For Now We Wait

The past few weeks have been some of the most challenging this year. My insurance does not cover any of the "wonderful" doctors I was seeing before.

For now, we anxiously wait on my Social Security so I can have my doctors back again. But, unfortunately that waiting means that the cancer is progressing. Increased fatigue, pain, nausea, shortness of breath, and weakness are my companions right now. I try and manage these side effects on my own, and I still have Dr. Roque, but she is nearly impossible to get a hold of. Also, at this point, an increased cancer load is part of the problem. The only thing that will truly work is to find a systemic therapy that actually works without causing problems for my IPF, and let it do its thing...but again....for now we wait.

The balance between quality of life and quantity of life is it instantly becomes the metric after the diagnosis of incurable cancer. Everything is filtered through this lens.

I think the one word that most defines metastatic lung cancer is "uncertainty." You have to figure out how to live with it. My coping mechanisms are writing about it and researching it as much as I can. I only hope these will serve me well.

I know I shouldn’t always attach explanations on posts like this but today I feel the need to. Whenever I post a dark piece I get many messages of concern (and criticism) from people. Sometimes they say “Lighten up.” Most often readers are worried. I want to say that these pieces capture only a fraction of the spectrum of feelings I have.

My days are not spent wallowing in sadness. When I need to rise to the occasion I do. It’s often easier for me to write about the world of the dark places though… in some ways I think those are the ones that need light the most. These words are often the ones which go unwritten and unexplored.

I always find joy in the small moments each and every day. I find beauty in all of the pictures in my room, the sight of the leaves on my tree, the sound of the wind, and the loyalty of my beautiful dog.

There is shimmer in each and every day. Some days we just have to look hard for it, dig deep. And some days there is just a darkness overhead. I find that giving a voice to the those depths, shedding light on them, is important. There are many who live in this land. Today’s post comes from the feeling of doom that accompanies test results, that awful waiting period.

I can’t do anything more to change what’s happening inside. I have a plan and I just need the days to go by to get started. My quality of life is suffering at the moment but I hope that this will change. It is a roller coaster, one I have been strapped inside unwillingly. Some days are good, some days are not. These happen to be some of the icky ones, but as always, I press onward.

There comes a moment in many conversations,
I can see it:
They reach their limit.

Ten minutes in, or maybe only five,
They start to drift off,
Squirm,
Just want to be done with it.

Sometimes they even say,
“Let’s talk about something else” or

“Let’s change the subject”
Every so often they go as far as to say, “This is depressing.”

Being done with it is something I would love to do.
I’d love to tell the inner me to forget about it.
But that’s not possible.

It’s not mind over matter when that matter is making you sick, as are the treatments you need to fight it.
Metastatic cancer is background music, but it is a cacophonous roar.

I put it in its place,
But it has a place.
And the fact that it even has a place,
Well, that is just the way it is.
I try to keep its place as small as possible.
For as long as I can.
But I don’t have the luxury of changing the subject or forgetting about it for a while.

Like a greedy child metastatic cancer demands attention.
I tell it to wait,
Give me a bit of a break.

First I demand it.
Then, worried, I ask again contritely.
Then I downright beg.
Please, just give me some more time.

But I don’t believe there is anyone who hears me.
I don’t believe there is a god listening,
And I don’t believe cancer gives a damn about it all.

And so the plea evaporates as quickly as it came,
The tree in the forest with no one to hear.
I can only do my research, try to make the best decisions.

But in the end,
These cells will do what they will,
As they have,
Without respectful regard to all of my attempts to banish them.
That’s not how it works:
You can’t wish them away,
Hope them away,
Love and light them away.

Cellular biology is King.
But paired to that fateful ruler
I shall be an argumentative, rebellious Queen.
Wring the most out of each day.
Find those bits of joy and beauty,
Make sure that what I’m doing isn’t waiting around to die.
For truly, that would be a waste.

And in those conversations now I am grateful there can be other subjects to move on to,
Share the lives of my friends and support them,
Even if I am simultaneously pretending I can’t hear the roar.

The greedy child still tugs at my hem,
Will not be denied.

I needn’t let that noise drown us out,
And it won’t silence me just yet.

It takes a leap of faith every day.

Not one of religion– no that’s not in my play book.
But there is a leap that comes when you think to yourself each night,
“The world will be here tomorrow, and I in it.”
Statistically it is likely to be so.

But what about the day after, and the day after that?

How many days do you think ahead?
Have you bought plane tickets for next year?
Planted bulbs for Spring?
Bought an extended warranty on the washing machine?

Just being alive is not always enough.

I don’t buy those tickets,
But I do still think the thoughts.
I don’t make promises because I don’t want to cancel.
I say, “Let’s play it by ear,”
“Let’s see how it goes,”
Because to plan, to get hopes up,
To think it could come true…
And then to have them dashed
Would be too hard for me.
I know not everyone shares this view.
I’m not about to let myself go.
I’m not about to stop wearing makeup or dressing nicely or styling my hair each day.
I’m not about to relax my standards or let my children get away with things they shouldn’t.
I’m not about to stop being a friend, a daughter, a mother.

I’m not about to stop having dreams.
I’m not about to stop learning, growing.
I’m not about to stop sharing.

I can’t just give up.
I can’t stop moving.
I can’t change who I am.

I know some of these things will change.
I know someday soon I won’t have choices about what I do each day.
I know there will be a day I won’t have hair to style again.

I push myself too hard each day.
I feel I am in a race against a clock.
I must pack as much into each day as I can.

I am in constant motion,
Like a summer child waving her arms to keep the mosquitoes away…
I dance and thrash and run away,
Looking for a place to escape injury where there is none.

I can’t control so many things about having metastatic cancer.
This feeling is one of the hardest things about this disease.
But those things I still can?
I’m holding on tightly onto those,
And I’m not about to let go now.

Love you all and truly mean it....and God loves you too,

Shanna xoxo