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.