Who Doesn't Love a Good Surprise?

"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.

The best bridge between despair and hope...

...is a good night's sleep, they say.

They also say, "don't burn bridges."

Two nights ago, I couldn't sleep. I can't really point to the reason, but I just couldn't sleep. "They say" insomnia is a common complication of cancer treatment. "They say" it can last for years. I made it through the night and the next day, though. I used to sleep 4 or 5 hours a night for weeks on end - and that's a maximum. It wasn't as easy as it used to be, but I made it through.

Then last night, sometime around one am, when I could barely hold my eyes open, I got the hiccups. For the last few weeks, I've been getting these bouts of hiccups that seem to have no cause (although that's fairly common), but new for me, they also seem to have no cure.

Fast forward to 3:45 am - less than 12 hours ago. I'm laying on my back on the couch, still hiccuping, with tears streaming down my face and filling my ears. For many years - the last couple of decades or so, anyway - I've lived with night terrors born of my past. As a result, for most of my adult life, I never really enjoyed a "good" night's sleep, not on a regular basis. Except for a four or five month period before my cancer diagnosis. My life and my state of mental health aligned in such a way that I began sleeping through the night. Every night. For nights on end. Then I had to get a breast cut off, and that screwed everything up.

Now, two years later, my surgery wounds are healed, but chemical menopause, acid washes (I refuse to call them hot flashes any more), and an apparently malfunctioning diaphragm rob me again and again and again. "They say" the best bridge between despair and hope is a good night's sleep.

I wish my bridge was more than a precarious, Indiana Jones-esque, frayed rope mockery of a contraption.

*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.

The DMZ

I have been staring at a blank page for...  ever, it seems.  I have *so much* swirling inside me - churning, really - that I have the overwhelming, rather irrational, urge to throw up.  It's as if vomiting would expel all of the retching, putrid filth inside, leaving me refreshed, energized, and above all, empty.  Lighter.  I would give anything to feel a gaping void where there is currently a roiling cesspool of anxiety.  I'm not going to write about the myriad of issues pertaining to my current crisis, although my continually evolving relationship with cancer certainly contributes to this nausea.  What sits like a rock in my gut is the crushing reality that there are *so precious few* in my life that do not have a major quantum shift taking place in their own worlds.  I almost can't count the number of people I consider near and dear to my heart that are now in the midst of their own painful transformations, and it literally makes me sick to my stomach.

I suspect my turmoil might be a result of what can only be described as raging empathy emerging from my still-infant Inner Breast Cancer B@d@ss.  I have become intimately familiar with raw, unbridled terror through this journey.  It is a facet of everyday life.  Now, though, many people I love the most must stare into the eyes of their own fearful beast.  Just typing that makes my mouth water and my stomach turn.  It really is harder to watch it happen than to live it.  People shake their heads at me when I say that, but...  well...  they are wrong.  I would rather live it any day of the week (and twice on Sunday) than sit meekly on the sidelines, powerless and impotent.

This empathy emerges, I think, from vivid memories of the worst of my meltdowns.  I remember lying in bed at night, muscles rigid, trying to minimize my tremors so that Brian could sleep.  Eventually, I would creep into the living room, curl up on the couch, and simply sob for hours.  I worked so hard to keep the tiki mask in place.  I couldn't let the people I love see me like that.  It wasn't embarrassment.  It wasn't a lack of trust.  It was because there is so much pain and suffering in life; I could *not* add to their burden.  In the dead of night, though, masks often get dislodged. Never before had I felt so helpless, so broken, so incapable of drawing another breath.  There were times when I begged the fear to consume me; I longed for it to own me, to take away all control, so I could just let the current sweep me out to sea.  Never in my life had I *not* believed in my ability to weather the worst.  I knew me.  I trusted me.  I believed in me.  Until this.

And again, I quell the urge to hurl.  The gorge that rises in my throat, though, is not the floating scum of my own terror.  It is the helplessness I feel knowing that many I love are now taking those same steps.  Their story may be different than mine, but the result is the same ~ same, same, but different, all f#ck!ng over again.  I know they are trying their damnedest to lie still at night, so others can sleep.  I can feel them sneaking into their living rooms to rage and cry where no one can hear, even if only metaphorically.  They are shaking and quaking on the inside while desperately trying to keep the tiki mask in place to protect the ones *they* love, because they see no other option.

But they are wrong, just as I was wrong.  There is another option.  They are not the first, and certainly will not be the last, to traverse the shadowy landscape of fear.  They are a very few among so many that have fought and will fight these battles, time and time again.  A single soldier, though, cannot win a war; it takes an army.  So just in case someone reading this is standing in the middle of their own personal combat zone shivering and weeping and scared shitless, I thought I'd remind you; I've been through basic training, and I am still standing.  I may not be a battle-hardened warrior (just yet), but I have stared down the most evil of demons and the scariest of enemies, and I have a lot of fight left in me, yet.  You don't have to walk this alone.  You don't even have to ask.  I am here, if you want, and I will cross this minefield with you.  It would be my honor.

And my salvation.

Just as long as we get to stop, sometimes, so I can throw up.    

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.

And now I'm making deals?... The Inner Breast Cancer B@d@ss has yet to show her face

The potential of loss over the next 10 weeks became a little overwhelming today.  It seemed to all just hit me at once, although, in reality, it was one lose followed quickly by another, followed quickly by another.  Running to the bathroom between classes almost wasn't fast enough today.  I could lose my hair.  That would start soon.  I could have permanent heart damage.  We won't know until we know.  Osteoporosis - that could happen.  I *am* losing the coordination of my hands, but haven't felt *too* much pain, yet, but I drop *so much* now.  What will that mean for driving?  No cross-stitching.  Don't laugh.  I love it.  I can't figure things out like I used to - and now it is sooooo hard to teach like I used to.  I get lost in my reasoning - but now what I have are pieces with no connections.  I can't lean on my hands *at all* or they are instantly half in pain and half asleep.  There is no closure where there once was a very cozy place for me; a cozy place, in fact, that I only discovered about...  8 months ago.

And my breaking point - my favorite comfort food doesn't taste good anymore.  I spent more than I should have to indulge myself.  My appetite hasn't been great, but it's been steady.  I was so ready to treat myself on payday.  So of this rant - this is what I've lost in the last 24 hours - lost some hand coordination = driving, typing, cross-stitching - lost the ability to self regulate body temperature, especially at night/can't sleep close to anyone or anything - I can't figure things out like I used to, like even yesterday, and it is severely affecting my lectures - leaning on my hands puts them half in pain and half asleep - and closure.  Everyone deserves a little closure sometime, right?  And my favorite comfort food.  It tastes like nothing doused in ketchup now.

So I'm still willing to deal.  One.  Just one.  If I can keep one of these things I am either in the process of losing or in danger of losing, I would be happy.  I promise.  I don't even need to choose.  You pick, and I'll be happy with it.  Really.  I will.  Trust me.