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.

Zeus

I had a dog. Suki was her name. Suki the Wonderdog.

Suki was a shelter pup. 100% mutt. She looked like a small, short-haired Golden. She chose me, in a manner I will never forget.

I’m keeping that for myself at the moment. The point is: she chose me. I really had no choice.

Thirty-five pounds of fiercely protective, jealous female, everyone loved her.

Suki pre-dated beautiful and charming bride. It took years before Suki truly accepted BCB. Years.

When the eldest LA was born, Suki was not pleased. Suki became snappish.

It only took one incident. Former BCB had been attacked by a dog when she was very young. She retains the scars to this day. It was not going to happen to our newborn LA.

Suki left us, going to live with a friend on a farm with a score of horses and several score acres. We visited, baby LA in tow. Suki lived well, to the end of her days.

When Suki left our home, I was shattered. But I held it. I was angry, and sad, and disappointed. Part of me blamed the former BCB. Part of me blamed me.

And all of this happened during a time when I did not much like me. That’s not entirely truth. I think I hated me, then. I was in what should have been a happy point in my life, and I was miserable. And then my dog left. I was a wreck. But I held it. Sort of. But not really.

When Suki passed, I was shattered. But I held it. I was angry, and sad, and disappointed. I blamed me. And at no point did I allow myself to feel it. Oh, I know I held those emotions, but I didn’t feel them. And when I say “shattered”, its retrospective. I was. But I didn’t let myself be it.

Whenever I would begin to think about it or feel about it, I pushed it away. I wouldn’t let anyone bring it up...at all. I shut those doors in people’s faces. Nope. Not here. Not now. Maybe never.

Years passed. Eldest grew. Youngest was born.

Eldest started it: “can we get a dog?”

Youngest was two. “No.”

Every day the same. Some flavor of: “can we get a dog?”

Now, when I write “every day”, I am not exaggerating.

Every day.

Every. Day.

Eldest is stubborn in a particular way. And she’s clever. And she’s relentless. And if you know her at all, you know that once she had decided a thing, that thing will happen. It may take years, but it will happen.

Two years later. Deep January. I’m in the shower. I’m thinking about Suki. I’m thinking about family. I’m not super-happy with my home-life. Something is missing. Many things, probably, and I’m musing.

I emerge, dry, dress, and walk down the long hall into the kitchen. I walk in and announce: “I’m ready.”

Confusion.

Eldest gets it.

“I’m ready to get a dog.”

There’s excitement; I temper it.

“I’m ready to get a dog, but I think we should wait until the end of the summer.”

I knew we would be traveling quite a bit, and that with changing schools and travel, and a lot of other uncertainty, I thought it prudent to plan ahead and wait until we were settling into the school year’s rhythm. So, I was ready, but not immediately, and I wanted us all to take our time to prepare for the commitment.

Youngest’s birthday was around the corner, and her birthday party would be the following weekend. We had already planned to go to the party store to get her party stuff. As it happened, there’s one of those large, corporate pet stores next to the party store. Perfect. BCB could go into the party store, and the LAs and I could hang in the pet store.

It’s like I had planned it...or something.

We went. BCB went into the party store; the LAs and I went to the pet store. They were excited throughout the ride over. They nearly collapsed in anticipation when there was an adoption event in front of the store. A dozen or more dogs were out with their handlers, seeking their forever homes.

It was chaos. Chaos.

Shapes, sizes, types, and personalities assaulted our senses. Barking, whining, whimpering, growling--a cacophony of delighted and desperate dogs made their presences known.

Except...that one.

There. Just over there.

He was a big boy. And quiet. Strong, clearly. Tentative, somewhat. Not unfriendly, but not super-friendly. Interesting.

We looked over all the dogs and met a few, and one had caught my attention, and the girls had their favorites. And there was this one boy, who was hardly a boy--he was six. And he was interesting. And interested.

We gravitated, the LAs and I, toward him. We learned a bit. Rescued from a kill shelter when they were actually there to rescue another. He was a pit-mix in a county that killed pit-mixes. They got him out of town.

Something about his manner had captured their attention. As it had ours.

Can a dog have gravitas?

I saw BCB leave the party store with her hunted-gathered bags. I intercepted her on the way to our minivan. “There’s someone you need to meet.”

She gave me a look. One of those looks. I shrugged, rolled my eyes...something to cast myself into innocence. And I failed. She agreed to come over.

I sat down beside him. BCB was walking over. From thirty yards away, he saw her.

And that was that.

He made his choice.

We had no choice.

He had found his forever home.

When he finally came to us, it was in the first hours of a multi-day snowstorm. They dropped him at our home just as the heavy snow started. His first night, he slept in the LAs’ room. A pit mix. Even with BCB’s history, she knew it was the right thing to do. I was terrified. She was not.

A few days later a dear friend paid us a visit. He petted and hugged and commented how bad his original name was. Then he said: “Zeus”. We hallooed. It was right. It was perfect. He was Zeus.

Zeus didn’t like me. That’s OK, I didn’t much like me either. I knew that. He knew that. I knew he knew that. And it played out thusly: I would enter a room, and he would leave it.

Sometimes he would enter a room, and I would leave it.

For months, this happened.

We were roommates who didn't get along. We suffered each other’s presences in silence, barely tolerating each other, but living with it.

BCB and the LA’s? Fabulous. He was theirs and they were his, and heaven help the stranger who dared knock on our door. He was not a barker. He rarely vocalized. But when someone new knocked, his beachball-sized chest would swell, and thunder would follow.

Thor was a piker; this was Zeus. And his thunder shook the house.

But if he knew you, he was fine. Never fawning, he would be friendly.

You knew he loved you, if he sat on your foot.

You knew he adored you, if he stood on your foot.

I had to travel for work, and I spent a week on the West Coast. My return flight landed late, and I got home after midnight. I approached the house, knowing Zeus would be alarmed. I tried to stay quiet.

I fitted the key into the door, worked the lock, opened the latch, and cracked the door open.

Zeus was standing there.

He looked at me. I looked at him. He came to me and nuzzled my hand.

Shocked, I scratched him behind the ears.

He turned to his side.

He stood on my foot.

He made his choice. He welcomed me home.

I had no choice.

Time passed. BCB and I separated.

Zeus remained steady through it all. He never took sides.

For the LAs, he was always there.

For BCB, he was always there.

For me, he was always there. He helped me like me.

And that gave me great comfort.

I was leaving the home, but he would be there to protect them. Sure, with his bark, but more with his being. With his gravity. Just...

Just being Zeus.

Separation became divorce became a new home for the LAs and for Zeus. He gave me great comfort. I knew they were safe as long as he was around to protect them.

My final road trip with Zeus, Thanksgiving 2015.

And when I would drop off the LAs, or pick them up, or visit, Zeus would greet me. He would purr in the way of large dogs, with that deep, rumbling throaty vibe that resounds just above your hearing threshold.

And he would stand on my foot.

Zeus’s decline was shockingly rapid. He was twelve, and he had had myriad minor issues since we met him. His knees were bad, as was his hip. He lived with chronic pain. But he was strong--stoic in a way that inspired me. When my cancer and chemotherapy gripped me, making every moment an exercise in agony, I gritted my teeth and sweated through it. When I visited him during this period, I saw it in him. It saddened me. I think he knew. He was Zeus. And he made me stronger.

BCB made the decision. I do not envy her. But it was the right decision, and I am proud of her for having the strength to make the decision.

The LAs were devastated. And as I type this (mere hours after his passing), they are mourning.

At some point I started crying. I didn't recognize it at first. I needed to blow my nose, and I realized that tears have been pouring. Long before I registered my feelings, I was crying.

I'm crying still.

BCB and I were there for the procedure. They shaved his arm, inserted an IV, and we had our final moments with him.

As I sat with him, hand on his chest, I looked at his IV, and I thought of my chemo-port.

When the doctor came in with the syringes, filled with their colored fluids, I thought of the nurses who came to me at all hours with my chemo.

As she pushed the plunger of the first syringe--the morphine and valium injection--I remembered the chemical warmth, and taste, and flow of medicines as they poured into my body.

As I felt his tense body relax, I remembered my fever dreams, and the peace of letting go.

She inserted the final vial and depressed the plunger.

I watched the pink fluid disappear.

I felt his breathing stop

I felt his heart cease.

I felt his warmth evaporate.

I felt him...go.

On February 6th, 2016, Zeus passed peacefully.

May he rest in peace.

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.

Building

This is hard: starting, building, making…

Every step forward costs three steps sideways, a shuffle back, a dip, a spin, and a dodge.

Every decision begets another. Each new decision takes research, perspective, understanding, vetting, guts.

Decisions beget decisions with no map, only choices.

Where are the cul-de-sacs? The pocket circles that spin me, disorienting.

Where are the dead-ends?

Where are the paths that reveal vistas? Alternates unexpected. Sidetracks delaying, enlightening. 

Where are those moments, insights, connections that spark creativity’s flow?

I long for them. It’s where I need to be.

My nerves ablaze, abuzz, vibrating at ear-whine frequency. Constant caffeine courses through me. Shattered sleep fails to refresh. Dreams ebb, flowing into and out of reality—tidal.

My nights are not peace. 

Nor are my days.

How much time do I have left?

What do I want?

What can I get done?

Ever the vapor trail, roaring at inception…fading away.

Now, clarity. I sense more than I see: I want more. To be more. To do more.

And I hurt. And I doubt. I'm damaged. And I pause. And…

I want more.

Life.

Live it.

What will be will be what will be.

I’ve got this.