can do to stay positive for myself...and i want to be perfectly positive...and that's clearly not happening...for that i need to forgive myself...to accept myself for who and what i am...and who i am is strong...what i am is healthy...
...i am not a perfect person...i am not a perfect friend...i am not a perfect daughter...i am not a perfect sister...i am not a perfect doctor...i am not a perfect person...but in this minute....i am the perfect me...even if it means i'm not perfect...
tough to work...
just checking in...
...i woke up with the is my head...and belted it out in the shower..
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a woman and her will to survive
So many times, it happens too fast
You change your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive
It's the eye of the tiger, it's the cream of the fight
Risin' up to the challenge of our rival
And the last known survivor stalks her prey in the night
And she's watchin' us all in the eye of the tiger
Face to face, out in the heat
Hangin' tough, stayin' hungry
They stack the odds 'til we take to the street
For we kill with the skill to survive
It's the eye of the tiger, it's the cream of the fight
Risin' up to the challenge of our rival
And the last known survivor stalks her prey in the night
And she's watchin' us all in the eye of the tiger
Risin' up, straight to the top
Have the guts, got the glory
Went the distance, now I'm not gonna stop
Just a woman and her will to survive
It's the eye of the tiger, it's the cream of the fight
Risin' up to the challenge of our rival
And the last known survivor stalks her prey in the night
And she's watchin' us all in the eye of the tiger...
Sunday, December 7, 2008
a turning point...
...up until now i have been knocked down many times...and i've gotten up each one...maybe not of my own volition...maybe not using only my own two feet...but i've always gotten up...i will get up from this too...i will get up and i will be even stronger...as much as i hate that saying...i will be stronger...something like the ironman of life i would think...ironwoman? iron-something-or-other...platinum? titanium? something that is unbreakable...i will be unbreakable...i am unbreakable...
...i beat the nothing...i will beat the scoop and fill...i can beat whatever you put in front of me...i am a bulldozer right now...get out of my way...i no longer need to be lead...i now need to be followed...walk in my wake as i forge ahead...but please stay behind me because i may falter...
...if i falter i will forgive myself...i will let you carry me for the moment and then i will get back up and forge forward (visions of a mosh pit come to mind)...i can do this...i will do this...i have to do this...for me...for my mom...for my family...for my friends...for sue...for life...
a great moment...
...i'm sure it's still going to be a minute to minute kinda thing...but this minute i feel the fight...i've got to get excited...i have to look at it as the big game...get up for it...i have to break free of the negative...even though it's so much easier to feel...i have to break out of this cage of fear and negativity...it's not good for my body and i need my body in tip top shape for friday...
...so keep the prayers coming...keep the positivity coming...keep reminding me that this is the fight of my life and i'm going to kick its ass...i will kick its ass...i will kick its ass...
...please lord let me hold on to this moment...let me remember this feeling when i start to crumble...let me forgive myself when i am weak and let me have the courage to be strong...
am i really 30?
...i moved back east to be with my family...and while i mourn my west coast life every single day...this is why i am here...to be with them...so that they can be with me...so that i don't miss anymore years of my niece and nephew growing up...so that i'm there for the birthday parties and the family gatherings...that's why i'm here...but do i mourn the loss of my life in LA...for sure i do...
...speaking of mourning...i overheard my pop talking to my mom through my sobbing yesterday...and he was talking about this as mourning process...and i hadn't thought about it like that...but it is...i am mourning the loss of my breasts...everyday when i take off my shirt to get into the shower i see myself in the mirror...i see my breasts and i know that i have only days left with them...am i really 30? i am sad to lose them...they've been a part of me, obviously, forever...and friday...gone...forever...no more boobie meat for me...tummy meat sure...boobie skin sure...but real live boobies...not for me anymore...and i'm sad...sad to see them go...i'm just so sad...but there are many stages to grief and sadness is just one of them...where's the anger stage? did i miss that? am i angry? i think i might have skipped that because i'm not interested in the oh poor me approach and i think that's what anger may make me feel...i'm not sure...maybe i need the anger to get the fight together...something to contemplate i suppose...
Saturday, December 6, 2008
so today...
...i went with my family today to hoboken to move my brother into his new place...i feel i've lost him in a way...but never had him all at the same time...he's a free spirit my brother...but he loves me...so much...and i love him too and it's sad for me to be far from him...i hadn't thought that that might have been contributory until my mom brought it up...maybe it is...i'm not sure...today was such a blur of sadness and pain that i can't figure out the exact catalysts...i just woke up this way...
...i woke up crying and i cried all day...i was heart sad...brain feared...stomach sick...and life empty...today was not a good day...
...we went to dinner tonight and my mom said that if all of the love and support that i have could carry me through this we'd all be just fine...but today it feels like it can't...and please no slight to any of you who have given of yourselves to me in such a full and real way...but today i can't feel it...i just feel sad and defeated...but defeated about what? i haven't lost yet? i'm not going to lose this battle...but i guess defeated in the shred of dignity that i have tried to maintain through this process...today i had no dignity...my words slurred from the clonapine (two before 11am)...my tears fell relentlessly...and spirit was broken...how many times can i break till i shatter?
...i am writing from my parent's house...i am going to sleep here tonight...i can't be alone right now...it's too much...too much for all of us i think...this is all too much...six more days....
a restless night....
...i lay there, feeling tina's warmth cuddled up against me and i just feel scared...last night was my last friday night with my boobies...today is my last saturday with my boobies...it'll be a week of last days...and with every thought of the "last" it brings tears to my eyes...it's getting so close...the hospital, the doctors, the hospital...did i mention the hospital? i feel like i just want it to get here...i just want to face this and have it behind me...instead i'm stuck in this holding pattern...circling the airport...nowhere to land (typical philly)...and i'm running out of gas...
...it's nice having friends in LA...they talk to me when i should be sleeping...but who sleeps these days...i don't...and if i perhaps do find a minute of sleep i'm jerked out of it with some kind of thought...of the surgery...of the recovery...of my family...of my friends...and last night...last night i outlasted two LAers...they were able to fade away into sleep before i was...3 am...4 am...5 am...6 am...7 am...8 am...my brother wakes up...finally someone to talk to again...shouldn't there be a hotline for this or something? the i'm terrified of everything in my life and i can't sleep at night hotline? sounds like something some eager psych intern should man...the graveyard shift...when pathetic souls like myself can't sleep and the rest of the world...or at least the rest of the continental united states...can....
...i used to be such a good sleeper...and i used to be strong...i've weathered so many storms...and come out scathed yes, but i've come out of them stronger...and while i know that will ultimately be the same fate of this journey...i truly wish that i was able to walk this path with more grace and less fear...more chin to the sun and less tearful face to the ground...i want to be one of those people who just breezes through and doesn't let it get her...who can withstand anything and glide gracefully through even the most difficult of times...but i am not her...i am not her...i'm just me...sad, lonely, and scared...even though i know i'm not alone...i am...even though i have more support and love in my life than i ever imagined...i'm alone...at least that's how it feels this minute....this morning minute that came after hours of night...
...just the other day i wrote about how mornings are full of hope...how each new day can be a great one "shiny and new"...today that feels like crap...like how could i have had that fleeting hope? how did i hold onto it in those minutes...why can't i find it now...feel it now? why are the tears flowing down my face as i write this? where is that strength you speak of now? this is just too difficult...
Friday, December 5, 2008
not too bad...
...but overall not too bad...i did take a clonapine on the way in...but that's pretty much par for the course these days...the edge is too rough not to take it off...helps with the fear...makes it far less gripping...and of course my mom was with me...always by my side...so that is a constant source of relief and support for me....
...overall...and this may be the hooch talking...not a bad day...
...tonight matty t is coming over, so that will rest my mind for a few moments...
...seven days...seven fuckin days...
this is a quick one...
...last minute prep stuff...looking for more nighties...dying my hair (nice and easy 114A...you can have it too!!!)...getting my eyebrows waxed...all the little things that need done before i jump on this new rollercoaster...one that i think i'll have far more control over than the one i'm riding with no seatbelt right now...maybe that one at least they'll give me a seatbelt...something to ground me, if not just for a moment...
...the continued support has been amazing...the response to my blog overwhelmingly positive...the outpouring of love...unbelievable....i'm so blessed and so scared all at the same time...today is a very real day....too real for comfort....when i went to sleep last night a wave of terror came over me...i called a friend to tell me a story but he wasn't there...i told myself a story instead...a modicum of self-sufficiency? that or i passed out into my self-induced coma....either one...i'll take it...
...the timer dinged...here i go...pre-op here i come...
Thursday, December 4, 2008
pre-op tomorrow...
...anyway...tomorrow is my pre-op...my mom canceled her trip to new york to take me...she's too good to me...and i'm worried that it's just getting started...i'm worried that she'll spend too much energy on me and not take the time to nurture herself...that'd be typical...and this whole thing is so far from typical....mom, i hope you're reading this and i hope you are sure to make the time to nurture yourself through this...i know you may not know how....but i'll help you think of it if you promise to do it...
...so anyway again....tomorrow is my pre-op...makes it pretty real...taking my blood "just in case..."...doing all of the pre-operative things that you do to prepare for the operative part...the operative part...oy...i wrote about being scared of dying...which i am...but it's more than that...i'm scared of the word, operation...scared of the knives...which i know i'll be asleep for...but they'll be there....oh for sure they'll be there....i'm scared of my surgeons sneezing...scared of the anesthesia...scared of how i'll feel when i wake up...scared that i'll still get cancer...scared of everything it seems...but this minute, this minute i'm on a high, manic or not, and i will get through this minute and all of this fear...
1:45...
...one of my blog followers, who is in a situation very similar to mine, asked what i am so afraid of this morning...and here it is...i am terrified that i am doing this and that i will still get cancer...i'm scared that i will have just enough breast tissue left to become affected, but not enough to find it early...that tiny bit of affected tissue buried deep beneath my belly fat...growing...metastasizing..until it's so huge they can't help but either to find it or to tell me to buy a bigger bra...and by that point in its evolution, i figure it will for sure kill me...so that's what i'm afraid of...getting cancer anyway...dying anyway...all this just to battle cancer anyway...
...i read a friend of a friend's blog about his battle with cancer...the chemo...the sequelea...i watched my mom go through chemo and its sequelea...i don't want that for me...not that any of us do...but i don't want someone i love to shave my head, i don't want poison pumped through my body, i don't want to die...i guess i'm just afraid to die...be it on the operating table next friday or at the merciless hands of the cancer...
...i know that if i die i will be with the ones i love who have passed...and i will be able to watch over and protect the ones i love who continue on...but i want to be here damn it...i want to get married, i want to have kids, i want to have grandkids...i want to live the life that i envision for myself...i suppose i should pray...but when i try to pray all i can think of is the prayer that mommom and i used to say before she tucked me in at night...
I pray the Lord my soul to keep,
If I shall die before I wake,
I pray the Lord my soul to take...
Angels on my pillow...
...thank you all for being my angels...
a morning of hope...
...but i'm used to the morning thoughts...they've become part of my day...and they stay with me, but it's when i let them get me that it all comes crashing down...
...i name things...my depression was the nothing...and this, well this i've named the scoop and fill...eight days till the scoop and fill...it makes it a little easier when things have wacky names...i imagine them literally scooping out my breasts, leaving some shell of skin behind, cutting out my tummy and dumping it into the cavities where my youth was taken from...kind of like stuffing a turkey at thanksgiving...only my stuffing is literally another part of my body...the term keep it in the family comes to mind...
...but today, today is filled with hope for calm in the minutes to follow...i am working from home today...too much commotion in the office on thursdays, too much to do before i leave the office (four more work days) to waste the time listening to the chatter...i have eight reports left...three of which i hope to finish today...focus on the writing...on the patients...on their problems not mine...immerse myself in work...low and forward...nothing gets in but work...that is my goal for the day...that is my hope for this day...
Wednesday, December 3, 2008
tough day number one zillion...
...i feel like i am at the bottom of a pit...looking up at light i can't reach...the rope of strength that you have all offered me...just out of my grasp right now...this minute is difficult...this minute is sad...this minute is lonely...
...i do have hope that the next minutes of my life will be easier...maybe after a nap...maybe after a phone call from an unexpected friend...maybe after a phone call from an expected friend...maybe after all of this is over...how many minutes in nine days? can i make it? i know i'll make it...time won't stop for me...not for any of us...i wish it would sometimes...what was that show? something about swinging from a star? where she would put her fingers together and time would stop? out of this world? i don't remember but i wish i had her power...or an invisible jet like wonder woman's to take me away from these feelings...to get me out of my own head for a minute or five...can an invisible jet do that? i think so...i hope so...someone send me an invisible jet...and a lasso while you're at it...i'll lasso up all the warmth, positivity, and hope in this life of mine and i will fuel my invisible jet with it and fly far far away from these minutes i am struggling to withstand right now....
...nap time...i pray for peace...
Tuesday, December 2, 2008
reality...
...i'm thinking about packing...what to take to the hospital, what to pack for my parent's house, where i will be staying for the first week or two of my recovery...until i can be quasi-independent...who knows how long that will be...my wish is that the recovery will be speedy and that i will heal quickly...becuase honestly...i am looking forward to the time off of work..for the first time in my life, no tests, no homework, no readings, no reports, no eppp, no licensure, no work!!! for the first time in honestly my entire life!!! i'll be able to relax, with nothing over my head...healing...it's going to be a beautiful thing i think....hanging out with my mom...watching tons of general hospital (i've been saving up on my dvr)....
...i wonder what will happen with tina in the beginning...how can i be near her and not have her hurt me? for those of you who don't know tina, she's my extremely energetic dog who can sometimes, most of the time, be a lot of love...but i worry about her...i mean i know my parents will care for her...but it's still something i think about...
...i wonder about lots of stuff like this...but that's actually what i'm trying to focus on in this minute...the things that i can control...like how many nighties i will have...remembering my cell phone charger for the hospital...because when i'm thinking about those things i'm not ruminating on the negative...and that's my downward spiral...the one that i am desperately trying to climb out of...and with the rope of support that you have all thrown down to me...it's getting easier....
Monday, December 1, 2008
it's the little things...
...like today...i was in a car accident...a fender bender really...i'm fine...but i just started crying...and i haven't really stopped...it's just got me...i should be able to just deal and i'm really struggling to do that...it's like all of my energy goes to maintaining from minute to minute...and that's literally how i'm doing this right now...not a day at a time, but a minute at a time...if i can just get thru this one, it will take me to the next...and then get thru that one and so on...but there are so many minutes in the day, so many in the week, and so many until the 12th...i often wonder how i'll do it...besides the inevitable passage of time...
...i didn't sleep last night...couldn't get there...i guess coming off of what was such an amazing day made it difficult for me to find peace in the onslought of thoughts that flood me in the night...and that may be also why i am struggling so much right now, as i sit here with tears streaming down my face...tired...scared...defeated by the happenings of the day...i couldn't stay at work...it was too difficult...so here i am...back in pjs...back on the couch...the nothing looming...
...i know i have to fight...i know i do...fight the nothing in these moments...fight for my life in surgery...and fight to recover without being a super drain on all of those around me...it's just tough when new obstacles crop up...i don't feel equiped to deal effectively...i feel even weaker...and that's when the nothing creeps in...and that's when i have to fight the hardest...the same time i feel i have the least in me...right now it feels like i don't have anything in me...not to give to anyone else and not to give to myself...
...i will try to sleep now...sleep away the sadness by trying to dream of yesterday and blessed minutes that i was able to share with friends...
Sunday, November 30, 2008
today was a good day...
...boomer, one of my closest friends from LA, came with his new girlfriend...now normally i don't like my guy friend's girlfriends (i'm a touch on the protective side)...but she was remarkable...i really dug her and i feel so happy that she's there with him....my brother came also...so did tyler our friend...
...we had monkey bread, drinks, quiche (and yes real men ate it), and potato casserole (that did not come out well)....it was great...and the company...wonderful...
...athena and i spoke at length about what is happening with me right now...boomer listening in a total dude way....she was so attentive...invested....interested...and i just met her...it was awesome...i felt like i was speaking with a true friend and i think that speaks loudly to the beautiful soul that boomer is...able to bring two people together in a special and real way...not many people can do that effectively...i am so blessed and lucky to have him as a love in my life...
....so today was a good day...i spoke about what is going on, but i didn't really think about...no ruminations, no agony, no sadness...today was a good day...
today is a better day...
...but anyway, today seems to be a better day so far...jay told me to enjoy the dusk because everyday is shiny and new, though he added that days might not be shiny...i think today might even shine...the dusk certainly is...
...i'm very happy this morning because i am making brunch for boomer...he's such a part of my heart that i can't wait for him to get here...to be in my space and just feel more whole...all these holes in me right now...the far away friends, the unknown, and the fear...that damned fear again...always sneaking around, creeping up on me, tearing at me...but hopefully, today, for even a short time, i'll forget the fear and truly live in that moment we are always talking about...
Saturday, November 29, 2008
the shoe is slipping...please don't let it drop...
...i'm not sure what's got me really...i went shopping today for nighties that button up the front...now i'm a pj wearer, not a nighty wearer...so that simple change of mindset was enough to jab at me a bit...something about the preparation for this event...the buying of the necessary items, the planning of the email and phone chains...it's getting so much closer...13 days...less than two weeks...good news being that 14 days from today i'll be on the road to recovery...that's what i'm trying to focus on...but it's tough...tougher than usual today....
sleepovers and the like...
...but she came last night (she went to grad school with me but wasn't in my class)...and we spoke and she really came through for me...it was nice to say what i had to say and to have her hear me...she really made me feel heard...which as you all know by this point is what i really need right now...so it was good...very good...she slept over :)
we started as 14...we graduated as six...
...so last night my girlfriends from grad school rallied around me and all came over for a little impromptu girl time...we drank wine and ate chinese food...and it was good...they were so interested in how i am doing in what's happening with me...they've seen me through a lot...my grandmother passing...my biological father and his mishigas...and the nothing...when the nothing came on strong and i couldn't get out of bed, petra was the one who literally called me in the mornings and told me to put one foot on the floor, cross my room, and turn the light on...granted most mornings i went straight back to bed...but these are the girls who saw me through the nothing...and they are with me again now...they are such a special group and i am so blessed to have them...they are some of the most supportive individuals i have ever come across and as a group they are unstoppable in their love and light...
Friday, November 28, 2008
fridays...
...sometimes, and i've never said this to anyone, i fantasize about pulling out...just saying fuck it and taking my chances...i mean how about if i get cancer anyway? all of this for nothing? i mean seriously...what if i get cancer anyway? it will surely kill me...
...so i'm doing this...and i know i've opted for life...to kick my breast cancer chance's ass...but i do sometimes think about what it would be like not to do this...i think that would be worse...every mammogram, every mri, every ultrasound...waiting for the phone calls...that would be worse...
...so it's tough on fridays...the realness of it all...the count down...another week gone by...two to go...next friday pre-op visit...the friday after that...the big show...it's all happening...
thanksgiving thoughts....
Thursday, November 27, 2008
i slept...
...i woke up and my first thought was...did that just happen? did i really make it through a whole night!? it was great :) great way to start this day...this day where we give thanks...and i have so much to be thankful for...you have all shown me just how much...
...this journey is teaching me so much...and not just about myself, but about what it means to really be a friend or in a family...people i thought would be by my side aren't...those who i thought wouldn't be with me are...it's amazing...times like this really gives insight into those around you...true colors i guess...can't hide from them...
...so interesting how we all deal...how we unite...how we divide...as a scientist this is the amazing part of my journey...as a human this is the eye opening part of my journey...i'm thankful for it all...i'm thankful for you all...those who have risen...those who have fallen away...for all the true colors you've allowed me to see....thank you...
Wednesday, November 26, 2008
getting ready...
ew...
...i just never want that again...i am doing this so that i don't have to have biopsies anymore...so that i don't have to wait for that phone call...the one that tells you if you have cancer or not...i never want to wait for that phone call again...i was lucky...that time...
...i remember when my mom found out she had ovarian cancer...i was there for that...when she had breast cancer i was at bucknell...i mean i went home...but i was at bucknell...a sophomore...black pants, white button down, oversized sweater, pi beta phi....but the ovarian cancer....i remember walking into the kitchen...seeing her on the couch in the living room, in her white mom nighty...i walked in...she stood up...i looked at her and said, you have cancer don't you...she said yes...we hugged and cried...i remember that...
...i don't want my kids to have a memory, or memories, like that...i don't want anyone i know to have memories like that...not about me...not to hurt for me...i don't ever want those close to me to hurt for me...because as i found out in the last few weeks from a very close friend...when you hurt i hurt...it's not fake...it's real...and i don't want that for you...not for any of you...not because of me...
waiting for the other shoe to drop...
...so why i'm waiting for the other shoe to drop? well, because it's been a good day...yesterday was a good day...today was a good day...i desperately want to live in the moments of this good day...but i fear for the destruction that may come when i least expect it...for the moments that seem insufferable...i want them to all be like this...not like the days before when i was a cold, wet, shell of myself...i want to hold onto this and never let it go, but i fear that it will be torn from me...torn from me without warning...and then where am i...pathetic...pathetic again...
...but for now things are ok...and if you read yesterday, ok is the new great...so here's to it!!!
Tuesday, November 25, 2008
so this is where...
...so here's the part that's really sick...i am totally beating myself up for how much support i've needed over the last few days...telling myself that i should be strong and self-sufficient...independent and, well, strong...i feel embarrassed that i've relied on you all so much...all pathetic and woe is me...ugh!!! one minute i'm falling apart and the second i'm back on my feet i start in on myself with how i shouldn't have stumbled in the first place...i know, sick, right?
the middle...where is the middle? i want to live somewhere between broken and hardened...a place where i can accept support while still standing on my own two feet....sometimes i can find that place, for a moment sometimes i can find it...today is not that day...but i have hope that tomorrow could be...
...in the words that a good friend wrote to me today, "Every day is Shiney & New! Well not always shiney but definitely new, so make the most of that new dawn everytime!" maybe tomorrow i will live in the middle....
The day is going well so far...
Let's put on our boxing gloves and fight like kangaroos in a dust bowl...
...i wasn't ready to blog it initially...i still felt defeated and weak...but today is a new day...today i will put on my boxing gloves and try to fight...i know there is no try, there is only do...but i also don't make promises that i don't intend to keep...so i will try today...i will try to fight the fear and the insecurity...i will wear my boxing gloves proudly, puff up my chest, and try to feel the sun...let's see how this goes...
Monday, November 24, 2008
You call me strong...
...you call me brave...i am not brave...i am realistic...
...you commend my choice...i didn't have a choice...
...i wish i could see myself the way you see me...i wish i felt the characteristics that you attribute to me...i could use a little self-perceived strength, bravery, and credit right about now...the fear is numbing...it grips my stomach, my chest, my throat...sometimes i can't breathe...like my insides are in a vice...i could use that strength you speak of to break free...to destroy the vice, inflate my chest, and turn my face to the sun...but like i said, the fear is numbing and i can't feel the sun...
...i could use the bravery of which you speak...to kick the fear's ass...but as it's name implies, i am afraid of it...to stand up to it...to shake it and tell it to get the fuck out of my life...to leave me alone and let me do this in a more positive and free way...i want to be free of this...
...and the credit you give me...for this choice i've made...i don't deserve credit for that...there is no choice when the other option is cancer...THERE IS NO CHOICE WHEN THE OTHER OPTION IS CANCER...
My Appointment...
...as for what was said...we talked about ways to keep the scarring to a minimum, which it sounds like we're going to be able to do...make a larger incision around the nipple as opposed to a smaller one with an additional one that goes from the base of the nipple to my chest wall...then it sounds like she should be able to minimize that scar even when she recreates my nipples in a few months...then a month after that with the tattooing, it sounds like it might actually not look so terrible...we'll see...literally...as for my stomach, that pretty much sounds like it's going to be a butchered mess...but my appendix scar is a thin light line, so maybe this one will be too? who knows...again...we'll see....
...so overall, my mom felt relieved following the appointment, like she has more hope or something...me not so much....but i don't know what would make me feel relieved...waking up...waking up will make me feel relieved...i am living to wake up...
Sunday, November 23, 2008
Your comments...
...i started this blog so that people could hear my story...so that those out there would know and understand what i'm going through, and so that strangers who are walking my path might find me, might relate, might find some solace in my journey....but what i've found is even more support than i could have imagined...this is amazing for me....this makes it easier for me....
...marc told me that my blog helps him to understand what i'm going through...i thought i was able to explain on the phone, talk about it to death, go over and over it until i make myself sick...until i feel pathetic that i can't stop talking about it...until i feel like a burden and a drain...that's how i feel when i talk about what's happening...talking all the time, i never shut up, it's got to be enough already....marc, jay, christopher, jesse....you listen and listen, enocuraging me to talk...but it must be difficult for you...helpless for you...that's what i hear...that you feel helpless....but please, please know....that what you perceive as helpless, i perceive as strength, as support, and as a constant....you, all of you, all of you who take the time to read this blog...you are not helpless in this journey, you are the bricks of the road that i walk...supporting me...keeping me...for that i thank you....
What Sam did for me....
...i am in amazement and awe at the support i am receiving...
...these are the affirmations that he included:
I am in perfect health and I automatically do what is necessary to maintain perfect health.
I don't get angry with anyone or anything
I live today, not the past, or the future
I speak only to praise, to inform, or to prosper
I enjoy living
I don't judge others
I am independent
I make my privacy a premium
I don't accept needs from others
I don't seek approval
I make my own choices
I know how to laugh
I am perfection
I don't fit any pattern
I like virtually everything
I choose everything from life
I accept most everything
I am free from guilt and worry
I have no obligation to anyone but myself
I don't have sympathy for anyone
I have compassion for everyone
I don’t lay guilt on others
I accept myself
I accept others without complaint
I appreciate the natural world
I have insight into the behavior of others
I am honest and I don't lie
I don't blame anything or anyone
I have high energy
I don't steal energy from others
I am aggressively curious
I am not afraid to try or to fail
My values are not local
I love myself
Tomorrow's Appointment...
the one who actually makes the cuts...wow...it's just so real...it's all happening...i can't really wrap my head around all of this...i can't believe what i'm facing...i can't believe that i chose this...i can't believe that in 18 days i will go to sleep and wake up early the next morning, on my way to Lakenau where this will all take place...christopher offered to stay with me the night before...bless him...i think about the night before, the morning of...getting dressed in my surgery gown, being wheeled away from my mother and my family...knowing that my family will have to sit for 12 hours in a cold waiting room while they operate on me...wondering how i am...while i sleep...i'm excited for the dreams i will have...i hope to remember them, but i know that i won't...i hope i am with my mommom in my surgery dreams...she will protect me i think....i hope...
i'm trying to focus on the good...the excitement of destroying my chances of getting breast cancer by 90%....the strength...the support...the love that i feel from those around me...i said to my mom the other day that what i am going to remember most about this time in my life is the amazing amount of love that surrounds me...the incredible people that i've collected in my 30 years and the amazement at the way they have risen to my side...that's what i will remember...not the fear...hopefully not the fear...fuck the fear....
19 days...
...my mother had breast cancer, and ovarian cancer, so i was tested for the brca gene...which i have...
...i've elected to have these procedures in hopes of saving my life, in hopes that my children (which i don't yet have) will not have to watch me go through what i watched my mother go through...twice...but i'm scared that even with the procedures that i will still get cancer...i am terrified of cancer...everyday...and i'm hoping that these procedures will ameliorate that fear...but it doesn't feel like it really...it feels like i'll always be scared...i feel like i live in fear of a disease that i don't feel like i can control, stop, or have any power over...i feel like this decision, these surgeries, is/are the only thing i can do to take any kind of stand...to fight for my life...this is the fight of my life...
....my family and friends are amazing...my mother is my rock, my constant...my pop is so supportive...and my brother...as different as the two of us are, we are working together to find a common ground of support...he's such an amazing guy, opening his mind and thinking in alternative ways, just to support me...unbelievable...my cousins are wonderful, trying to support me in any way that they can...it's tough for them though, they can't get it becuase they don't have the fear...the fear is what connects my mother and i...she's the only one who really gets it i think...and i'm trying to reach out to support groups, force and the like...to find others who understand the fear...but that is scary to me too...it makes it more real...it makes it so real...
my friends are incredible...marc and jay have been my strength...listening to me, supporting me, planning to visit...thea emoting in the best way she knows how...and sam...my sammy is making a shrine to me on his fridge so that he'll be able to see me always...even when we're so far apart...that's a huge part of this...my friends are so far from me...so far...a world between us...and it's lonely...i miss them terribly and i wish they would be there when i wake up...i will wake up...i just want to wake up....please g-d let me just wake up...