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.

Pelotonia 2014...I'm In

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.

This post is a shot across the bows. Broadsides to come.

- - -

Here's my rider profile:

That was then...

I'm a cancer survivor.

I ride with the scars from previous cancer battles.

I'm a five-time Pelotonia veteran.

I rode 180 miles last year.

Three weeks later I was diagnosed with a late-relapse tumor.

I'm recovering from a long winter's battle; yet the seeds of new cancers are inside me.

- - -

Then, that was then...

Cancer came back.

It does that.

It's insidious.

- - -

Yet...

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 live it.

This is now. Let's do this.
"If not us, who? If not now, when?"

I've lived it.

- - -

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

I'm making up for lost time.

Let's do this...together.