A Brain Tumor?

I’m not normal.

You knew that.

This is different.

I’m not like you anymore. My “normal” isn’t yours.

And that’s a problem.

- - -

When the headache hit me, my brain exploded, starlight fireworks behind closed eyes. Paralytic pain.

I'd felt it before, but that was a long time ago...

- - -

The former BCB and I bought house. It was a small rancher on a little land. Modest, for our just-beginning family.

It had trees. Soaring trees with leafy canopies that cast verdant shadows, cooling, soothing. Lovely.

We were living out of boxes when the microburst stormed through our new neighborhood. Trees shuddered and burst. Limbs and leafy stuff shattered and crashed.

And then it was over. And what remained…

A 70-footer lay athwart the power lines. The root ball emerged from the ground six feet from our daughter’s bedroom window. It fell in the right direction. If the storm had come from the other direction...

We were grateful in a way we couldn't express. Despite the violence, the house was intact. The runaway train passed, and we were safe.

We needed to clean up. I was young, male, immortal. Chainsaw in hand, I approached the fallen tree...

My neighbor saw the whole thing. I didn’t.

It must have been spectacular...

On my back, spread-eagle, limbs akimbo. Nerveshock, electric, screaming, vibrating, shattering. Brain explosion beyond pain.

The bough had shattered; the chainsaw vibration set something off. The twenty foot long, ten-inch diameter wood burst into six parts. My head took a direct shot.

I never admitted how close I’d come to dying.

- - -

The tree-branch explosion headaches weren't what kept me in bed. The vertigo did that.

Shattered, devastated. I held my head. I wanted to die.

I. Wanted. To. Die.

It felt like chemo, all over again.

- - -

Since chemo, I live in a constant state of...odd.

Dizziness, nausea, and vertigo come and go. My hands and feet go numb, or freeze, or sparkle with pins and needles. I hear things...tinnitus is real and present every minute of every day, and sometimes my hearing goes wonky. It is what it is.

But this was different. The intensity made me cry the cry where your tears flow, but you don't sob.

And that's when I started having trouble seeing. My left eye was in a constant state of unfocus. It would dial in and out, like it was sighting a microscope. But it never found its focus. Even after the tears stopped, even after I'd slept, when I awoke I couldn't focus my left eye.

I was terrified.

- - -

Paging Dr. Google! Paging Dr. Google!

During a lull I paged Dr. Google. I read. I learned.

It might be a tumor. I have family history. Mom had one decades ago.

It might be an inner ear infection. I have outlaw family history. My outlaw mother had an inner ear issue and she's functionally deaf in that ear.

Shit.

- - -

My Jedi oncologist sat down. "Beth tells me you think you have a brain tumor." Beth is her nurse.

"I never said that."

"I know. She said you didn't say that."

"???"

"So, here's the deal. You might have a brain tumor. But that's unlikely. All the imaging we've done on you...no signs. But you might. We'll test. It's probably an inner ear infection. But you never know. Get the CT, and we'll go from there."

I guess I'm good at the Dr. Google thing.

- - -

It says something when the CT nurse knows your face and is surprised by the orders.

"Head?"

"Head."

He raised an eyebrow.

"I know," I shrugged.

"You know the drill..."

- - -

That was a Friday. The LAs were with me that weekend. It was a long weekend.

How do you hide that anxiety?

Saucer-eyed staring at the ceiling, tinnitus hum in your ears, how do you get through the night?

You do what you need to do....

I'm getting practice. I'm adjusting to my life's new cycle. Every six months I will be weighed and measured.

Every six months. Forever.

That's a short clock.

This, though...

This...I wasn't ready for this.

- - -

She emailed me. No signs of tumor. See an ENT ASAP.

And I felt...

Free fall.

Not Relief.

Not joy.

Emptiness.

And guilt.

 ???

Yep. Guilt.

The boy who cried wolf. I made a big deal. It was nothing.

Raymond, Raymond it was really nothing

Except...I hadn't. Made a big deal.

I just want to live.

And everybody's got to live their life
and God knows I've got to live mine
God knows I've got to live mine

- - -

That free fall, that emotional abyss, that void...

That's a scary place.

My gods.

The opposite of fear isn't courage. It's void.

Have you ever felt dead inside?

- - -

This is what it's like, living in the shadow of cancer.

I'm my own, only advocate. I fight for me.

And it overwhelms.

And it makes me feel guilty.

Yet, it is what it is. I deal. Because I have to.

- - -

There's much more to the story.

But in answer to your question... I'm not dead yet.

And I have much to do.

And I have little time.

Unless I don't.

Which would be great.

But I don't believe it. Even as I hope for it.

Big things are afoot.

I see things clearly now.

Stay tuned...

- - -

What will be will be what will be.
I've got this.

Am I doing the right thing?

I made a decision. I am living it.

Did I choose the right thing?

I just got home, having spent the morning in a place I prefer to not remember. Today was scan-day up in New York, meaning that I had an 0300 wake-up for an 0800 call-up for an 0900 irradiated trip through the tube.

Smelled the same. Sounded the same. The same waiting room as my first scan in 2006.

The same fears—magnified and managed. I know too much, now. And I know me better.

But the travel trudgery weighs heavy.

- - -

I wasn’t going to sit with the littlest LA and watch Shaun the Sheep. I had other things I could do. But, she was having none of it.

“Daddy, I like watching with you.”

I paused, turned, “That’s sweet, honey. What makes you say that?”

“I like it when you laugh. It means you’re happy. And last year you couldn’t be happy. You were too sick. I like you this way.”

I smiled, deeply. I crawled on the couch. We snuggled.

We watched Shaun the Sheep.

- - -

I rounded the corner, passing the threshold from sterile hospitalness to faux-wood warm waiting-roomness. Despite my fast, my stomach fell. My throat closed. Cottonmouth swallow.

They’re nice here. Really nice. They get it.

Drink your drink, stay within. Conversations surround. Fear, mostly. Some anger, tinged with sadness. Mostly fear.

A woman howls, somewhere around a corner, down a hall. Plaintive whimpers, animal sounds.

A family next to me. One child to her mother, fear in her eyes: “what’s that, mommy?”

A pause.

Howls become…song. Moans become…gospel. No words, but melody. Meandering line, raw, worshipful blues, a song more ancient than history, more deeply-rooted than time.

“It’s a song,” answers the mother.

The child nods.

- - -

“I really hope your cancer stays away,” she says. Out of nowhere.

I blink.

“I don’t want you to get sick again.”

- - -

Winter-jacket stuffed locker key in hand, I turned another corner. She was there. The singer.

Emaciated, pregnant, writhing slowly on the gurney, robes and sheets askew, her voice tremulous, she stared unblinking at…nothing. Or, nothing I could see. Gods know what she saw; her pain-glazed pharmacological stupor.

I walked past.

My heart broke.

My stomach dropped lower, bowels liquefied.

I know that pain. I know that stupor.

But, with a baby?

My gods. With a baby…

- - -

The eldest LA and I are journaling. Together. She writes me a note. I write her back. It’s easier that way, for her. We share a book. It’s ours.

She’s thirteen, that horrible, wonderful, awkwardly-graceful age between childhood and womanhood. So many questions. So much to experience, to learn. So many ideas sparking, sparkling in her awareness. Such an exciting and terrifying time—for her. And for me.

She discovered this blog. She’s read some of it. I don’t know what parts.

She will likely read these words—some day. Sooner or later.

That’s good.

She’ll learn that I don’t have all the answers…but that I ask the questions.

She’ll find out the back story of some big chapters in her life.

She’ll be challenged.

That’s good.

- - -

I slide through the tube, distracting myself. I think of the singer. I think of my girls. I think of the things I wish I was doing. I think of the things I have been doing. I think of what is undone and unfinished.

Eyes closed, I slide.

The voice tells me to hold my breath.

I do.

The voice tells me to breathe again.

I do.

And I’m surrounded by noise. And I’m perfectly centered.

- - -

I don’t know if I made the right decision.

What will be will be what will be.

I’ve got this.

(pause)

Something extraordinary happened today.

No. That's not true.

Something ordinary happened today; and in the moment, the extraordinary flashed. And I saw it. And it was good.

- - -

Strewn about the table before me were the bits and bobs from our Christmas tree Naked, in the background, our tree stood quiet sentinel, patiently awaiting its retirement.

The LAs and I were taking a break, planning the weekend before us. Up for discussion: what movies did they want to see.

Eldest LA was having an overnight guest. I suggested that we go to the library to find some awesome older movies that they could enjoy. I threw out ideas: Raiders of the Lost Ark, Goonies, Star Wars...

"Star Wars is wrong about The Force," opines Youngest LA.

"Huh?" grunt Eldest and me.

"They're wrong about The Force."

"What do you mean, sweetie?"

"Force is something that changes the way something else moves. It influences it."

I paused.

And I started to cry.

- - -

Eldest LA had a hard week at school. She was reviewing her grades, and was crushed to learn that she did not have an "A".

When she looked into it, she found that she had not turned in a lab write-up. It was done, and sitting in her notebook, but a series of illnesses, multiple substitute teachers, and confusing communication meant...that she did not submit it.

She is in seventh grade.

She lost sleep. A lot of sleep. She was moody and distraught. In short, she was she.

Eldest is the rule-follower's rule follower. She is the hard-working, focused, student who dots "i's", crosses "t's" and is the go-to girl for any questions about what's what from her peers. She's THAT girl. She cares more about school and learning and giving and receiving credit where it is due than I ever did.

And she was crushed.

Her mom talked with the teacher, outlining the confusion. Lab was (already) submitted and was graded, recorded, and her average was restored to its "proper" place.

And she was happy.

But that's not where it ended.

We talked about what happened, and she told me what she learned from the situation. She pointed out where it went wrong, and she promised me (but I was only a sounding board...she really was promising herself) that she would not ever let that happen again. Ever.

I had nothing to do with that. It was all her.

- - -

"Force is something that changes the way something else moves. It influences it."

I paused.

And in that pause a thought flashed: I have a physicist.

Youngest is intelligent. She tests off-the-charts. She's THAT kid.

And when she says "They're wrong about The Force," she does so with indignation. It isn't right—it's not correct, and how dare they tell us otherwise!

And that's when I cried.

- - -

The LAs have seen this from time to time, but it’s been a while.

I started to speak, but couldn't. They both stared, then relaxed, and waited.

"I'm sorry," I started, not sorry at all, "but..."

"You need a hug," said Eldest and she came over to the couch and hugged me. Youngest piled on...family hug.

"I. Can't. Breathe!" grunted Eldest. We all laughed, and separated.

Youngest stayed in my arms. Eldest returned to her space. Eldest is thirteen.

"I love you...so much," I started. And then it came out...

"I didn't have this last year," I went on, gesturing to the Christmas ornaments. "I thought I would never have it again."

I paused. They nodded.

"I love you both so very much, and sometimes it..." I was fighting for the words, but maintaining composure. "It overwhelms me."

"Some day you will be parents, and you'll know how it feels to be so proud of your children that you can't breathe. There's no way you can understand it now. I hope one day you experience it. “

I paused

"[Youngest], I'm going to talk to your sister now. Please let me. I will talk to you in a minute..."

"[Eldest], I cannot tell you how proud I am of you. What happened this week says so much about you—your focus, your dedication, your...well, your 'you'. I don't care a whit about the grade—that's merely an outcome. I care about what lead up to it. The process. The care. The way you do things. You are so strong in your belief and the way you value learning. Despite all the distractions and all the annoyances, you really care about getting it right. It's amazing. And it's inspiring."

"It's like when you decide to cook. I'm more proud of the attempt and the doing of it than the outcome. The grade is the outcome. The meal is the outcome. Sure, you may overcook a part, or use the sugar instead of the salt or the salt instead of the sugar...so what! It's the way you stay true to your vision. The meal may be great, or it may be icky, but the doing of it--trying...learning...and trying again...it's amazing. And I love you so much for it."

Her eyes never blinked, but her face was relaxed. She heard every word.

"I'm going to talk to your sister now." She nodded.

"[Youngest], you're amazing." I looked at her sister. "I'm not comparing the two of you, and this is not a competition. You are different people. You do things differently, and I love you both so much it makes me cry." Another tear welled. Eldest nodded.

To Youngest I continued, "I don't understand you, and that's such a gift. One of the things I do is study people. I love watching people—the way they do things, the way they think—it's what i do. It's what I write about."

"And I don't understand the way you think at all. Yours is an amazing mind. And I so much love to listen to you and watch you make connections that no one else is making. You have a gift. And watching you grow is a delight I can't express. I love you so much for you being you...even when you drive me crazy!" I paused to a giggle.

Then, to both of them, I added, "You have been through a helluva three years. It's been brutal at times, and you both are here, now, wonderfully yourselves. And I'm crying because you're you.

"Your mother and I had little to do with it. We tried and try to keep a good environment >for you—and we screw it up all the time. I know I can be hard on you at times, and I have expectations that you don't understand. And that's part of it. But you're you, and you make me so proud."

I said a few other things. Nothing shocking. Nothing out of place.

And the conversation ended.

And we went on with our day.

- - -

Divorce gave me the gift of loving myself and accepting myself for me. One result is I am better able to see people for who they are.

In a flash I saw the LAs for who they are...and I was overwhelmed.

Cancer gave me the gift of living in the moment and appreciating each moment. One result is that it took an introspective man and gave him the gift of clarity.

In a flash I appreciated the sheer, overwhelming awesomeness of those two souls. In a moment, I recognized the gift of that moment, and the precious delicacy of the time we share.

It's easy to miss. It's easy to forget.

- - -

Something extraordinary happened today.

No. That's not true.

Something ordinary happened today; and in the moment, the extraordinary flashed. And I saw it.

And it was good.

What will be will be what will be.

I’ve got this.

Bucket List #1: Cyclocross Nationals

I have a bucket list.

Aren’t you special? Don't we all?

I dunno. Maybe. It's a new thing to me. I started writing mine a year ago.

You keep writing that: "A year ago..." Get over it already!

It’s yesterday, to me.

It’s 360-something days…

To you. Not to me.

Sigh.

I know. I get it.

But it’s still with me—in what I remember and in what I don’t.

I remember little about Christmas 2013. I do remember the overwhelming kindness of friends; I don’t remember my children.

I don’t remember the start of 2014. New Year’s must have happened. I was…somewhere. But, I have no memories. None. None at all.

I don’t remember going into the hospital for my fourth cycle. But, I do remember overwhelming sickness. I remember groking what it meant to be “debased”. And, I remember not caring.

I remember the battle. I remember fighting. And, I remember feeling that I was losing.

And, I remember hope.

- - -

I first heard "bucket list" a few years ago. Maybe it’s a thing for people of a certain age. You cross 40, and suddenly you consider your bucket. Or, the kicking of it. I've never heard anyone talk about the bucket itself. Is it half-empty or half-full? Why does no one care? Shouldn’t we care more for our bucket?

(I prefer a towel to a bucket any day. Always know where your towel is. But I digress from my digression…)

I don't think of my bucket list as a collection of things I need to do before I die. To me it's more of an ambition list.

It’s not filled with audacious unattainables, like "I will climb the Seven Summits wearing only a loincloth, descending each on my arse whilst playing the viola."

Though that sounds like fun.

(In fairness, it does have "I will dive under the ice in Antarctica." But as a former SCUBA instructor, that feels less audacious than it seems at first read.)

No, it’s more of a list of things that make me happy.

That give me hope.

Some are all about the journey, like my list of athletically-focused things I WILL do. The struggle without and within—that’s what matters. They make me happy, even as they shatter me.

Other things give me joy.

- - -

I’m joyful when I see good people living their dreams.

Jeremy Powers is one of those people.

When I shared time with him last fall, J-Pow said something to me that stuck. It stuck hard, and it stuck fast, and it’s with me every day.

I was in the middle of my decision process. I was between hospital travels, and I was struggling. I briefed him on my situation, and when I finished outlining my process he nodded and said. “Exactly. You make your decision, and you live it.”

He said it with emphasis and enthusiasm, with an engaging smile. He radiated optimism.

“…and you live it.”

He was talking about committing to a path. About not looking back. About Living.

Not living. ..Living.

He was the right person at the right time to deliver a message I needed to hear.

- - -

I'm posting this from Austin, TX; I'm here to see the U.S. Cyclocross National Championships.

It was a hospital promise to me.

I made that promise. To me. A pinky promise.

And that promise was a touchstone through this long recovery year.

It got me out of some deep, deep holes.

And here I am.

Goddamn it. HERE I AM!

I still have nightmares.

But I'm not dead yet.

I’ve made my decision; I plan on living.

So should you.

What will be will be what will be.

I’ve got this.

Starting Over (...Again)

Quickened breath. Butterfly heart. I walk in DC streets.

The light won't change. Come on. Change!

Cross. Hop curb. Grasp handle. Open door. Breathe.

Oh, that stench. It hits me. They gym's earthy-chemical melange. It smells good.

Some things never change.

- - -

People tell me I look great! They like my hair...my emerging beard...they see life in my eyes.

But they don't see what's within. That's mine.

I plunge. The water shocks me. Cold. Core-cold.

Shivering, I stretch out, reaching. Fluid floating—I'm buoyant! I smile. For a second. Then I bite down, grimacing. Float = fat. I'm fat. It's not aesthetics; it's practical. My legs used to be muscle; they sank like stones. Now they float. I have much work to do.

Underwater creaking. Popping. Sharp edges in my joints.

Sinews protest. Long-forgotten movements...motions...odd, yet, familiar. Muscle memory. I start to flow.

But, it hurts.

- - -

This can end at any time.

I know.

No. Not that. You can *stop* at any time."

Yes. THAT. And I KNOW I can stop.

So...stop. No one's watching. No one will know. No one cares.

Fuck you.

- - -

I sputter. Chlorine burns my nose, my throat, my eyes. My shoulder screams. My knee stabs. I'm struggling.

And so it goes...

You beat cancer by how you live, why you live, and in the manner in which you live.
—Stuart Scott

If you've been reading this blog for any amount of time, you know I've been searching and struggling and surviving and finding my place. I'm becoming. I'm finding balance.

There are things I want to do and places I want to go and people I want to meet. Yes, I have a bucket list.

It's very long.

When my body hurts, these things keep me going. Some may not seem bucket-list worthy. But, it's my list, not yours.

• I will ride my fatty in the 2015 Patapsco 100. I will do better than in 2014.
  
• I will ride both days of Pelotonia 2015.
• I will race cyclocross in 2015. See you at DCCX, Schooley Mill, and Rockburn!
• I will ride from DC to Columbus, and then ride all of Pelotonia 2016. Because. Dammit.
• I will cross the bay by water. In 2016.
• I will earn my ink. By 2018...before I am 50.
• I will earn my brick.
• I will race across the sky.
• I will see America...by bike.

There will be hard days.

Some things never change.

The long journey has begun.

I have a long way to go. I cannot do it alone. I will lean on you for support. For guidance. To learn. To recover.

What will be will be what will be.
I've got this.