Tuesday, December 30, 2008

memories of life.

I have a crush but it was unrealized til now.
I was infatuated but didn't let myself see it.
I took for granted.
I took advantage.
and now all I want to do is take it all back.
My crush is on life...I love it, but it seems to not love me back.
I try all I can to get its attention.
I stop and smell the roses.
I live it to the fullest.
I laugh at the small things.
I rage at the injustices.
I smile when I pass someone on the street.
I sing to myself loudly in the car
I savor the flavors on my tongue til the last drop goes down

and yet Life doesn't seem to think I appreciate it.
maybe Life thinks I'm ungrateful.
maybe life thinks I'm a brat.
Maybe life feels undervalued, or not very attractive to me.
But I love it. Dearly. And always have.

All I can do nowadays is think. and reflect.

....remember that time? when we stole a salt shaker from a hot dog stand and a lime from a liqour store and ran off to chug that bottle of tequila under the train tracks in wrigleyville? You broke your flip flop, and you got too drunk and crawled under the park bench to fall asleep and those guys drove down the alley, saw us all, and thought you were dead?
....remember once when I came home early from work because I was sick. Only to find that you had sponge painted one whole wall in the living room gold?! I got so pissed off b/c it was hideous, and b/c you didn't ask me, that I wrote you a two page letter saying it'd BETTER be back to white by teh time i got home OR ELSE, and left to go buy soup? (and a few hours later when I returned...I found it all white?)
...remember that time I put you in my messenger bag for your first ride on the subway to go down to Taste of Chicago? We couldn't walk more than three feet without being stopped by someone, you chic-magnet. And we ended up getting "interviewed" by the Channel 7's "ChowHound" while eating a giant bbq'd turkey leg?
....remember that time we thought my mom would be gone all night so we snuck you in my house, only to find out 15 min later that she was coming back home so we hid you in the closet for an hour til i thought the coast was clear enough to open my window in the middle of january and all but throw you out the window with no shoes on? And you took off towards the alley but almost had a heart attack when you reached the garage b/c the motion light turned on?
....remember when we used to sit in the home office at two different desks on two different computers, less than five feet away from each other and talk back and forth via a chat window instead of actually speaking just b/c we could? And knowing we were total dorks for doing it, but neither of us caring?
....remember you didn't feel the baby all weekend so you got nervous and went to the hospital only to find that you'd miscarried and would need to induce labor to deliver a stillborn? I was in my first real college class, summer school, and the middle of august. I stayed in your room for the entire two days waiting. your mom came and went, and so did the boyfriend, but i stayed. curled up in a ball and slept on a chair with a damp sheet for a blanket in a WAY over airconditioned room and waited. When the drugs finally worked, I was flung into role of a sort of morbid midwife and held up one of your legs til it was all done?
....remember when you went to let the dog out in the middle of a blizzard and accidently locked yourself out, but I was in the bathroom and couldn't hear so you thought it was a good idea to try and break in through the teeny window over the door but got stuck halfway through and couldn't breath? til i finally heard you barely eeking out a whisper cry for help and when i came back and saw you all the way up there halfway through the window and red in teh face I laughed so hard i couldn't breath myself and you got really mad cuz you really honestly couldn't breath? and after getting you down i laughed myself silly for probably another full 30 minutes?
...remember that time we went rollerskating at Rainbo and when we were done we thought it was a good idea to stay in our rollerblades and head across into the cemetary and roam around, only to get locked into the cemetary a half hour later. And not having any shoes with me, we decided it was the only option to scale the wrought iron fence...in rollerblades?
reminisce reminisce reminisce.

Life, I have a sweet silly crush on you, and I really hope one day you see how much I'm in love with you.

Wednesday, December 10, 2008

The How and Why

How do you respond when the people who are supposed to save you from cancer, tell you there's nothing they can do?
How do you react when the day that was supposed to signal the end of the stupid fight you've put up for months, is abruptly cut short and you are sent home?
Why do I continue to get screwed? Who did I fuck over in a former life? in this life?
Why can't shit just be simpler?
How do you move forward when you're not given options?
Why keep going if the outcomes already been set?
How do you tell someone who means well enough that "sending love/prayers/thoughts" really isn't doing a damn thing for me? love/prayers/thoughts apparently aren't winning this battle for me.
Why is it that you can have so many people from all over the globe rooting for you, and yet nothing still goes your way?
How come?
Why bother?

Tuesday, November 11, 2008

When I tell you I passed out, I'm serious

There's quite a few of you that I talk to on a regular basis. And periodically (or, as some of you may attest to, way too frequently) I forget to call someone back. Or text back. And I do mean quite literally in the middle of conversation.
For instance, a quick phone call from someone, and I have to take care of something really quick, and I say i'll call you right back.
And then I don't.
I'd like you all to know, that when I finally do get back to you, and tell you that i fell asleep...I am not exaggerating.
Thanks to my roomie, we now have photographic evidence of this phenomena. (see that little silver spot by my arm? Yep. Thats my phone. Laying there opened. Ready to call. SEE! I had good intentions.

Thursday, November 6, 2008

MY president!

Through this whole campaign, I kept pretty low-key. I felt with absolute certainty who I WANTED and who SHOULD be elected. But I never boasted about it, or bragged, or preached. I'd been disappointed too many times by my own country. I'd been betrayed and disillusioned by not ONE bad election, but TWO back-to-back bad elections during the first years that I was even able to vote.
What did I matter? What did my voice mean? Obviously, not a whole lot.
I kept low-key b/c I didn't want to be so disappointed again by a slap in the face from the rest of my fellow Americans.
Its alot like the battle with cancer. I am cautious now. More-so than I may have been in yearspast. I do not like to get my hopes up b/c I've grown accustomed to expecting the worst (and then hoping for the best later).

But tuesday night??!

Maaaannn, tuesday night dreams came true, hope came back, faith was renewed. I never in my 28 years uttered the words "I'm proud to be an american" without laughing sarcastically, or sneering.

And tuesday night?!?

Tuesday night I sat in the McDonalds on Chicago Ave. at almost midnight with close to 200 other people of all shapes, sizes, class, race, gender, age, and background. Before I even realized I was saying it, the words "My president is gonna make the world proud of us. We did it" tumbled out of my mouth.
I actually needed to stop mid-sentence and think about the words again to myself...."MY president..."
Not "THIS president" or "That dickface in the whitehouse". No, no, no..."MY president"

Maaaaannnnn, it felt good. It felt damned good. Good enough to want to pump my fist and chant USA! USA! USA! (luckily I caught myself and checked that before I made a scene in McDonalds). Besides, I was plenty tired from screaming and cheering and running up and down Grant Park in sequin flats and a mini-skirt to really do much more than smile and keep sipping my vita-water.

The world is not perfect yet. Peace on earth doesn't yet exist. Hell, the very next day my damn fridge stopped working and I started my day by having to toss out all the food in it. Things are still going wrong. But at least now, we're on the right path again.
We've been off-course for a long time now, so we've got a while to travel back before we can start moving forward. Alot of wounds to heal & mistakes to apologize for. But DAMN it feels good to be on that track.

As a good friend of mine said once, about a completely different situation, but which fits just as well for this moment: "It's like a long cool drink of water after a hard journey through the desert."

OBAMA! Thanks for the drink man. We needed it.

(And now, for some pic-spam, enjoy....)

The setting, my GORGEOUS city, Chicago.

The cast, too many proud Americans and friends of.
Yup, that's right THE official parking entrance.
HAPPY cops at a political rally?!?
Obama really is changing the world!

I have pride THIIISSSS big!

Welcoming in our new President Elect!

Celebrating with the masses

Ladies n Gentlemen, the man of the hour!

Monday, October 6, 2008

Checkin' myself

Good grief, I am just horrible at this blog stuff. I come and read my own blog, while at work. and think to myself "when the hell is this gonna get updated."
And have soooooo much to say. and yet forget to sign in and say it.

So anywho. You ever have that wierd moment when you catch yourself doing something completely trivial and mundane but you have a flash from a previous moment in your life when that very mundane task was much much more laborious of a chore?
Am I just being way to blatantly obvious here?

Every now and then I have those odd moments. For instance today, I walked out to the kitchen from my room to grab a handful of chips and stopped in mid-stride as a memory of a few years back, home recovering from surgery, and doing that very same thing (walking out to grab a snack) was a major chore. Shuffling along with my skeletal 102 lb frame swimming in sweats, fuzzy slippers, and ginormous hoodie. Hair unwashed for three or four days straight and sticking out every which way. It took a good 5 minutes to walk out, get something and make it back to my room and in bed. By which time I was exhausted.

So today when I had that brief flashback I just paused and soaked in that memory. Let it bubble up, feel the emotions from that time, acknowledge how far I've come, and then continued on. I don't want to begin to take the everyday little things for granted.

Aight, enough with that. Lemme give you guys some updates. Some of you may have seen my new do', but I should officially unveil it for all of cyberland to critique. I've been doing chemo infusions every two weeks since may, but I started with the full regime of FOLFIRI, Avastin, and Erbitux. After four cycles I was switched to just taking Erbitux while I awaited surgery. So I've been doing that since..oh, i dunno, before August. The odd thing was that about a month or so after being taken off the big cocktail of drugs, I started noticing my hair just shedding ridiculously. I thought it was the residuals of the former drugs working themselves out of my system. But it just kept coming out. My hair was limp, thinned, and lifeless. It's not a very common side effect of Erbitux. So I don't understand why after not comign out with the multitude of chemo drugs, it was doing so now.
I started by cutting it pretty short. (depicted here by the "many faces of me" heh) Which actually wasn't all that bad. But I wanted to kick it up a bit. and added in hot pink and red highlightsBut you know...it just kept coming out. I was haunted by little hairs. Everywhere. Hanging off of everything. If i leaned forward and shook my head back and forth little hairs would rain down. Just practically leaping off my head.
So I knew the inevitable was coming. *gulp*. I was going to have to baldly go...where few women ever have to go.
And so after a few glasses of wine for lubrication, out came the clippers and off came the hair!

(oh how the wine helped.....)

But you know...I figured I should try something I wouldn't normally have ever tried (well, um besides the very obvious SHAVED HEAD). So, for the meantime, I have a little bang and side burns. Which makes wearing a hat kinda like a little illusion:

So for now, I'm getting used to the (really really cold) breeze on my scalp, not having to wash or brush my hair really at all, and getting wierd looks from little kids. It's not all that bad. Not my choice. But it's a little fun playing the role of a little emo/punk/skinheadish/lesbian girl. Why not, life is short, play roles.

Tuesday, September 23, 2008

Having cancer is a full time job

Man. Ain't it the truth.
And I don't just mean that when you have cancer (or crohns, or heart disease, or diabetes. Any chronic illness really) that you live with it 24/7, cuz that's a given. Duh. Yea, you don't really ever get to take a vacation from cancer. Til you cut that crappy stuff out.
I mean more that it's a full time job. 9-5p monday-friday.
Cancer is usually nice enough to take weekends and most major government holidays off, how very convenient. Or not, depending on what YOU happen to do for a living.
For instance, if you work a regular 9-5 office job. It's a bit hard to make yourself 100% available for doctor visits, treatments, and procedures.
I needed a blood transfusion the other day. Now, I'm not going to argue that I should take this news with utmost seriousness. I mean, I don't wanna be running on a quarter tank as much as they don't want me to. But I had to call off the next day. Because the transfusion was going to be about 7 hours. and of course, the infusion room isn't open after 5. And it's not open on weekends.
The next day after the transfusion, was chemo day for me. So I spent another couple hours in the doctors office. But it had to be during business hours. which means no work.
When I was getting radiation, and had to drive to the hospital every day for five weeks. I had to leave work early every day during that five month period b/c the radiation center wasn't open after 5, but the very latest appointment I could get was 3:45p.
While I don't really think that any of my coworkers or friends are going "that lucky bitch. who does she think she is, always getting to leave early and call off last minute. pfff."
Cuz I would gladly trade in the need to call off in exchange for no cancer. (ugh, that was a bit of a no-brainer m'thinks).
And I'm super lucky in the sheer fact that my job is absolutely amazingly awesome at accomodating me (ah. aaalllliterations). I may not have a super high pressure job with tons of benefits and an awesome salary. But while I'm lacking in that department, being able to know my employer has my back and will work with me to get around all these treatment schedules, is incredibly reassuring.
And I realize that I sound a bit whiney. But really. In this day and age with business's and corporations having all sorts of untraditional hours of operation, etc. You'd think that having cancer wouldn't be so damned restrictive.
I am lucky that my employer is a small one, and it's very much like a family. They support me alot. But what if I had just started a new job? I'd constantly be calling off, late, or leaving early, and that sure doesn't look good on ones reputation. It's frustrating to say the very least.
A couple weeks back my surgeons nurse called while I was at work, and I didn't answer. She left a mssg at about 3p that (rather out of the blue) my surgeon wanted me to see a urological surgeon and that he's booked for next few weeks, but had one opening come up the next day.
Uumm...I wanna meet this doctor as much as you do, but I knew nothing about this idea, and had already planned on flying out to California on that day.
I know they're just trying to expedite the process, and with as much time as I spend wasting away in waiting rooms, I appreciate that. But DAMN. Consult me first before just scheduling an appointment which I'll have to cancel. I hate looking bad in someones eyes for no good reason other than false impressions.

Friday, August 22, 2008

Loss of a friend

I had so much to come back and write about. Past couple of weeks filled with ups and downs, and all kindsa in-betweens. But, I think this entry needs to be saved soley for the purposes of remembering a great great woman.

A dear friend, fellow calendar model, fellow colon cancer patient, and just all around goofy gal, Heather Maes, passed away wednesday, August 20th.

I'm still a bit of in a surreal world about it. So I figured in making this a tribute blog to her, I'd regal you all in some of my own personal tales of my friend.

When I flew in to Albany New York last year in june for the Colondar photoshoot, I have to admit, I was kinda dreading it. A whole weekend up in the boonies with a buncha cancerous people? Blech. Not my idea of relaxing. Sounded more like it'd be a weekend of prayer-ful "oh god lets be thankful that we have this blessing of being able to appreciate life" and wallowing in our pitiful cancer-infested lives. No thanks.
The moment I stepped off the plane, I headed straight for the bathroom (those of you that know me know this is always the first, and last stop for me before and after getting on planes). I had the cell phones numbers of the three other models who were flying in that day with me. We were all supposed to meet up for each other and wait til the last person got in, so we could all ride up to Lake George together.
But I thought "well, I don't really care to hang out so much, I'll just go do my thang in the bathroom, go grab some coffee, and act like I forgot the numbers."
While setting down my bags in the stall, my cell phone started going off. I didn't recognize the number, and figured it may be one of the other models. So i ignored it. A minute or two later, it rang again. This time, catheter in hand, and annoyed, I answered.
The voice on the other end was Heather. I didn't want to let on that I was currently standing with a tube about to poke it into my stomach in order to poop...hell, I didn't even know this woman. I simply said "Um, Hey, yea, I'm here, I'm actually in the bathroom...I'll meet up with you in bout 20 min." and thus began my friendship with Heather.
When I emerged all flushed and empty feeling, I found Heather sitting atop her bright pink suitcase at the bottom of the escalator, in her bright pink Victoria's Secret sweatpants suit. (how DO i remember these things?). Perfectly made-up face, and perfectly coifed hair. (i've never used the word "coifed" but if ANYone ever deserved it, it was Heather).
We clicked immediately. She instantly made me feel at ease that this girl was real. And that meant it probably wasn't gonna be a weekend full of singing "kumbaya" in front of a firepit.
She let on right away that she had an ostomy. So we got busy talking bout how we cope with air travel and an ostomy. We sat and drank coffee and made fun of the absurdly athletically-fit, super-toned and tan woman that randomly kept passing by our little table. (come to find out later that woman was another fellow colondar model. But at the time, Heather and I, both decidedly NOT as in shape, busied ourselves with being catty about her).

That weekend I got to know all my fellow models pretty intimately. And I made friends that not only will last a lifetime, and not only are like family...friends that have already proven to be miracle-workers, life-supports, and the best shoulders to lean on anywhere. I admired Heather, she was brave enough to bare her ileostomy bag to all the world to see. I know I bare my stoma all day long, but it's different than having a bag attached to that stoma. And for that, I thought she was amazing. Not only did she bare it on her photo, but when she caught flack for it later, she dared people to challenge her. I admired her, and then, I was proud of her. She was so regal and noble looking in her photo. So elegant.

I got to reunite with her again in person in Baltimore at the Colon Cancer Alliance conference. Her in her signature Victoria Secrets sweatpants suits :)
There was a costume party on opening night. And we were to dress as someone from our favorite decade. Who did both Heather and I show up dressed as? Why, Madonna(s) of course!

Like-a-Virgin and Vogue in the same room at the same time! It was obvious then how we were kindred spirits then. She also loaned me that wig and schooled me as to why blondes DO have more fun (well...sometimes)

That weekend was also Heathers birthday. We all felt so lucky that we could celebrate with her. Mark, one of the other models who couldn't be there, even Fedex'ed one of his cakes to the hotel room! (we made the girl at the front desk smell the box to make sure what it was!).

The next time I saw Heather was just a few months back, in March, for the Flush Out! colon cancer event in Indiana. She was looking fabulous as always. If anything, Heather was always our glam-girl. She knew how to work it, and work it well. She was always 10 times more pulled together than any of us. This photo was taken inside the limo ride to the survivors dinner we attended that weekend

(can we say Va-Va-VOOM!)
That weekend in Indiana, my world kinda came crashing down. I got alot of bad news all at once. And Heather was right there to pep-talk me through it all. Despite of how much of a sourpuss super-bitch I was being.
Later, in May, when I got word that I had a reoccurance. When getting the word out to my extended 'colon-fam', Heather was one of the first to reply to me. She knew exactly what I was feeling, and had the right things to say (which was to not really say anything at all, just know that I was angry, and had a right to be).
When hearing that Heather was not doing well and going into hospice care I had only one immediate ringing thought.

I had to see her.

Nevermind that I was going through chemo and about to have surgery. Nevermind that she lived clear across the country from me. Nevermind that she wasn't expected to make it very much longer. I just didn't care. I didn't know exactly why I needed to see her. I didn't know exactly what I would get from being there. I was cautioned by alot of people to rethink going. Besides I don't really have the money, and airfare to San Francisco was NOT cheap. Nevermind it all. I had one driving thought.

I had to see her.

One of my fellow colondar models Ray (see how everyone of these guys is just a lifesaver?) generously donated some money to me so that I could get the flight. And another friend of Heathers, Krista, and I flew out there last week. We visited Heather once last week, and once this week just before leaving. Again, I don't know what I expected, or what I wanted from the visit. I didn't know if it was purely selfish, or selfless. But I do know, that being able to hold her hand, and talk to her one last time, made the news that came this wednesday night just that much easier.

Heather is no longer in pain. She no longer has to put up the fight of her life. She did worlds of good in everyones life that she touched. And the title she recieved at the Relay for Life in may of "Survivor of the Year" couldn't have been given to a better woman. I want Heather around to make fart jokes and sing badly to Bon Jovi, for years and years to come. Alas, we don't always get what we want. And just knowing that I got to know her at all, will be good enough and yet never enough for me.

For now, These photos are how she'll always remain in my mind. The fiery attitude. That incredible poise and grace. And that awesome contagious smile and laugh. Heather...Hope you're reading my words somewhere in an internet cafe in heaven...send a shout out whenever you can, k?

Sunday, August 10, 2008


You think you get it. You are being empathetic. You try. You attempt. Make an effort.
But you don't know. You can't know. And honestly, even if I could accurately make you feel how I feel, I wouldn't want to inflict that on anyone.
You can think about me.
You can have sympathetic conversations with me.
You can feel outrage or despair at my expense.
You can try to do little things to help.
But you can't know.
You can want to take it all away. Or do it all for me.
But you can't know.
I wake up with it.
sleep with it.
eat breakfast with it.
shower with it.
Drink with it.
Walk my dog with it.
Answer my phone with it.
Scratch my nose with it.
I buy books online with it.
I make fun of fat kids with it.
I live it
breath it
eat it
wear it
cuss at it
use it.
I am it.
and you are not. And so you can't know.
I am not talking to you. Though I know I'll get comments and/or emails to that nature.
No. No I am not talking to you. I'm talking to you though. And probably you too. But don't worry, not you over there.

Wednesday, August 6, 2008

The lurker returns...

I did these a couple times when I first started my blog but I've forgotten bout it as of late. Retelling the various odd things I hear in public bathrooms while I'm spending my 15-20 min. doing my thing.
It was mostly kids saying the damnedest things, considering most the time I was at work doing this. And at work, we have a HUGE childrens program (for music) so there are always kids running round. They do say the damnedest things though.

Anywho, most the time these days I have my ipod going while I'm in there, so I honestly haven't been doing too much eavesdropping. However, last week, I ran outta battery on my ipod and therefore was listening to the people in the stall next to me. It was memorable enough to make me think "I should post this"

So it was a little girl and an older woman (I'm assuming her mom, though it coulda been a nanny, aunt, etc. who knows. not relevant to the story. or maybe it is. not sure)

The convo goes as follows:

Woman: "Alright, go in the big stall so I can help you."
Girl: "Okay. I my tummy is moving around, I think I have to make a poopie too."
Woman: "Go ahead, sweetie, I'm waiting right here."
Girl: "If I squeeze right here, the poopie comes out real big."
Woman (awkwardly): "Alright sweetie, but I don't think you think some things we don't need to talk about, and just keep to ourselves?"
Girl (seemingly oblivious): "Right here, if I push, but then squeeze it is big, and funny shapes."
Woman: "Alright, finish up now, here, take the paper. And honey, we don't need to talk about that stuff outloud. Don't you want to keep that private?"
Girl: "I'm done!"

there was a bit more. But, isn't it poignant how that maybe should have been an opportunity to teach your child to NOT be uptight and embarrassed to talk bout stuff like her funny shaped poop? I mean, how many seemingly mature adults do I know who can't talk about their shitting habits with out awkwardly hesitating and beating around the bush. So why not at least let your kid know early on that it's no big deal? why the stigma?

Not that I wanna get on a soap box bout it, in all actuality when I was listening to that convo I was trying my best not to burst out laughing cuz I couldn't see either of them, and yet n still I could completely hear how mortified that woman was that the little girl just kept going about her bowel movements. So I thought I'd share.

Tuesday, August 5, 2008

Fundraiser wrap up

Whew! I had to post this real quick to get myself back in 'good vibe' mode. I just got an auto-reply email from a friend who I'd sent an email to, and it's really just thrown me into the downward spiral of anger, hatred, and sadness....
sssooooo...fundraising wrap-up news. which is ultimately more happy feeling than what i just read.

Last thursday, my awesome roomie threw a pretty impromptu fundraiser for me, which doubled as a birthday party for her. It was held at the super hip Rockit Bar . For being the solo planner and organizer (with a bit of help from me, and her man) Ro pulled off a damn nice event.

Jason from Rockit was super gracious in loaning us the space. He even went as far as to give us a waitress, and two security guards for our section of the club. The band Your Vegas played for the crowd (it was also their lollapalooza pre-party). They were sweet enough to go way out of their way to give us items to raffle off. I mean, WAY outta their way. I was touched.
<--Guitarist, Mat, from Your Vegas

My friends I see frequently all showed, but I also got some surprises from people I hadn't seen in ages...
the scholasticans came out en force

some co-workers
capoeira friends
even my landlady. who was lookin mighty refreshed and hot btw, back from her vacay to Romania.
We had cake with funny captions

plenty of drinks to go around

As well as food, don't forget the food (french fries fried in truffle oil? as that stacy london chic would say "oh shut up!").

I got to squeeze in a mini dance session with hot bodyguard (they DO exist!)

Of course, there was boobage, and full taking advantage of the boobage

Even the most awesome Jon Imerman (of Imerman Angels fame) came through to just celebrate being alive, and getting healthy.

If nothing else in this world, and if nothing else in this life of mine, I at least have more than one (actually, going on like hundreds) of moments that reassure me that people are genuinely kind in their hearts. I know I've said it before, but it is humbling as hell to see so many people come out to support you, some who don't even really know you. It gives me motivation to keep the positive side of me going a bit more than I may have otherwise. Shit is hard. Noone will deny that, and everyone can recognize that. BUT, man, good friends sure do help out the process.

There is another fundraiser in the works already, because, surgery looms near, and the impending costs of both the actual surgery, as well as not being able to work, are bigger than life. It's all intimidating, to say the very very least. But I have the same feeling I had two years ago this month. A feeling of "lets just get this over with already. bring on the surgeon!" I want to get my life back. Hell, I want to get a life to begin with. The past couple months have yanked things out from me that I thought were stable. With everything going on, I feel like I don't even have my own life anymore. I belong to doctors, I am a victim, I am at times set in isolation, at other times set in a glass box for all to view. I just want to get some 'semblance of the life I sorta envision for myself every now and then.

stay tuned for future fundraiser news. Cuz as many many many people can now attest to, don't nobody throw a par-tay in the name of fucking up some tumors like me and my peeps do! ;)

Tuesday, July 29, 2008


5, 4, 3, 2, 1, GO

I am energy.
I am fire.
I am you, but you don't want to see.
I am why.
I am that.
I am honest, but you don't want to hear.
I am open.
I am air.
I am here, but you don't want to know.
I am wind.
I am life.
I am up, but you don't want to look.

1, 2, 3, 4, 5, GO

Monday, July 28, 2008

eat eaT eAT EAT!

I need to gain weight back. I get it. You don't think i'm trying??
I submit exhibit 9-A to the jury:

exhibit 9-B

Exhibit 9-C

It's rough. but i'll take one for the team and eat 6 corn dogs. wwwwhhhy not?

For reference...it's a burger, some fried macaroni and cheese, and a fried twinkie (not pictured)

The last pic....6 count en, 6 corndogs! g'yeah!

Sunday, June 29, 2008

Did you know..?

Did you know that diarrhea can lead to really low levels of magnesium and/or calcium and that in turn can cause your toes to sieze up and curl in on themselves completely out of your control?
Did you know how freakish it can be when your own body parts take on a life of their own and move without you trying or wanting them to?
Did you know that you can eat tums for a quick fix of calcium?

Yea, fun weekend.

I woke up this morning and while laying in bed I began to yawn and stretch out. Immediately when I stretched my legs out, my calf muscle just spasmed and cramped up out of no where. I thought it must be something like a charlie horse, although I've never had one. It remained siezed up for a good couple minutes with me just whispering "ow ow ow ow owwww". NOT a fun way to start the day.

Then later in the evening I was just laying on the couch and again out of no where my foot just took on a mind of its own. I literally could watch my toes very slowly fold themselves under each other. and I couldn't make them not do it. I massaged my foot, I put it flat on the floor, I tried to flex my toes upwards. Nope, they just went right on back. Freakish.

I called my doc's office, because this brought back memories of oxaliplatin's nasty neuropathy side effects from two winters ago. And I'm not ON oxaliplatin now.

Luckily my doc happened to be the one on call, and he enlightened me that Erbitux (that wonderful beast) has been known to cause drops in magnesium and potassium etc, and that you can also have low levels from diarrhea. Which, in my own special kpoucher kinda way, I guess you could say I've had. I knew I wasn't gettiing the fluids that I should be. But damn it's hard to drink alot.
Anywho, that's been the focal point of my sunday. For now I'm just keeping an eye out. Doc is gonna check the bloodwork I got done on friday to see if they also checked my magnesium levels.

aaahhhh. the good life.

Monday, June 23, 2008

oh yea, documenting

The documentation for today? After a wonderful weekend spent alone getting chemo-fried?

I hate everything.

Tuesday, June 17, 2008

Aw Shucks

Secret admirerererrrs? Wowie.
(oh yea, just for the record, I wasn't intentionally fishing for compliments or vying for attention or anything. though I'm sure none of you thought that).
Just down in the dumps.
But thanks for the kind uplifting comments. helps.

Wednesday, June 11, 2008

As if I didn't look young enough already

Alright, I said I was gonna 'document' stuff more. So *gulp* here goes.
Documentation of the evil phenomena known as "erbirash"
(jeez I hate seeing myself so close up)

the comparison picture below was taken just a few weeks ago.

I look like a pimply-faced teenager. I am not cute.

And this is how I normally can be seen while on chemo:
Don't I just look thrilled.

There ya have it. I guess when I've bitched in the past about how people don't seem to fully grasp that you're "sick" or not well, if you don't look like the typical chemo patient...didn't lose your hair, no outward signs of illness....Guess this time around chemo made sure I got some outwardly visible signs.

Damn I shoulda kept my mouth shut.

Sunday, June 8, 2008

Oh so many friends

I gotta say, doing this shit a second time around, I have a bit more clear of vision.
First time I dealt with this bullshit, I was in a different place. Living in a different place, in a relationship, different perspective on life.
Cancer, shakes you awake, ya? If you were snoozin' on life, coasting through on autopilot, well, what better to give you a swift kick in the ass than a cancer diagnosis?
So, immediately, you start to have this lovey/glowy/shiny everyone is beautiful and i love everyone in my life. and those who I don't love a whole lot in my life...well...i'll just not have them in my life anymore.
As complicated as cancer can be, well it sure makes other things pretty simple. Surround yourself with good people. Cut out b.s. Life is too short. yadda yadda yadda.

Well, this time around, things are different. Different home, no relationship. I have tons of friends. Great, sweet, cool, concerned friends. I have a pretty small and equally concerned family. I have a cool dog...despite being a little bitch everytime it rains. But guess what?
I'm all alone.
None of the above mentioned folk, with the exception of sometimes, the dog, can be there with me all the time.
people can come visit. that's nice. people can text, or call, or email. and that's thoughtful. but when it comes down to it,
I'm all alone.
noone gets to take up residency inside my head next to the myriad of racing thoughts that keep cycling themselves around my head. I wake up alone, I spend good long chunks of the day alone, and at night I go to bed alone.
Which could all be well and good for anyone in a normal position. I hardly think I qualify as being in a normal position anymore.

Apparently some friends assume other friends are keeping me company. I bet people generally assume that at all times of the day I'm surrounded by someone. Of course, we all know what happens when you assume....

Cancer is all mine. It's taken it's place in my life as my one and only. Heh, everyone else can leave me and apparently cancer stays, unperturbed.

Party can end, everyone can go home, and cancer is still right there with me.

He can change his mind, get scared and run away, but cancer is still right there with me.

If there are only two things in life we know for sure, Birth, and Death, I think I just found one more. Cancer is always there.

Wednesday, June 4, 2008

Chemo Armor

I don't know about you, but when I'M faced with doing more gut-spoiling, angst-inducing, all around general cancer killing juice, I find the need to ramp myself up a bit.
You know, give myself a pep-talk, psych myself out, whatever.
And sometimes, wrapping yourself up in a shield really helps. Somedays, that shield can be a snuggly prayer shawl some lovely ladies who you've never even met knit for you. Other days, it could be a shirt. Bought at a concert. A concert that brought you immense amounts of giggly joy. A shirt that is signed by some folks that did a little gesture and may not know how much it meant to you.

Lets give some backstory. I love to laugh. Despite all my dry deadpan wit and sarcasm, I love goofy things. I would much rather see a comedy than a drama. And we all know (well, maybe we don't but we should) that laughter sure does help get through a tough time. Somethings that make me laugh are the guys from Flight of the Conchords. I cannot accurately express how simply silly they're humor is to me.

They were recently in concert here in Chicago, and longstory short, they have been cemented, hands down in my book, as some of THE best guys in the business (whatever 'business' that is). Me just being a fan, and simply wanting to laugh it up a little, turned into getting REALLY good seats to a sold out show, and even a little meeting afterwards with FOTC themselves. If you know me personally, you've probably heard me gush about how great the whole night was. (but since i've been a bad blogger...internetlandia may not be aware.)

Illustrating my point, let me introduce Jemaine and Bret of Flight of the Conchords:and

Awesome, ya? More than just getting to say Hi, thank you, and an autograph (wow..i've NEVER wanted an autograph from anyone....heh...well, i mean...there was that time, back in 89, at the new kids on the block show...but uuhhh...i digress)

So, when going in for my first cycle of the always popular Folfiri chemo a week ago, I decided I wanted some armor. Something symbolic of...eh...i dunno, NOT cancer? Something that reminded me of much happier things than benadryl and nausea.

Seems the obvious choice was:
(mm-hhmm...yea. thats right.)

When I got that shirt signed, I didn't figure I'd ever actually wear it. Seemed kinda odd to wear some random scribbling. But lo and behold, I got some good use outta it. How pathetic do I look in that picture though? Could I look any LESS like a 28 yr old woman? sheesh.

Anywho. I even got to model my nifty little chemo ipod they gave me to wear home for the next two days (lest I start to miss getting pumped full of chemo at all):Anyway. I've got other things to blog bout. But I really just needed to sing the praises of the Flight of the Conchords. They're definitely the kinda thing that I think I might be into.

(c'mon. I couldn't do an entire post about 'em and not get one little song lyric in there....)

Love you guys!