Even when I am alone

IMG_7108Even when I am alone
I teeter precariously over the right hand side of the bed.
On my left shoulder when I can,
When the pain is bearable,
When I can settle in for the night.

I still approach the precipice
Rather than opt for the safety of the middle place.
I act as if he is there with me
Taking space
And I, trying to make room,
Move to outer orbit,
As if that extra inch or two would matter.

Even on the occasions I am alone
I pretend as if I am not.

I go to places in my mind,
Wondering what it will be like
When that opposite side of the bed is empty
For him
And he teeters precariously near the edge unnecessarily,
Without me there to take up space.

No room for that in this (Six minutes)

IMG_5541I find myself in silence a lot,
Tuning out the noise.
No room for anything but thoughts.

I try to forget for a few minutes,
I stare at a spot on the wall.
I lose myself.
No clue how long it has been.

The clock says it’s been six minutes,
I am glad that they’ve gone by.
But then I realize I have wasted them:
Six minutes of my life.

I want them back,
Feel I should use them for something better,
Something constructive.

I am mad at myself:
That was a waste of time.
I want days of suffering to pass,
But I also know that this is the only time I have.

I take a trip inside my head
I don’t know where I go.
Somewhere else,
Anywhere else,
Far away from here.

If you’d let me, I would run away,
I would go find a way
To keep you safe from this,
Safely far from this.

Some days I long to tell you how I truly feel,
But there’s no room for that in this,
No room for that in this.

It is not a choice.
That I know.
And when I finally do go
It won’t be for lack of want, or heart, or strength.

When I die it will be because that is what cancer is,
This is what cancer does.

And when it comes to being fair,
There is no room for that in this,
No room for that in this.

 

 

 

Expiration date

Image 9It is easy to be happy when you are healthy.
It is harder to know that this may not be true much longer.

People love to casually say,
“Enjoy every moment” or
“We all die some day anyway” or
“Life is fleeting.”

I know this already.

And I know it in a different way.

I don’t need to be told to
fight the good fight to beat it
or the key is to just stay strong
or that it’s mind over matter
or that I should pray for a miracle
or that I will be cured.
That’s nonsense.
Scientifically impossible in my case.

And so, when you say,
“No, that can’t be true.
There must be something that will cure you,
If you want it/pray for it/think it will be so,
You can be healed,”
What you do is force me to assert my knowledge,
Insist upon my diagnosis,
Explain the desperate nature of my disease,
Spend my time defending my sentence.

I know it’s what you wish.
I know you insist because you want it to be the case.
I know you’re grasping at straws,
Wanting to reassure yourself that bad things won’t happen to you,
That bad things don’t happen to good people,
That something awful won’t happen to me.

Trust me, I wish for it too.
But these things do happen.
It has happened to me.

The truth is that wishes don’t count for anything when you’re placing them against cell biology.

I know many healthy people who say the passage of time is bittersweet.
It isn’t a competition but I can tell you that this passage of time is different.
If you could feel it for just a moment you would know.

There is a difference between
Distant,
Hypothetical,
Potential,
Maybe…
and reality.

I have learned that being nervous about test results,
Worrying,
Wondering,
are not the same as the reality.
Reality is having your oncologist walk in the room
and when you say to him, “How are you?”
and he says, “Not good,”
you naïvely think it must be a problem with him,
or his family and
instead he ducks his head,
takes a breath,
looks at you, and says,
“Your test results were not good.
Your tumor markers are up.”
He knows I know what this means.
He waits for a moment and says,
“I think you have a metastasis.”

A few minutes later he says,
“You need to go get a chest x-ray right now.
Go across the street,
I will come over to the hospital and look at it immediately.
Wait for me there.
Then you need to schedule a PET scan as soon as possible.
Have you had any other unusual pain?
A cough perhaps?”

The room spins, the world stops.
My life didn’t end in that moment, but life as I knew it ended for sure.

No turning back.
Reeling, processing, shock.

All you can do is let your jaw drop,
the tears fall,
your body shake,
crumple.

Slowly,
deliberately,
as I looked at him
in a way that I never had in the six years he had been my doctor,
the only words that came to my lips in response
were to repeat over
and
over
and
over
and
over
again:
“Fuck. Fuck. Fuck. Fuck.”

Because that’s the only word that could capture how angry
and scared
and angry
and surprised
and angry
and shocked
and angry
I was.

I never have liked the term “to expire” rather than “to die.”
I started thinking about these words though.

We all have an expiration date.

I’ve never thought of it like that before.

We all have one.

It is as if I’ve grabbed a carton of milk without looking.
I took the one in front I guess,
The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention.
Except I did pay attention.
I did.
I was always paying attention.
No one was more vigilant than I.

I want to put this carton back,
I want to say it’s not mine.
I want to scream it.
This must be for someone else.
The date is too soon but I can’t trade it in for a new one.
No givebacks.

 

The problem is
I don’t know exactly what the date says.

The land of topsy-turvy

Metastatic cancer is an introduction to topsy-turvy world.

Things I once counted down to now I must cheer.

The first time I was diagnosed with breast cancer (stage 2, in December of 2006), I counted my chemo treatments down. “Only  2 more adriamycin/cytoxans to go,” I might say, or “Only 4 Taxols left.”

Now I’m forced to be glad for the chemo rounds.

I started my 12th round of chemo yesterday, on Sunday the 17th. After being sick with a bad cold and stomach virus this week I’m feeling not-quite-ready to start again. I haven’t had enough time to rebound and my side effects are not as reduced as they traditionally have been. My feet and especially my hands are not in great shape and I’m limited as to things I can do. For a few days I had trouble walking. Some days I can’t hold a coffee mug. Most days buttoning and unbuttoning are a lengthy challenge. Typing is sometimes painful as well.

Whereas before I could look forward to the time when chemo would be over, now I must be happy for each round. I must realize that it means another week alive, another week the drugs are working.

Another week to be a wife, mother, friend, daughter.
Another week to write, another week to love.
Another week to hope there is a new treatment brewing.

My milestones used to be measured in how much time I had invested to get through to the other side: putting cancer in the back seat. The goal was successfully completing surgeries and chemo so cancer would be more like background noise rather than an attention-greedy headliner in the spotlight.

But now all of that is backwards. I don’t count down until my treatments are over because they are going to be here for the rest of my life. That’s a hard one to accept some days. There is no “when I’m done with treatment.” Not taking chemo would mean I’ve run out of options or the treatment is worse than the disease. There is no after. There is no “looking forward to being done.” Being done now only means death to me.

This is the way it is.
Everything is upside down.
And that’s how life has felt every day since I was diagnosed with Stage 4 breast cancer.

If you let me

cropped-IMG_02201.jpgOnce or twice a week I awaken in the middle of the night with a poem in my head. I reach for my phone and I type frantically. I go back in the morning, or after a few days, and read what I’ve written. I know the words are important, streaming from my head like water breaking through a dam. This poem came from one of these middle-of-the-night sessions.

 

If you let me

If you let me
I’ll cry you a river
Scream at the moon
Hold your hand
Kiss your mouth
Feel your heartbeat
Dream of more
Fear the end
Wish it were different
Pound my fists
Swear a blue streak.

If you let me
I’ll give you strength
Find a reason
Deliver some hope
Take a needle
Feel the pain.

If you let me
I’ll be grateful
Feign bravery
Take a stand
Do my best.

In the end
I’ll whimper softly
Try again
Give a last kiss
Take a last breath
Slip away.