What’s the matter now? (And a poem: The Family Tree)

Insertion of the tubing for the paracentesis

I’ve been unwell this week – my cancer continues bouncing around my body. It wreaks havoc amongst the cells: everywhere and sometimes nowhere. The term no evidence of active disease and no evidence of disease simply means there aren’t yet sensitive enough tools at the radiology and oncology and laboratory units to locate it.

But it gives us hope, even just for a little while. Maybe that’s where those terms come from – giving hope and saying we don’t know at the same time.

I swing from feeling great to being unwell. I had 5.5 liters of fluid drained from my abdomen on Wednesday, June 23rd two days after my 56th birthday. June 21st, the summer solstice.

The Ultrasound

Water, water, every where,
And all the boards did shrink;
Water, water, every where,
Nor any drop to drink.

Why so much fluid? Well, during radiation treatments in December several lymph nodes in my peritoneum were left dead. The lymphatic system is so delicate. Our lymph usually drains out through our kidneys and subsequently our urine. But my pipes are destroyed and the lymph has only my stomach to collect it. I have it drained every three months or so.

Unfortunately I’d lost so much weight due to the current cancer therapy I am on, I didn’t really see that it had built up so much. I’m returning to Stanford for my care as of July 1st. My oncologists there are four years into this survival game with me. They handle my case as it should be. But UC Davis has done a poor job of having qualified health care professionals continue to monitor and manage my physical and psychosocial health. Time to go Back to the place that when I send an email message within 10 minutes I have a call not an email from a qualified nurse practitioner who works directly with me and my oncologist. 10 minutes not two or three days and then makes all the difference in the world when you’re fighting for your life and I don’t usually use the word fight or battle pertaining to metastatic breast cancer. But in this case in a a big way I’m
fighting for my life when we have to fight for healthcare and get lesser care because I’m on Medicare and not private insurance.

The suction machine look closely at the yellow lymph in the lower right corner

That’s a fight I don’t want to continue. I’d rather live with my cancer then die from it.

The Family Tree
The longer branches grow
The weaker they become
Pulling away, looking for brighter sun.
Yet branches, open to the elements
Growing away from the strength of the trunk
Packed with the rings of life the years
Marked in gold, married to the roots
That extend deeper into the earth
As the tree grows higher into the air.
Away from the ground below
As if to say, ha, I can escape my
Roots – I can run away from where
I find my next meal.
Some branches snap – dry as bones
And shatter as some bones will.
Bent under the weight of their own longing
A bird landing in just the wrong joint
Will send it tumbling to the ground
Along with all of its acorns.
Some acorns fall far from the tree
While others fall so close, there’s
No difference between them and dirt.
The deer and the sheep
those dangers to the
Spread of the family tree
Eat them and pass them from
Stomach to stomach.

Once in a while sheep come to
Find our greener pastures
But they never did learn this lesson
To remember the grass under their own
Even toes equals theirs at home. The wolves know this
Preying on those that stray.
Their violence won’t discriminate.
No coyote cares if they dine on
The ewes and the in tact rams or
The castrate whether and the lambs.
But the broken branch
Wishes for home
as it withers in the grass
Unable to reattach to the bark
Though it cries in the night.
Looking for its children
It’s acorns but unable to move
Did you know sheep can see behind themselves
Before they’ve even turned around
While the trees can see all 360 degrees.
But the devastation to its roots
As the droughts come
and the rains fail to dampen
The dust, so like all families
The fatalities add up like
Rain in the ocean
Not to be counted again
There’s no worse words
As the words left unspoken

4 comments on “What’s the matter now? (And a poem: The Family Tree)”

  1. Ilene,

    How does one respond to this profoundly troubling post? I can only say that I’m sending you my most positive healing thoughts and admiration for the way you maneuver through this painful “journey” with your creativity and poetic eye so powerfully present.

    Sending virtual hugs,

    1. Annie my words, my poetry, my friends…help me through this thing. When I get comments like yours, at least I know that my writing is not echoing in the winds of the ether. It’s a crowded space out there. I was just having a conversation with a friend of mine who runs the phone help line for SHARE.org She was diagnosed triple positive in 2014 and I was diagnosed HR positive in 2015. I’m not sure if the whole unicorn/ exceptional responder I something I want to be included in sometimes, It’s not so much I wish to die – that’s definitely not the case – bu the side effects get so bloody exhausting its all I cddd do not to implode sometimes but write. Without my words, I don’t think I’d have made it successfully through this life to date. And you have so much talent in to so many areas of the craft that a compliment from you is truly special. Thank you.
      peace, peace…as one of my mentors says.

  2. I am as always thankful for my own resilience for without it and the light of hope to guide me I know I’d forever be lost. I’m so lucky to have tumbled into a writing circle that I find sanctuary in – a safe place to write and to read. I find my heart has healed faster than it could ever have for it’s with my words I can tell the stories of this cancer without feeling like it’s braggadocio but an expression of the heart. Every procedure is a pilgrimage just as is every poem. I land somewhere new each time something is removed or words gush out – poetry is the pilgrimage of the soul. And Aram Cara, may we meet on pilgrimage soon, soon.

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