Tuesday, September 27, 2016
The Space I'm In
Saturday, February 6, 2016
Zeus
For me, he was always there. He helped me like me.
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| My final road trip with Zeus, Thanksgiving 2015. |
Friday, August 7, 2015
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.
Tuesday, August 4, 2015
It's Alright, It's OK
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.
Wednesday, May 27, 2015
Building
Monday, May 4, 2015
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.
Friday, January 30, 2015
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.


