The Journey

Above the mountains
the geese turn into
the light again Painting their
black silhouettes
on an open sky.

Sometimes everything
has to be
inscribed across
the heavens

so you can find
the one line
already written
inside you.

Sometimes it takes
a great sky
to find that

small, bright
and indescribable
wedge of freedom
in your own heart.

Sometimes with
the bones of the black
sticks left when the fire
has gone out

someone has written
something new
in the ashes of your life.

You are not leaving
you are arriving.

~ David Whyte ~
(House of Belonging)

Thank you to my daughter E for blessing me with those words in celebration and honor of my sweetheart’s and my 30th wedding anniversary. We are just arriving.

I should post today.

Because it is a good day.

With a blog dedicated to the path you’re walking with cancer-
it becomes normal to write on

the scary
the confusing
the lonely
the disappointments

But there is more to life than those days.
There is more to my life than cancer.
There is more to my life.

Walking this bridge beyond beliefs – and into just today has been a significant challenge for me.

The dragon I have sleeping is sometimes all I see. The dragon’s breath feels hot on my back. The dragon’s presence is palatable. Yet….

He sleeps.

And for that, I am grateful.

And when I turn my eyes in other directions I see there is more to life than a sleeping dragon.

So today, I am happy simply to turn my eyes another direction.

“Chasing Cars”
Snow Patrol

We’ll do it all
Everything
On our own

We don’t need
Anything
Or anyone

If I lay here
If I just lay here
Would you lie with me
and just forget the world?

I don’t quite know
How to say
How I feel

Those three words
Are said too much
They’re not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life

Let’s waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we’re told
Before we get too old
Show me a garden that’s bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they’re all I can see

I don’t know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Would you lie with me and just forget the world?

The Tale of the Dragon

Since October 13 – I have been trying to process my diagnosis: Chronic Lymphocytic Leukemia.

And perhaps even more challenging – to process my treatment: Watch and Wait

(Really? That is the official, best option treatment?)

Without freaking out. Without over-reacting. Without burying my head in the sand yet…Without fear and dread and gloom.

To seek understanding. To live with peace. To learn. To trust. To feel hope. To learn the language of the land I now live in without speaking it much.

To carry a secret inside and be relieved and happy that I can carry this as a secret because my best, most promising future depends on this condition staying quiet. If it isn’t quiet, it will only mean the secret is yelling out loud and demanding attention and treatments and actions that cascade into a whole flood of more of that.

Many with this disease (condition? cancer? I haven’t gotten used to saying any of those) call CLL a “dragon”. I don’t like that. I don’t know why. But here’s the thing-

When I think about it…
CLL is a dragon we hope will stay quiet.
The stories do line up.

Here is The Tale of the Dragon

A Single Tale told by Two D‘s
(The Doctor and The Dragon Dealer)

Doctor:

“You have Chronic Lymphocytic Leukemia”

The Dragon Dealer:

“Here is a dragon for you.”
“He is sleeping.”

“It is incurable”

“You must keep this dragon with you for the rest of your life.”
“You can never get rid of him.”

“Yes, it is terminal, but there is a good chance
you won’t die from this….”

“Yes, the dragon has killed many people
“The dragon is mean, he breathes fire and eats many people…
But I don’t think he’ll eat you… because he is sleeping.”

“Our tests show you don’t have the
aggressive type of this cancer”

“Your dragon is lazy – he’ll probably stay asleep in his cave mostly
and stay away from you.”

“CLL is incurable.”
(oh yeah, he said that already)

“But it is the good cancer”
(huh???)

“Here is a pamphlet to read more about this
incurable good cancer you have.”

“Here is a pamphlet to learn more about
your people-eating, fire-breathing dragon.“

“jumksltky tkeigy’ly gookennlw….
kekthoignlsllk otis…. pelyemmcytic… Niflek
kejhtinglsyistic ketneklsktyiiclllsyotic ektjeknkgktycmpytic
kekktneylciitsll ktjeiiig’slly. Notke,lwyysl tiengkslyis-leytic.”
(that is truly what I heard next from the doctor oncologist)

Your dragon speaks a foreign language.
You must learn the language
if you want to have any hope of knowing how
to treat him or how to settle him should he ever wake up.
Google it.

We’ll keep a watch on your incurable good cancer-
because sometimes these good ones turn into really nasty ones, we don’t really know why..
But we’ll keep a close watch to see if yours starts to look like
it may be getting mean and if it does, then we’ll …do something (?)

(then we’ll what? chemo? bm transplant?
not really sure because we just have to respond to CLL as it presents,
in real-time, not the “plan ahead too much” time)

Keep a close watch on the lazy dragon.
You want him to sleep all the time.
Try not to wake him up (because then he gets mean!!)

These dragons are very tricky.
You never know what your dragon might do when he wakes up…
So you’ll just need to get to know your dragon personally.
Without waking him up of course.
Try to figure out what he’ll want to eat,
what keeps him happy and peaceful
and hopefully…

“But there is nothing for you to worry about in the meantime.”

In the meantime, go ahead and live and love and play joyfully….
don’t think about that sleeping humongous dragon asleep by your feet.
He probably won’t wake up.
(shhhh…..)

The treatment plan we have for you and this cancer is called:

WATCH AND WAIT

(watch and huh??)

While your dragon sleeps, don’t build a fence.
Don’t bring in a dragon slayer.
No weapons or tranquilizers or cages.
All of those things, if done too early
will only stir the dragon from his sleep
and force you to meet him prematurely.
Let him sleep.
When he wakes up, we’ll deal with him then.

WATCH the DRAGON. WAIT.
WATCH & WAIT
It’s your best option.

the end.
(of The Tale of the Dragon story)

and that is what I’m doing.
it’s my best option.

And I’m grateful the dragon is asleep.

I always thought there were answers.
And I always thought the answers could be found if one were persistent enough in their doing.

Puzzles were made to be solved. And if you played with the pieces patiently enough, you would begin to see the patterns. Soon one piece would slide into another and another and another…. and the edges would connect with corners until before you knew it… you no longer had 1000 separate jig-saw cardboard cutouts – but a picture with meaning.

Problems had solutions. Pieces fit together. Pixels became pictures.
And all it took to find these solutions was a commitment to keep doing.

One of the most challenging aspects of the path I am on is the paradox that my best course of action is perhaps not an action at all.

Watch and wait.

Because doing is not always all it’s cracked up to be.

Rejuvenate…

Breathe new life into.

Invigorate.

Heal.

Make whole.

Pick any 2.

Waiting For My Real Life To Begin

By Colin Hay

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll stand on the bow
And feel the waves come crashing
Come crashing down, down, down on me

And you said,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

When I awoke today suddenly nothing happened
But in my dreams I slew the dragon
And down this beaten path
And up this cobbled lane
I’m walking in my own footsteps once again

And you say,”Just be here now
Forget about the past
Your mask is wearing thin”
Let me throw one more dice
I know that I can win
I’m waiting for my real life to begin

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll check my machine
There’s sure to be that call
It’s gonna happen soon, soon, oh so very soon
It’s just that times are lean

And you say,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

Hey…

On a clear day
I can see, see for a long way

On a clear day
I can see, see a very long way

My last visit with the Oncologist was what he called “a good report”.

By all measurements.

This is good…

The lymphocytes haven’t doubled. They have progressed, but not at a pace to double in that critical 12 month time.

He doesn’t feel any lymph nodes.

That’s it.
Defined by the number of cancerous lymphocytes and not too swollen lymph nodes – things are

good.

But I walked out of his office and didn’t feel so good.

The numbers ~ good
The lymph nodes ~ good

Me -

not so good.

Lately the tears have come more freely. Sometimes even feels maybe too freely.

But in a space where my words are clogged and my body is tight and my mind is cluttered….

free-flowing tears are somewhat of a relief.

Maybe like a river that flows after a heavy rain, the tears are washing away the debris and, like the flooded river, there will come a time when the storm calms and the raging river settles back to clear, refreshing water.

I miss the clarity of my thoughts and words.

I’ve gone missing.

Missing in the most obvious – it’s obvious – there are no writings.

But that is just a reflection of the most obvious of all – I’ve gone missing from me.

I’ve been searching and seeking and cross my fingers hoping I find me.

Then I read something from Madeleine L’Engle~

The decisive period is that in which my husband and I are now, the period of our middle years, when we have passed through childhood with its dependency on our parents; when we’ve weathered the storms of adolescence and the first probings into the ultimate questions; when we’ve gone through early adulthood with its problems of career and marriage and bringing up our babies; and for the first time in our lives find ourselves alone before the crucial problem of who, after all these years, we are.

All the protective covering of the first three stages is gone, and we are suddenly alone with ourselves and have to look directly at the great and unique problem of the meaning of our own particular existence in this particular universe.

So perhaps I have found me – right here in the decisive period.