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! ;)