My Reminder.

I realize this is not exactly the timeliest of posts. But, I figured, looking back over alot of what I've written...sometimes...I may seem a bit...depressed.
Now, mind you, that is not to say that I do not have a large portion of my being consumed by ill-feelings of some sort at any given time. HOWEVER, I don't think that it speaks to the truth of who I fully am.
I don't think I'd ever be described as "perky", but alot of the time, I'm pretty goofy. I like to laugh. Yea, I know, everyone says that. But I do. I love nothing more than getting swept up by a wave of laughter so hard and at something so ridiculous that I am rendered unable to speak or breath for several minutes. (alot of you who know me in person have witnessed these laughing fits, which often end in me doubled over clenching my gut with tears streaming down my face).
This is January. of 20-flippin-10! and I am still here!! I am here, and I am able to laugh. Not at everything. Not all the time. But I am still capable of laughing. Smiling. Cracking dumb jokes. Talking smack. Living.
The living isn't easy. Its hard going most of the time. But I spend all my efforts on trying to make it as easy as it can be, at least for me. I try with all my might to seem as carefree, and as giddy as you please. So maybe I'm not. Not all the time. But as the saying goes, you fake it til you make it, right?
I feel bitter at the world around me and my circumstances quite often. My inner dialogue often falls into rants about how unfair things are, and how jealous I am of everyone else around me. Right or wrong, I fall prey to that.
But I can still laugh. I savor that laughter like it was a fine wine. In my place in life, at this point in time, laughter holds more value than any material thing. This isn't prophetic earth-shattering information or observation. I hear it all the time, how much people supposedly value laughing (and good friends, sharing moments, etc etc). Rather, this is just a reminder.
No New Years Resolutions, more so, these are my New Years Reminders.
I'm alive. I'm fairly functional. I have amazing family. I have incredible friends. I have support in my corner. I am still not an asshole, and I am not normal, no. But I can laugh my ass off sometimes and that can be all I need.

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.