Wednesday, May 20, 2009

Have you kissed your cancer survivor today?

So I hear that June 7th is "National Cancer Survivor Day". While I'm not entirely sure I'm buying into the cause...far be it from me to deny a little recognition of the absolute bullshit that I (or we, as survivors) are going through. Although, I honestly don't know if I really am all that comfortable in the role of "survivor". Its kind of an age old debate amongst people with cancer. Do you call yourself a Survivor? A fighter? A patient? Do you define your status, or avoid mentioning any "status" at all? I've heard arguments for and against all of the above. And they're all pretty valid. Some people can get rreeeaaaaallly touchy with the wording. Right down to how someone who's passed away from cancer is sometimes stated as John Doe "lost his battle with cancer yesterday..." b/c it makes them sound like they lost in the end instead of focusing on the strength and fight that they gave.
I dont think I ever got entirely comfortable with saying I was a "Cancer Survivor". The general public sure does love to push it on you though. And Just like other forms of labeling, you may not necessarily like them, but sometimes it's just easier to be able to classify yourself for certain situations. I've been in situations where I didn't really want the conversation to begin to focus on my cancer-journey, but I saw it heading that way, and it's just easier to say "oh, well y yes, I'm a cancer-survivor". Some people are so uncomfortable with the C-word they are grateful to be able to just nod admiringly and carry on the conversation in other directions. There sometimes happen those folks who will want to probe you further, but I usually have a set of generic answers for those situations.
(i.e. "yes, its very hard, but I have a great support system and medical team." and "How am I now? Well, I'm here and good at the moment, and that's all I can ask for!"...no matter how "good" I'm feeling.)
Anywho, I actually started writing this entry for a specific reason, and just realized I let myself start rambling...so I'm going to hijack it back to my original intent. Although I would love to hear your thoughts on labeling, the 'survivor' role, etc etc. I am sure I will be retouching on this in the near future. Considering I debate it to myself pretty much daily.

BBUUUTTT, Last night my buddy Jonny Imerman and his organization Imerman Angels held a "Survivors Celebration" at swanky "Martini Park" in downtown Chicago. It was an awesome event, with free cocktail reception, lots of well-connected individuals within the cancer community speaking, and networking galore. And, I got to showcase *drumroll please* My new Cancer Sucks shirts!!!!!
Yes Yes YES! You can now get on, completely customize the color of the shirt and the words of your shirt, making it your very very own. A very good friend of mine makes them right here locally and independently. He's graciously offered to donate proceeds to my Fund to help with all the ongoing medical bills. Go ahead and click below to get started customizing your very own...
Womens shirt's
Mens shirt's
Please please please spread the word on these shirts, they're great quality, and I don't think many would argue that it DOESN'T suck. Support your cancer survivor/fighter/patient/warrior/bitch/or badass. They make perfect outfit for a lovely visit to the doctors office, or your local infusion center, or even (as I so nicely model above) at swanky downtown clubs. Order and wear on June 7th!!

Monday, May 18, 2009

I am just a visitor in your world

I'm a guest at this point.

I peer into the same activities that I once was wholly apart of. I observe things like parties, and other social events. I attend dinners, and performances. I engage in these "small talk" conversations. I even physically partake in activities like shopping, or exercising.

For all intents and purposes I think I do a very good job at involving myself among our social world. I had 26 years of practice at being myself, so I'd hope that I'm decent at it. I don't know anyone else who can play the role of me, better than myself. When I'm feeling the isolation, the seperation, and the lack of motivation, I can quickly launch into "old normal becca" at the moment someone asks me "So how are you?" And I think most people are none the wiser.

Even though people ask that as a way to mask what they really want to ask which is "How are you dealing with cancer and treatment still? are you tired? sick? doing any better? is it almost over? What happens next? Even though they do that...ultimately, most, don't want to hear all the answers to it. If they did...I would think, they wouldn't mask it with "how are you?" They'd just cut to the chase and ask directly. "How are you?" is just a space-filler.

I've disassociated myself with you. You as in, the rest of our normal world. I don't belong there anymore, as I am not normal. I am in another class now. And not the "cool kids" or the "theater dorks" or the "jocks" class. I am now a member of a society of people, I believe, who cannot help but acknowledge that what we once were is no longer, and what we now are is a completely bizarro twilight-zone reality that most can ever even fathom.

I drive down the street and see a young 20-something mother pushing her stroller down the street and I think "nope. never will be me.".
I stand in line at the bank and watch a couple in front of me who discuss their weekend plans of going camping in michigan. Seemingly no worries other than the fact that they've been waiting at the bank for over 5 minutes to take care of their finances for the week.
I watch an old 70-something woman hobbling out from Panera to her chevy taking her time to watch the seagulls in the parking lot as she puts her cane in the passenger seat.

I see all of this, and am filled with a longing for the irrelevance, enviable monotony , and unreachable normalness. My monotony and normalness is living my days thinking almost nonstop about my guts, my blood, my side effects, my prescriptions, my schedule of emptying my bowels, my money and lack thereof. I spend my days off doing doctor appointments, infusions, procedures, transfusions, waiting room, blood tests, scans, and scopes. I spend my evenings pretending I've found that new perspective on life that makes me enjoy all the little things that much more, when mostly I'm gluing on that smile and going through the motions of who I knew myself to be before the me I am became the permanent patient.


Chase Park Daycamp, circa 1987
Gay Pride Parade, Circa 1996
Senior Prom, Circa 1998

New Orleans Circa 1999
the "Friendsgiving" holiday, Circa 2000

Wednesday, May 13, 2009

Professional Bathroom Critic....

Since being diagnosed with an affliction of the colon, I've developed quite the complex relationship with bathrooms, PUBLIC bathrooms, to be exact. I've never really had a fondness for public bathrooms (though, to be fair, I don't exactly know anyone who does). Particularly, I have an intense dislike of actually touching anything in a public bathroom if I can help it. (which includes such famous practices as "hovering" and the "kick-flush").
That intense dislike has grown to a certain dread now that I am a slave to my intestines. I very literally plan my day around knowing where I can access a 'decent' public bathrooms and at what times I'll be needing to do that. When that planning is done for my own home-city, its not too much of a problem. But when I'm in unfamiliar territory (say...vacation) that is a pretty daunting, if not damn near impossible task.
So I've often joked that it'd be great to just travel around and document, for people like myself, where the best (and worst) public bathrooms are. Maybe even create a little guide book to take along with you. It could be quite the lucrative business considering how many people suffer from Ulcerative Colitis, Crohns, IBS, Colon Cancer, or even just good ol' fashioned weak stomachs. I know I for one would pay for that information, in order to better enjoy my daytrips and vacations.
Well, I actually did start to 'document' my bathroom experiences. I was mostly being silly...but I found this little video from my trip to Eastern Europe earlier in the year that I fully intended to upload but couldn't manage to do it from overseas, and by the time I got back to the states had forgotten about it. Unfortunately, may camera cut off midway before I got to go into detail about this place, but nonetheless, enjoy the first installment of your new friend, The bathroom critic:
video

Monday, May 11, 2009

She's got Betty Davis eeeeyyyeesss....

Apparently, I was not crazy when I thought to myself a few months back that my eyelashes (and eyebrows for that matter) had exploded into a crazy twisty crimpy outrageous mess.
Here I was, hoping and praying that shaving my head did not also mean that I'd lose my eyebrows and eyelashes...b/c you know...that really makes you look like a cancer-patient. (which is one of my top goals. NOT looking like a patient.)
And not only was I not losing them, I was literally pulling out my manicure scissors and trimming my eyelash hairs! Whoever does that?!? I'd never had to "trim" facial hair in my life. But these damn lashes kept growing out too long and then kinking in wierd places and curling back into my eyes! It was so annoying. I trimmed them, and they just seemed to grow back. And my eyebrow hairs were poking out and down and up in all kinds of directions. I had to trim those on many occasions as well.
But I still just figured maybe my hair follicles were all around traumatized and freaking out with all the stress and drugs and low-blood count, etc.
However, in a doctor appointment a few weeks ago, just before my doc was walking out he turned and peered deep into my eyes (which was a bit awkward, I won't lie). After a moment he asked if I'd noticed my eyelashes growing out long and crazy, but before he'd gotten the whole question out of his mouth I yelped "YESSS!" He explained that someone had recently approached him with the idea of marketing the drug that I've been on (Vectibux) to people who'd lost eyelashes and eyebrows in other treatments as a way to grow them in again.
I thought it completely ridiculous that ANYone would even consider taking such a horrid drug simply to get some lashes, but as my friend Jess said the other night "Honey, you'd be surprised the lengths people will go for vanity!" (she being the daughter of a cosmetic surgeon.)
Anywho, he wanted to take a photo of my eyelashes so if this marketing push ever got under way, they'd have some examples to show.
And I give you...my betty davis eyes: