Monday, December 22, 2014

Holiday Reminder

Everyone:

It's the holiday season. So very much happens. Most of it seems to be out of our control. It's confusing, this maddening madness.

And most of it is a complete waste of energy.

I did not participate much last year. I was "otherwise occupied". I remember little of last December. And what I do remember...well, I prefer to not dwell.

This year, I recognize how blessed I am to to have wonderful people around me; and I realize how little of what swirls around us this month matters.

Many people I know are overcome by real situations--not manufactured ones. And I empathize with their situations, and I wish there was something I could do to help in a meaningful way.

And I have learned that one of the greatest gifts we give to one another is...ourselves.

So, pick up the phone. Type a quick note. Leave a quick message that says: "I was thinking of you, and I wanted you to know." Or, get crazy, and say: "I just wanted to let you know that I appreciate you."

You might make someone's day.

You certainly will bring out a smile.

And it won't cost you a thing.

You've got this.

Wednesday, December 3, 2014

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.


Tuesday, November 25, 2014

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!

Friday, November 7, 2014

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?

Wednesday, November 5, 2014

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.

Tuesday, November 4, 2014

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.

Monday, September 22, 2014

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.

Wednesday, August 6, 2014

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.

Tuesday, August 5, 2014

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.

Friday, July 11, 2014

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.

Wednesday, July 9, 2014

2014 Patapsco 100 Race Report


I didn't ride 100 miles.

Sweet mother-of-all-that-is-holy, I cannot imagine riding that 100 miles.

My fat bike 33-miler was plenty...

- - -

The Patapsco 100 event is a mountain bike race set in the river valley of Maryland's Patapsco State Park. It features, well, everything. There are steep climbs, creek and river crossings, winding downhills, flowing singletrack, rock gardens, hilly meadows, and every sort of hiking trail you can imagine. And stairs.

Sounds lovely.

Let's revisit a few of those "features."

It has steep climbs...like The Hell of the North. That's both a name and a description. It's a hill so steep that the only way a mortal can climb it is to fall forward, hoping your feet will catch you before you faceplant.

Seriously.

And—since this is a bicycle race—you need to bring your bike with you, wheeling it up the cliff.

Uh-huh.

It's a hill so steep that you come to a dead, I-don't-think-I-can-get-going-again stop if your tire bounces off a rock. So, pick your line wisely. While falling forward. Or fall backward, ignominiously.

Bastards.


It has river crossings...twice across the Patapsco, waist and chest deep in the summer flow.

Probably not anything new for the experienced mountain bikers out there. But, I'm a newbie.

I'm on a fat bike. YOU schlep a 30+ pound behemoth across a river. Twice.

Bastards.


Oh, and once you've forded one of those crossings, you get to haul yourself and your bike up several flights of Mayan-ruin stone stairs. Soaking slickly wet. And then you have the privilege of granny-gearing it up the remainder of the switchbacking hill.

Bastard-Bastards.


It has flowing singletrack...in perfect, tacky condition after a week's kind weather. Some of the trails are new—as in just-cut-through-the-forest-for-this-event new. Those trails are 18 inches wide. Sweet!

Those trails also have several hairpin turns. Exciting!

Those hairpin turns feature complete exposure on the outside of the curve...you go over, and you drop. Like a brick. In the alps. Like a big fat-bike brick falling through alpine air. In some cases, onto railroad tracks. Huzzah!

Bastards.


Patapsco 100 is a real race.

And, yes, a single 33-mile loop was plenty for this chemo-recovering boy.

The Morning


I was up exactly one minute before my 0400 alarm. It was one of those nights. You know the ones. It was one of those stirring and surfacing non-sleep nights, anxiety-driven, worried sweaty about sleeping through your alarm.

It was a beautiful heart of the sunrise.
Breakfast, last-minute checklist, out, drive to the event. I was awake, alive, and buzzing.

No need of caffeine; this was a big day.

The music was throbbing, the sunrise was a gift from the gods. The miles rolled past. I arrived.

Magnificent energy abounds before a race. If you've done it, you know it; if you know it, you need it; when you need it, it's your addiction.

Lord, how I'd missed it.

I did a lot of things and chatted to a lot of people and pooped...thrice—thank heavens for real toilets. Magnificent energy abounds before a race. Offtimes it's centered just south of your stomach...

The butterflies collided inside my chest; breathing was quick and shallow. I was nervous energy—personified.

But I was the good energy, the happy energy, the all-I-care-about-is-finishing energy, the no-pressure energy that comes from surviving. The energy that comes from joy.

Earlier races started. Better riders rode. We queued up for our launch, and we rolled—uphill to start. Perfect. It tempered the adrenalized frenzy of the start, forcing it to mellow. I watched a large group pull away; a gap appeared. Out loud, I started singing Fool's Gold. Yep, I'm that guy.
The gold road's sure a long road. Winds on through the hills for fifteen days.

Fat bike 33 would feel like fifteen days.

The Race Begins


This race was about pinning on a number. It was a milestone.

Months of recovery; starts and stops; fits and stops; a shitload of stops led to my start.

I began the race overweight. While down from my January maximum of 225; I weighed 190—still 15 pounds above my cyclocross weight last August.

I began the race out-of-shape. The longest I had ridden this calendar year was a three-hour road ride that featured a 30-odd minute snack break. Thanks to the World Cup, I had a bunch of two-hour trainer sessions in my legs. The stuff of legend, this is not. Merckx, I ain't.

I began the race with neuropathy in my feet and hands. In May I broke two toes in an event. After the initial pain, I didn't feel them at all. Ever. So, I knew that there would be times when I would feel neither feet nor hands. I knew I wouldn't know when it would happen, but I hoped...oh, hell, I don't know what I hoped. You just do what you need to do to do what you need to do.

I began the race with the constant reminder that cancer resides within me. It's not active, thankfully. But the tumor scars are there, affecting me every day. The seeds are planted for its return...again. I'll write more on that in my next post. For now, leave it at this: every time I press a pedal with real power, I feel the scar deep within my pelvis. It's there. It's real. It hurts. It reminds.

I began the race...

Yes. Yes, I did.

The Race Rolls On

I'm a big boy on a big bike. I descend like a dervish. I climb like a bloated slug. I cruise like a train—a slow-moving diesel pulling 100 cars of pure West Virginia coal.

Big boy rides big bike makes big splash.
I have no skills. I re-learned how to bunny-hop in April. I started getting comfortable with rock gardens in June. It's July. I'm a novice. But I ride a fat bike—the most forgiving, blessed, wonderful bicycle I can imagine. I don't know that I shouldn't do many of the things that I do; so I do them, and I don't fret. Until afterwards, when I realize that I just did something I had no business doing. Then I panic. And giggle.

I giggle a lot.

Except when I curse, punchily piercing the air with choice expletives. Nothing creative, mind you. The simple stuff does suffice. It's all in the delivery...

Good things happened. I passed a few people.

Bad things happened. I hopped a good-sized log, cleanly, and then kissed a tree.

Now, why anyone would place a tree in the middle of a forest, I have no idea. It was damned inconsiderate of them, and I was pissed! It ruined my flow! And my handlebars. And my headset. And me!

Ten minutes and a score of riders later, I re-started, with my headset almost repaired and my bars almost straight and my shoulder almost intact.

But I didn't go to the hospital...I kept on riding...

I failed, a lot. I walked, a ton. I suffered, deeply.

But suffering is different, now...

Suffering has changed.

When you have an injury, or you're in the hospital, and they want to assess your pain, they always ask you: "On a scale of one to ten, with ten being the worst pain you've ever experienced, and one being no pain at all, how would you rate your pain?"

With respect to you, honest reader, there are very few of you out there who have experienced my "10." I don't mean to sound dismissive—I completely respect other peoples' experiences (and I know damned well that others have experienced far worse)—but I can write with conviction that I know pain. I've emerged early from surgery—and I remember it. I've felt my sternum try to explode—and I survived it.

I spent days like this.
I've been through chemo cycles that destroyed me. I was so sick, so exhausted that the effort to roll over was more than I could bear. So I didn't move...for hours...and the only energy I spent was that which I needed to breathe...and to weep.

I've suffered on a bicycle. But let's be honest, it's only riding a bicycle.

So, when I write "I suffered, deeply", it means something more.

I went places.

Veteran readers of this blog will know what I mean. I have a good, honest relationship with my inner voices. When I ride, they talk, and I listen, and we argue, and I learn.

I thought a lot about my doctors. I thought more about my nurses—those blessed angels on Bles 2 at Georgetown. I thought about my fellow patients. I thought about a friend who is coming to the end of his cancer battle. I thought about by Little Angels, my sweet daughters. I thought about all the friends who got me from that place without a postcard, enabling me to do what I was doing. People and places and voices and so much passed through my head.

And they inspired me.

There were hills I climbed because they were with me—hills I otherwise would never have tried. There were times I pushed through because they pushed me. It would hurt more to quit, disappointing them, than it would hurt to continue.

Yet, no one was there. No one could see. And few even knew what I was doing. But, they were with me—all day long. 

In the darkest places, I thought about those closest to me who had hurt me most. They, too, were with me...all day long. But when I started to feel them approach—when they started to drag me down—I sent them away. And I felt stronger for it. I had no room for doubt. Belief and hope were what mattered, so I seized the memories of those who supported me, drew them close, and let them carry me all day.

- - -

The day wore on, the miles passed, hills were climbed, slopes descended, rivers and creeks crossed, I rambled on...

I passed through the support stops, drinking in the love and positivity. Friends were there, cheering me on. I felt like a hero.

And then things went...wrong. Around mile 26 I started hurting—really hurting. I stopped. I rode. I stopped again. I rode some more. The doubts got louder, and the voices that drove me forward got weaker. But they didn't quit. At the edge of a ravine I stopped and breathed. I looked across the treetops, dappled in the summer's sunlight. I drank in the damp, wooded air, letting it fill me.

I was alone in the woods. In that moment I could have stopped. It would have been fine, I told myself. As my heart rate dropped, and my breathing relaxed, and I calmed...an image came to me.

It was a photograph, recently taken. In it two people with whom I am connected by deep affection...and cancer...look up and smile. They're giving cancer the finger.

F-you cancer.


I smiled as my eyes welled.

I. Rode. On.

- - -

Somehow, I made my way back into it. I was racing.

Who I thought I was racing, I don't know. It wasn't the other riders around me. It wasn't myself. Maybe it was the ghosts and the voices. I dunno. But I do know this...I was racing again.

And then came The Hell of the North.

I looked up once, and it took my breath away.

So, I stopped looking, and proceeded to fall uphill.

Time slowed. Vision blurred.

The hill is a vortex. An observer would see an idiot pushing a bike up an ungodly hill, but the idiot experiences something completely different...
Push a bike, cling to a tree,
it's all the same to me.

I shuffled the halls of the oncology ward, clutching my IV tree, watching my feet slide along the tile floor. The hoses and tubes swayed with the rhythm of my slow, steady, motion. I focused on my feet, willing each small shuffle forward, never feeling the progress—neuropathy robbing me of sensation.

My stomach churned and swelled and threatened, and I beat it down. With my will. Only my will. It's all I had left.

And I shuffled on, to what or where I did not know. One more lap. Once more around the ward.

I was racing.

It got easier. Then it didn't. Then it did again. So, I looked up. I was nearly there...wherever "there' was.

And I didn't look back.

- - -

I entered the route's final climb with nothing left. I entered the park with my will to finish, and precious little more. And what a climb it was. Baked tarmac broiled me from below as the sun melted my brain. And just when I thought I couldn't handle any more...it leveled out, and I was nearly there.

I crossed the line and heard the voices. I stopped—shattered. I shuddered.

I wept.

- - -
This is what shattered looks like.

I'm not a good mountain biker. I gots no skillz. I'm woefully out of shape.

I'm not racing for a podium.

I'm not racing you.

Hell, I'm not even racing me.

Maybe I'm running away.

Maybe I'm running toward.

Maybe I'm racing life...or death...or my ghosts...or my voices.

Maybe I'm racing just to race.

I dunno.

What I do know is this: I have the courage to pin on a number and go; and I'm more alive when I do than when I don't.

I think I have something to prove—more to myself than to anyone else.

I'm just not sure what that thing is.

And as I write this, it does not matter.

What matters is that I did it. I finished.

I didn't let them down.

I didn't let you down.

I didn't let me down.

I did it.

And I'm a better man today for having done it.


Thank you...all of you.
Thank you.


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

Sunday, July 6, 2014

Six Months Ago (Today)

Six months ago I was starting my fourth chemo cycle. I was bloated, weak, bald, hurting. I shuffled with a cane. I weighed 225 pounds. I had no sense of smell or taste; I heard whizzing buzzes in my ears—constantly. My hands and feet felt like they were visiting the dentist—one minute they were Novocaine balloons, the next minute they gifted me stabbing pains.

I was sick.

I had not recovered from my third chemo round. Sure, the blood was recovered enough for me to receive chemo again. But I was not.

Those were dark, dark days followed by brutal nights.

- - -

Three months ago I was recovering. I was bloated, weak, bald, hurting. I walked with a cane. I weighed 205 pounds. I could smell and taste again—somewhat...it was still coming back to me. My ears buzzed occasionally. My hands and feet were little better.

I was healing.

I was exhausted, but I was recovering. My blood looked good; I needed to let my body, mind, and soul heal.

I had more bad days than good days. My nights were either a long, waking nightmare, or I slept like a man in a coma.

I slept a lot.

And I healed. Slowly.

- - -

Today I am going to do something crazy. I'm racing a bicycle.

Racing.

A bicycle.

It's a real race this time, a real event.

Yes, I've participated in two small "races". They were local, short events that enabled me to pin on a number and go.

You have no idea how important that has been for me.

Pin on a number.

Go.

- - -

One word describes the past six months: "struggle."

Another word describes me over the past six months; "fearful."

I going to write about that. It will be uncomfortable. It will hurt.

But for now, I want to focus on now.

Today I am going to do something crazy. I'm racing a bicycle.

- - -

A lot of people have done a lot of things to bring me here.

So many things have been said and heard, so many connections made and broken, my head spins.

At times I've been pathetic. At other times, ruthless. Still others, useless.

I've beaten myself inside-out; I've nurtured myself outside-in.

I've oscillated wildly. The gyre most definitely did not hold. Things. Fell. Apart.

And a lot of people have done a lot of things to bring me here.

I've learned. I've lost. I've won. I've become.

And I'm still becoming.

And today is a milestone for me, because I'm racing a bicycle for real.

- - -

My goal is modest—finish without going to the hospital.

That was a joke.

Well...

OK, it wasn't a joke.

But it's funny.

I will ride 33 hard miles through the Patapsco State Park. I will ford the river twice, carrying my bike. I will encounter steep, technical climbs that are so difficult, I will walk. Not trot, or run, but walk...barely.

And I'll be happy for the privilege.

I'll rattle down descents so steep and rocky that there's a very good chance I'll be thrown, shattering bone upon impact.

And I'll giggle all the way.

You see, I'm such a novice, I don't know that I shouldn't do some of the things I do.

And while fear has dominated these past months, careering down a rocky pitch somehow...isn't scary.

It's vibrant, alive, sizzling, present, and...beautiful.

I'll hold my breath, clenching my teeth, hyperventilate, and giggle.

And I'll suffer.

My legs will go weak, and then give out. My lungs will sear. My heart will flutter, pumping with all its strength.

My ass will hurt.

My scars will stab, then ache. My port will bruise. My back and neck will spasm.

And I'll be happy.

- - -

Six months ago I was starting my fourth chemo cycle. I was bloated, weak, bald, hurting.

Today I'm racing a bicycle.

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

Tuesday, March 18, 2014

Everything I Know Is Wrong


Trauma redefines you.

It resets everything you know—each standard, basis, paradigm is renewed…different.

Cancer is trauma.*

There’s a list (isn’t there always a list?) somewhere that identifies modern life’s great stresses. Birth of a child (parenthood), death in the close family, major illness, loss of job, major relocation, marriage, divorce**… I’ve been through most of them.

Whoopie.

Cancer has been…different.

And I’m feeling it.

Today


I’m in the 11th hour and 58th minute of a divorce. I’m on the train to get a PET scan that will define my future. I’m in an epic financial crisis.

But I woke up this morning.

I’m in constant, low-grade pain. Sometimes my brain just…stops. I have the unpleasant kind of pins and needles in my feet, and sometimes it feels like someone is driving a nail into my toes.

But I’m here.

And it is so very strange to be here like this.

Halfsies


I’ve never been a “glass is half full” kinda guy. Maybe more a pessimistic pragmatist. I’ve long passed my moaning Morrissey phase. Yet, over the years I’ve known despondence. I’ve ventured deep, exploring my personal darkness. And I could go there now.

But I don’t.

And I’m not sure why.

I’d be lying, were I to write that I’m now a “half-full” kinda guy.

Yet, so many of the clichés are becoming in me.

And it is so very strange to be here like this.

I don’t know where the balance will settle. But I suspect that sometimes a cigar is just a cigar; and a glass is halfsies.

Resilience


It’s expected of you, resilience. We’re supposed to be able to suffer the slings and arrows. Outrageous fortune befalls, and we meet it. Otherwise, we’re seen as weak and needy and a whole lot of other words; there are many synonyms for “pathetic”.

To cope, we eat too much, or drink too much, or watch too much TV, or immerse ourselves into video games. We consume. And Gluttony and Lust are mere words for the excruciating passions we feel—the desperate needs that possess us…as we lubricate our resilience.

To cope, I fight…quietly. All the passions bubble and squeal. They’re there…right there. And it’s nothing to embrace them…and it’s everything to not.

I don’t always win.

But I’m winning those fights far more often than not.

Does that make me resilient?

Survivorship


Recovery is not what you think it is.

You think it means sleep and detox and quiet and rest.

And it does.

But that’s merely plot. It’s the rest of the play that matters.

I have passed through, from the two-steps-forward-one-step-back phase to the one-step-at-a-time phase. I no longer have a good day and then sleep all the next. I’m now functioning…a lot like you. But I’m diminished. Less. Compromised.

I push myself, but there’s only so far I can go.

And it is so very strange to be here like this.

Everything and everyone has changed. Everything I know is wrong.

Childlike, I’m exploring my world. Eyes are open. I’m redefining.

(And I know that the changes are in me. It’s my perception…it’s altered.)

And knowing the past, I much prefer the world I see before me.

But that past encroaches. Long shadows loom. (I want them gone!) Clarity is clouded, and those shadows weigh…heavily.

Oh, so heavily.

And it’s now, today, as I approach New York, that it grinds.

And it’s soon, when they slide the slab bearing my irradiated me through that tube…slowly, oh, so slowly…that the weight crushes.

And it’s when I’m lying motionless, surrounded by industrial sound, instructed to relax, so they can accurately measure my metabolic rates, to learn if my cancer is dead, or not… it’s in those moments of mandatory quiet that the shadows scream.

And if you were there with me, observing. You’d think all was well. I’d be dead still. A fly could land on my face, and I’d not move.

But I’d be Norman Bates, living a waking nightmare with a riot between my ears,

And this is survivorship.

Every day is new, and every day is fraught.

I’m redefining, not relearning.

I’m fighting.

I’m releasing.

I’m becoming…

Alone…and Not


I’m completely alone…as are we all.

I’m connecting…as few of us do.

I’ve been all around this one. I am absolutely certain that I am alone.

When I am in that tube later today, no one is with me. Even if you were there to hold my hand (as has happened before), I’d be alone.

And that’s OK.

In fact, it’s necessary.

Your life’s journey is your own. You may choose to share it with others—to varying degrees—but it is yours.

And sharing it is the greatest gift we give to one another.

And enabling ourselves to accept that gift from others is the greatest gift we can give…to ourselves.

I’m getting through the latest phase of my journey, because I share it with you. And because you share yourselves with me. And because I’m letting you in.

Cancer changes things. It grinds down your defenses. It opens you to possibilities.

It opens you.

And for me, that means connecting.

It means accepting that I am alone.

And accepting that I am with you.

And being at peace with a contradiction.

And it is so very strange to be here like this.

But maybe, together, with little effort on your part, we can banish the shadows. Or, at least contain them. Or, ignore them. Or…in time…accept them.

What a beautiful thing that would be.

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

-----
*Cancer is myriad things. Trauma is one of them. Here I seek not to limit cancer’s influence, but to corral it. A bit.

**War seems to never be on those lists. I think those who have been in combat would offer a different view…

Thursday, February 20, 2014

Silence Is...

Silence Is...

Golden?
Desolation?
Peaceful?
Fraught?
Silent?

I've been quiet, largely silent.

There are reasons...more than a few.

Some are big; some small. Some are real; others...contrivances.

Interestingly, none are excuses. There's no need. I'm in an oddly free space. I'm not beholden to anyone.

Except myself...

You have no idea how strange that feels.

...

There is one reason for my silence that dominates. It's probably not what you think.

True, I've been focused on recovery....living. When I first got home after Cycle 4, walking was a huge effort. Stairs were a Himalayan challenge. Sleep was constant, but it was rarely restful.

I was toxic, poisoned, sick, weak. And that was my body.

I was sick and tired of being sick and tired. That was my spirit.

I was sick and weary. That was my mind. When it worked. It seldom did.

Chemotherapy changed me, and not because I'm fat and bald. It...quieted me.

True, I've mindfully (when it worked) become a consumer...not a producer. I've read (when I could) graphic novels that expanded my imagination. I've watched more movies than is healthy. I've not listened to much music...I can still only handle one brain input at a time...but the television and movie consumption make up for any shortfall in my modern media mastication quota.

I have not written.

I've recovered and consumed. I've been as passive as possible.

I've parented.

I've slept.

But I haven't written.

For one reason...I'm afraid.

...

I'm on the train to New York to visit my doctors at Memorial Sloan-Kettering Cancer Center. It's a familiar environment. The rumble and clank of the train, the sour stench, the cloying atmosphere can only be Amtrak.

This should have happened last week, but New York was closed. A storm was rolling in, promising apocalyptic visions that included heaps of snow, howling winds, and wayward Russian cargo ships floating down 42nd street. (I told you I watched too many movies...). So, they closed the city. MSK rescheduled, Amtrak rerouted, I stayed home.

Which meant I got to wait. More. More waiting. More limbo. More...fear.

You see, I don't know what's coming.

That's not strictly true...I know surgery is coming. But that's like saying that death is coming (was that in bad taste?). You know it will happen, but you don’t know what form it will take. And you don’t know when.

Surgery is coming. I don’t know what form it will take. I don’t know when it will happen.

And that scares me.

You see, in 2006 I had two surgeries. The first, an orchiectomy, hurt like hell, removed part of my manhood, left me with nerve damage that eliminated my primary erogenous zone, yet had relatively easy recovery.

Sure, leaving the hospital was brutal, car rides were agony, and I was constantly nauseous from the pain and the constant sensation that someone had kicked me in the balls (er… ball). But it was manageable.

How I long for my surgeon to tell me that my next surgery will be something like that. I would weep with joy.

Seriously.

The second of my 2006 surgeries was different. It’s got a fancy name: retroperitoneal lymph node dissection. It’s so fancy, it gets an acronym: RPLND.

During RPLND they slice you open from sternum to pubic bone along the center line of you abdomen, curving around your navel. They open you up, and they take out your entrails (and gods know what else…), so they can get to the lymph nodes that live along the inner wall of your back. They open you, dig a well, and scrape out bits of you. Then, they put Humpty Dumpty back together again.

In my case, I awoke in the recovery room screaming. They had the wrong medication mix in me, and I could feel…everything. I later awoke in a hospital room with a bloated carcass, railroad track staples holding my abdomen together, and pain meds that just kept the pain at bay.

Long story longer…it took me a week to awaken my bowels, weeks to be able to function basically, months before I was ready to face life outside the home, and years before I felt like me.

How I long for my surgeon to tell me that my next surgery will be nothing like that.

But I doubt it.

Here’s the thing. I don’t know how you get there from here without removing my bowels. I’m an amateur anatomist. I’m no surgeon. But I know how challenged they were when they tried to perform a biopsy. Things haven’t changed that much…

Of course, I’ve done the Internet research I could. And I learned very little.

I’ve lost a lot of sleep. I’ve lost my sense of humor.

As today has approached, I’ve gotten quieter and quieter…because I am afraid of what the doctors will tell me.

But that’s not all…

My situation—from day one—has been…interesting. I’m a late-relapse (they think), which is rare. I’m in my mid-forties, which is rarer. And my cancer is not conforming to type. The doctors love me—not merely for my sterling personality and astonishingly good looks—because I am fascinating. They can learn from me.

Whoo hoo.

One of my cancer’s non-conforming behaviors is that my blood markers are negative. In other words, one of the primary methods they use to monitor your cancer’s activity is unavailable to them. It’s like flying an airplane without instruments or piloting a boat without charts or stars. It means that they tap into their collective experience to guide their decisions. About my medical care. About my life.

One of the great lines that was delivered to me straight-faced was: “it walks like a duck and looks like a duck…so we’re going to treat it like it’s a duck…even though it doesn’t quack like a duck.” My cancer is a foul fowl.

So, while the chemotherapy had a positive effect on my tumor (shrinking it by some 30%+), and while my CT scan shows no additional tumors…what do we really know about what’s going on in there?

Not much.

Which is the other thing I fear…what will they find when they get in there?

I know the tumor is there. I have unambiguous pain. It sits in my hip and radiates down my leg. Sometimes it hurts me after I eat…as food moves through my bowels. It’s no fun.

So, what else is going on in there?

I know the tumor is embedded in the psoas muscle, and that it was directly pressing against one of the two branches of the iliac artery. But what does “embedded” really mean? What else is affected? What tissue damage is in there?

Which brings me to my third resounding fear…what will life be like after surgery?

That’s a simple sentence that’s really hiding a bunch of others.
  • What will my recovery look like?
  • What long-term affects do I face?
  • What will my medical life after Cancer 2 look like?
  • What will my survivorship look like?

For those who think I’m wallowing, notice that I assume that I will survive this. I do. I’m not ready to go, and this isn’t going to be what gets me. My time isn’t now. I know this. I don’t know when, and I don’t know how she’s going to come for me, but I do know this isn’t it.


Each of those is an essay. In simple terms, here is what’s in front of me:
  • Recovery could be like orchiectomy, or like RPLND. It could be weeks or months into years.
  • Long-term effects could—on the extreme—include my losing my leg. Lesser affects include nerve damage that diminishes leg function and strength. There also could be damage to my bowels, with myriad complexities. There’s a lot that could go wrong. And we’re not talking lightning-strike odds. Oh, and did I mention the long-term effects of chemotherapy? Some of those are down the road for me…
  • Medical life includes…what? Blood markers are useless. Do I have CT scans every X months? PET scans annually? How much radiation do I need to absorb through my imaging? How do we know that I am cancer-free?
  • Survivorship means different things to different people. How will I live my life in the aftermath? What will I do to be worthy?

---

Silence, t’was born of fear.

I have a lot to fear…the type of surgery, what they will find, life after…it can be crushing.

I sleep alone. I awake alone. My children are growing. When fear sets in, it meets and is multiplied by loneliness. Together, they can make a hell of heaven, crushing a soul.

I fight it. Sometimes loudly. Sometimes silently.

But I fight it.

Silence is…

Wednesday, February 19, 2014

So, How Are You Doing?

A lot of kind friends have asked me this question recently. Here is a quick update…

I had a CT scan in January. The tumor appears to have reduced in size in two of three dimensions. The other was larger. Since it is soft tissue, it makes sense that it could have changed shape. The good news is that no other tumors were spotted. Other than that, it was a good CT…no news is good news.

I am still recovering from chemo. I have neuropathy in my toes and fingers. Sometimes I get befuddled. I no longer get the seizure-like brain shocks that were so debilitating during the first three weeks post-hospital. Even so, my brain has distinct limits. More than one source of stimulus is almost impossible to handle. I cannot easily read. I absolutely cannot read and listen to music simultaneously.

My sense of taste is coming back. Chocolate still is a bit…odd. Most other foods are fine. Plain water makes my stomach churn—this is psychosomatic from my time in the hospital.

I sleep better now. I feel I have mostly de-toxed, so I am no longer waking in deep pools of sweat. And when I awaken, I know where I am. That’s a good thing.

I have pain. The tumor hurts. Certain movements let me know with absolute assurance that there is something wrong.

I’m weak, but I’m stubborn, so I do too much. Think snowshoveling. Think sledding. Then think sleep and ibuprofen.

I’m weak, and sometimes things go wrong. I’ll be walking along, and my legs will declare that they are quite done with walking, thank you very much, “so we’ll wobble a bit and freak you out”. Yeah, it’s fun. It’s also why I will walk with a cane, even though I seem OK. At any moment, things won’t be ok.

And that’s the gist of it: at any moment things won’t be OK. And it definitely freaks me out.

Emotionally, I’m on a roller coaster and I’m trying to keep the brakes applied as much as possible, while at the same time allowing it to run. It’s a delicate balance, and it’s not for the faint of heart. It’s also not something for a person who does not live alone. If there is a good part of my isolation, it is that I am learning to (cope, manage, function, thrive) on my own.

Spiritually, I’m learning to let go. It’s not easy. I don’t care about a lot of the things I did in former times. Some things that linger shouldn’t. Others should. I’m working through which is which. It gets confusing.

And that’s another gist…there’s a lot of confusion and uncertainty; l am learning to live with it.

Whether I like it or not, it is what I need to do.

I do eat too much—of the wrong things. That’s my primary vice. My other is that I long for a partner.

I’m also dealing with a lot of fear. I’m writing another post about that. Stay tuned.

At the moment I am without much humor. Hope is assumed, not “hopeful”. Positivity does not reign.
There’s a lot of “getting on with getting on” in my world.

The Little Angels are what keep my head. Time with them is precious. I know it.

So, that’s the quick update. Nothing poetic or prosaic. It is what it is…

…for now.