The poets lie.
Doubt doesn't creep in—it's already there.
It's always there.
It's the vermin that crawls around in you mind's bilge.
When you catch a glimpse of it, you recoil, shocked. It's terrifying, and familiar, and...it's you.
Most of the time the bilge water is contained. The vermin hide, only emerging at night to haunt you—in those quiet times when you're alone with your fears. Most of the time, you've got that. You manage to shoo them away, back to the darkness. But they're always there...
And sometimes they rise up. You recoil in horror and despair as they takes control. Most days you fight back, and you triumph, like the Nutcracker battling the Mouse King—if only for a while. Those are good days.
Then there are days like my yesterday. Days when the vermin scurry about, infecting everything you see and hear and experience, rendering your day a series of failed trials, realized fears, despair. Those are bad days, when Doubt and Fear—Despair's minions—reign.
I've written about how
we're all liars.
This is a dose of reality.
My reality.
I've Plateaued
I'm maybe 70% of me. Maybe.
At the moment I feel well enough to write this. Sort of. Most of the time I feel diminished—more like 50% of me.
It's not fun.
According to the plan, in the third week of each cycle I should be feeling good. I should have passed through the toxicity of my chemotherapy. I should have passed through the neutropenia. I should be sleeping decently, my mind should be clear, I should be...OK.
I'm not OK.
I still feel toxic.
Despite my blood counts, I'm constantly exhausted.
I might have an hour a day of clearheadedness.
What does that mean?
Imagine you're sitting in a chair, and you're thirsty. You decide to stand up and get a drink. So, you stand.
Upon standing, you look about you. Everything seems different. "Oh, right, I'm standing."
"Why am I standing?"
You look at the mug in your hand.
"Right, I was going to do the dishes."
So you wash the mug and the spoon that was in the sink. Finished, satisfied with a job well done, you sit back down in the chair.
You look about you.
"I'm thirsty," you think...
My Legs Hurt
My oncologists are baffled. I have a Wheelsucker-specific side effect. My legs hurt.
And they occasionally fail me.
Like
I just fell over for no apparent reason fail me.
Specifically, the lower part of my quadriceps hurt, and the pain wraps around my knees on either side of the kneecap. There, it stops. Yes, I have bone pain from the neupogen, but that's different, and that's largely managed. No, this is something weird and wonderful and baffling that has my oncologist emailing all her oncology colleagues to tap into the collected wisdom of the oncologysphere.
Her concern: it may be/become permanent damage.
It starts on Day 2, after I get ifosomide. My post-ifo infusion is pure hydration, to help manage the kidney and bladder toxicities of the ifo. As the IV fluids flow into me, filling me with something blessedly non-toxic, my quads swell. Like a balloon. And, unlike most people, the swelling stays there. For everyone else, the fluid gifts people with fat ankles and feet. Nope, not me. I have to be different. I get it in my monster quads.
I'm absolutely certain that years of riding bikes have made my quads efficient and vascular. I'm also certain that this pain is somehow related to that.
The doctors? Not so much. They simply don't know.
Not that the reason matters a lot. It's the pain that matters. And the muscle failure.
Oh, and the pain sucks.
On any given day I am managing more, exciting forms of pain than I ever expected to have to deal with at one time. I have had hours during which headaches and tinnitus, bone pain, quad pain, and the discomfort of bed have all sung in a chorus of agony.
Yesterday was one of those days.
It's my reality. My body is...
My Body
I had one of those moments yesterday.
I opened the shower curtain and inadvertently saw myself in the mirror.
It sacred me.
I don't know that guy.
I'm bald, bloated, and scarred. The implants make me cringe.
At first, I avoided eye contact. But I forced it. I made myself look.
And as I looked into my own eyes, I didn't like what I saw. I don't like what I see.
I'm haunted, I'm scared, I'm angry, I'm hurt, I'm...
...weak.
Imagine that you can get on a bicycle and ride—far. Imagine riding 180 miles in two days to raise money for to fight cancer. Now imagine doing it on a bike with one gear. And that's your "normal." you're not the fastest, you're not the strongest, but you're capable. It's obvious.
That was me in August.
This morning I tried to walk up the stairs.
I managed seven stairs.
Then my legs started to wobble.
I was done. Were it not for the bannister, I would have fallen. But I knew that.
You see, yesterday, I could only manage five stairs.
Today I did a little better. But it was all in the head. My legs? They were done at five, or maybe six.
I don't know this body.
What I do know scares me
I'm Hurt
Something happened during my first chemo cycle that hurt me deeply. I'm dealing with a lot, and the thing that happened cut me. It was a kind of betrayal, a kind of abuse, a kind of a lot of things that would drive a healthy person mad. Not angry. Mad. Like a Dickens character.
But I'm not healthy.
Hell, I've barely hung on to my senses, let alone any reality, let alone my sensibility. So, when it comes to managing heavy emotions, I'm lost.
Have you ever cried without weeping? Have you ever felt something so deeply that the tears ran on their own, to release the pressure within you? Without shuddering or breathing differently or even realizing what was happening to you?
You simply...flow.
I've flowed a lot recently.
At odd moments, with little provocation, I flow.
It surprises me at first. Then I recognize it. Some hurts are too deep to feel—to let yourself feel. It's too dangerous,
I'm hurt. And it's not going away any time soon.
I'm Lonely
Cue violins...
I've shared this before.
I love my home. I love my life.
But I'm lonely.
My bed is cold.
I have no one to hold, and there's no one to hold me.
I know why.
It won't be permanent.
And I'm not rushing into anything.
But those last three sentences mean nothing to me right now.
I'm dealing with a lot—dealing with far more on far more levels than I know or understand—and I'm dealing with it alone.
Friends, please don't read that wrong. Your support has been invaluable. I deeply appreciate everything that you have done, are doing, and will do for me. I honor you; I respect you. This isn't about that.
This is about the loneliness of a single man—a middle-aged man divorcing, fighting cancer, surviving.
It's about fear.
It's about the loss of love and the search for love and the need for love and the emptiness inside.
It's weakened me.
It will make me stronger. It will make me better, more resiliant.
But I don't care about that right now.
I need what I need.
And it's not here.
...end violins
Doubt Redux
In the past six weeks I've been places I never wanted to go. I've experienced things I never wanted to experience.
What if it was all for naught?
It's a question I'm facing right now.
You see, my doctor has some concerns.
I'm going through hell. I have some side effects that may be permanent.
And we're not sure that the chemo is working.
Let that sink in for a moment...
I need another scan. I'm getting it today. I should have some results Friday.
Will I have Cycle 3? Maybe.
Is major surgery around the corner? Probably.
Is there any answer to the issues I'm having with my legs? Dunno.
I'm back in limbo, once again. Hopes and fears collide.
Yep, it was a bad day.
Facebook Post
I'm surrounded by negativity, and i have no buffer/reservoir. I'm worn out. I'm tired. I'm on the border of being depressed. It's not pleasant. I'm struggling through. One more thing and i'll be in a puddle of tears.
Part of me:
I've got this.
Another part of me:
Nope. Don't got that.
Still, another part of me:
One. Step. At. A. Time. So many support me in so many ways. Don't let them down. I can do this.
