Death Row

That's pretty much what it feels like. Someone whom I hadn't spoken to for a little bit asked me today if I "was any better or still doing treatment?". Before I really even thought about it I scoffed and blurted back "I'll never get any better, I'm on death row, man."
That's when it hit me.
It's essentially how it has felt to me being sentenced to unending chemotherapy just to maintain or manage the cancer that they cannot cut out of me. I am aware that the quote on the back of my Cancer Sucks shirts says "Cancer is a word, Not a Sentence" but it's moreso the idea that regardless of being diagnosed with Cancer, no matter how "well" you take THAT awesome news...in addition...you have to endure the same crap-ass treatments from there on out. Without much end in sight.
Before ever knowing cancer as intimately as I do now, I had a certain...expectation, if you will. Not that I ever expected to get cancer, mind you. But from what I knew about people who got cancer, you found out about it, got chemotherapy (honestly had no clue as to what that actually meant) and/or radiation (my preconception of this was you sat in a room and got blasted with laser beams for days on end. theoretically, I guess I wasn't far off). Than, you got some kind of surgery to cut it all out. And after all that is said and done...you're given the all clear, you're now respected and admired more b/c you were brave/inspirational/strong, and you got to call yourself by a new title of Survivor. That's how it's supposed to happen. It still actually happens to people in that way sometimes. Or, the expectation is you've found it way too late, its so far gone, you instantly just die. Note that in either of these crassly over-generalized views, do you get an ambiguous "well, you have cancer, we can't really get it out of you, or even see it, but it's there, so we're going to give you alot of drugs, lock you in to a regimen that will cement you into your current location/hospital, and really, we don't know what to expect or what will happen because of all this." That isn't how the story is supposed to go!! Damnit.
I'm not exactly sure what my motivation is. What is the impetus for walking myself into my doctors office once or twice a week, sit down in that awesome vinyl "recliner", having a needle plunged into my chest and waiting around a few hours while my body is infused with drugs that set out to destroy cells that seem to keep outsmarting us?? I ask that simply because, the more I think about all the time I spend getting treated for cancer, all I can see is all the things that get taken away from me because of it.
I can't work a full time job.
I can't have children.
I am not even entirely sure I can have sex.
I can't pay my own expenses.
I can't even have a bank account in my name.
I can't really move off to a new city.
I can't take a vacation thats longer than a week.
I can't fart.
I can't drink an iced tea.
I can't go for a full day without a few half hour visits to a bathroom.
I can't eat a salad.
I can't go to college.
I can't, I can't, I can't.

I'm sick to death of shit I can't do. I'm sick of all the trivial restrictions this b.s. has put on me. And even though I describe it as trivial, it really isn't. I may never have really wanted children. But the sheer fact that I CAN'T...as a ramification of things done to me in order to preserve my life...that human right was just blatantly taken away. And to some of the other examples I've given some may argue "oh, you can...it's just a challenge". Yes. You are correct. There are things I could do that may just be an extra challenge...I could fart....through a tube inserted into my stomach. I could eat a salad. Slowly. Chewing to mush. With a chaser of grape juice and an extremely loooooooonnnggg and frustratingly exasperating day in the bathroom later....yes.
I look at my examples and I see whining. But so flippin' what!! I think I've earned the right to whine.
Even though ultimately, its not really whining. It's just honesty. I've been living with this long enough to know that just like I will never be President of the United States...I will never be able to do or have some of the things I touched on.
And it's all cancers fault.
So basically, I'm just sentenced to the rest of my days, however many they be, being stagnantly resigned to this form of death row. It's morbid, yes. It's twisted, true. But it is.
And do not mistake this for gloom and doom. I'm simply being bluntly honest.
I am not seeking sympathy. Or fishing for inspirational words. Trust me, at one point I was THE Queen at "reframing" the situation. (who else could come up with rationalizations like: "well, radiation isn't so bad...it's laser hair removal, I get a great bikini line from it." or "being infertile and sterile isn't that awful, it's like built in birth control! I can go slut it up with no fear of babies!")
But even the Queen of it gets tired of hearing it sometimes.

From Last August

Blow after blow,
taking me way down low.
And I don't know
how much more I can go.

Put on that smile and yes,
it works for awhile.
But at the end of the night,
I throw it back on the pile.

If I just want to lay,
completely wasting the day,
Don't need to hear you say,
I shouldn't pout in that way.

Happy isn't always right,
Laughs can't help every fight,
I know I can feed my soul
Even when pain takes its toll.

Washed out

cool stares and premeditated words,
its changed me.

orbiting around a piece of me that no longer exists,
its changed me.

normalcy averted. bliss thwarted,
its changed me.

doors closed shut, but trap doors left open,
its changed me.

appreciation grown while patience is lost,
its changed me.

a gift in disguise, or a curse in plain sight,
its changed me.

clinging to desire, and awash with ambivalence, what I wouldn't give...
to be able to change it.

Life Support? in our Social Networking realities

When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards cancer-support...is that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.

(and in a related note. Rest in Peace Stefanie Biggs )

I'll Begin bracing myself now *gulp*

grumble grumble, growl growl...
Of course, I need to state my obligatory disclaimer now: IN NO WAY DO MY FOLLOWING COMMENTS REFLECT ANY DISRESPECT TOWARDS ANY PERSONS DIAGNOSED WITH BREAST CANCER. RATHER, IT IS IN RESPECT TO THE OVERSATURATION SURROUNDING BREAST CANCER AWARENESS AS OF LATE.)

So I realized today after a stop in walgreens to grab a bottle of water, that I should really begin to ready myself for the onslaught of Breast Cancer promotional collaborations every where I look. From pink-ribbon shaped cranberry bagels at Panera to pink-ribboned batteries from Duracell, the omnipresent pink ribbon will be infiltrating even more aspects of my consumer life during the month of October.

October, friends, is of course, Breast Cancer Awareness month. Now, I am all for dedicating months to various different issues in which awareness should be gently nudged forward. Buuuuut, in my humble observation, Breast Cancer Awareness is never over. It lasts all year round. I know for certain that in Chicago there are plenty more walk/runs for Breast Cancer throughout the year than are just in October. And I am rarely far from some sort of pink-themed product in almost any given store I frequent.
I suppose the reason I really get so irritated is not that I feel Breast Cancer is not an important issue. I think any and all cancers are evil, horrid, and awful. As far as I am aware every cancer there is can kill you. People should definitely be aware, vigilant, and proactive in their health in general. I guess that I worry how much breast cancer awareness campaigns focus on that one specific cancer as if its the only cancer that a woman can get.

Or is it that I fear the possibility that breast cancer awareness campaigns have gotten so incredibly large and successful that it could be detracting potential funding for research on other types of cancers? I do not want to try and imply that Colon Cancer should be getting the same recognition as Breast Cancer (I mean, theoretically, I could stick to that argument purely based on my own personal experience and based on the fact that colon cancer is a possibility in both men AND women, young AND old, bbuuuuuut, i digress).
Do any of you guys readily off the top of your heads know what the ribbon color or designated awareness month for Lung Cancer is?
Answers: Pearl and November. Learn something new every day. I believe it has also surpassed Breast Cancer as the number 1 leading cancer-related death in women. So maybe we should have some more walk/runs and fundraisers for lung cancer awareness and patients? It'd be lovely to have pretty pearlized frying pans where 10% of proceeds of my purchasing them will go towards Lung Cancer awareness.
Rightfully, the whole designated months for various causes can get out of control, there's a day for absolutely everything. from "National Health Care Professional Day" to "National Root Beer Float Day", it begins to not have any real meaning at some point. But I use that more just for example.
Why am I whining about it anyway?
I don't really know. It all just seems to irk me. Maybe its not right that I'm agitated by it. Maybe I'm just over sensitive due to my own experience with cancer and far too many times having the assumption or misperception if I'm a "cancer-survivor" it must've been Breast Cancer (or even more commonly, lymphoma or luekemia). Maybe it doesn't matter. Who knows. Ideally I'm not sure if there is an answer that would make me get off my soapbox and just shut my trap about it. More walk/runs for more causes? Seem like it'd be overkill. Maybe just less focus on one cancer in particular and more evenly distributed funding towards all cancers? But then, the argument could be raised that they can't equally fund every cancer b/c some are indeed so incredibly rare, that the time and expense would be better served for those cancers that are more prevalant? (heh, which just may be breast cancer). A short fairly interesting article about the top myths concerning cancer would suggest that funding should maybe go towards making sure people who are "ignorant about cancer" are better educated.
Needless to say, I mean no slight towards any one particular person battling cancer, no matter what part of you its affecting. Like my very first post in this blog, it's not a matter of "my cancer is better than your cancer". But rather that I'm just sick to death of the color PINK!! sorry

I guess my left foot has a pretty big ego

Cuz it sure is all puffed up. Pfff.

So, Monday evening while sitting in my room, I happened to glance down and notice that my foot seemed pretty fat. I glance at my other foot and my observation is confirmed. b/c my other foot is decidedly thin and much more 'normal' looking.
I figure this can't be good. And proceed to freak out in my head. I racked my brain (and the brains of those around me) to figure out what the cause could possibly be. It hasn't gone down. but there's no pain, no discoloration, i can feel my feet and move them around just fine. it's just ugly, and very worrisome to me. And even more worrisome that I seem to be freaked out about it, and yet noone else seems to want to acknowledge the potential fucked-upness of this.
I tell my doc, they do a doppler ultrasound, they find no clots. and so that's that. I'm told to just elevate my foot. keep an eye on it. and if anything changes, let them know. That's it? Well, I already know its not normal. and there has to be a reason. And given all I've gone through and the fact that it's NEVER just 'nothing' that goes away with no further ramifications. Nothing has ever just gone smoothly for me throughout this all. I'm really tired, it turns out to be anemia and i'm damn near out of blood. I am short of breath, and can barely walk up stairs...turns out to be spiking liver enzymes and potential toxicity to chemo. I'm trying to be as proactive as possible, and yet seem to get nowhere. i'm extremely aggravated and upset.
So, does THIS look 'normal' to any of you? What the hell else can I tell my doc to do? I'm supposed to be able to go to my doctor and HE'S supposed to be the one who works to figure out the source.

Much needed update (sorry. spank me later)

Hey friends and loved ones. I'd just like to clarify that i have ideas that i want to get out on my blog daily. Sometimes multiple times a day. And for some reason or another, I never seem to get to my computer when I have those ideas, and be the time I do, Facebook suddenly eats all my time.
So, with that excuse put out there for my poor updating ability, let me just launch into where I've been hiding. But first, a teeny update on livingSTRONG. In the summer, July I believe, LiveSTRONG and Nike had a street chalking event in front of the Taste of Chicago downtown. So of course...I had to flex my supreme lettering and spelling skillz!

(feel free to click on any of the photos to enlarge them for a better look)

I just had to knock one out for my buddies over at Imerman Angels, giving em some representation (was actually really impressed with my ability to recreate their logo freehand with chalk on asphalt)
And even Ro-Ro got in on the chalky love, giving some representation to her Aunt(s) and many others we know affected by Boob Cancer. (she definitely got some stops and stares at those killer titties!)

And of course, there where plenty of super talented artists who pulled off pretty massive and, detailed pieces.
But more recently, for the past few weeks (almost a month now) I was fighting more acutely for my health as I seemed to have a sudden, rapid, and intense adverse reaction to the chemo drugs (at least they think that's the cause)
Three weeks ago I went in to see my doc and things didn't look good. My eyes and face were sunken in, my skin was grey almost, but definintely sallow. And I literally wasn't able to do anything but sleep. My liver enzymes spiked up to crazy high levels. as well as my potassium level went way down. I lost a ton of weight. I dropped down to 98 pounds. But in the midst of all this, I had planned to attend the "Colon Cancer is a Big Dam Problem Walkathon" in Little Rock AR. I got the ok from my doc to go, probably mostly because my mom was going with, and two friends. so I had mom there to be my nurse. I wasn't even able to walk i was so weak, thin, and lethargic, so pretty much the whole road trip, i was in a wheelchair. But I was determined to go. It was great fun. And even though I barely look like i'm having a good time, I truly enjoyed meeting so many new awesome folk, specially all those newbie colondar models from the upcoming 2010 issue.
However, seeing photos showing up from that weekend on facebook, I was a bit horrified at how I looked. I know its trivial to talk about physical effects, but you all have to understand, I freak out when something odd happens to me physically because it just serves as an obvious visual reminder of the cancer I try to avoid for little bits of a time.

Making my entrance to Little Rock, don't i look like one happy camper?

Team Babcock rocks the house though!

Bam! Check out them backs!

All the past, present, and future Colondar Models that came back to walk the bridge.
Now, I got bag upon bag upon bag of IV Hydration, with Potassium, Magnesium, and other Electrolytes dripped into me, was taken off Chemo for a bit. I was taking potassium tablets, and just tryiung to eat and gain weight. So, I am pretty positive that I'm on the mend. I feel WAY more energy, and don't need a wheelchair to get around now. That was a scary and hard to deal with moment. To have to depend on everyone around you to push you around in your chair, it was hard for me to just accept it. The doc's can't think of anything to account for my sudden change, after ct scans, gallbladder/liver ultrasound, small bowel follow through, and upper GI xrays, CBC's, and CMP's they don't know for sure what it was. Our general theory is toxicity to chemo, in some form or way. But, before deciding to take a break, I did get the news that my CEA tumor marker levels had gone way down to 8, from somewhere in the 20's before (and ideally you want to get down to nothing. But colon cancer patients sometimes never get down to 'normal' even if they're cancer is technically gone. So I'm a bit relieved to hear that at least the drugs where working to some degree.
I'm taking this "break" to recoup, strengthen myself, and get ready for whatever plan they come up with next. And FULLY taking advantage of the last days of summer. Smoothies, ice cream cones, milkshakes, italian ice....if its cold and delicious, I'm ingesting it!

In other areas, my mom finally got her blue colon star tattoo touched up:
and then my two female cousinds Katie and Jenny both got matching tatt's as me n my mom, in the same spots. I'm recruiting and initiating my army. and these ladies have been official card carying members since day one. but now they can drop the card, cuz they're wearing it on their skin!That felt really nice, to have my mom and my cousins showing their support for me (not that I needed validation, but its a good feeling to have).

And finally, proof that I am feeling waaaaayyy better, this past saturday my grammar school had an unofficial mini-reunion. I haven't seen most all of these folks for about 15 years!! All I knew, is I didn't want to show up looking visibly on deaths door. Sooooo, I think I did a good job cleaning up, and steppin out for a night on the town.


My docs work wonders down they? ;)

Alright, thats part of why I hadn't updated, just wanted to get that out of the way. I have more blog posts written and saved, and just waiting to publish very shortly. So stay tuned, recruit friends to read, spread the word. I want to gain some readers!