to jared (feb 2011)

this is a response to a fb message from one of bec's many on-line relationships. altho they never met in person,  this guy and bec shared something special and this was a mostly positive email. 


yo. you just popped up on my newsfeed, and it made me realize i never replied to a really gorgeous and genuine email you sent me a while back.

And while I was (and for the most part, still very much am) in a strange, mostly NOT good state of mind, I do want you to know that for whatever reason (b/c in all honesty, I suppose there's not a whole helluva lot of depth to our relationship. hehehe, its always just been an online amicable mutually respectful one). But for whatever reason, your comments always mean a ton to me.
you have a way of coming off as one of the most absolute genuine people i know (and as i just said, i don't truly "know" you. hehehe, i've never even actually heard your voice!)
And while I don't want to answer your previous email in too much detail, b/c again, I was in a much much MUCH worse state back then, it's somewhat improved these days in terms with just getting by day to day. but I'm still nowhere near the "me" i was. And for the most part, I've learned that the only way I am capable of getting by day to day, is to almost ignore all of the horrendous unspeakably unfair and scary crap that has and is happening to me.
but you included a portion of a poem that somehow slipped past the fortress of fear and sheer depression that had dropped itself around me at that moment, and while i can't say "it saved me!" it did for a moment, give me a momentary glance back at the fact that i'm human. and despite my anger at the world, and how much i hate this disease, the fact that i and so so so many others have to suffer in such ways. I had spun myself down into the deepest hole i've been in during the entire five (yes, can you believe, its been FIVE years as of feb. 23 that i was first diagnosed) years. I could have been that deep numerous times before but I had a really good ability to always find a way to not slip that far. Most of the time the thing I would do is simply take every and any chance to appreciate something. everyone always says things like "always appreciate the little things in life" and most of them say it with emptiness, never truly having knowledge of HOW to actually do this. But I felt I had achieved just that. sometimes I would wake up and before even opening my eyes i would be still and feel the sunlight streaming through the window on my face, I would try to be conscious of every bone/muscle/tendon in my body and think to myself "right at this very moment, i'm relaxed, warm, rested, there's no aches, pains, cramps." (i did this ALOT after my surgery when i was recovering, since i thought learning to appreciate those times would help me heal faster). but I started to do that all the time, to all types of things. I would go to starbucks, have a nice little exchange w/ the barista dude, the drink would be especially tasty, and I would walk out to the neighborhood I worked in and look around to realize i love the neighborhood, and i love my job, and the drink was awesome, and people are good, etc etc.
I was never able to be classified as "perky"or "upbeat", so its not that these thoughts permeated me and translated into me being saccharine sweet. I just felt this was one method that helped me stay sane when life also took a liking to punching me in the face repeatedly with unfairness. i was never a particularly religious person.  I know many who go through life-altering things such as cancer or other disease, that somehow do end up turning to religion of some sort. Not only did I not do this, but things that have happened in my life only serve to distance me even more from the idea of god in any of the various manifestations he is presented as. I can't justify anything by any of the religions i know about. if anything, I only get more angry if I do think about the role of god. But I do believe in humanity. and your unexpected, sincere email and poem gave me that momentary glance back into what i do believe which is (in convenient bullet points for dramatic effect):
I AM human.
Humanity is a sumptuous thing
I'VE been lucky enough to have experienced it on many levels in its full grandeur BECAUSE of disease.
Most people will probably never know the full extent of it.

So, from the bottom of whatever is left of my heart, Thank you. :)
(oh, this isn't quite an email  that  says, "so even tho i still have cancer, I am rejuvinated back to the more hopeful person I was prior and am gonna fight like hell". So, no worries on that end. Its simply that those were things your email made me think of, and i feel bad i never shared that back with you. Most days I still do feel VERY un-human. And chronically refer to myself as "NOT normal". Which i whole-heartedly believe, and need noone to try and convince me otherwise. it is what it is. BUT, for a tiny moment, your email reminded me of something. And i liked that something.)

(here is the poem. I e'd the guy who sent this to bec. needed to read what gave her that  peaceful feeling.--mom)
     
                   Summer Day


Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
With your one wild and precious life?

                                  mary oliver

this one's about me.

so this one is about me and my endless prying into bec's life. I make no apologies for it. and this wasn't a message that surprised me. as I have said before, so much in bec's writings wasn't anything she didn't say directly to people. she made it clear to me that I was smothering her. I didn't really care. still don't. it was one of those "between a rock and a hard place" situations most of the time. she insisted on involving me with most of the people she met on her journey but got pissed when she felt I was crossing the line. the role of care-giver is not easy under the best of circumstances. and knowledge is power. I make no apologies for how I got my information. it helped me a great deal to read her posts etc b/c then, I knew what topics to steer clear of and also what topics I needed to steer the conversation towards. she NEVER wanted me to worry about her which I did every minute of every day of this nightmare. so I believe that even though she was resistive to my endless intrusions on her life, it served as a way for me to understand her fears and anxieties without her having to talk about them. this is from 2yrs ago.--mom

"yo.


gotta say, i'm sorry for not being more immediately responsive. i'll confess, part of it is my lazy/unmotivated-ness (it is nothing that can be related to ANY normal persons unmotivated-ness, so please, save yourself the trouble).

and also, the more it comes to my attention that you talk to my mom. i may love my mom. but she is in EVERYthing i do, EVERYwhere. i have a blog, obviously she reads that, i'm signed up on various different cancer support forums (i.e The Colon Club, planet cancer, stupid cancer radio show, etc)) ostomy support forums (united ostomy associates, the kpouch forum, etc) and she also registers for an acct with them all. so basically i have little place to go and vent and complain that she DOESN'T have a way to access and read.

And the only person i could email and talk directly one on one (so that it would be private) was rodney. now that he's not around i find myself freaking out like "who in the hell am i supposed to talk to!? who's gonna understand without going all god, or all mush, or all dumbstruck on me?? NOONE! shit."

so, i guess since i know you talk to my mom, well, its just not the same. rodney eventually started talking to my mom, but b/c he also actually HAD cancer, he understood. there was a line in the sand.

i'm not saying i dont' trust you. and i'm not saying she( mom) even would ever ever ever ask you what i've said. she'd never. but its just simply the sheer fact alone. nothing more, nothing less.

aaaaaaannnywho. i know she's at least made some kinda reference to whats been going on with me the past few days. considering how much i watch her on my computer on facebook (all the damn time! heh) and how little i've been on facebook myself.

B"

what makes me happy dec 2010

this post is in response to a question asked of her by a woman from the cancer community. they apparently met briefly at an I2Y event and became fb friends. this is at least not a dark, depressing or angry post. for a change!--mom


um...what makes me happy? what are my favorite things? cute questions, and i'll try my best to answer them, even while being mildly uncomfortable b/c it almost makes me think about writing my own eulogy (she was a fun loving person who loved sharing time with friends and her dog...)

um, makes me happy...my dog :), writing, engaging in good conversation with new and interesting people, bacon, crocheting, sharing a bottle of wine with a group of good friends, actually let me take back bacon and wine, and just lump that in under the phrase Good Food. I love to draw, and read, and tell stories. i basically looooovvee talking, and do it nonstop.

i love humor, that being people who have it and can make me laugh, and having it myself. i hate being too serious, thats usually something i save for just me, late at night. i love my mom. i love kindness. i love the ocean although i can just barely stay alive if i was thrown in. i love nature, but i'm a city girl at heart (aka, i need the sounds of traffic and noises in general to be comfortable to sleep) i looooooooove horses and that conflicts with my city girl side b/c i would love nothing more than to be an olympic equestrian rider, but you can't "do" equestrian while in chicago unless you're rich and have alot of time to spare....which i never had either.

i love my job, not b/c of what i do, but b/c what my job as a whole does (a music school, we have lessons, dance and music, and we have concerts, bringing lots of world musicians in and exposing people here, but also have a huge scholarship program that offers huge heavy discounts on music lessons for kids who may not other wise be able to afford them, and i'm very proud to work at such a place, and i love each and every person that works there with me, a lovely creative caring awesome group of people.

i love my city, and have alot of pride for it, born and raised, and even though its going to be a high of 20 degrees tomorrow, i still love it here.

ummm....heh...so uh...is that a good start? shall i ask the same questions of you? ;)

..

being alone ans scared and missing rodney dec 2010

this is a fb message to a fairly well-known "cancer-lebrity". after bec's cancer-soulmate and confidant, rodney, died, there was a massive void in her world. she reached out to those whom she hoped could help her fill that void. she never talked to me about dying. she always wanted to spare me any worry....as if!




have you guys done stupid cancer shows about terminal patients? death, all that?

do you know anyone currently, young, and with that kind of diagnosis that perhaps is a good chatty person? i'm sorta in a huge freakout mode here and i just don't know what to do/think/say etc.

not that anyone told me i'm terminal. noone told me to get ready to die soon. but nothing has been going my way (to put it mildly and cutely) and after pretty much 5 years of having to deal with this, i've actually come to a point where its harder and harder to keep holding on to that good ol' hope idea. i am strong, and a fighter, and all that, but it'd be nice to every now n then just have a bone thrown to me. y'know. just gimmie a slight inkling that its not as bad as my minds' eye sees every time i get a second to let my mind wander.

i had a really really good friend that had stage 4 colon cancer i grew really close to. he passed away in august. since he's been gone i've come to realize not just that i was really close to him but that he was pretty much the ONLY...literally the absolute only person on this earth that i could actually talk to in full...talk about all my thoughts, be they morbid, silly, sick, stupid, scary, whatever. i thought i had others who i could talk to like that (or maybe i thought i was so "open" and communicative of a person that i could find anyone to talk to in that manner) so since he's been gone i've realized just how untrue that was.

i know lots of survivors and current patients. but most everyone i know is either well past their treatments and diagnosis living much more cancer-free than i. or they're just undergoing treatments or surgery and things are going well enough and they weren't as severe as i apparently was (i guess i like to think i wasn't too bad off. maybe that was that good ol' hope i had so much of). so i find when i try to talk about the crazy things in my head i find they don't relate or can't relate or its just not appropriate to approach as a topic with them.

other "survivors" have gone through their share of crazy shit with cancer and surgeries and treatments. but they're not in the thick of it.  So if i wanted to turn to them and talk about my fear of one day getting up, and the next thing i know i'm rendered incapacitated by some side effect of the cancer and not being able to speak for myself and being stuck in a hospital on machines in a horrible state until i die...well, as soon as i open my mouth i shut it b/c they're such damn positive people, they're gonna give me an answer that (while may be a wonderful understanding nonjudgmental caring answer) will probably make me feel even worse or want to punch them in the face.
the friend that i lost in august, we could talk about these morbid types of things with all honesty and bluntness, i never felt or feared he'd think i was too pessimistic or whatever.
i've tried psychotherapist types when i was rediagnosed in 2008 and i hated it. i guess mostly b/c i knew this person would never give me the answers i wanted to hear (which was how i could be rid of this cancer permanently) so i never really looked into therapy shit again.
but i don't really know what to do. sit here with scary crazy thoughts in my head that i can't share with the only person i could consider close to me at this moment (which is my mom) b/c i don't want to worry or scare her anymore than i know she is.
i just thought...you know, for once, imerman angels isn't gonna be of use to me. i don't want to hear from someone who's been there and made it to the other end rah-rah yay go team go! kinda shit.
i need to be able to talk to people who A) aren't going to feel bad for me or god forbid say the line "well, i know its no where near or can't compare to what you are going through or must be feeling right now, but..."
(i absolutely HAATTTEEE when people, even cancer survivors i know, put that in ANY part of our conversation)
and B) truly honestly know what i'm talking about. I dont have a husband or kids of my own. so i don't have the "i must be brave and fight to stay alive to see my kids grow up, or to grow old with my husband"
i'm young, single, i never got to have a career, i never got to do half the things many people feel entitled to (own a home, have a new car, follow my lifes dream, be married, have kids, pursue a passion, blah blah blah)
i talk to so many survivor types or current patient-types who even though they are young, i cannot relate to them whatsoever. i'm covered in tattoos. i grew up going to hip hop shows. i live in the middle of the city with a roommate. i've never lived in any other place but here. i've never owned a car within the same decade that we are in. grew up poor, pretty much have always been eeking on middle class. was the first child to get a college degree (and i'm the youngest in my fam, two older brothers, well....)
barely anyone i've met relates to me much.
sorry. i did not intend this to be so long, i swear. its like word vomit. it just pours out of me sometimes when i least expect it :)
anyway. the basic gist of this mssg was just, do you know anyone that i may be able to connect with?

sincerely

Me.

fb messages being forgotten

this is a response to a facebook message after bec had cussed out someone who she felt was ignoring her.  the person who sent her the message was asking if he/she was also guilty of ignoring her and this was her response to them.( from march 21, 2011.) the theme of this and so many other messages was how alone she felt...all the time. it breaks my heart. she was very vocal about how she felt when she didn't hear from her friends for weeks and sometimes months at a time. so even though the tone of this (and many many more texts, e-mails and fb messages) was one of anger and bitterness towards her friends, the thing to take away from this is...to do better in the future! to remember that you may have friends out there who are struggling... that are alone...that are stuck in their heads and maybe need some diversion...that are scared and feel forgotten by a world that has past them by.  how it doesn't REALLY take a whole lot of effort to brighten someone's day. LET THAT BE THE LESSON HERE!---mom.



" i was in no way talking to probably over half of my fb friends...i mean, hell, you don't live anywhere near me, i wouldn't expect anything more than all your wonderful bacony-posts.

Its the ACTUAL people that i've known since long before facebook ever existed...people who could very easily pop over to my place...those people who, when confronted on how come i haven't seen or heard from them lately, say things like "oh, i just know that you're probably overwhelmed with people trying to do things for you or whatever, i don't want to be pushy or anything" or "i think about you constantly, you're always in my heart"...bullshit.

the two friends names that i mentioned in my status (about the bestest friends i have these days are two people i barely knew a few years ago) they are friends who actually check in with just a text or something, almost every day. they ask whats going on today, or how i'm feeling, or how such n such procedure went. Not with me having to prod them to do that. not by me having to post things publically on FB for them to know maybe they should check in on me. And thats what i have real issue with...is that so-called "friends" these days have gotten so lazy they don't bother to check in on someone themselves on their own accord anymore, no, everyone instead just gets on fb and if they happen to see an update, THEN they go send that text or make that phone call. which is why i barely ever say shit on FB anymore. It helps me narrow in on who's an actual friend. Lets take for instance my actual "best friend" (at this point, thats just a label or a title they hold, i'd barely consider them that) has no idea that a week and a half ago i had a drain tube inserted into my asscheek (yea...not my asshole, where at least there's already a hole to start with, but into the flesh of my butt cheek) to drain fluid thats been collecting in my pelvis, and then i had to keep it in since then, therefore having to stay at home b/c i can't even sit down normally, so i've been off work this whole time, sitting at home alone for the majority of the time til my mom gets off work and comes by my place to keep me company, and has no idea that yesterday blood started coming from the drain into the leg bag OR that three days before that i was in the ER cuz of another complication with it. You know how many people know any of that? i can give you an actual number. 10...TEN?!

that number is made up of:

1) my mom

2) my manager

3) my boss

4) friend jessica

5) friend sanj

6) cousin katie

7) cousin jenny

8) girl who i only know from online b/c she had cancer,

9) girl who i only know from online b/c she has ostomy.

10) my roommate



Heh, and you know what? if i had even made any teeny effort to make a status update about ANY of it...you know how many texts n emails i woulda been getting? but i didn't really feel like talking about my ass drain. So i didn't. and then it became an interesting sociological study. and THEN it just became a 'thing' for me. Like a test...or a proving ground. Without any of these so-called friends even knowing about it. Yea, yea, yea, i get it, people have lives. people are busy. But it really doesn't take too much outta your busy day to spontaneously check in on, or say hey to, your friend. (i even have a friend who claims to be just so close to me, i've known them since we were in 8th grade, that they have my initials tattooed in the middle of the colon cancer awareness star symbol, on their chest (its about the size, diameter-wise, of a softball. so, not small.)

And do ya think i have even heard from them at all in the past month or so?....nah. pfff.

anywho, sorry this is so long. I just figured, i could vent to you about my irritation at friends not being friends, without offending you. i mean, you and i both know that while we have alot in common in some ways..yea, we're just facebook friends. and i dont expect you to be bending over backwards to be supportive to me. I like our communication. its fun and uncomplicated. (and thankfully, NOT always about cancer. Cuz there's only so much that i want to always be talking about cancer, i think about it enough as it is.) I appreciate you have other humor to share with me.



but damn...these so-called friends of mine that are here in town...they leave something to be desired these days



well...hope your enjoying your day, guess what i'm about to finish eating?? chicken fried bacon! awww yea baby! (its my treat to myself after my doc appt today. a bucket of chicken fried bacon and a bag of deep fried pickle chips (gotta love those hole-in-the-wall hot dog joints,) always find great "horrible for your diet" foods that are PERFECT for my skinny 100 lb self who's trying to put on some weight.

random thoughts

from her journal...I have spent alot of time wondering who she was talking to that made her feel better. whoever you are...thank you.--mom

had a good talk last night. I didn't say things exactly how I would to myself, but I did get some things out. It doesn't make anything better but it does make me not as alone. I don't think anyone could really guess or comprehend the depths of scary-talk I can get into in my head. even if I allude to it. (assume this is also unfinished but who knows)

being forgotten

march 2011. lonliness and being alone, except for me, day in and day out, was really weighing on bec over the last 1 1/2 years.  this is a response to a fb message from an on-line friend that she had never actually net in person. again, the thing for her friends to take away from this is, do better in the future for those you love.--mom

"hahah, i have never been cancer free in the 5 yrs since being diagnosed.


i just make having cancer look good i guess. maybe thats part of the problem. people can't really imagine me as being mere moments away from death at any given time (which, theoretically i am, no matter how dramatic it sounds). i've been on chemotherapy in some form or another consistently. sometimes its a treatment i get every two weeks, when i got real lucky once on one particular drug, it was once every three weeks...that didn't last long tho. the most recent treatment plan, i had to go in EVERY single friday. i suppose that aaaaallll those dear close friends of mine who were always saying "if you ever want company at chemo, or need anything from me, please tell me" i suppose EVERY week just was a bit too inconvenient for them.

i'm fine. and i'll be fine i'm sure. its just kinda funny that i can use FB as a way to unknowingly 'test' certain people (i mean, of course people whom I've met on-line ...while you guys mean a TON to me, b/c of course you guys are some of the only people that truly understand the whole intestines thing, and if i have to freak out about something kpouch related, well hell, i dont know where i'd be without your help...but i'm more refering to those friends on here who i've known long before FB ever existed, etc)

but its funny to me...i've noticed that if i keep quiet on FB, and don't put up status's like "keep me in your thoughts/prayers tomorrow for this big test/procedure i have!" kinda things, that certain people are so barely in my life anymore, they don't have a clue if i dont post about it on FB or send out a mass email. I only started to realize this b/c as of late i've just gotten tired of having to feel obligated to keep everyone in my social circle 'up to date' on me. Y'know, everyone always says "well, keep me posted on how things go" etc. So i felt obligated to send out these big ol' group emails, OR post things to FB about whatever the very latest updates where. And when i started to get tired of doing that (mostly cuz i was tired of saying the same things over n over, and i've recently been avoiding talking about cancer except to my doctor as much as possible. but the less i updated, the less i heard from so-called "good friends". Then I realized, "Oh, Its b/c they aren't even bothering to do their OWN checking in on me. So if I'm not updating them, then they apparently think everything must be peachy with me. And over all that, I realized that just in general, i barely hear from some people i used to consider very close friends. Hence the start of the tone in my status update.

its' all just me being moody...but also being realistic. its been five years that i've been dealing with cancer, so its not that i'm not used to the different ways that people react to it, and to losing and also gaining people you wouldn't expect. but as of late, it seems like its just about EVERYone around me thats gone...everyones got a busy busy life. and mine is just right here at a standstill...continuously in treatment, therefore unable to make any upward movement in my life. but hey...i'm still alive, so apparently, according to doctors, THAT should be good enough for me. heh. suuuurrree...

 with all the crap i have going on right now (the most current issue has to do with some fluid collecting in my pelvis, and this cavity or absess that seems to have opened up in the pelvis. so they put a drain tube in my buttcheek...yes, the actual fleshy cheek..not my buttHOLE, but the cheek. and attached to a leg bag. it was draining off the fluid, but then it started to drain out urine, and i was unable to pee the normal way, and now they're talkin bout if the antibiotics and keeping this drain in, doesn't allow whatever fistula is there to heal up on its own i may end up with bi-lateral nephrostomy drains/bags permanently...i think that'd be the worst case from this particular scenario) but with all of that...my kpouch? still just beautiful. working like a champ. i only empty once, maaaaybe twice a day. for me, that was unheard of. but hell...i'll take it! heh."

..