Friday, January 22, 2016

Critical of "awareness," of course I am!

Awareness.  Who fucking needs it?  

Those who haven't pranced their way through CancerLand certainly know what a pink ribbon means, possibly even know someone else whose life has been affected by that dreaded C word.  (No, not THAT C word.  I can easily type out the words cock and cunt without referring to them as a "C" word.)


Those of us who have taken our steps through CancerLand, as The Cancer Curmudgeon puts it, have all the awareness we could ever ponder having.


How would we or how could we forget? 


We are scarred. 


We have been poisoned with chemo and/or radiated, both of which cause residual collateral damage to our bodies and minds. 


Some days are better than others, but then some are not. 


Those are the days that I get out of breath walking through the house, courtesy of cardiotoxic herceptin. 


Those are the days when I still throw up after trying to eat because of how sick I was during chemo, that now my esophagus and stomach get out of sync when trying to process food as I'm eating, so it doesn't go anywhere but back up--this is years after the last dose of chemo I was poisoned with. 


Those are the days when my arms are excruciating from lymphedema and as awesome as my sleeves are, they only help minimally. 


Those are the days when my scars on my chest hurt badly.  By badly, I mean imagine taking rebar, cutting it into two equal pieces of a foot long each, strapping it to your upper chest vertically, and then having someone slam a baseball bat into that rebar repeatedly. 


My skin is no longer normal.  If I even look at paper the wrong way, I have multiple paper cuts.  This is coming from someone who used to do yard work for hours bare handed, and only occasionally needed gloves.  I loved the feel of dirt on my hands.  Now, I'm grateful to have the opportunity to have horse dirt on my hands, mud, and horse poop.


Days where the neuropathy is so bad in my feet that I'm afraid to walk across the floor because I'm not sure I won't fall on my face and break something. 


Days where the nerve damage from a shitty surgery has fucked up my upper chest, arms, and even around toward my back so badly that bumping into a door frame or wall can cause me to literally wind up on my knees sucking in air so I don't throw up or pass out.


Days where my brain works better than others.  CICI (Chemo Induced Cognitive Impairment) is real, let me fucking assure you.  My phone, tablet, and laptop are all synced now for keeping the calendar updated all the time.  You may not think this is a big deal, but for someone who formerly had a borderline eidetic memory when it came to names, addresses, and numbers, I cannot tell you how devastating this actually is, especially when I had enough memory for detail that I could once write nearly fifty pages of fiction a day.  There are times when I can attempt to articulate something, either verbally or written, know what's in my head, what it is I want to attempt explaining and yet fail epically with what I'm trying to say.


Recipes, I could recite and write down recipes for days.  I'm lucky if I can remember a recipe from one week to the next if I want to repeat making it or share it with someone. Now, I struggle to write my name because of the nerve damage and messed up/lack of entire muscle control that no physical therapy could ever fix.  Filling out a check for something makes me want to to violent things with the pen and checkbook because my manual dexterity for writing is gone.  My handwriting and even printing look completely different from what they were five years ago.


Fatigue that's so bad, I literally can't move some days for hours on end. 


There's probably more I could list, but I'm probably forgetting it and will likely think of it at two o'clock in the morning when the laptop isn't on.


I've had to learn to prioritize and give myself time to adjust and function.  If I volunteer on a Monday, I've learned not to have much of anything planned for the next day.  If something absolutely cannot be avoided the next day, then I've learned to appreciate being able to utilize the slow cooker to have one less thing to really deal with on Tuesday and to try to avoid having anything that has to really be done on Wednesday, other than the usual stuff.  For me, slowing down isn't something I've ever really had to do, I accomplished things, did things, and now, I have to stop and think, look at my phone, try to figure out what I can manage and when I can manage it.  It bothers me that I can no longer do things at the rate I once did them.


You're probably sitting there thinking to yourself, "But Horse Doovers, at least you're alive!"  Well, yeah, I'm alive, but at what cost to my body, mind, functionality, and having to logic out what I can and cannot do?


My goals right now are to remain alive long enough to see my youngest graduate from high school, which is next year.  Beyond that, my goal is to get a degree and try to get into oncology counseling.  I'm already doing that with the private support group I maintain.  Somehow, some way, I want to get back into actual horseback riding.  I don't care if it's once a week or once a month, I just want to be able to ride again.  If I could figure out a way to incorporate the oncology counseling and equids, that would be even better.


Another goal is to bring information to doctors about how neglected oncology survivors feel after they've traipsed through CancerLand as a patient advocate/doctor educator.  Yet another goal is to continue to add my voice to those of the metsters in raising as much hell as possible for an actual cure, not more awareness because it hurts my heart to see post about mesters who have bad news because of a lack of an actual cure, or even worse, lost their lives because a cure is needed.  It hurts my brain to know that money is valued so highly above the lives of these women and men who are forever gone from their families and friends, so I, too, will raise hell as long as I possibly can because any death from cancer is one death too many.


All of these goals are equally important.  All of these goals are equally do-able.


Awareness for those of us who have been to CancerLand is every fucking day.  

Less "awareness" in terms of don't talk about it to make more people aware, be about it and do, for accomplishment.

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