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.

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.

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…

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?

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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…

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.