"CancerCon Part 4: What Is the One Thing That Surprise[d] You the Most During Cancer?"
You mean, besides the Cancer?
It's a HuffPo article, very well written (despite the typo in the title), and it includes a broad range of answers. Those interviewed span the spectrum, from suffocating hopelessness to revitalizing rebirth. I am somewhere in between the two.
What hit me from the article, though, was a comments reply. "Finishing treatment is not the end of cancer... merely the end of when people care about your cancer." Wow... she nailed it. So true. Everyone thinks it's over and all is well once treatment is over. In reality, 'after-cancer' is often worse than the cancer. I wasn't prepared for 'after-cancer.' Nope."
Even *I* thought - for the entire three months of chemotherapy and the following nine months of intravenous protein treatment - that "after cancer" meant "after treatment." It doesn't. Not for me. Not at all. Nope.
My last treatment was in November of 2015. Here's a run-down of a typical week 7 months later.
On an average of 1 to 2 days a week, I wake up with an extremely light-sensitive migraine. If it's a weekend, I am in luck. Monday through Thursday, though, I have to weigh canceling class for 60+ students versus figuring out what I can present in class and still make it make sense. All while ice picks are stabbing at my brain.
On an average of 1 to 2 days a week, I have a frontal lobe headache by the end of the day. Yay. I made it through class, only to not be able to grade, answer emails, or write assignments, usually putting me behind for the next day.
Even time my head hurts, I am reminded that my kind of cancer most often shows back up in the lungs.
And the brain.
On an average of 3 to 5 times a day, I have to find a way to adjust the temperature around or the clothes I am wearing so the prickly heat that makes it feel like someone is pouring acid all over me stops. And so that I feel like I can breathe.
This phenomenon will, from this point on, be referred to as The Amazing Acid Wash.
On an average of 5 to... oh, hell. Averages don't work with this one. Because my cancer feeds on hormones, treatment put me into chemical menopause that we are now doing everything possible to maintain. Unnatural, induced menopause has left me unable to control my physiological responses to stress, frustration, embarrassment, and anger. This meaning crying in public is a weekly - and often daily - issue.
On a daily basis, I am reminded of the cognitive damage of chemotherapy. The blank looks on the faces of friends, family, and students are now the signal that I am no longer verbally communicating effectively.
...Or maybe I'm speaking another language.
In trying to walk at least 30 minutes a day 3 or 4 days a week, I've had to map routes in my head so that when The Amazing Acid Wash hits (and it will hit), I have a quick route indoors so I can make it home/back to my office.
(This isn't so much of an issue anymore. It's now in the 90s everyday, so The Amazing Acid Wash hits before I get from my back door to the car. Oh, to still qualify for a handicapped parking pass.)
What a thing to long for. A handicapped parking pass for a perfectly healthy looking person.
Any day that I stand on my feet for more than about an hour or two, I must be prepared for the next 12 to 24 waking hours to feel like I am moving through jello.
I now understand more fully the definition of "fatigue."
If the shower/bath water temperature more than a few degrees lower or higher than body temperature, I can't stay in the water because the pectoral muscles holding up the silicone sack of my reconstruction begin waves of contractions resembling the birth scene in "Aliens."
And skipping the emotional, relationship, friendship, parenting, spiritual, and financial impacts, every time I'm asked if I would like to join a committee/volunteer/go to lunch-coffee-dinner/go to a party/hang out at the bar, or anything else that isn't happening "today," I have to equivocate. I've committed to things and people I love and miss so many times, only to have some mix of the above force me to back out, embarrassed, with apologies and explanations on the outside and a humiliated broken heart on the inside that I've stopped saying yes. How long, then, is it, until people just stop asking.
What it boils down to is two options. Either I go out and face the world, knowing that the appearance of any of the above recurring recovery facets will elicit some mix of pity, sadness, frustration, cluelessness, disbelief, and/or fear on the faces of those with which I will interact - or I shut myself in and face only myself.
I wonder which option my family would choose.
Both options make me want to start screaming and never stop.
Showing posts with label Guilt. Show all posts
Showing posts with label Guilt. Show all posts
Monday, June 6, 2016
Tuesday, May 10, 2016
Blogging Through the Back Door
It occurs to me that time flies, whether you are wasting it or not.
I could sit here and pontificate all day long over the definition of "wasting time" and its relative nature. I could rant about society imposing unreasonable expectations and that a bit - or two - of leisure time here and there is a healthy thing. I could wax on endlessly about how one man's castle is another man's prison, but I don't think that's the important piece of what's aching to get out tonight. The important piece is that I'm losing it. I am fairly certain I have never felt more broken, more exhausted, more... unmotivated in my life. And I'm not trying to suggest I think those issues will be rectified by writing, but I decided, as I was lying in bed for over an hour labeling my mind's frantic tail-chasing as "thinking" and desperately trying to "let it go," I thought, it certainly isn't going to set me back any if I get up and do what I should do for myself.
So now I sit here with a Melatonin preparing a lullaby - and I reread that paragraph. It reads pretty nicely, actually, especially for a first draft. A little catchy, with good rhythm, it screams "opening paragraph, chapter 3 of Stacy Kowtko's new book, 'The New, Amazing, Jaw-Dropping, Grand Adventures of the Phantom Nip' with its admission of weakness followed deftly by the correct answer. You, see, that paragraph subtly, subliminally suggests that I'm getting it right.
Now I'll describe what *actually* happened.
After lying in bed for over an hour labeling my mind's frantic tail-chasing as...
Damn. I really don't want to explain what brought me to this post. I literally typed the fifteen words above before I consciously realized I was, again, telling the embellished story. *Here's* what happened.
For an hour after I laid down to sleep, I lay awake worrying about work and family. I planned my forms I need to complete for the IRS concerning our current "interesting" relationship. I stressed about tomorrow's classes. I promised myself I would make a dentist appointment to at least see if they can save my broken tooth and if I will be able to afford the work that will need to be done. I rehearsed the talk I want to have with my doctor that I now have to leave because I messed up and left them out of my bankruptcy. I chided myself for too much gaming and not enough reading or writing. After every self-admonishment, I desperately reminded myself that I do truly believe everything happens for a reason and that this, too, shall pass. But after every reassurance, another self-admonishment would creep into my thoughts, and the cycle would start all over again.
After about an hour, I gave up and got up. When I got up, I instinctively picked up my phone from the bed and had to tell myself to put it down and pick up a book. A page an a half in, and I couldn't tell you what it said. THAT'S when I decided it couldn't hurt to blog.
Then I spent 20 minutes researching a Google "502. That's an error. The server encountered a temporary error and could not complete your request. Please try again in 30 seconds. That's all we know" and enjoyed a little victory jig when I figured out a way around blogger.com's MAJOR access issues they are currently experiencing. I briefly wondered if the universe was trying to tell me something, but when have I ever listened to the universe?
And even now, as I read back through this one more time before I'm done, I have to convince myself not to replace "unmotivated" with something less... damning. Like... drained. Or... empty. Or... lost. Depressed, even. *Anything* but unmotivated. But unmotivated is what I am, so in the interest of honesty and health and recovery, it stays.
And so I close, with the hopes that this gut-spillage will mix nicely with the Melatonin and lull me to sleep before 3. I close with the hope that this release, this sharing, this naming of the enemy will give me some measure of power of it. I close with the hope that this gut-spillage will end up on the screen of someone who needs to read it. I close with the hope of some decent sleep tonight.
And I can't explain it, but I do still believe in those hopes. I have named my captor, and it now has no power over me. (Rest in peace, D.B.) "Wasting time" really is a relative term, if you think about it.
I could sit here and pontificate all day long over the definition of "wasting time" and its relative nature. I could rant about society imposing unreasonable expectations and that a bit - or two - of leisure time here and there is a healthy thing. I could wax on endlessly about how one man's castle is another man's prison, but I don't think that's the important piece of what's aching to get out tonight. The important piece is that I'm losing it. I am fairly certain I have never felt more broken, more exhausted, more... unmotivated in my life. And I'm not trying to suggest I think those issues will be rectified by writing, but I decided, as I was lying in bed for over an hour labeling my mind's frantic tail-chasing as "thinking" and desperately trying to "let it go," I thought, it certainly isn't going to set me back any if I get up and do what I should do for myself.
So now I sit here with a Melatonin preparing a lullaby - and I reread that paragraph. It reads pretty nicely, actually, especially for a first draft. A little catchy, with good rhythm, it screams "opening paragraph, chapter 3 of Stacy Kowtko's new book, 'The New, Amazing, Jaw-Dropping, Grand Adventures of the Phantom Nip' with its admission of weakness followed deftly by the correct answer. You, see, that paragraph subtly, subliminally suggests that I'm getting it right.
Now I'll describe what *actually* happened.
After lying in bed for over an hour labeling my mind's frantic tail-chasing as...
Damn. I really don't want to explain what brought me to this post. I literally typed the fifteen words above before I consciously realized I was, again, telling the embellished story. *Here's* what happened.
For an hour after I laid down to sleep, I lay awake worrying about work and family. I planned my forms I need to complete for the IRS concerning our current "interesting" relationship. I stressed about tomorrow's classes. I promised myself I would make a dentist appointment to at least see if they can save my broken tooth and if I will be able to afford the work that will need to be done. I rehearsed the talk I want to have with my doctor that I now have to leave because I messed up and left them out of my bankruptcy. I chided myself for too much gaming and not enough reading or writing. After every self-admonishment, I desperately reminded myself that I do truly believe everything happens for a reason and that this, too, shall pass. But after every reassurance, another self-admonishment would creep into my thoughts, and the cycle would start all over again.
After about an hour, I gave up and got up. When I got up, I instinctively picked up my phone from the bed and had to tell myself to put it down and pick up a book. A page an a half in, and I couldn't tell you what it said. THAT'S when I decided it couldn't hurt to blog.
Then I spent 20 minutes researching a Google "502. That's an error. The server encountered a temporary error and could not complete your request. Please try again in 30 seconds. That's all we know" and enjoyed a little victory jig when I figured out a way around blogger.com's MAJOR access issues they are currently experiencing. I briefly wondered if the universe was trying to tell me something, but when have I ever listened to the universe?
And even now, as I read back through this one more time before I'm done, I have to convince myself not to replace "unmotivated" with something less... damning. Like... drained. Or... empty. Or... lost. Depressed, even. *Anything* but unmotivated. But unmotivated is what I am, so in the interest of honesty and health and recovery, it stays.
And so I close, with the hopes that this gut-spillage will mix nicely with the Melatonin and lull me to sleep before 3. I close with the hope that this release, this sharing, this naming of the enemy will give me some measure of power of it. I close with the hope that this gut-spillage will end up on the screen of someone who needs to read it. I close with the hope of some decent sleep tonight.
And I can't explain it, but I do still believe in those hopes. I have named my captor, and it now has no power over me. (Rest in peace, D.B.) "Wasting time" really is a relative term, if you think about it.
Saturday, April 9, 2016
Cheers and Jeers
Spokane has some interesting drivers. It always has. Over the last few months, though, I've been noticing some... changes. Interesting differences. New weirdness. People parked curbside with their door wide open into the driving lane while apparently pleasantly conversing with a friend on the sidewalk. A truck idling while sitting in the middle of an intersection with cars stopped and waiting on two sides. An SUV lazily turning right. From the center turn lane across two lanes of traffic. Weirdness.
I have a theory. I think it's inexperienced nouveau-stoners trying to figure out how to drive while high. This new weirdness I've been noticing never moves fast. It's not road rage or stress or rush hour. I think they are thinking at half speed. They are certainly moving at half speed. If they are moving at all. I wonder if states legalizing recreational marijuana should conduct an education campaign focused not on cautionary tales of a newly legalized intoxicant, but instead offering judgement-free information on what it feels like to be stoned. At first, it's all millennials and hippies and long hair at the bud bar, but now, about a year into recreational dispensaries, it's fewer stereotypical stoners and more soccer moms, grandparents, and bankers. They are the ones that maybe took a hit or two in college, maybe even three or four, but fell in line with societal expectations by refusing to succumb to the evil Reefer Madness. A year in, and the world hasn't imploded because we legalized pot, so they're coming out of the hot box.
It's not these languid, awkward, probably-stoned drivers that get my jeers, though.
It's me.
Driving on Indiana today, I had the pleasure of observing as the aforementioned SUV turned right from the center lane across two lanes of traffic. Traffic moving in the same direction as them before they decided to turn. Five or six cars, actually, right behind said SUV and moving in the same direction. I was one of those five or six cars.
"Niiiiiice, you dumb b!t@h."
It actually took me a breath or two before I realized *my* voice had said that.
I don't say things like that.
I don't even think things like that. Jeers to me.
Now, I could spend hours puzzling over the source of that unexpected rage. I could write about cancer and finances and anxiety and brain damage and menopause. I could lock myself away in my head and chase my own tail to infinity.
But honestly, I don't care why I said it. I don't care because *immediately* upon realizing that it was ME saying those hateful words, my little inner Buddha began to cry. As soon as I had said it, I knew that it hurt me to say it. I could beat myself up for days for being spiteful and petty and juvenile, but instead, I am so very happy that despite the *hell* of the last two years, there is still compassion in me. My very humanity is bruised and weary, but it's alive. Cheers to that :-)
Well, I obviously wasn't stoned.
I have a theory. I think it's inexperienced nouveau-stoners trying to figure out how to drive while high. This new weirdness I've been noticing never moves fast. It's not road rage or stress or rush hour. I think they are thinking at half speed. They are certainly moving at half speed. If they are moving at all. I wonder if states legalizing recreational marijuana should conduct an education campaign focused not on cautionary tales of a newly legalized intoxicant, but instead offering judgement-free information on what it feels like to be stoned. At first, it's all millennials and hippies and long hair at the bud bar, but now, about a year into recreational dispensaries, it's fewer stereotypical stoners and more soccer moms, grandparents, and bankers. They are the ones that maybe took a hit or two in college, maybe even three or four, but fell in line with societal expectations by refusing to succumb to the evil Reefer Madness. A year in, and the world hasn't imploded because we legalized pot, so they're coming out of the hot box.
It's not these languid, awkward, probably-stoned drivers that get my jeers, though.
It's me.
Driving on Indiana today, I had the pleasure of observing as the aforementioned SUV turned right from the center lane across two lanes of traffic. Traffic moving in the same direction as them before they decided to turn. Five or six cars, actually, right behind said SUV and moving in the same direction. I was one of those five or six cars.
"Niiiiiice, you dumb b!t@h."
It actually took me a breath or two before I realized *my* voice had said that.
I don't say things like that.
I don't even think things like that. Jeers to me.
Now, I could spend hours puzzling over the source of that unexpected rage. I could write about cancer and finances and anxiety and brain damage and menopause. I could lock myself away in my head and chase my own tail to infinity.
But honestly, I don't care why I said it. I don't care because *immediately* upon realizing that it was ME saying those hateful words, my little inner Buddha began to cry. As soon as I had said it, I knew that it hurt me to say it. I could beat myself up for days for being spiteful and petty and juvenile, but instead, I am so very happy that despite the *hell* of the last two years, there is still compassion in me. My very humanity is bruised and weary, but it's alive. Cheers to that :-)
Well, I obviously wasn't stoned.
Tuesday, April 5, 2016
*Sigh*
Today, I shared the following with a new person in my life. It was so much easier with visible physical wounds. Now, with no visual signs of illness or injury, I am left to wonder if it's my body or my spirit that needs more time.
"...Yea, this cancer thing pretty much sucks. I was triple positive - stage 1 - grade - 1, 3 months of weekly chemo, then 9 months of Herceptin (artificially induced flu on a menstrual like schedule :-) - and that ended in November of last year. I am not to the "alive" point, yet, but I have had some crazy amazing opportunities to teach - to speak with people - to walk with people - because I am such a TMI person - well, it's been phenomenal. I had been dating my fiance for 6 months when the diagnosis came... but I'm not going to make myself cry, so I'll stop there :-). If you are on Facebook and add me, that's where I chronicled my journey - which, honestly, I've really let up on, but continually go back and try to pick up again. The time I had healing, being sick, having surgeries - it gave me time to write. I had to write and share to get through it, but now... this time in my life is *so* much more stressful than any of that ever felt like... I don't have the energy. The stability, really, to look that closely at myself at the moment. I have to keep life and family together, which it sounds like you know all too well. My then-boyfriend/now-fiance quit work and school to help me keep my job, life, family, and sanity together, and now, as a one income family with canceled extra classes and a variety of other cute financial surprises... it's pretty darn exhausting. But I'm coming back. I can feel it. It's just so darn slooooow.
...I've been... in the role of the most experienced through most of my cancer trip - there were a small few who had walked this path before, but even at 45, I am much younger (for now, I'm sure you are well aware of) than most diagnosed women, so very few in my life, in my circle knew anything of what might come for me. Some very amazing people came into my life that *had* walked this before, and without them... I would be lost. But this, now, post-treatment and pre-recovery, this is hard. This is so much harder than cancer and surgery and chemo and all of it. And there's no damn "final appointment" date. Really, a "this ends" goalpost would make such a difference. Thank you. It was kind of nice, really, to write this with no worry of freak out or embarrassment or pity."
And the saddest piece to me, in this moment, is I kind of feel just like I did when I started this. If that's the case, then what's the point?
Probably the point is to convince me to quit asking what's the point.
Thursday, February 25, 2016
TMI Alert: One Day in Life After C
I suppose it might depend on your definition of TMI, but whatever...
I am starting to understand more of what people mean when they say, "there will come a point where you *know* you are recovering. There will eventually be more days when you feel more like the 'old you' instead of the trainwreck of the 'new you' that seemed like it would never end."
Ok, so no one painted THAT bad of a picture. And I'm starting to understand why that it, too, but that's not my point today.
What is my point today?
My point is I started off today on a high note - a really high note. I interviewed with The Fig Tree - an interfaith newsletter - to become a volunteer staff member that would help edit, keep the office open, organized community education events, stuff like that. And the interview, it was inspiring. It gave me ideas. It made me feel like I could make a difference.
And I spoke with the Washington Community College Humanities Association today about taking a seat on their board to help further education on the Humanities across the state.
I've gotten a ton of work done, finished some form-filling-out, posted some grades, bonded with my son, and updated my GoFundMe.
And that's the stickler today, I think. A few weeks ago, I started a GoFundMe for myself and my family. This journey through breast cancer has left us on the ledge of financial ruin. After exhausting all other resources I was capable of exhausting, GoFundMe was kind of what was left. It hasn't been very successful yet, but in defense of my circles, most people I know are just as "bad off," if not worse off than my family and I. It's been commented on and shared like crazy and that is just wonderful. It makes me feel so loved.
So what is my point today?
No matter what I do, no matter what I accomplish, no matter how many volunteer positions I agree to fill, it doesn't maintenance the cars, get medical attention for my kitties, get phones and computers that actually work, or pay my bankruptcy lawyer. It keeps me busy. It keeps me from thinking about it all. But it doesn't *fix* anything for us. I can't take another job. I can't guarantee I would have the energy to commit to an entry position. Besides, it's not like I don't make enough money to live on, I just don't make enough money to catch up, pay for immediate needs, AND keep up with monthly bills.
On the downswing of days like today, that's the reality that's waiting for me, and it's hard. It's exhausting.
Most of all, it's humiliating.
I must say, GoFundMe, among many positives, at least offers the opportunity to beg without having to do it face to face or stand on a corner with a sign ~ the 1st, I have done many times ~ the 2nd, I've considered, but haven't resort to, I mean, I don't even know the rules for claiming a corner. I also don't seem to have Kanye's knack for getting people to donate just to shut me up and make me go away, unfortunately.
So boiled down to the most simple point today?
Gratitude.
Thank you, GoFundMe, for helping me and so many others save a little face.
I am starting to understand more of what people mean when they say, "there will come a point where you *know* you are recovering. There will eventually be more days when you feel more like the 'old you' instead of the trainwreck of the 'new you' that seemed like it would never end."
Ok, so no one painted THAT bad of a picture. And I'm starting to understand why that it, too, but that's not my point today.
What is my point today?
My point is I started off today on a high note - a really high note. I interviewed with The Fig Tree - an interfaith newsletter - to become a volunteer staff member that would help edit, keep the office open, organized community education events, stuff like that. And the interview, it was inspiring. It gave me ideas. It made me feel like I could make a difference.
And I spoke with the Washington Community College Humanities Association today about taking a seat on their board to help further education on the Humanities across the state.
I've gotten a ton of work done, finished some form-filling-out, posted some grades, bonded with my son, and updated my GoFundMe.
And that's the stickler today, I think. A few weeks ago, I started a GoFundMe for myself and my family. This journey through breast cancer has left us on the ledge of financial ruin. After exhausting all other resources I was capable of exhausting, GoFundMe was kind of what was left. It hasn't been very successful yet, but in defense of my circles, most people I know are just as "bad off," if not worse off than my family and I. It's been commented on and shared like crazy and that is just wonderful. It makes me feel so loved.
So what is my point today?
No matter what I do, no matter what I accomplish, no matter how many volunteer positions I agree to fill, it doesn't maintenance the cars, get medical attention for my kitties, get phones and computers that actually work, or pay my bankruptcy lawyer. It keeps me busy. It keeps me from thinking about it all. But it doesn't *fix* anything for us. I can't take another job. I can't guarantee I would have the energy to commit to an entry position. Besides, it's not like I don't make enough money to live on, I just don't make enough money to catch up, pay for immediate needs, AND keep up with monthly bills.
On the downswing of days like today, that's the reality that's waiting for me, and it's hard. It's exhausting.
Most of all, it's humiliating.
I must say, GoFundMe, among many positives, at least offers the opportunity to beg without having to do it face to face or stand on a corner with a sign ~ the 1st, I have done many times ~ the 2nd, I've considered, but haven't resort to, I mean, I don't even know the rules for claiming a corner. I also don't seem to have Kanye's knack for getting people to donate just to shut me up and make me go away, unfortunately.
So boiled down to the most simple point today?
Gratitude.
Thank you, GoFundMe, for helping me and so many others save a little face.
Wednesday, February 24, 2016
Last Published...
...on Oct 17, 2015. So much for the ability, drive, motivation for consistency, and my Inner Breast Cancer B@d@ss...
I wonder if I had blogged regularly through this... whole thing, if I would have felt stronger...
...or if it would have drained me more.
I wonder if I had blogged regularly through this... whole thing, if I would have felt more sane...
...or if it would have made me crazier.
I wonder if I had blogged regularly through this... whole thing, I would have been able to avoid the current financial crises I find myself facing...
...or if I'm just *that bad* at the daily life stuff.
I wonder if I had blogged regularly through this... whole thing, reality would look more like the grand ideas in my head...
...or if I want to blame cancer because I am a dreamer, not a doer.
I wonder a lot of things. I would say I wonder how important my wondering even is, but I know from experience that making a difference, even to one person, it's important. It's not just important to that person, it's important to our community, our society. Not only do we "get back" what we "put out there," what we send out creates ripple, whether we witness them or not.
I want my ripples to look like smiles. I want my ripples to sound like sighs of relief. I want my ripples to feel like company.
And that can't happen sitting on my couch guzzling Candy Crush Saga. I'm not sure how it DOES happen, but it won't happen in the cocoon of a cell phone screen.
I wonder if I had blogged regularly through this... whole thing, if I would have felt stronger...
...or if it would have drained me more.
I wonder if I had blogged regularly through this... whole thing, if I would have felt more sane...
...or if it would have made me crazier.
I wonder if I had blogged regularly through this... whole thing, I would have been able to avoid the current financial crises I find myself facing...
...or if I'm just *that bad* at the daily life stuff.
I wonder if I had blogged regularly through this... whole thing, reality would look more like the grand ideas in my head...
...or if I want to blame cancer because I am a dreamer, not a doer.
I wonder a lot of things. I would say I wonder how important my wondering even is, but I know from experience that making a difference, even to one person, it's important. It's not just important to that person, it's important to our community, our society. Not only do we "get back" what we "put out there," what we send out creates ripple, whether we witness them or not.
I want my ripples to look like smiles. I want my ripples to sound like sighs of relief. I want my ripples to feel like company.
And that can't happen sitting on my couch guzzling Candy Crush Saga. I'm not sure how it DOES happen, but it won't happen in the cocoon of a cell phone screen.
Sunday, September 20, 2015
The Hubris of the Scholar
sen·ior·i·tis
sēnyəˈrītis/
a supposed affliction of students in their final year of high school or college, characterized by a decline in motivation or performance and can be, although not always, accompanied by an absolute certainty that there is little left to learn.
As time pushes me ever closer to, once again, being a "senior," the reminders that I do *not* know everything seem to be getting more pointed.
The most recent?... "Oh, L@@K," she said, all triumphant and confident and smiling, "I found her! My Inner Breast Cancer B@d@ss was with me all along! The Schol@r inside was just biding her time until I was ready. And ready, I am!" [Imagine arms up and out, with palms turned up towards the sky and head thrown back as the words burst from my very being] "I LOVE AND EMBRACE MY INNER BREAST CANCER B@D@SS!"
My naivety is a never-ending source of entertainment and consternation for me. And probably those around me.
I was so happy to be in a place of "ok." I was so relieved to find some peace. I was so thrilled to feel *good* more frequently than *bad,* that I believed the hype. I swallowed it all, hook, line, and sinker. Chemo had ended *6 months* before. All signs pointed (and still point) to complete and utter destruction of any detectable cancer. I was moving through the reconstruction surgeries with relative ease. With my rose-colored glasses adding a lovely hue to the whole scene, I allowed myself a congratulatory pat on the back for coming through this hell of a cancer journey with my sanity (largely) in tact. I just *knew* that finding my I.B.C. B@d@ss was my first major step into "life after cancer." I treated myself with a rare bit of pride and admiration at how far I had come in a year that was at once maddeningly long and anxiety-inducing short. I may as well have been practicing my "Pomp and Circumstance" walk and decorating the mortarboard I would soon pin to my hair.
I thought chemo was hard. Well, to be fair, chemo *was* hard. But there is a luxury in being the kind of physically ill that is painfully obvious to you and anyone around you. No one (including yourself) expects much of you when you are getting a toxin designed to destroy human cells pumped into you every Friday. And that, I have come to see, is something of a luxury.
The chemicals we put in me now don't make me puke, won't make me bald, and can't, technically, kill me unlike the weekly Taxol injections. There are few visible signs of the chemical battle raging inside me. But this, what I do now every day, this is harder. Every day I get up, and I look in the mirror. The way I look and the way I feel are so discordant, so opposing that cycle of physiological anxiety begins anew, just like it did the day before and just like it will tomorrow. I look... good. But I feel... indescribably terrible. So much for my short-lived senioritis.
Saturday, March 14, 2015
Oh, To Be Behind The Camera
I haven't been on here. Again. I'll explore it, I will. I promise. There's something more immediate I want to process. Isn't there always.
Whatever, so anyway...
We took portraits yesterday. We had this idea awhile back that a zombie picture shoot would be cool - it would be fun - with a healed mastectomy scar surrounded by way-too-much-left-to-prepare-for-the-reconstruction skin, we could make some *sick* looking wounds. And we had limited time - mere months - because the reconstruction surgery would take away this unique opportunity.
Well, time flies. The surgery is April 2nd, 2 weeks and 5 days away. In preparation, we started brainstorming other themes we might want to include that might take advantage of my soon-to-change-again chest. If nothing else, it would be a treat. It wasn't initially planned to explore breast cancer and its impact, in my mind, we were doing it to take advantage of a unique and soon-to-disappear physical state that now rules my daily life. The more we talked, the more I came to see, though, that the themes that really attracted me were more than simple fangirl infatuation. The themes we settled on were zombie, warrior (duh, isn't every cancer diagnosee a warrior?), and steampunk. Steampunk was my idea. I love steampunk. It fascinates me. It inspires me. It excites me. Steampunk, to me, is a literary genre born of creativity and genius and innovation... and necessity and desperation and often last recourse in the face of adversity. And it was discussing this piece - and the accompanying, self-written essays that will be read when (hopefully) this photo shoot becomes an exhibit - when all the pieces of this shoot fell together in my head. From diagnosis on June 30th, 2014 to sometime in August (before I began research on my treatment options); that was my Zombie phase. I couldn't think. I couldn't reason. I couldn't communicate. I couldn't do anything but go where I was directed and do what I was told to do. All someone had to do was make the right noise, and I would follow along in a haze. If you don't get that reference, you should try "the Walking Dead;" it's a great show.
The second phase was my Warrior phase. She's exhausted. The Warrior made all of the decisions about surgeries and treatments. The Warrior got out of bed every Friday for 12 weeks to go to the chemo suite for 5 to 6 hours. The Warrior got up every day (almost every day) and went to work. The Warrior had to make the command decision to stop lecturing in class because she couldn't get from point A to point B in her lectures coherently, much less intelligently. The Warrior counted the days until she could take off her armor and put down her sword and simply be. Like I said, she's exhausted.
The third phase, which I am now heavy in the middle of, is the Steampunk phase. This is a time of reinvention, of improvisation, of ingenuity. I don't *have* to reinvent myself; I am choosing to reconstruct post-surgery Stacy into something new. It's exciting, enticing, intoxicating. Sure, it's a bit nerve-wracking, but how many people get the opportunity to consciously orchestrate the definition of themselves? We are all doing it with every action, every decision, every stumble, and every fall, but it happens without really noticing, if you think about it. I can't *not* think about it. I COULD choose not to act, but I would have to conscious miss appointments. I would have to actively refuse treatment. I would have to look at one breast in the mirror every day and be reminded that I had opted out of reconstruction. I am doing none of those. I am going to write and speak and recover my way into a new expression of me. And because of opportunities like Listen To Your Mother - Spokane, 2015, the ongoing creation of documenting my experience on film with a brilliant former student - and now, dear friend - Mikayla Daniels, a wonderful photo shoot made real through the efforts of many special people, and other project still in their infancy, the potential exists for many people to hear my story and watch it unfold. What more could an educator want?
To not be in front of the camera, that's what. To sit in the relative safe space behind the lens and watch someone else do this. I am beginning to see what many have intimated to me in various ways - it's a bit unsettling to share so much. It's a bit unnerving. I have always chosen to leave myself exposed, knowing I could weather any resulting storms. I would like to say this is no different, but... the Warrior is *so* tired. Who am I to ask her to continue marching bravely into these storms? I think she really wants this to all be over. It's sitting behind the Warrior's eyes in the portraits, almost like she's pleading with me. Just let it be done.
"If you wish for peace, prepare for war." Thanks, Flavius. In the Warrior's defense, she may be exhausted, she may have taken a knee temporarily, but she's been repairing her armor and sharpening her weapons while in this eye of the storm. Tired doesn't mean done. Wiser? Yes. Slower? Absolutely. Experienced? For sure. Grayer? Hehehehe, yes. But done? Not by a long shot. It makes me sad to acknowledge all of that, but happy would be incomprehensible without sadness as its reflection.
Whatever, so anyway...
We took portraits yesterday. We had this idea awhile back that a zombie picture shoot would be cool - it would be fun - with a healed mastectomy scar surrounded by way-too-much-left-to-prepare-for-the-reconstruction skin, we could make some *sick* looking wounds. And we had limited time - mere months - because the reconstruction surgery would take away this unique opportunity.
Well, time flies. The surgery is April 2nd, 2 weeks and 5 days away. In preparation, we started brainstorming other themes we might want to include that might take advantage of my soon-to-change-again chest. If nothing else, it would be a treat. It wasn't initially planned to explore breast cancer and its impact, in my mind, we were doing it to take advantage of a unique and soon-to-disappear physical state that now rules my daily life. The more we talked, the more I came to see, though, that the themes that really attracted me were more than simple fangirl infatuation. The themes we settled on were zombie, warrior (duh, isn't every cancer diagnosee a warrior?), and steampunk. Steampunk was my idea. I love steampunk. It fascinates me. It inspires me. It excites me. Steampunk, to me, is a literary genre born of creativity and genius and innovation... and necessity and desperation and often last recourse in the face of adversity. And it was discussing this piece - and the accompanying, self-written essays that will be read when (hopefully) this photo shoot becomes an exhibit - when all the pieces of this shoot fell together in my head. From diagnosis on June 30th, 2014 to sometime in August (before I began research on my treatment options); that was my Zombie phase. I couldn't think. I couldn't reason. I couldn't communicate. I couldn't do anything but go where I was directed and do what I was told to do. All someone had to do was make the right noise, and I would follow along in a haze. If you don't get that reference, you should try "the Walking Dead;" it's a great show.
The second phase was my Warrior phase. She's exhausted. The Warrior made all of the decisions about surgeries and treatments. The Warrior got out of bed every Friday for 12 weeks to go to the chemo suite for 5 to 6 hours. The Warrior got up every day (almost every day) and went to work. The Warrior had to make the command decision to stop lecturing in class because she couldn't get from point A to point B in her lectures coherently, much less intelligently. The Warrior counted the days until she could take off her armor and put down her sword and simply be. Like I said, she's exhausted.
The third phase, which I am now heavy in the middle of, is the Steampunk phase. This is a time of reinvention, of improvisation, of ingenuity. I don't *have* to reinvent myself; I am choosing to reconstruct post-surgery Stacy into something new. It's exciting, enticing, intoxicating. Sure, it's a bit nerve-wracking, but how many people get the opportunity to consciously orchestrate the definition of themselves? We are all doing it with every action, every decision, every stumble, and every fall, but it happens without really noticing, if you think about it. I can't *not* think about it. I COULD choose not to act, but I would have to conscious miss appointments. I would have to actively refuse treatment. I would have to look at one breast in the mirror every day and be reminded that I had opted out of reconstruction. I am doing none of those. I am going to write and speak and recover my way into a new expression of me. And because of opportunities like Listen To Your Mother - Spokane, 2015, the ongoing creation of documenting my experience on film with a brilliant former student - and now, dear friend - Mikayla Daniels, a wonderful photo shoot made real through the efforts of many special people, and other project still in their infancy, the potential exists for many people to hear my story and watch it unfold. What more could an educator want?
To not be in front of the camera, that's what. To sit in the relative safe space behind the lens and watch someone else do this. I am beginning to see what many have intimated to me in various ways - it's a bit unsettling to share so much. It's a bit unnerving. I have always chosen to leave myself exposed, knowing I could weather any resulting storms. I would like to say this is no different, but... the Warrior is *so* tired. Who am I to ask her to continue marching bravely into these storms? I think she really wants this to all be over. It's sitting behind the Warrior's eyes in the portraits, almost like she's pleading with me. Just let it be done.
"If you wish for peace, prepare for war." Thanks, Flavius. In the Warrior's defense, she may be exhausted, she may have taken a knee temporarily, but she's been repairing her armor and sharpening her weapons while in this eye of the storm. Tired doesn't mean done. Wiser? Yes. Slower? Absolutely. Experienced? For sure. Grayer? Hehehehe, yes. But done? Not by a long shot. It makes me sad to acknowledge all of that, but happy would be incomprehensible without sadness as its reflection.
Tuesday, December 2, 2014
Terrified Celebration: The Reality of an Oxymoronic Existence
"Today" (Monday, even though it's Tuesday on the calendar - I haven't slept yet - it's still today) I showed up at Cancer Care Northwest's south office for my final chemotherapy treatment. It's been awhile since I blogged, and I've beat myself up about that. I - we - are taking another step into more undiscovered country, though, and I just can't stay away any longer. I started this blog with the idea to chronicle my search for my inner breast cancer b@d@ss from then on, but it has been sporadic, to say the least. It has been approximately (exactly) 137 days since that first blog, and there are 7, total. That has bothered me. Often and intensely. Yes, the blogging and the FaceBooking was and is for my emotional health, first and foremost, but I am - at heart - an educator and a story-teller. So many have helped me along the way that I feel it's important to tell my story so maybe women - and men - who walk this road in the future might benefit from the steps I have taken - good or bad. It's how we learn, as a species, from our history, both macro and micro. I also took vows as a Buddhist to dedicate my meditation practice and my life to doing my bit to ease the suffering of all sentient beings. If the Buddhist belief in reincarnation is really the "way it works," the Bodhisattva vow also includes the promise that, should the vow taker achieve enlightenment, they will still chose to come back and work again to alleviate the suffering of all. My vow was my promise to God that I would be the best person I could be for as long as I am allowed so that my and others suffering is just a bit less because I lived - that's the goal, anyway. Really, I can't not tell my story. It occurs to me, though, as I begin this entry with the goal of blogging every day of my post-chemotherapy life until further notice (for a variety of reasons that include guilt), that I should go a little easy on myself. I am, after all, one of those sentient beings I vowed to ease the suffering of, if at all possible. If every living creature on this planet deserves kindness and compassion and the easing of their suffering - and I hold this idea as my dearest, universal Truth - I *have* to acknowledge that *I* am one of the deserving. And that hurts to say. I want so desperately to *believe* that statement, and it is *so* difficult. But that doesn't change the Truth that I deserve the same respect I give others. It does *not* change that Truth. It doesn't. But I so wish it didn't make me cry and feel like I need to keep repeating it to make it a little more true.
Anyway, in respect of the fact that I deserve relief from suffering, I am beginning a quest to view my sporadic blogging is *not* a negative thing (I will have to keep reminding myself this for some time, I'm thinking). It is a natural thing, really. Even in the best of times, dedication to the recording of your life is not an easy undertaking mentally, emotionally, or logistically. And it has its own time and place. Unless someone wants to chronicle their entire life, there are times when regular, frequent blogging just shouldn't happen. That's a whole different kind of crazy that gets movies made about them. Looking at the indescribable impact steroids have had - and are still having - on my emotional control, mood swings, sense of self worth, faith in myself, anger threshold, and pretty much anything else you can think of that involves *moods,* combined with the impact "chemo brain" has had, continues to have, and will continue to have for the foreseeable future on my ability to do my job easily, to organize the many spheres of my life, and pretty much anything else you can think of that involves traversing the *busy* that is daily western life, blogging with any kind of frequency would have been... well, I want to say unhealthy, but if I'm being honest, it would have been self-abusive. And if I saw anyone I knew attempting that while going through what I've experienced over the last three months, I would have literally sat on them to make them take a break and rest themselves. That means I deserve the leniency, if everyone else does too, right? I so wish it didn't make me cry and feel like I need to keep repeating it to make it a little more true, though.
So I allowed myself that time to rest. In fact, I didn't feel guilty about resting when I needed to, because I KNEW I needed to recover well so that I didn't end up extending my healing exponentially. Now that I can see the mending beginning and I am not trapped in the... mental and emotional... hell that chemo sometimes has been, I feel strangely guilty that I didn't blog more. I've been wishing I had recorded more of the crazy I experienced. But I have to believe that if I had been capable of recording it, I would have. During these meltdowns, every ounce of energy was spent not losing what little hold I had on my sense of stability and sanity. Don't get me wrong, this wasn't a daily experience, but there were enough of them and they were close enough together that they filled in the few empty cracks left by the steroid-chemo brain train wreck. I deserved it the breaks; the rest. And it's nice that it hurts a little less to say that now, because I believe it a little more.
(Sidenote - it is so interesting how the point of a blog often emerges rather differently than expected and it is so fun when it happens. It's happening right now :-)
My Ego wants to add that there were often days where I felt decent. Like, really decent. Decent enough to get things done - with work, with my sons and grandchildren, with my writing contract, with the oh-so-fun vintage eBay store, with my boyfriend of almost a year - who has walked *every step possible* with me, with my videos I want to make for my history classes, the fiction I've started and never finished. The steroids and chemo brain often leave me unable to complete complex thoughts and tasks, but it wasn't 100% difficult 100% of the time. Instead, though, I would often watch tv or play Diablo or some other leisurely, unproductive activity. There were times I could have been "working," but instead, I was playing. But my Ego is often unfairly hard on me - everyone's is, if you think about it - and it was doing it again. Don't I deserve to have some fun, I mean, even if I *wasn't* going through chemo, EVERYONE deserves fun, right? If that is true, then so do I, regardless of chemo. I prioritized my classes first, and beyond that, all work and no play makes Stacy so much sicker. I deserved the play time. And it hurts a little less to say that now, because I believe it a little more.
And so the purpose of tonight's blog was to help me let myself off the hook for the things I seem to feel I *should* have done, which really is simply a false statement. Because I *did* do what I was supposed to. I took care of myself as best I could so that I could start getting better as soon as possible. Even when I slipped and worked too long or stayed up too late, I always came back to taking care of myself. I deserved it. I still deserve it. Saying that makes me smile. Right now, I have little trouble believing it :-).
postscript: I have been watching "Sisterhood of the Travelling Pants" for the first time ever while writing this entry. The scene playing while writing that last paragraph was in a store where one of the four main teenage girl characters is making a documentary with the help of a 10 year old girl. The main character just found out the girl is dying of leukemia. Normally, the main character is rather irritated by the girl, but today, she's asking her to help her with one more interview. The girl figures out that the main character learned her secret and looks at her and says, "Are you asking me to help you with the film because I have leukemia?" Thoughtful, delayed response - "Maybe." The girl thinks about it and smiles a little. "Okay."
:-)
Anyway, in respect of the fact that I deserve relief from suffering, I am beginning a quest to view my sporadic blogging is *not* a negative thing (I will have to keep reminding myself this for some time, I'm thinking). It is a natural thing, really. Even in the best of times, dedication to the recording of your life is not an easy undertaking mentally, emotionally, or logistically. And it has its own time and place. Unless someone wants to chronicle their entire life, there are times when regular, frequent blogging just shouldn't happen. That's a whole different kind of crazy that gets movies made about them. Looking at the indescribable impact steroids have had - and are still having - on my emotional control, mood swings, sense of self worth, faith in myself, anger threshold, and pretty much anything else you can think of that involves *moods,* combined with the impact "chemo brain" has had, continues to have, and will continue to have for the foreseeable future on my ability to do my job easily, to organize the many spheres of my life, and pretty much anything else you can think of that involves traversing the *busy* that is daily western life, blogging with any kind of frequency would have been... well, I want to say unhealthy, but if I'm being honest, it would have been self-abusive. And if I saw anyone I knew attempting that while going through what I've experienced over the last three months, I would have literally sat on them to make them take a break and rest themselves. That means I deserve the leniency, if everyone else does too, right? I so wish it didn't make me cry and feel like I need to keep repeating it to make it a little more true, though.
So I allowed myself that time to rest. In fact, I didn't feel guilty about resting when I needed to, because I KNEW I needed to recover well so that I didn't end up extending my healing exponentially. Now that I can see the mending beginning and I am not trapped in the... mental and emotional... hell that chemo sometimes has been, I feel strangely guilty that I didn't blog more. I've been wishing I had recorded more of the crazy I experienced. But I have to believe that if I had been capable of recording it, I would have. During these meltdowns, every ounce of energy was spent not losing what little hold I had on my sense of stability and sanity. Don't get me wrong, this wasn't a daily experience, but there were enough of them and they were close enough together that they filled in the few empty cracks left by the steroid-chemo brain train wreck. I deserved it the breaks; the rest. And it's nice that it hurts a little less to say that now, because I believe it a little more.
(Sidenote - it is so interesting how the point of a blog often emerges rather differently than expected and it is so fun when it happens. It's happening right now :-)
My Ego wants to add that there were often days where I felt decent. Like, really decent. Decent enough to get things done - with work, with my sons and grandchildren, with my writing contract, with the oh-so-fun vintage eBay store, with my boyfriend of almost a year - who has walked *every step possible* with me, with my videos I want to make for my history classes, the fiction I've started and never finished. The steroids and chemo brain often leave me unable to complete complex thoughts and tasks, but it wasn't 100% difficult 100% of the time. Instead, though, I would often watch tv or play Diablo or some other leisurely, unproductive activity. There were times I could have been "working," but instead, I was playing. But my Ego is often unfairly hard on me - everyone's is, if you think about it - and it was doing it again. Don't I deserve to have some fun, I mean, even if I *wasn't* going through chemo, EVERYONE deserves fun, right? If that is true, then so do I, regardless of chemo. I prioritized my classes first, and beyond that, all work and no play makes Stacy so much sicker. I deserved the play time. And it hurts a little less to say that now, because I believe it a little more.
And so the purpose of tonight's blog was to help me let myself off the hook for the things I seem to feel I *should* have done, which really is simply a false statement. Because I *did* do what I was supposed to. I took care of myself as best I could so that I could start getting better as soon as possible. Even when I slipped and worked too long or stayed up too late, I always came back to taking care of myself. I deserved it. I still deserve it. Saying that makes me smile. Right now, I have little trouble believing it :-).
postscript: I have been watching "Sisterhood of the Travelling Pants" for the first time ever while writing this entry. The scene playing while writing that last paragraph was in a store where one of the four main teenage girl characters is making a documentary with the help of a 10 year old girl. The main character just found out the girl is dying of leukemia. Normally, the main character is rather irritated by the girl, but today, she's asking her to help her with one more interview. The girl figures out that the main character learned her secret and looks at her and says, "Are you asking me to help you with the film because I have leukemia?" Thoughtful, delayed response - "Maybe." The girl thinks about it and smiles a little. "Okay."
:-)
Tuesday, August 5, 2014
Discipline
Why has it been so hard, I wonder, to get back in here and do this blogging thing. I *wanted* to share this experience. I *needed* to share it. It's been days and days and days since I blogged. I publicly wondered why on FB yesterday and received a variety of honest and creative answers. None of them were right, I've decided. It's because I don't have the discipline. Anymore, it feels like I used all of my "let's get this sh!t done" ability in graduate school. I would like to say I know that isn't true, but if the last 4 or 5 years or so is any indication... Well... 3 or 4, I guess. I used to say it was time, or lack thereof. I never have the "time" for whatever it is that I'm not doing, in that moment. Lie, lie, lie. Discipline would have made the time - or at least provided a more honest answer. The universe gave me all the time I need weeks ago. Well, three weeks ago, to be exact. Full right radical mastectomy at 45 in a *very young* (at the time-blog for another day) relationship. All the time in the world, it gave me. So THIS is the lesson in this, eh? Discipline and dedication? Ugh. It was so much more entertaining having so many things going on that I could flit from one thing to the next, never staying in one place too long - especially never long enough to *finish* the thing. Ok... ok.... I get it. I'll slow down.
Really, it forced both of us to slow down (ok, short reference to that not-so-new-anymore-relationship). Maybe it saved us. Not that we needed saving, but on the flip side of that statement, doesn't everyone? One of many continually evolving results of this slow down? I've never felt this strong... this confident... this capable... or this attractive, actually. I've always known that, for me, confidence - appropriately placed and well-balanced - is sexy. I've also always considered myself a rather confident person, but I've never really felt "sexy." And I'm not going all base and carnal and instinct here. If I say someone is "sexy," I'm really saying they are... intriguing. Interesting. Engaging. Attractive, but DEFINITELY not just physically. Magnetic. Mysterious. If I call someone sexy, I'm admitting that they have a factor of "irresistible" for me that includes both inner and outer qualities. Basically, I guess I have to know someone before I can determine if I consider them "sexy" or not. I've never thought of myself that way. I've never felt that any of those words described *me.* Until recently. Maybe I'm finally getting to know myself a little bit. Or maybe I've engaged the ultimate self-esteem protective mechanisms~denial and delusion, and someday, maybe tomorrow, maybe next week, maybe next year, it will all come crashing down around my head, and I will look in the mirror, finally seeing the 'mutilated freak' that many have seen in their own post-mastectomy mirrors. It's a possibility. In some dimension, I suppose. But I've looked in the mirror *a lot* over the last three weeks. I've taken pictures and looked at them. I've even zoomed in to see the changes up close. And unless I've *always* been a mutilated freak and just never known it, that's just not what I see. I see me. And I like what I see.
I know many women who have had to go through a mastectomy would not agree. And that's perfectly fine. I do hope not to be judged by any of my new BC family, but it could happen. I grabbed the "mutilated freak" phrase from a breast cancer discussion board. A post-surgery woman wrote something to the effect of, "of course I am wearing a prosthetic until I can have the reconstruction - I would *never* leave the house looking like a mutilated freak..." I have chosen not to wear a prosthetic. I will have a reconstruction, when it is medically feasible, but... I'm almost going to miss this step - this stage. I like me more now than I ever have in my life. But if my breast wasn't part of my self-esteem calculation before surgery, it shouldn't be now, either. Basically, it shouldn't matter what my chest looks like or if I have the reconstruction. Hmmmm. I like looking at it that way.
But that still leave thousands - maybe hundreds of thousands - of women out there that are *not* comfortable with how they look post-boob-removal. I'm not even going to speculate on that. There are *so* many reasons for that, and none of the reasons are really my concern. I did read an article recently, though, that got me thinking about this issue of body, health, and self-esteem. At Salon.com, I ran across an article called "You Don't Have to Dance at Your Mastectomy." It's about an OB/Gyn who asked her OR - and the entire nation - to dance with her for 5 minutes before laying down on the operating table to have a double mastectomy. As the author points out, it's the kind of feel-good, oh-I-could-never-be-that-strong-but-thank-god-someone-is kind of story that eventually makes it way onto Lifetime or the Sundance Channel, inspiring reporters covering to quippingly ask "What do you do before a double mastectomy? Dance, of course!" The author's response to that answer? "Blow me."
I can definitely see how most people would not dance into *any* surgery involving the word cancer. But I can also see how some would. I might even venture to say "have to." But just as a dancing mastectomy shouldn't worry about how others in similar situations behave, shaking, scared, crying mastectomies shouldn't compare themselves to the dancers. I'm willing to bet~largely based on personal experience~that the dancers have their own hidden demons, they are just different than the ones that make you shake and cry and freak out in the face of cancer. They are the demons that make some people dance, instead. But don't let them fool you. They are still demons.
http://www.salon.com/2013/11/08/you_dont_have_to_dance_at_your_mastectomy/
Really, it forced both of us to slow down (ok, short reference to that not-so-new-anymore-relationship). Maybe it saved us. Not that we needed saving, but on the flip side of that statement, doesn't everyone? One of many continually evolving results of this slow down? I've never felt this strong... this confident... this capable... or this attractive, actually. I've always known that, for me, confidence - appropriately placed and well-balanced - is sexy. I've also always considered myself a rather confident person, but I've never really felt "sexy." And I'm not going all base and carnal and instinct here. If I say someone is "sexy," I'm really saying they are... intriguing. Interesting. Engaging. Attractive, but DEFINITELY not just physically. Magnetic. Mysterious. If I call someone sexy, I'm admitting that they have a factor of "irresistible" for me that includes both inner and outer qualities. Basically, I guess I have to know someone before I can determine if I consider them "sexy" or not. I've never thought of myself that way. I've never felt that any of those words described *me.* Until recently. Maybe I'm finally getting to know myself a little bit. Or maybe I've engaged the ultimate self-esteem protective mechanisms~denial and delusion, and someday, maybe tomorrow, maybe next week, maybe next year, it will all come crashing down around my head, and I will look in the mirror, finally seeing the 'mutilated freak' that many have seen in their own post-mastectomy mirrors. It's a possibility. In some dimension, I suppose. But I've looked in the mirror *a lot* over the last three weeks. I've taken pictures and looked at them. I've even zoomed in to see the changes up close. And unless I've *always* been a mutilated freak and just never known it, that's just not what I see. I see me. And I like what I see.
I know many women who have had to go through a mastectomy would not agree. And that's perfectly fine. I do hope not to be judged by any of my new BC family, but it could happen. I grabbed the "mutilated freak" phrase from a breast cancer discussion board. A post-surgery woman wrote something to the effect of, "of course I am wearing a prosthetic until I can have the reconstruction - I would *never* leave the house looking like a mutilated freak..." I have chosen not to wear a prosthetic. I will have a reconstruction, when it is medically feasible, but... I'm almost going to miss this step - this stage. I like me more now than I ever have in my life. But if my breast wasn't part of my self-esteem calculation before surgery, it shouldn't be now, either. Basically, it shouldn't matter what my chest looks like or if I have the reconstruction. Hmmmm. I like looking at it that way.
But that still leave thousands - maybe hundreds of thousands - of women out there that are *not* comfortable with how they look post-boob-removal. I'm not even going to speculate on that. There are *so* many reasons for that, and none of the reasons are really my concern. I did read an article recently, though, that got me thinking about this issue of body, health, and self-esteem. At Salon.com, I ran across an article called "You Don't Have to Dance at Your Mastectomy." It's about an OB/Gyn who asked her OR - and the entire nation - to dance with her for 5 minutes before laying down on the operating table to have a double mastectomy. As the author points out, it's the kind of feel-good, oh-I-could-never-be-that-strong-but-thank-god-someone-is kind of story that eventually makes it way onto Lifetime or the Sundance Channel, inspiring reporters covering to quippingly ask "What do you do before a double mastectomy? Dance, of course!" The author's response to that answer? "Blow me."
I can definitely see how most people would not dance into *any* surgery involving the word cancer. But I can also see how some would. I might even venture to say "have to." But just as a dancing mastectomy shouldn't worry about how others in similar situations behave, shaking, scared, crying mastectomies shouldn't compare themselves to the dancers. I'm willing to bet~largely based on personal experience~that the dancers have their own hidden demons, they are just different than the ones that make you shake and cry and freak out in the face of cancer. They are the demons that make some people dance, instead. But don't let them fool you. They are still demons.
http://www.salon.com/2013/11/08/you_dont_have_to_dance_at_your_mastectomy/
Sunday, July 27, 2014
Why so serious...
Today, I am tired. After several days of "I feel better than I have in SO long," I am flipping tired. And I am uncomfortable. I have *no* idea how chronic pain people do it. This recovery hasn't so much "painful" as it has been consciously, continually, unavoidably uncomfortable. Before I went to my first post-surgery check-up, I had started stepping myself down off of the oxycontin. I felt like 10 mg every 3 hours was a bit much after the first couple of days. I expected my doctor to step it down even more to Vicadin, but to my surprise, he was pretty insistent that I stay on this until he would see me again. He wrote another script for 5-10 mg every four hours and sent me on my way. I've never had a doctor react like that. I didn't know what to think. They've *always* started stepping it down by now. Am I magically feeling less pain than everyone else? I've always claimed a high pain tolerance, but seriously... My surgeon is one of the best in the region; there's no way he would be careless with something as strong as oxycontin. Then I thought... here's this lady who just had her entire breast amputated and lymph nodes removed. If I were a doctor, looking at what she's already gone through and what may be coming, oxycontin withdrawal might be the least of my concerns for her. That realization was a bit sobering.
But today, I think I was just... naive. Or hopeful. I am 12 days post-surgery, and today, the *only* thing that has allowed me comfort and rest is my pain medication. I don't know why this is different from my partial hysterectomy or my tummy tuck. I don't remember feeling like this 12 days after surgery, and both of those surgeries were WAY more invasive. Maybe it's because of the physical location and impact of this particular procedure. Maybe it's the fact that I am a bit older than I was for either of those. Maybe it's the fact that I went into this surgery with weeks of stress build-up, and this surgery is just the first step of treatment over the next year and the first weeks of fear of reoccurance, which will last the rest of my life. Maybe it's the psychology of this recovery that is the key factor. Maybe I think too much. Maybe I'm just tired. It's not like it's been the most usual of months.
I do know that I feel differently today about "wake me up when it's all over." The next line in the song is "when I'm wiser and I'm older." That song has always grated on me. If you sleep through "it," whatever "it" is, you won't be wiser when you wake up, just older. I am an experience whore. I crave new experiences, and I *love* learning from them. I have traveled halfway around the world to find them. I've driven thousands and thousands of miles guided by the flip of a quarter to find them. "I am the happiest when I am in unfamiliar territory. When everything is new and different and unknown. When I am nervous and bit scared. I am so *alive* then." Welp, I got what I asked for. And right now, I get the song a bit better. Please. Wake me up when it's all over. I don't give a sh!t if I'm wiser or older, just let me sleep through this. I am so tired.
And the worst part? The piece of all of this that *really* sucks, but ultimately doesn't? I got lucky. I got *so* lucky. Contained cancer, no radiation, no chemo, I mean, really. Herceptin might give me the flu for a year, but I get to keep my dreadlocks and some semblance of what my life used to be. And that is one major reality (of several) that keeps me from sleeping through this. Who am I to waste this opportunity? What would I do if my prognosis were worse? I don't know. All indications point to me never knowing... if I'm lucky. I have been, so far. So I won't sleep through this. I may b!tch and moan about it sometimes. I may sit and cry because I miss 44-year-old-never-had-malignant-cancer Stacy. But I won't sleep through it. That's what I keep telling myself. Today, I am just so tired, it's harder to form the words, that's all.
But today, I think I was just... naive. Or hopeful. I am 12 days post-surgery, and today, the *only* thing that has allowed me comfort and rest is my pain medication. I don't know why this is different from my partial hysterectomy or my tummy tuck. I don't remember feeling like this 12 days after surgery, and both of those surgeries were WAY more invasive. Maybe it's because of the physical location and impact of this particular procedure. Maybe it's the fact that I am a bit older than I was for either of those. Maybe it's the fact that I went into this surgery with weeks of stress build-up, and this surgery is just the first step of treatment over the next year and the first weeks of fear of reoccurance, which will last the rest of my life. Maybe it's the psychology of this recovery that is the key factor. Maybe I think too much. Maybe I'm just tired. It's not like it's been the most usual of months.
I do know that I feel differently today about "wake me up when it's all over." The next line in the song is "when I'm wiser and I'm older." That song has always grated on me. If you sleep through "it," whatever "it" is, you won't be wiser when you wake up, just older. I am an experience whore. I crave new experiences, and I *love* learning from them. I have traveled halfway around the world to find them. I've driven thousands and thousands of miles guided by the flip of a quarter to find them. "I am the happiest when I am in unfamiliar territory. When everything is new and different and unknown. When I am nervous and bit scared. I am so *alive* then." Welp, I got what I asked for. And right now, I get the song a bit better. Please. Wake me up when it's all over. I don't give a sh!t if I'm wiser or older, just let me sleep through this. I am so tired.
And the worst part? The piece of all of this that *really* sucks, but ultimately doesn't? I got lucky. I got *so* lucky. Contained cancer, no radiation, no chemo, I mean, really. Herceptin might give me the flu for a year, but I get to keep my dreadlocks and some semblance of what my life used to be. And that is one major reality (of several) that keeps me from sleeping through this. Who am I to waste this opportunity? What would I do if my prognosis were worse? I don't know. All indications point to me never knowing... if I'm lucky. I have been, so far. So I won't sleep through this. I may b!tch and moan about it sometimes. I may sit and cry because I miss 44-year-old-never-had-malignant-cancer Stacy. But I won't sleep through it. That's what I keep telling myself. Today, I am just so tired, it's harder to form the words, that's all.
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