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.

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.

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.

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.

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.

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.