The Space I'm In

Do you ever really know what someone is going through?

Seven weeks ago it started.

It was a two-mile drive between the store and the former BCB’s. Something tweaked, my back seized, and I couldn’t straighten my leg or stand straight. I had done…nothing…nothing to trigger it.

I set my jaw, clenched my teeth, and got on with it.

- - -

Cyclocross season was coming! I had dedicated myself to training. I had attended a weekend camp to work on the vast known unknown of my skills (I know I have no skills, I simply do not know the extent to which I have no skill). I was preparing to do something I had lost three years ago—race ‘cross. Pin on a number, get dirty, give it a go, have fun—those were my goals. Could I get to eight races? I hoped so. Again, that was my goal.

Seven weeks ago it started.

I haven’t been on a bike since.

- - -

My pain got bad. Nerve pain is different from a strained muscle. Nerve pain is a different cause. It triggers the muscles. They seize. They hurt. But, they’re not the cause—they are the symptom.

It was the nausea that did it. When the pain spiked to the point that I couldn’t eat, I knew things were bad. By that point everything had shifted. It wasn’t back pain anymore.

- - -

Chronic pain changes you. 

Whatever your goals, whatever your aspirations, whomever it is you wish to be, you can throw it all away when the pain becomes the filter through which you experience your day. When your clenched jaw and the taste of blood become normal, you are changed.

You snap. You bark. You flinch. 

You avoid people, interactions, experiences. 

You retreat. 

- - -

The back got better, the situation changed, but the situation was not better. I wasn’t improved.

The nausea was nothing like seasickness. It was nothing like a stomach flu. It was a dull, insistent, low-frequency wave. Ever-present, debilitating, it slowed me further.

My hip felt bruised—on the inside. My bowels flared as though something was trying to punch its way out of me. Stomach spasms spiked randomly.

It wasn’t my back.

It wasn’t a nerve.

Was it my psoas?

- - -

Fear changes you. 

Whatever your goals, whatever your aspirations, whomever it is you wish to be, you can throw it all away when fear becomes the filter through which you experience your day. When your clenched jaw and the taste of blood become normal, you are changed.

You flinch. 

You avoid people, interactions, experiences. 

You retreat. 

- - -

I’ve never been “given” a prognosis. The tumor sitting inside me sits there—inaccessible.

My doctors quote statistics—if you have no cancer activity two years from the end of chemotherapy, you have a 96%, 97%, 98%, 99% likelihood of living cancer-free.

You’re in relapse! Isn’t it wonderful?

To my oncologists, I am a success story.

But I’ve been here before—I was seven years out when it relapsed. I was a one-percenter. No one saw it coming.

This time things are different. I have dead cancer sitting inside me. “It’s inactive”, I’m told.

“Yup”, I reply.

And I wait.

- - - 

I have zero confidence that my cancer is clear. 

Stated differently, I am absolutely certain that it is coming back.

That’s learned experience, its not defeatist attitude.

I live in the shadow of “when”.

Rightly or wrongly, that is my every day.

- - - 

My alarm rang this morning at 0230. I was on the train at 0330. They drew blood at 0730. I was scanned at 0930. I got results at 3:30.

It’s not cancer.

Oh, there’s something wrong. I’m scheduled for follow-up tests.

We believe it is likely scar tissue and adhesions irritating major nerves. It may be an issue with the psoas itself. It’s also likely that I have chemo-induced necrosis in my hip joint. Either. Both. All. Real problems. 

“You’re entitled to have issues,” I’m told by my oncologist, “you’ve been through a lot.”

- - - 

I live in a very strange space.

Chronic pain triggered me. At its worst, I had dry heaves from the spasms. It still gets bad, but I managed it with a three-day fast and a radical change of diet.

Fear dominated me. At its worst I browned-out from the anxiety-attack hyperventilation. Last night it started again. I managed it by audio-mixing two podcast episodes. Six hours straight, immersive work. 

Whatever my goals, whatever my aspirations, I threw them all away. Survival was the goal. Survival remains the goal.

When pain and fear becomes the filter through which you experience your day, you are no longer you. You may aspire to be the person your dog thinks you are, but that’s not an option. So, you clench your teeth until you taste the blood and your face cramps with the strain. And you get on with it.

You flinch. You avoid people, interactions, experiences. You retreat. 

- - - 

Seven weeks ago it started.

I battled it each and every minute. And most of the time it won.

If you’ve seen me over the past seven weeks, you’ve seen the mask and the shell. Most of my time has been spent bunkering, hunkering, preparing for the worst. 

Because the worst is part of me, and it will be—forever…

…however long that shall be.

- - - 

I’m still in pain. I’m still afraid. 

And while I’m entitled to have issues…

And while my fears are valid…

And while the pain is real…

I wonder what that gets me.

I understand the past seven weeks. But I hate it. 

I hate the person I become, even as I empathize with him. 

I abhor things done and undone and said and unsaid, even as I forgive myself.

And tomorrow the sun will rise again. And soon I will have more tests, and soon I will have more answers and decisions and things I need to do and have done.

So, I set my jaw, clench my teeth, and get on with it….until I taste the blood and my face cramps with the strain.

And I’ll continue on, trying to be the man I aspire to be.

I say it all the time, because to fake it is to make it:

I’ve got this.

Wheelsucker Presents: CancerBroadcast.com (Soft Launch)

Loyal readers:
It’s all your fault. Just so you know…

Cancer is extraordinary. It changes lives in a moment. It’s voracious. It consumes.

Yet, cancer gives gifts. It inspires. It can bring out the best in us. It offers us opportunities for insight, growth, change.

I’m not Pollyanna—cancer kills. It destroys.

But, between here and there is an infinite space. How we fill that space is up to us—it’s the challenge cancer presents us.

In truth, the challenge was always there. Cancer made me see it.

Searching

This blog has been my therapy. It has enabled me to free myself from myself, while going deep within me. It enabled me to share my stories with you, and in the sharing, it saved me. Where I once was isolated, I connected. When I most needed support, I received it. I gave the only thing I had—me. And what I received in return…has changed my life.

All from the power of stories.

Stories are webs, interconnected strand to strand, and you follow each story to the center, because the center is the end. Each person is a strand of the story.
—Neil Gaiman

Even within the fever dreams of chemotherapy, I wanted to do something more. I wanted to expand the blog experience into something…greater. I didn’t know what that meant, but I knew that I would know it when I found it.

Months passed. I recovered. Mindfully, I made myself open, receptive.

One of the things I am good at is connections. A thought here, something from there, a sliver of that from yesterplace, and a scosche from neverwhere become...something whole and meaningful. I read and watched and listened and thought and saw and heard and an idea formed. Then it grew.

I bounced it off him and her and listened to their feedback. I reflected, and the many voices within me argued. Powerful parts cajoled others into action. Doubtful parts were dragged along, despite their sea-anchor affect.

In my last blog post I wrote about how:

I took strides forward, only to be knocked back. Sometimes I got knocked back and sideways. Other times I was spun around; dizzy and confused I fell on my arse. Usually spectacularly.

There was a lot of arse on the ground. (Yes, I have a large arse!)

But, I got up.

I was inspired by others—people who built things. I’ve always let my fear and doubt rule. They didn’t. They Got Shit Done. They Made Things Happen. And I deeply admire them for it!

So, why not me?

Nerd

One of the things I listened to was the Nerdist podcast. Across the episodes an ongoing theme is “just build your thing”. It’s post-Nike. Instead of just doing it, it’s about building it. Make something real. Make something that reflects you and your ideas.

And I have an idea.

And through all the self-doubt and self-stop, the obstacle-creation and the bury-yourself-under-the-pillow paralytic fear, my idea shone through.

I’m quoting him again (slightly out of context), but Gaiman is irrepressibly quotable:

Ideas will, eventually, win. Because the ideas are invisible, and they linger, and, sometimes, they are even true.

And my idea is this…

Here We Go!

It’s all your fault because you encouraged me.

As I shared more, you responded. And one of the humbling things I kept hearing was that you enjoy my writing—my way of expressing things. I don’t take compliments well, so it took me some time to acknowledge and grow comfortable with it.

But that was nothing compared to private comments from those who shared that I helped them, or their friend, or their sister/brother/son/daughter. Quietly, one of my goals was being achieved—someone out there got something meaningful from my blog.

Wow.

Like Michelangelo’s block of marble (I am, on occasion, dumb as a rock.), there was something within me that always existed and needed to emerge. I’ve never been able to tell a joke. I’m useless at it. But stories?

I’m a storyteller. It’s that simple.

I love storytelling. If you strip all the bits away, what you'll find at the center is a storyteller. As I warm to my career and love it more, I have a sense that storytelling is healing, in many ways. You can reach an audience and heal, and by heal, I mean entertain and provoke. It's a wonderful life.
—Sir Ben Kingsley

I have an idea. I have an identity. Let’s build my thing...

The Cancer Broadcast

CancerBroadcast.com is a platform for the cancer community—patients, survivors, caregivers, supporters—to tell their stories.

Stories have the power to change lives, and The Cancer Broadcast is focused on the stories that move others who are touched by cancer. It will be positive—focusing on inspiration and growth...on coping, healing, and thriving. We’ll laugh, even as we cry. And as a community we’ll nuture the strength we need to grow through the cancer experience.

The Cancer Broadcast will be built around a podcast, hosted my me. Blogging will be a part of it as it grows. As it finds its audience, it will become what it needs to become—it will grow organically.

It’s just getting started. The first podcast episodes are being refined, awaiting release.

For now, I’m reaching out to the cancer community. I'll be riding in Pelotonia again this year with renewed purpose. I have nothing to prove on a bicycle. I have a thing to build. I'm going to use my 14 hours of saddle time to meet and talk and listen and receive.

Most importantly, I'm going to connect with my cancer community. I'm going to gather information that will help me refine and build.

Together, we'll build something wonderful.

It's going to be awesome!

What will be will be what will be.

I’ve got this.

It's Alright, It's OK

I haven’t seen you in a while. How are you?

It’s a question I’ve heard a lot over the past year or so. Returning to normal life, and work, and play—simply living—people have been variously kind and thoughtful and clueless when first talking with me.

My stock answer had always been: “l’m not dead, yet!”

But recently, it’s changed.

I’d wanted it to change for a while. I’d been ready, but I held back. I needed to pass a milestone first, before I could free myself.

And now I’ve crossed that milestone.

My Unremarkable Pelvis

Never have I been so happy to be described as “unchanged” and “unremarkable”. “Change” to me is an aspiration. “Remarkable” is a quality I admire.

But, this is different.

I recently had my now-permanant, semi-annual scan and evaluation at Memorial Sloan-Kettering Cancer Center. It’s a penitent pilgrimage I undertake. It’s a fundamental and necessary part of my living with cancer. It’s a journey that taxes me physically, psychically, and spiritually.

And it is a milestone. Every six months...time to make the donuts.

And the short version is that my results were…perfect. My blood is healthy. My scans are as clear as they can be (I have that residual mass…).

I have another six months…

Getting There

For the longest time I took strides forward, only to be knocked back. Sometimes I got knocked back and sideways. Other times I was spun around; dizzy and confused I fell on my arse. Usually spectacularly. Few people can fall on their arse with more style and less grace than can I.

I have a talent that way.

But recently, things have…shifted.

Living nightmares have become fugue dreams. Mistakes have become lessons. Challenges…opportunities. Fears have become hopes.

It’s not always that way. I have my bad days. But so do you.

What’s different is that every day is no longer a labor. I don’t go to bed wondering what will befall me tomorrow. I feel like I can handle things. Like I might actually got this.

I could dive inside and tell you how it feels to feel my body awaken. I could describe muscle warmth and sinew suppleness, cardiac confidence and respiratory renewal. I'm getting stronger. I'm finding me again.

I could wax rhapsodic about riding my bike (I've been known to go on about that...). I could share the of joy cycling with a goldfinch past bursting, cornflower-blue-brilliant wildflowers. I could romanticize the apparition of the golden bird that disappeared and reappeared, oddly rhythmically, among intermittent sunburst-yellow blooms.

I could do those things.

Isn't it glorious?

About Time

I’ve been thinking about time. It’s passage. It’s healing powers. It’s anxiety-inducing approach!

I’ve been thinking about people, and the lessons they often unintentionally teach. And about my willingness and ability to learn. And about how some lessons explode immediately, with insights strobe-flashing into awareness. And how others aggregate, accumulating over years before reaching their tipping point...and how I'm felled by revelations I should have known all along.

I’ve been thinking about how the former BCB has changed. And the LAs. And my parents. And my friends. And I see flashes of how temporal everything is, even as it seems permanent.

And how permanent some things are, even those that seemed temporary.

And I know that life can change in a second.

And I’ve learned that life is changing every moment. The river is never the same, no matter how many times you step into it. The stepping is the thing. It's what matters.

And I find comfort in that.

And it is good.

Redux

I haven’t seen you in a while. How are you?

"I feel...good!"

It feels good to say so.

It feels good to write it.

What will be will be what will be.

I’ve got this.

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.

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.

Nightmare

Today I awoke mid-nightmare.

Fourteen hours later, it is still with me. Crystal. Tangible.

The rough hospital sheets chafed my shoulder and I bent-double in bed. 

I was burying myself, pressing against coarse muslin pushing into plastic mattress. Tangled IV hoses wrapped around my arms, sheets entwined my legs, and chest catheter tubes pressed against my ribs, bruising me.

Urine. Vomit. Blood aroma. 

Door opened, screaming bright light. Starched bowling-ball nurse waddled in, torture-tray in hand. Nurse’s cap perched askew—like her eyes.

I hate those eyes. Toothy smile; dead eyes.

I stare into and beyond her eyes, into the light behind her. Shooting pain. I throw my tangled hands into my face, heels pressing my eyes. Pushing the pain.

No!

I open my eyes to scream…

And he’s standing there.

Quiet smile. Calm, bespectacled eyes. Hands casually thrust into white coat pockets. My oncologist from New York. 

“Why?” I howl. “What is happening to me?”

He tuts.

“You know,” he says, knowingly.

“What!” I demand. It’s not a question.

“I told you this might happen, and if it did, I warned you…”

He glanced at the nurse, calmly. Almost with grace. He nodded.

She turned to her tray. She turned to me, greenish-blue fluid in her syringe. An enormous syringe.

BWAP-BWAP-BWAP-BWAP

The alarm shattered my dream.

Thank gods.

- - -

Yesterday I awoke and the world was…weird.

I could smell everything. Strongly.

I was so sensitive; I could smell the fan on my laptop. My wool socks. Otherpeoplesmells assaulted me. Olfactory tinnitus. Someone had cranked the volume—for my nose.

And when you smell everything, you taste everything.

Incipient nausea. All day.

Someone said that it sounded like I was pregnant. Hormone changes. Something...

That would explain my pot belly...

And I couldn’t feel my feet.

Everything in front of the ankle was puffy, post-Novocain insensibility. So, when I walked, I fought nausea as I stumbled hither and thither.

Pregnant, bewildered, I stumbled through the day.

And then I got sick.

So, I went to bed.

(You already know how I woke up.)

- - -

A year ago I was so debased I couldn’t roll over in my hospital bed. I willed myself through it.

Today I was in a weight room. Building. Slowly.

So, I guess I’m living the dream, right?

Right?

- - -

What will be will be what will be.

I’ve got this.

The Passing of Daniel Vokhgelt

I didn't know him.

This isn't an obituary. I don't have any direct connection. Besides, this obituary is beautiful.

May we all leave such a loving legacy when we depart this world.

- - -

Singularly-focused, cancer is...elegant. Tragically so. It feeds. It grows. Abnormal cells divide without control, invading. Cancer corrupts. It thrives as it destroys. It's a suicidal assassin—dying with its host. The perfect end for a perfect killer.

Cancer knows no borders, no boundaries, it respects nothing. It's a ruthless, opportunistic predator—silent and cold.

As patients we "fight" it; we "battle". Supporters nobilify our struggle, honoring us for our suffering.

Should we win our battle, we are declared "survivors".

Should we lose, we're dead.

But, do we ever really win?

How do you fight a force of nature?

- - -

I'm a survivor. Twice-over.

But, I'm still fighting cancer.

You see, I haven't won anything.

Cancer is bigger than me. It's always there. It always will be.

The soul of cancer is in me. And that is a blessing.

- - -

How do you fight something bigger than you?

One battle at a time.

- - -

Daniel did not lose his fight. He didn't lose his will. Daniel died.

The disease was too much. It was elegant, ruthless...lethal.

It did what it does.

- - -

Cancer is bigger than me. It's always there. It always will be.

Cancer is bigger than you, too.

Right now, cancer is bigger than all of us.

That must change.

In the wake of Daniel's life, the question is not: "what have we lost?"

The question is: "how will we live?"

How will you live?

Cancer is bigger than you. It's always there. It always will be.

We can change that.

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

Decision

Constant Reader:

Sometimes Life gets in the way of intentions, and priorities must take...priority.

A brief kid's illness, a brief Daddy illness, work demands, volunteer duties, all the other duties of everyday, and my updates have slackened…

Another truth is that once I made my decision, I needed to tell certain people in person. There are times when a phone call is not enough: you know this. Proximity begets truth; poignancy needs closeness. So, this post had to wait.

And another truth is…that this will be a brief post…I’m saving my powder.

Many of you have suggested that I write a book about my experience. At first I approached the idea the same way teenage boys approach their ambition to be a rock star—with wistfulness, arrogance, passion, and abject fear.

That’s evolved.

It’s no longer an ambition. It’s a need.

On this blog I’ve shared much…far more than you may have expected when you started reading it.

I’ve left out more than I’ve shared.

But that is for another day.

Thank you for reading. More; thank you for caring.

And a very happy Thanksgiving to you and your perfect circles of acquaintances, families, and friends. Drink another; coin a phrase.

-Wheelsucker

Four states.

Four hospitals.

Five doctors—three oncologists and two surgeons.

Multiple needle-pricks.

Uncounted radiation.

Scores of coffees.

Hundreds of minutes on the phone.

Very few hours of sleep.

Deep thought.

Priceless conversations.

I’m not having surgery.

- - -

Every three months I will be scanned and poked and examined. The best doctors with the best equipment will focus their keen attention on me every quarter. I will live within a new lifecycle.

In 2006 I could not do it.

Now I can.

I am choosing quality. Here are my reasons:

• I do not believe that anything can be done to stop my cancer from re-emerging when it “wants to”.
• I do not believe that I am here in 15 years.
• I believe that my children have been through enough. "Cruelty" would be putting them through the agony of another six-month recovery—one with uncertain outcomes.

What? Isn’t it more cruel to risk it coming back? What if they lose their Daddy?

See the first two bullets.

• I believe that it is time.
• To live life without fear.
• To make my time with the LAs precious and present and pure.
• To be the man I can be—and nothing less.
• To make history—and stop letting it make me.

- - -

Since I made my decision, several things have happened.

• I let go.
• I sleep.
  I have slept better than at any time that I can remember—since I was a child.
• I see time differently.
  It is defined by an apex at the present and rays of infinite possibility flowing into the future. There is little periphery. There is less past.
• I care more—and less.
  Important is important. Anything else…not so much.
• I appreciate.

People keep asking me: “how are you doing?”

I respond: “I’m not dead yet.”

It’s true.

Most people can’t handle that response—at first. Then they come around (or they fake it well).

“Live like you’re dying.” It’s a cliché

Okay.

Let’s play.

What will be will be what will be.

I’ve got this.

- - -

Thanks to matt mathai for the wonderful photo, and apologies to his dear lady, who I cropped out of the picture!

Evolution of a Decision (Part 1)

You can have surgery, or you can be monitored.

Surgery means you likely will lose your leg.

Monitoring means you risk another relapse.

- - -

Before going forward, we need to go back…

In March I had a PET scan at Memorial Sloan-Kettering that showed that there was no active hypermetabolism. That can be translated to “no malignancy”. My doctors said “we consider you to be in remission.”

Good news.

They also said that they did not recommend surgery at that time. “There are serious risks involved. Let’s wait a few months and see how things look. We’ll re-evaluate it then. Right now, there is no urgency.”

My celebration meal was a beer and a panini
at the Rapha Club. I was delirious.

That was a polite way of saying: “heal.”

I was over the moon. I celebrated.

But I was hurting.

Each day was a challenge. It was two steps forward, one step back. Except when it was one step forward, two steps back.

I needed to heal. The doctors were right. I was a mess. Major surgery at that time? I don’t even want to think about it.

My next set of scans was to be in July, but May was not kind to me. I was hurting—badly. Daily.

In early June I spoke with my oncologist at Georgetown. She was surprised that my New York doctors were counseling me to not have surgery. In her mind, protocols are protocols.

And the pain I described concerned her. She suggested that we get scans done immediately. In her words: “I like to be over-cautious. Experience tells me that the test you don’t do is the test you needed to do. Get the scan.”

So I did.

And the scan showed…no change from March. My complications were just that—complications. On the balance, that was fine. The cancer had not come back.

We talked more, and I understood that she was very interested in my pursuing surgery. She was being coyly persuasive, and in her Jedi mind-trick manner she convinced me to let her reach out to a colleague in Indiana. She wanted another opinion on my situation. I agreed. It was a non-decision.

Summer arrived. I recovered. I lived. The LAs and I enjoyed the love of great friends in Maine.

And when I got back, I went to New York—disc in hand—to see my oncologist at Memorial Sloan-Kettering.

Approaching the Rabbit Hole

I was feeling better. Some days I felt…good! Others, not so much. I still entered brain-squeeze phases, when I could barely think or see and all I could do was sleep.

But I also had extended periods of lucidity.

And in those times, I considered surgery. I knew the protocol—have surgery. It was a non-decision…wasn’t it? It’s what I was supposed to do, right?

Right?

I sat in his office and went through my list. I described this and that, reported on the other, and came around to the 800 pound gorilla in the room: what about surgery?

As I previously wrote:

You have a mass of residual scar tissue that has adhered to all the surrounding structures, including veins, the iliac artery, and the femoral nerve. We don't want to go in there. We cannot predict the outcome. The chances are very good that you will lose some leg function.

If there are complications with the veins, drainage from the leg could be compromised, and you could end up with "elephant leg". If the artery is compromised—and we already know we are looking at an arterial bypass and graft—it could mean the loss of your leg. If the nerve is damaged—and we already know it is affected, based on your pain—we have no idea what that result would be. It could be loss of sensation, or function, or both.

And any combination of those complications could happen.

While we want the mass out of you, we view this as high-risk surgery.

OK, then.  Message received.

But, I’ve learned something from my cancer experience. You need to press your doctors. Challenge them. You are your own best advocate—and sometimes your only advocate. So step up.

I stepped up.

I talked about the known protocols. I expressed my concerns. I wanted more detail on the risks, and on the surgery, and…

We ended the conversation thusly: I would have another set of scans in September. Once those images were in, I would meet with him (oncology) and my surgeon to discuss my options. It was a perfect decision. I would get more time to heal. They would get more mature (and far higher-quality scans). And we could meet and focus on the surgery question.

Entering the Rabbit Hole

After returning home from New York, I got an email from my Jedi-Georgetown onc:

Indiana says:

"[Wheelsucker] has a small residual mass near the left iliac artery and vein.  It should be resectable but looks necrotic.  A small number of late relapses are cured with chemotherapy alone so if he wants observation I don't think that would be wrong.  If he wants surgery it is doable."

As I wrote in August:

What do I do now?

What would you do?

What do I do now?

- - -

The seeds of cancer are within me. They sit in my scar. My chemotherapy drugs...can cause...cancer.

The soil for cancer is...me. My flesh awaits.

...

(I just had a smack-across-the-face moment. I meant to write "The soil of cancer..." in the second line. I wrote: "The soul of cancer is within me.")

The soul of cancer is within me.

...

What do I do now?

What I Did

As best I could, I set it aside. I failed more often than I succeeded. But I tried to contain it.

I was shattered after Pelotonia Day 1.
Thinking back, I've been shattered through most of 2014.

I rode in Pelotonia, and I suffered awfully. I quit Day 2. (I regret that.)

I got the LAs back to school.

I worked. I lived.

And I was clench-your-teeth-till-you-taste-blood stressed.

Injured, I had to get off the bike. No fat bike joy. No riding at all...not even on a trainer.

I ate too much of the wrong things.

What do I do?

My relapse anniversary came. Went. I noted it, quietly. Heavily.

I drank too much of the wrong things.

The soul of cancer is within me.

September 22 was circled on my calendar. My next scan.

What was I going to do?

What do I do?

What Would You Do?

I have a choice.

It’s not an easy choice. Nor is it straightforward.

It took me months to be strong enough to face it.

It took more months to make it.

I have made my decision.

But I wonder…what would you do?

Your Situation

Your PET scans indicate that you have no hypermetabolism in your body. Based on this, your doctors have used the word “remission”.

Yet, deep within your pelvis you have a residual mass. It measures ~14mm in diameter.

Protocol calls for resection—complete removal of the tumor.

“Complete” means that they cut into the surrounding healthy tissue to the point where they are certain that they have removed all the diseased tissue—just like your dentist drilling out your cavity prior to filling your tooth. They get it all out, to reduce the risk of future relapse.

Your residual mass sits next to a major vein, your femoral nerve, and your iliac artery.

You are in constant, low-grade pain. Every minute of every day you have a dull ache from the interior of your left hip. When you exercise, that pain increases unpredictably. Sometimes it is slightly louder, though still dull.

At other times it’s insistent, brassy.

You know that cancer is within you...every day.

Your Choice

You can have surgery, or you can be monitored.

Surgery means you likely will lose your leg.

Monitoring means you risk another relapse.

What do you do?

- - -

In its simplest terms, that is the choice I have faced these past few months.

There is much more to the story than that, and I will share it with you.

The journey to my decision took months and miles and money. It involved tests and scans, oncologists and surgeons, four hospitals in four states, deep reflection, and the most disciplined decision-making of my life.

I know that my choice defines every day of the remainder of my life.

Yeah. It’s like that.

It’s like Life…but more so.

So...what do you choose?

Risk losing your leg?

Risk cancer’s return?

Think it over.

I did.

On this day...

...one year ago I was punched in the neck and poisoned...for my own good.

They cut me open and inserted a catheter into my jugular. They manipulated the tiny hose until its tip touched just outside my right atrium.

Cutting a flap into my chest, they inserted a Medi-Port, attaching the other end of the catheter.

It's still there.

I'm still here.

On this day one year ago my chemotherapy began.

It started with "pre-medications"--drugs assigned to help me survive the side effects of the "real" drugs to follow.

It continued with Taxol--a drug so toxic that they will not administer it via an IV. It is corrosive to most tissues. During a later cycle a suspected leak necessitated that my nurses wear double-layers of gloves, masks, and haz-mat gowns.

And that was the easy one.

And so it continued.

And I'm still here.

- - -

The past year has been extraordinary.

I experienced the best in people; the worst shattered me.

Love buoyed me up, even as poisons debased me.

Rendered inhuman, I wanted to die...even as I fought to live.

I fought. Every. Step. Of. The. Way.

I went places I never wanted to go. I don't want to return to them, but I'm still here. So, I must. In my own way; in my own time...to honor and respect and acknowledge.

And live.

I'm still here.

- - -

The past two months have been extraordinary.

2014 runs the same course as did 2013. Months of questions and answers and more questions and fewer answers...

Tests and scans and consults and doctors and hospitals and mile after mile and day after day listening and talking and seeking hearing searching--without and within--brought me to a cusp.

I needed to make a decision--one that defines the remainder of my days.

And made that decision.

- - -

One year ago today I started something I knew could kill me—expecting, hoping, it would save me.

And it did...

...so far.

It brought me to my lowest. But, I'm still here.

And you know what I am about to write...

I've got this.

Two Autumns

Outside the air grows crisp, the brisk wind nips, and we all await and hope for the riot of autumn’s color. Fall rhythms have already begun, as summer vacations pass into memory.

I love autumn. It’s a time of renewal, unlike spring. It’s a time for hope, a time for newness, with the promise of the holidays just…there.

I’m weird that way.

By the time I was settled into the high school from which I would graduate, I had started six schools in six years. So, for me each fall was a new beginning. It was hope and newness and promise, while spring was a time for endings and goodbyes.

Adulthood blurred those lines, but parenthood reinforced the pattern. Your child’s first day of school is all hope and newness and promise…some things never change.

Last autumn, however, was…different.

Labor Day weekend gifted me with a(nother) cancer diagnosis. September and October were spent with tests and scans and doctors and hospitals and opinions and counter-opinions and fear. November saw me begin hospitalized chemotherapy.

This autumn is much the same.

- - -

I write this on a northbound train. I’m travelling to New York for a scan.

Such simple sentences. Such complex meaning.

The odyssey that started on July 13, 2006 continues. (Ironically, my journey also paused for seven years. He had Calypso. I had “everyday life”. I’m not sure who had it better…)

And like Odysseus, my journey remains fraught. I seek guidance from godlike beings, I steer toward and away from danger as best I can, and I have faith. I rely on my wits, my will, and the (immense) support of so many—friends, family, colleagues, and those in-between. I trust in the kindness of strangers.

And today I take another huge step along the path…

- - -

There are two simple questions out there: what is my tumor doing, and what do we do with it?

See? Simple.

Today’s irradiated, tubular visit will help answer both questions.

The protocol for my particular cancer (as closely as they could diagnose it, based on their limited access to the tumor), was to resect the tumor and follow with chemotherapy. (Even as I write that I am shocked how simple those words sound, compared to the reality they describe.)

However, the size and position of the tumor made that initial plan unsupportable. I could have the surgery, but I might lose my leg in the process. Not good.

The secondary plan was that I would have surgery after my chemotherapy. The procedure would remove the mass and scar tissue, reducing my risk of future cancer and enabling the doctors to (finally!) learn exactly what type of cancer I had.

But, life does not go as planned. While chemotherapy was effective—killing the malignancy and shrinking the tumor—the bastard still sits on a nerve and an artery. So, the initial post-chemotherapy decision was to not pursue surgery. This would give me time to recover from the debilitation and horrors of chemo. We would monitor my tumor through nuclear imaging, monitor my general health, and hope for the best.

They warned me that were my cancer to reignite, it would come back this year. Statistically, more than 80% of the late-relapse returns occur within 12 months of ceasing chemotherapy.

Monitor.

Hope for the best.

Could you do it?

So, I enter the tube today to discover if the fucker is growing, and to see precisely what we are dealing with, now that my body has significantly recovered from chemo.

- - -

...September and October were spent with tests and scans and doctors and hospitals and opinions and counter-opinions and fear...

This autumn is much the same.

It’s September.

Tests and scans and doctors and hospitals and opinions and counter-opinions are upon me. In the next three weeks I will visit Memorial Sloan-Kettering Cancer Center (twice), Georgetown University Hospital, and The James Cancer Center at Ohio State University. I will see three oncologists and two surgeons. I will virtually consult with another surgeon at Indiana University.

I got doctors.

They got opinions.

Where do we stand today?

Every doctor agrees that I should have my tumor removed.

The surgeons, however, are of differing opinions about what should or could be done now.

• My MSK surgeon is deeply concerned about the risks of my surgery. I’ve written about it before.
• Indiana University believes that the surgery is possible.
• Both surgeons agree that “monitoring” is a viable option.

So, what to do?

Monitor?

Hope for the best?

Could you do it?

- - -

Today my odyssey continues. I enter a tube; I exit with images.

In a few weeks, my godlike guides provide me with answers…and opinions. I’ll consult with oracular nurses and survivors.

I’ll then go deep inside. I’ll muse.

- - -

Outside the crisp, morning air nips as I sip my coffee. Autumn has begun; summer fades.

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

Why?

Constant reader: This one is long, of necessity. It may seem to ramble, but it comes to its point, and rambling accurately reflects the space I'm in.

Significantly, this is Pelotonia week. On Saturday, more than 7,200 people will pedal to end cancer. I will be one of them.

- - -

I answered the phone. A friend spoke: "Should you be doing this?"

He was the right friend at the right time.

So, I answered, truthfully.

And it hurt.

- - -

I know. It's confusing. The last few posts seem so...contradictory.

One is heroic, inspiring. The other is...dark.

And they're fighting it out in my head.

They're both Truth. In may ways, they exist because of one another. There's no inspiration without darkness. There's no darkness without hope.

Which wolf wins?

- - -

I wrote this in July:

I made the decision. I'm in. I had reason to doubt. I cannot justify NOT doing it.
I will ride 180 miles for cancer research.
Please. Donate. Now.
    Each dollar raised goes directly to research—there is no overhead
    Each dollar will be matched, generously by Limited Brands
I will ride with the cancer community. Mindfully. Purposefully. With attitude.

It's August.

I still cannot justify NOT doing it.

But I shouldn't be riding. Just ask my friends. Several keep trying to talk me out of it.

Here's why...

- - -

When riding my fat-bike lap of the Patapsco 100, I injured myself.

Climbing up them embankment of the final river crossing, like a wildebeest on the Savannah, my knee went "oops".

"Oops" is different from "pop". "Pop" is when you tear something. "Pop" means you are done for the next six months. "Pop" is "fuck!" and "shit!" combined...it's "fushit!"

Mine went "oops".

"Oops" is "this is bad, but it could be worse." "Oops" hurts as much as "pop", but "oops" gives you hope.

Two days and two orthopedists later, the verdict was: no torn ligament, no torn meniscus, but "we don't know what you did".

One doctor suggested it was a bone bruise, caused by the joint's compression under load on that slippery slope. The other doctor suggested that I'd pulled my IT band (at the point where it wraps under the knee. Both doctors suggested I rest it for a few weeks, and see what happens.

Limbo, again.

I rested. Ten days. It got better.

Then I re-injured it.

Shit.

...

This weekend I am committed to ride 180 miles to end cancer.

Other than two, hour-long rides in the past three days, I have not been on a bicycle since July 6th.

- - -

"Should you be doing this?"

I hem and haw and mumble and nod.

- - -

Yesterday I went for a group mountain bike ride. In the middle of the ride, I lost my balance and fell off a bridge.

I never fully recovered.

Once the gyroscope lost its center, it never fully recovered...it never stopped wobbling.

- - -

"Should you be doing this?"

I hem and haw and mumble and nod.

And I lie.

And here's the truth.

I shouldn't.

And I have to.

- - -

I was warned.

My doctors told me, as I moved from chemotherapy to recover, that my metabolism would likely have changed. Permanently.

They said I would be tired.

They said that I would have difficulty losing the chemo-weight. They mentioned that "the Western diet is not your friend."

They warned me.

I've written about the fatigue. I've written about exercise (non-)recovery.

I haven't mentioned that my healing also seems compromised.

It seems that it takes longer for me to repair myself than it did prior to the chemo. Maybe it's true.

Maybe it's all in my head.

But I have a theory...

I believe that the toxicity levels of the particular chemotherapy drugs I took (Taxol, Cisplatin, and Ifosfamide) were so high that my body—at a cellular level—was fundamentally altered.

It may not be permanent, but at this stage in my recovery I see it seen in my exhaustion, befuddledness, vertigo...and healing.

I believe that a body recovering from one trauma, when faced with another, can't keep up, and healing is compromised.

It's anecdotal; I'm no scientist. But it passes the sniff test.

...

This weekend I am committed to ride 180 miles to end cancer.

Should you be doing this?

- - -

My mind's a mess. I wrote about it in some detail.

...but there's more.

Isn't there always?

It's Pelotonia week. It brings back memories...

- - -

I've ridden in each Pelotonia.

After the first life-altering year, each subsequent edition has brought something new, and wonderful. It's been the focus of every summer.

I've ridden it strong, as an heroic cancer survivor, finishing among the first in Athens.

But one year I only rode half. And I've regretted it ever since.

In 2011 I injured myself days before Pelotonia. I had torn my calf muscle, partly off the bone. It was a serious injury. I rode anyway.

I then spent the winter with a cast on my leg.

That was a difficult winter, and not because of the injury. My marriage dissolved, and in June I separated from my spouse of 14 years.

Injury, life-trauma. Not a lot of training happened leading into 2012. So, I planned to not ride in 2012. I volunteered.

And then I rode.I was at the opening ceremonies for my volunteer gig (helping with bike repairs and setup).

Overwhelmed, I was. The energy. The purpose. The joy. The pain.

In ten minutes, I called my friend: "Talk me out of riding."

"Um, yeah. You shouldn't ride."

"Right, I shouldn't ride."

Click

In ten minutes, I called my friend: "I just registered."

"Of course you did."

- - -

I've ridden it strong, finishing among the first to cross the line in Athens...

2012 was different. I rode on a single-speed. I paced myself. I rode with people I'd just met. It was fun.

But I didn't ride the second day. I did not ride 180.

And I've regretted it ever since.

...

I clanged the cowbell and cheered and jeered and showed my support. But every cell of me screamed that I should have been riding. I could walk. I could ride. And not riding was letting them down.

I don't know who them was. But I've since learned.

And them is driving me today.

Which wolf wins?
The one that you feed.

- - -

We all have our demons.

I've been facing mine.

And what I've seen haunts me. What I've learned pains me.

Them. Is. Me.

I'm a saboteur.

I am the architect of my own defeats.

I am mine own executioner. And I have been for time immemorial.

(I cannot express the "why" in this moment; someday I will.)

It's fashionable to say: "I fear success."

But the insidious truth is: I fear failure.

My fear paralyzes me, sending me into self-destructive spirals from which I don't recover.

Ah, but a man's reach should exceed his grasp,
Or what's a heaven for?

Countless times. I've positioned myself for success. Countless times, I've shied at the last moment, hiding. It's one thing for your ambitions to exceed your reality. It's quite another to dream the dream, and then never make the effort.

That's cowardice.

I'm a coward.

And I hate me.

...

Disappointment follows in my wake as I cross the dark, fear-filled waters of my failures.

I've let so many people down. People who have loved, trusted, and supported me.

And I hate that.

And I hate me.

The wolf howls, triumphantly.

...

People are boring. It's their contradictions that are interesting. We are the sum of our contradictions.

That statement is the lens through which I view the world. Nothing is more fascinating to me than observing the way people realize their lives. None of us are what we seem. And our contradictions are the keys to truly seeing us for whom we are.

...

I'm a coward.
But I've written and lived this:

I fear. I fear the unknown before me.
I fear the fall.
But I've leapt.
And I hope to fly.
And to be thrilled by the grace of flight.

I'm a failure.
But I've nurtured them:

I'm a coward.
But I've lived this:

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

I'm a failure.
But I've survived cancer.
   ...Twice.

I'm a coward.
But I'm writing this blog.

I'm a failure.
But you are reading this.

...

Them. Is. Me.

Which wolf wins?

We are the sum of our contradictions.

Should you be doing this?

I shouldn't...And I have to.

- - -

I was watching Sherlock. Moriarty said something that stopped me dead:

Pain, heartbreak, love, death, it's all good.
You always feel it...you don't have to fear it.

It made me think of Looker, John Looker.

In his second decade fighting cancer, he's made a decision I hope never to have to make. He decided to stop treatment.

Let that sink in...

He decided to stop treatment.

Quality of life is more important than quantity of live. He wants to live.

For John, it's not a question of whether, but of when.

And of which.

Multiple cancers are eating away at him.

He's riding.

I asked him if he wanted to ride a tandem on Day 2. He demurred. He said he wanted to do both days on his bike.

I get it.

And I'm humbled.

He is one reason why I feel like a whiner...

He's a super man. A Superman. And I want to be like him...

Yet...

I know his secret.

Let me re-phrase that. I know his secret.

He fights the same battle I do. Differently. But it is the same. 

It's a continual fight. Every day it's a fight...So, for the rest of your life, you're stuck with that shadowy figure...always, always, coming at you. Always coming at you...

And inside he is a mess. A hot mess. A swirling morass of twisted emotion, conflict, pain, fear.

So, really, I am like him.

John finds hope and inspiration in you. And me. And in this event.

And he rides.

Until he can't.

He found something that matters. In Pelotonia he found joy. He grasped it. He clings to it, digging his nails, white-knuckled, with hot tears and gasping breath. He holds it.

And it holds him.

And it is beautiful.

He's been through hells that I cannot imagine. And he knows what's coming.

And sometimes he's at peace. Other times he's devastated. And every moment of every day he slides along the spectrum in-between.

But he has hope. And so, he rides.

If not us, who?
If not now, when?

So, what's my excuse?

Pain, heartbreak, love, death, it's all good.
You always feel it...you don't have to fear it.

- - -

Should you be doing this?

I shouldn't...And I have to.

Fewer than 400 cancer survivors are riding Pelotonia.

I'm one of them. I am going to ride.

I will ride with the cancer community. Mindfully. Purposefully. With attitude.

There's a special magic in Pelotonia. It makes real these words :

• Cancer breeds hope, just as it nurtures death.
• Cancer inspires; the good become great.
• Cancer brings light, and love, and beauty, though it is a challenge to see it.

 ...

I've been weighed and measured; I've been found wanting.

I ride because I must.

Let's do this...together.

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

 - - -


 Postscript

There are so many stories. So many more stories to tell:

• The Pelotonia rider who learned of a genetic predisposition for breast and ovarian cancer—a woman who lost half her family to cancer—who is now a survivor of that damnable (and inevitable?) breast cancer.
• The Pelotonia friend—a man who donated thousands to support a young rider who had been riding in memory of his young sister—who just learned that his father is in Stage III.
• Jessica, the young, cancer-fighting superbabe who—despite her pain—brings joy to everyone she meets.
• The readers of this blog who send me notes, sharing their stories with me.

In this space I cannot tell them all.

But I can tell my tale, as honestly as possible.

We are the sum of our contradictions. I hope by shedding light into mine, someone, somewhere finds a little truth and a little comfort, knowing that they are not alone.

The Space I'm In

I'm in a place I don't recognize.

I don't recognize me. I don't recognize what I do or how I feel. Sometimes, I don't feel at all—and that scares me. Other times I feel so deeply I shake and sweat; and I'm paralyzed.

Coming back is hard.

- - -

They've drawn blood.

I've been irradiated.

They took images, and in them they see what they see.

They tell me things; I listen.

They have their way of doing things. They manage you.

I'm being managed.

It's frustrating.

- - -

I'm guilty.

I'm not doing what I should be doing.

I'm not feeling what I should be feeling.

I'm not thinking straight.

I'm not making good decisions.

I'm not what you expect me to be.

I'm not what I expect me to be.

I'm befuddled.

- - -

Is this PTSD? Is that just a label and a crutch, a convenience?

I don't know.

I do know that I'm not me...not a recognizable me.

- - -

Every day is a struggle.

Some days I win.

Some days I lose.

Most days are a draw.

Fear and doubt plague me.

Listen to this. Substitute "fear and doubt" for "booze".

It's a continual fight. Every day it's a fight...

So, for the rest of your life, you're stuck with that shadowy figure...always, always, coming at you. Always coming at you...

- - -

I haven't seen my nephew in three years. His first words to me were: "Did you get a perm?"

I told this to a colleague. He responded: "I thought the same thing."
...

It doesn't feel right. It doesn't look right.

It's grey, and dark, and brown, and...

I've never been a study-yourself-in-the-mirror guy.

I'm now a scared-to-look-in-the-mirror guy.

...

A friend: "You have TV-host hair."

I joke that I'm gonna grow white-guy ‎dreadlocks.

I'm only slightly kidding.

...

I miss being bald. It was...cleaner.

- - -

I spent the spring in fear.

I bounce between sadness and hope.

I'm getting angry.

- - -

A friend sent me a photo of me.

It was meant to inspire, and remind.

...

Who is that guy?

I hate photos of myself. I always have. There's good reason.

I like that photo.

I hated it at the time—because I see all the flaws. It's what I was conditioned to see...

Now I see it that photo, and I wish...I wish I was still that guy.

Where did he go?

He's not here.

I don't know if he is ever coming back.

And that may be a good thing.

But something's been lost.

- - -

I can't drink ginger ale anymore.

I can't look at a bottle of this brand without gagging.

- - -

One of my oncology nurses reached out to me. It took me months to respond.

I did, briefly.

I have a gift for the ward, never given.

I want to bring it to them. I want to thank them and let them know that I've moved on.

But...

I haven't moved on.

- - -

Chemotherapy was easier than its aftermath.

Chemotherapy was unmercifully hard.

- - -

The images show that there is a residual mass inside me.

The images detail its size and position.

The images indicate that it is necrotic.

...

The pictures don't show my pain.

It's constant, a two-to-three on the hospital scale. It spikes to a seven or an eight...randomly.

The pictures don't show my neuropathy.

It's constant.

My feet feel like the dentist just shot them with Novocaine. They feel bloated and numb, with an underlying pain deep within them. Sometimes electric bolts of pain stab me. Walking barefoot on anything other than carpet is a misery. If I step on a pebble, the sole feel like it has been shot...with a gun.

My hands sometimes lose all sensation. I was signing a receipt the other day. I tried to hand the pen to the salesperson. It flew out of my hand, hitting him squarely in the chest.

I never felt the pen.

The pictures don't show my befuddled brain.

It's intermittent.

I was driving by a farm. The sign read: Stray and Haw Sale.

Stray and haw sale?
I re-read it. "Hay and Straw Sale."

The pictures don't show my loss of balance.

It's intermittent. I rode solo on the road for the first time the other day. Within the first mile, I had run myself off the road. One minute I was riding at the road's rim. The next...I wasn't.

One minute I knew where I was. The next...I wondered how I'd gotten there.

The pictures don't show my fatigue.

It's constant, and it's intermittent.

I'm always a little tired. I need a lot of sleep.

Then there are the days when all the wheels fall off, and I am a zombie. A George A. Romero zombie, not a 28 Days Later or a Walking Dead zombie.

On those days, I sleep.

A lot.

Like 18-20 hours.

It helps.

The pictures don't show that I don't recover from physical exertion.

It's the new normal.

What took a good night's sleep now takes takes days.

Days.

And injuries?

Jeezus...

- - -

I don't feel good.

I don't have energy

I don't...live.

...

I feel like a whiner.


- - -

Doctors interpret the images.

Memorial Sloan-Kettering says (paraphrased):

You have a mass of residual scar tissue that has adhered to all the surrounding structures, including veins, the iliac artery, and the femoral nerve. We don't want to go in there. We cannot predict the outcome. The chances are very good that you will lose some leg function.

If there are complications with the veins, drainage from the leg could be compromised, and you could end up with "elephant leg". If the artery is compromised—and we already know we are looking at an arterial bypass and graft—it could mean the loss of your leg. If the nerve is damaged—and we already know it is affected, based on your pain—we have no idea what that result would be. It could be loss of sensation, or function, or both.

And any combination of those complications could happen.

While we want the mass out of you, we view this as high-risk surgery.

Indiana says:

"Wheelsucker has a small residual mass near the left iliac artery and vein.  It should be resectable but looks necrotic.  A small number of late relapses are cured with chemotherapy alone so if he wants observation I don't think that would be wrong.  If he wants surgery it is doable."

What do I do now?

What would you do?

What do I do now?

- - -

The seeds of cancer are within me. They sit in my scar. My chemotherapy drugs...can cause...cancer.

The soil for cancer is...me. My flesh awaits.


...

(I just had a smack-across-the-face moment. I meant to write "The soil of cancer..." in the second line. I wrote: "The soul of cancer is within me.")

The soul of cancer is within me.

...

What do I do now?

- - -

I'm in hiding. It's so much easier to hide than to go out...and live.

Living is exhausting.

I can do it...for a while.

We're all liars.

I can fake it...for a while.

But then...I'm done.

And when I'm done, I'm done.

- - -

Perspective makes it difficult to‎ seek help.

I should be happy!

I should be grateful!

I should be celebrating life and living it!

And I am, and I am, and I do.

When I can.

...

I'm conditioned to believe that love needs to be earned, and I haven't earned it. I'm not worthy.

Those patterns are grooved within me.

Those grooves are hardened.

It's so very hard to get out of those ruts, when you see them every day.

"It's a continual fight. Every day it's a fight."

Two soul-crushing heartbreaks hit me in the past year. Neither of them was cancer.

I'm conditioned to believe that love needs to be earned, and I haven't earned it. I'm not worthy.

Breaking free from those hardened grooves...gods, it's a struggle. I see them every day.

"So, for the rest of your life, you're stuck with that shadowy figure...always, always, coming at you. Always coming at you..."

...

I should be happy!

I should be grateful!

I should be celebrating live and living it!

And I am, and I am, and I do...

When I can.

The soul of cancer is within me.


Otherwise, I hide.

And I've been hiding.

From you and from me and from living.

Yet, I write this blog.

And I thank the gods for it.

- - -

It's an uneasy place, this space called "recovery".

I live between sickness and life, between ‎fear and hope. I'm neither here nor there.

I meander a path that keeps turning back on itself. It's a madman's labyrinth, byzantine and inscrutable.

From a distance, it seems beautiful.

From within, it's harrowing.

And that's the space I'm in.