That's Why You Have To

"I'm scared to go back there," I said, gripping the reins more tightly in my hand.

The day before the horse beneath me had too much juice. He kept trotting when I said to walk. I forgot my tight circles. And then came the cyclist out from behind on my left, and suddenly Rowyn's back legs were in the air and I was falling to the right and in my mind's eye I saw a bone breaking on the pavement below and Rowyn and Jazz taking off for the barn with my girl clinging to Jazz's back.

I think I was actually more scared for her than me, and it should've been the other way around. In this scenario, I needed more help.

I got off my horse and called his owner. My hands were shaking so hard I could barely operate the phone.

He answered immediately. He was in the Plaza getting ready to do carriage rides. He wouldn't be back to the barn for five hours.

"What do I do?" I said.

"Get your act together and ride him back to the barn," he said. "You can't walk him back. Rita, you have to ride."

Sometimes in your life you would like the easier method back to the barn. This was not a time I was going to get it.

My girl said everything was fine, but my mothering instincts and my anxiety disorder kept projecting images of a broken back or fractured skull as we walked back, turning tight circles every 100 yards or so. I have never had a longer walk back to the barn in my life.

I kept reciting a little ditty, more for me than for him:

We're still friends

but I'm in charge.

Rita and Rowyn

go back to the barn.

If you've never been scared on a large animal, I'm sure this will sound ridiculous. However, if you've ever been on a tall horse and had said horse decide to deseat you on pavement, you'll be here with me.

I. Was. Terrified.

And I had a teenaged girl to get back to the barn, as well as two large animals who could and would yank my arm off if they felt like eating grass. And a two-laned road to cross between the park and the barn.

My friends, it just all the sudden felt REAL.

But we got back. We turned them out. They frolicked. We put them away. And I called the owner again. He said to meet him out there the next day.

So I did.

And we went back on the trail.

And I was terrified.

And it was fine.

And today, a week later, we went back. We turned him out. We saddled him up. We rode him. He was fine.

And so it is.

Some days you're the windshield, and some days, you're the fly.

Never forget the world is a crazy place.

Never forget the world is a beautiful place.

Never stop trying.

ONWARD.

General Frivolity, Horses
We Go On and On

One of the weird things about letting my girl read THE OBVIOUS GAME is that she's had more of a window than is probably good and right into my teenage years. So when I came home today from my twenty-fifth high school reunion and told her about how when my classmate driving the pick-up pulling the haybale-stacked float for the big Homecoming parade circled the town square three times and then just ... drove ... it reminded her of the sled scene in my book. Stupid, and dangerous, and totally, unfathomably fun.


And when I told her about coronation and how the president of my senior class made a lovely speech and told the bored seniors how they really could do anything jumping off from the platform of our small town, she asked if it was the same coronation I wrote about in my book. And it was. It's in a new building, but nothing's changed. The names of the kids are the same last names I grew up with. The smiling parents are now my age, but they're the same. The teenagers may have new concepts in what makes facial hair fashionable for boys or formal wear appropriate for girls, but they have the same impatience for the dance I remember. I'm just on the other side now.


But the ride. Sitting on a haybale on a flatbed on a float with people I've known since kindergarten or more and driving down the highway at least 45 miles an hour to a neighboring town, a neighboring bar, where the extra tables are made of plywood and the video games still take quarters ... that was like stepping into the past. Not having my husband and daughter along heightened the surreal quality because I, for once, had nowhere to be and no time to be there. I didn't even have a car this weekend. I was dependent on rides from other people, just like high school. And the same people stuffed me in their vehicles who had in tenth grade when I was a little late to get a license, Lisa, and it was awesome.

IMG_6391I told them it hasn't been since John Mellancamp any song has made me miss my hometown until Ed Sheeran's Castle on the Hill, because of this: "But these people raised me."


Because despite what a hot mess I was my senior year of high school -- and I know I was, all of you guys, and I'm sorry I wasn't more present and a better friend, but trust me when I say I'm just glad to still be here to share these days with you, because it was that bad, so please forgive me -- you people did raise me, for better or worse.

And this weekend when everyone just hung together on those haybales flying down that highway, laughing to '80s music and forgetting we have kids and jobs and mortgages, I understood maybe better than I ever did that you raised me. We had such a small group for so long, so different than the way my daughter is growing up with a middle school of 800 and a high school of 1200. We were lucky to have 100 in our graduating class. We didn't all have expectations we would go on to more school, and I wish we'd bring that back and be okay with it in my suburb today.

 

 


I read today an article about how kids now are physically safer than ever before but maybe too chained to their phones. When my girl asked me if it was smart to ride the float 15 miles, I realized, okay, NO, it wasn't, but at the same time I used my phone only as a camera and a way to send Bon Jovi to the Bluetooth speaker and at one point it became so coated in gravel dust I couldn't read the screen.

And friends, I felt alive.

IMG_6394

Just like the me I used to be, and maybe still am.

image from www.facebook.com

 

October

I realized recently that I graduated high school the same year a coworker was born.

Let's sit with that.

But then I reminded myself this brilliance was recorded when I was in first grade: https://m.youtube.com/watch?v=kqdJ6CsXt4Y

So it's okay, to be old. Because every generation contributes something awesome.

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Why Are We Here?

I had The Conversation with the little angel tonight. Why are we here?

I grew up steeped in Lutheranism, with a hint of high school existentialism.

I have raised my daughter differently than I was raised. I homeschooled religion.

Partly because of the crises of organized religion. Partly because of my own disillusionment with the laws of God versus the laws of Men.

Oh, parenting is hard.

I want to give her the tools to make sense of the world in a world that denies climate change and the effects of quarterly returns on our ability to be humane.

I want to give her something to cling to that represents what happens when our hearts cease to beat.

The reality is that we will all die, someday. We don't know when or how, only that we will. The young: They can't understand that. I didn't understand that.

I said to a co-worker this week that I'd borrowed a mission statement from someone whom I've forgotten: Live a life you don't need a vacation from.

I've tried to do that. We cut out eating out so we could ride horses. We shifted things around so we could have adventures. We drive shitty old-model cars and live in a bank foreclosure house so we can live a life we don't need a vacation from.

I believe that.

This year's cancer scare taught me that it can all be over tomorrow. You could have the rug pulled out from under you at any minute.

Are you ready?

Do you spend your time on what matters?

I don't, not entirely.

I need to make more time for my art, my writing.  I was good at it before I had a commute.  I need to get better at it now.

What do you need? Let's make time for it. Together. Because a) it won't mean a thing in an hundred years and b) it will mean everything to those we leave behind.

Both of those statements are true.

 

Cancer
It's Over: Scent

They say scent in the strongest tie to memory. What I will remember from this time is the scent of me.

I weathered radiation treatment during a hot Missouri summer. They told me I couldn't use normal deoderant because it contains aluminum, which is akin to putting aluminum foil in the microwave when undergoing radiation treatment.

This is what I smelled like:

  • Burnt flesh

  • Lavendar

  • Linseed oil

  • Aloe

  • Musk

  • Neosporin

  • Aquaphor

  • Eucerin

  • Dead skin

  • Sweaty polyester

  • Wicking athletic bras

  • Wet cotton

I finished my last radiation treatment last Friday. Since then, I've shed a layer of burnt skin, brown, almost black.

Underneath is the fuschia of regeneration.

Skin is pretty amazing stuff.

It itches. My God, it itches. I've tried not to scratch, but even the reapplication of Aquaphor after each shower has ruined at least ten tshirts and countless bras, and now with the skin so raw and new I'm not sure what I will wear to work tomorrow, when I'm sure they expect me to return anew and healed now that the treatment is over.

Except it's not really over yet. The radiation is still working inside me, and will continue to work for a few weeks, shining the flashlight over the dark room to make sure no cancer lurks in the corners before we shut the door for now. Until the next mammogram. And the next mammogram will reveal a completely new me, the me that is: after.

I will never smell aloe again and not think of this time.

But I am relieved. It is over. For the first time since April 2017, I can look at life through eyes unclouded by breast cancer. And that's a good thing.

ONWARD.

Three Days

{Editor's Note: In the midst of Harvey, talking about anything else seems weird, but I'll forget if I don't write now, so please forgive.}

There are three days of radiation left. Today was my last radiation oncology appointment until follow-ups. I apparently missed a medical oncologist appointment scheduled for today. I didn't realize they scheduled it. I was hoping to hit my out-of-pocket max before seeing her again. It will be here soon, and then the Festival of Specialists and Scans will begin, because hey, I can pretend to be Canadian for four months! Fully covered healthcare!

The therapists and nurse and doctor clucked over my skin, which is fuchsia bordering on purple in places and covered in dark brown dots, as though my pores tanned darker than I ever have. I'd take a picture, but some people get queasy with such things and anyway, it's less a bid for sympathy than a seriouslyIdidn'tknowskincouldlooklikethis sort of a situation. It burns and itches on the inside and the outside, but that should fade soon. (If you really want to know, this is not me but you can see the weird red-with-brown-dots here: http://www.independent.co.uk/life-style/health-and-families/health-news/breast-cancer-isn-t-sexy-woman-shares-post-radiation-images-to-show-reality-of-disease-a6709516.html?amp)

The doctor looked at my chart and noted how the time has flown since my diagnosis in April and I thought, well, hell, MAYBE FOR YOU BUT THIS HAS BEEN THE LONGEST SUMMER OF MY NATURAL BORN LIFE but I nodded and smiled because my husband was there and he hates drama. I like that he came with me both so I wouldn't forget what people said but also I'd avoid thoroughly embarrassing myself by going Britney all over the office with three treatments left. But oh, the tantrums I threw in my mind's eye! Then my husband pointed out oncology folks have to be up all the time because can you imagine a cynical and disengaged cancer doctor who hates his job? Okay, fine. Point taken. G is always so damn rational.

It's nearly over, though the doc said I'd continue to crackle for another few weeks as the radiation sterilized me from the inside out. He did mention recurrence is indeed lower when radiation is combined with lumpectomy, leading him to believe no matter the margins some errant cells can be left behind and the radiation is the final sweep before you close the door and lock it behind you, hoping to never open it again. I'll accept that explanation and the symptoms that are the cover charge.

ONWARD.

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Stories I'm Listening To

Since I've started my new job (at almost seven months in, it's almost not new anymore), I've endured an hour-long commute each way. Some days, when Beloved is in town, we carpool. Other days, when I drive myself, I've discovered Overdrive, which allows me to check audiobooks out from my library for free. I've never been much for thrillers, but I-70 is so horrifying with people going from 75 miles an hour to full stop while texting, that I've realized thrillers and biographies are about as deep as I can go while driving. Plus the cumulative fatigue from radiation makes me want to fall asleep when the traffic gets slow, so I need some action on the audiobook to keep me awake.

As far as thrillers go, I've enjoyed Ruth Ware, particularly as all her audiobooks are narrated by Imogene Church, whose British accent makes both "What?" and "Stupid!" sound like the most profound words ever spoken in the English language. This last week, I also listened to AMERICAN SNIPER, the autobiography of celebrated sniper Chris Kyle, and that inspired a spirited discussion at home regarding war and the mindset required for war and my own personal existential crises triggered by war (in high school I discovered CATCH-22, the first book to truly encapsulate the way I feel about war, so that pretty much explains my perspective). I'm pretty sure we agreed to disagree, with my husband assured we'd all die if I were in charge, and I assured that if we did, it would be with a clear conscience.

Prior to Ruth, I went through another of my Neil Gaiman phases. Let me recommend anything by Neil Gaiman on audiobook, because he reads all his own stuff. NEVERWHERE is particularly wonderful, and you'll never think of the London tube system in the same way ever again. I haven't even been to London, but the angel of Islington is on my mind all the time.

Listening to books is so much different than reading them. You're still living in someone's head, but it's a much slower process. I remember when my third grade teacher used to read to us, particularly BUNNICULA. How soothing it is to be read to. I only wish I could do voices. I'd surely love to be an audiobook talent if I could do voices and accents. Alas.

Where was I going with this? The stories. The days have started to bleed together, and I've had to take walks every day at work to avoid falling asleep from the radiation fatigue. When I go for walks, I wear my headphones, and I listen to my stories. For most of this month, I was in Fallujah and Ramadi hearing about badasses, then it flipped to a reach in England I can't find when I try to look it up. I was hoping it was based on a real place so I could see it, the way I searched in vain for Stephen King's DUMA KEY.

The stories have also interspersed with my stress dreams. There's the one where I'm cleaning grout in my bathroom. There's the one where I'm trying to step on the brakes in Vicki the destroyed convertible, and the car won't stop. There's the recurring one where I'm going back to college again, even though I went twice, but this time I have nowhere to live and the stress of finding somewhere to sleep is all I can concentrate on.

I keep having these dreams where I work all night, and I wake up with my neck muscles tight, feeling like I haven't slept at all.

And so, in a sleep-drunk blur, I immerse myself back in the stories.

When my leg was broken, I read my way through Stephen King's THE DARK TOWER series. Now my Goodreads list functions like a touchstone for what I'm going through, business books reflecting my ambition and political autobiographies and novels my confusion about the stories the news is telling me.

Truth be told, I'm a little scared by the changing weather patterns and the hostility between nations.

Truth be told, I'd rather read novels than the nightly news. At this point, truth is stranger than fiction.

I'm still working on my own stories, but more and more I'm adding my own life back into something that was supposed to be entirely fiction. We'll see if that works. Maybe it won't. At the end of the day, immersing myself in stories feels better than immersing myself in the chaos going on in the world.

 

Politics, Writing Comments
Radiation Booster

I am supposed to be at a Royals game with Doug French right now. I'm not, because in spite of the fact he's in town this week only, I had to text him while bawling in the parking of KU Cancer Center in Lee's Summit and tell him I just couldn't do it. I needed to go home.

I went in to my third week of radiation expecting to be in and out in about fifteen minutes, like usual. That is not what happened.

Let me preface this by saying my cancer team is made up of decent, good people. There is not a bad apple among them. That said, I think it must be very easy for people who treat lots of cases to forget that for most people they treat, this is the first time. It's a good lesson to remember in any job you do, whether you drive a school bus or operate on people's spines or manage new college graduates -- if you interact with the public, some of the people you deal with are scared or intimidated, and it's not only your job to do your job, it's also your job to monitor them and respond in kind. If you want to be really good at what you do, that is. This is a lesson I'm internalizing through this experience, and I hope it makes me a better person overall.

Today after I lay down (this is the closest approximation visually I can find) and closed my eyes and listened for the beep and thought to myself that this is the second-to-last week, this will soon be over, the therapist came out and told me for the second half of treatment, the doctor would come out and draw on me for "the boost."*

I did not know what the boost was. I did not know the boost was coming. There was no warning about said boost.

I did not know they were going to fucking boost my radiation. With a large attachment that looked like the machine Dr. Evil uses. This is the best pic I could find that looks like the normal radiation machine. Now picture a huge scope that stops about an inch from the lumpectomy scar. That's the booster ray, or whatever it is technically called.

I'm lying there, and one of the therapists whips out a Sharpie and starts drawing on me, making some notes that she keeps on a piece of paper she rests on my stomach, like a desk. They chitted and chatted and breathed and sang to Phil Collins, and the longer it took, the more I started to get ANGRY. I was angry to be the one on the table. I was angry about the new bill that shows up every damn week saying I owe hundreds of dollars after insurance. I was angry this was taking so long. I was angry I was half-naked for the fifty-first time in front of virtual strangers.

At one point the therapist apologized for the awkward positioning, and I replied that everything about this entire experience is awkward, and she took it wrong. She said, "I suppose at some point, you're like, whatever," she says good-naturedly. "I don't even see nudity anymore. I just see tattoos."

I know she meant well, but I do not feel whatever about my health or my body. I still think of myself as having to lie there half-naked. I would still like my dignity back. I would still prefer not to have people draw on my secondary sex characteristics with permanent art supplies. I would still prefer to be a person and not a pound of flesh.

I would still prefer for this shit to be over and to have my chest back to myself, beat up, scarred, smaller and burned though it may be.

I refrained from punching her, because at no time has this experience become "whatever." At every time I have wished for my dignity back, and to not to have to bare my breasts to half of Jackson county, and to not have to have Sharpie marks and tattoos that mess up my expensive bras and to not have nurses tell me to just slather on creams to stop the itching that leach through said bras to my professional clothing, and oh, by the way, I haven't been able to stop working in that professional clothing during this experience, so if my left breast goes up in flames during a meeting about open enrollment, I can neither itch it or go slather on cream. I just have to white-knuckle my way through.

Life does not stop for cancer.

After all that is done, the radiation oncologist and I chit-chat about the typhoon we had in KC last night, and then he gives me some suggestions for other creams. The nurse explains to me what radiation feels like, even though she's never had it. Anger wells up in my chest again at this woman who thinks she knows what radiation feels like well enough to explain it to me.

I cry in the parking lot. I text Doug to tell him I can't do it. I just can't stop crying to make it to a baseball game in less than an hour. My mascara is around my knees and I'm still wearing my work clothes and I have to find itch cream.

I apologize. He's like, "For enduring radiation? Please." And that's how I know our eleven years of friendship is so worthwhile - those friendships I made while blogging are so worthwhile. I know I'm not around as much, but you are my people in a way the 90 percent of my people in my new day-to-day probably will never be, because I'll probably never show them as much of me as I have shown you.

I stopped crying finally. I drove to CVS. I looked on the shelf for the anti-itch new cream. I couldn't find it. I went to the pharmacy counter and got a guy to come look for me. Finally, he says, "What is this for?" And I say, "Radiation burns."

AND HE STARTED MANSPLAINING HOW RADIATION BURNS ARE JUST FOR MOISTURE BECAUSE THEY DON'T HURT.

Friends, that young man is really a lucky young man, because I am able to control myself.

I muttered I'd probably go with my radiation oncologist's recommendation and went home and cried some more. I told Doug I'd make this funny when I blogged it, but it's still not funny. It just sucks.

However, there are only eight more treatments left. Eight treatments until I get to stop thinking about cancer for the first time since April. Maybe there will be some smooth water.

This week is the one-year anniversary week of my lay-off from SheKnows Media.

It's been a year. I got laid off. I got a new job. Two months in, I got cancer. I'm almost done with cancer treatment. It's almost G's birthday. He'll be forty-four.

ONWARD.

*According to science, the boost does work for DCIS patients, of which I am one. SCIENCE.

8/22

Two weeks down, three to go of radiation. My skin is starting to stay red all the time, like a sunburn, and I'm getting the zaps. It feels occasionally like when my inner stitches popped after my lumpectomy: minor pain like sparks just randomly in the core of my breast.

Mostly, though, I've found my lifestyle isn't conducive to fatigue.

Last week we had two riding lessons, a birthday dinner and the blonde fairy. Friday night I tried to use a massage gift card only to be told not until I'm done with radiation. I was tired by then, so in a weird way I was relieved to be excused from relaxation so I could go home to collapse on the couch.

Today I forgot the keys to the tack box (40 minute round trip) and the swim bag (10 minute round trip). It's like when the little angel didn't sleep and I'd find my keys in the fridge. I really can't be trusted to remember things right now. Please send a butler and a driver.

I decided to take a radiation vacation on my last three days of treatment just to know if the fatigue continues to build, I at least won't have to perform at work for a few days. I'm looking forward to the opportunity to collapse into the couch cushions for a few days and focus on putting this latest health bullshit behind me.

That is three weeks away. Three weeks hasn't seemed this long since high school.

ONWARD.

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