Living with Uncertainty

Hello dear family and friends,

Life's events are, at times, truly beyond words.  Do you have your seat belts fastened? This rocky boat I'm in called "My Life" is pitching and heaving all over the place!  Even with my own seat belt securely fastened I can barely hold on sometimes.  I hit a big "swell" yesterday in Dr. Chuang's office when he said the tumors (one on each kidney) have "the look of cancer".  75% of tumors in the kidneys are cancerous apparently.  Somehow I got lured into thinking this new episode was going to be no big deal, cancerous or benign.  Looking back now, I think I just couldn't fully accept yet another "heavy" setback.  This was partly based on a number of comments various people, including doctors, had said.  But Dr. Chuang is the expert and the surgeon at Kaiser who would remove them.  Needless to say, the schedule for a Bone Marrow Transplant is once again up in the air.  Uncertainty, Uncertainty, Uncertainty.

"Delicious Ambiguity".  I wanted a perfect ending or at least some hope of an ending to this long incredibly bumpy journey.  I'm learning -- the very hard way! --  that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. My ego cries out "This is unfair!  I've had enough!  How 'bout a little peace and still waters for a change?"  I imagine waking up to a day of playfulness and good feelings and I realize again that I am the one to create those feelings, despite what is happening externally.

My dear friend and mentor, Kathleen Singh, told me last week to stay in the moment by focusing on just one thing...it could be a pleasant sensation in the body, a bird chirping outside, the feeling of a cool breeze on a hot summer day, and to be cautious about "conceptualizing." What this simply means is that once I step out of THIS moment and begin to ponder my life, conceptualizing will usually take me to my "story" of the day and thus feelings of discouragement, despair, pain, depression.  Sometimes those feelings are so very powerful they whisk me off my feet before I know what's hit me and then I'm "down the rabbit hole", utterly engulfed in emotion.  Yes, sometimes it's good to let those emotions just "be", without judgment.  It's a fine line, a delicate balancing act between repression and acceptance.

The surgery for one of the tumors -- the largest -- is set for a week from this Friday, June 27.  After I've healed from that surgery, they will take the next tumor out.  Hopefully I'll be back on track for the bone marrow transplant by August or Sept.  That will be a full year since I first started the BMT trek.  A year of mysterious setbacks.

Setbacks are odd things.
They may be masquerading
as delays, but behind their
tricky grins or grimaces
They actually set me forward'
in some strange ways
I do not comprehend as yet fully.

Thank you for your love, support and ongoing prayers!

Heidi

Cliff's Edge

Dear Friends and Family,

This update is not going to be easy to write, and even perhaps difficult to read because of recently learning about several masses in both kidneys. While I feel incredibly weary, there is, underneath all the buzzing thoughts of worry, a little hum of acceptance that is there too on this wild, crazy-making journey. Hearing this news just two days ago certainly beyond anything I could have imagined. I never thought I would get to this point. Yet here I sit on the edge of another cliff ... A biopsy is scheduled for next week yet it appears to be cancer based on the 3 cold energy treatments I've had since Thursday.

Interesting that kidneys hold the energy of fear, so I've been told. I have not felt fear recently, at least on a conscious level, but rather have been hopeful in a new beginning. But fear as I write this, I am aware of fear...fear of more pain, more procedures, and a painful death.

I finally found a foothold on this rug of life after almost 4 years of unbelievable ups and downs... and, as what has often happened in this journey, a new challenge comes from out of the blue. It's hard not to feel angry at life....

When faced with yet another “potential” setback and with the possibility of no bone marrow transplant after all this time (and being so close), I am strangely quiet inside. Is this God's way of forcing my tenacious grip on outcome? “Let go, My child” He whispers, though it feels like a shout. “Let go of what is not permanent.” Another rug gets pulled out from under me. Disbelief, disappointment, discouragement swirl around and within me with their sharp claws tearing at my hopes and yes, expectations. Tears flow. “I've come so far and was so ready for the transplant” my prayer/cry trembles on this gentle Sunday morning. “Is there Anyone listening?” I am humbled by the silence as I sit yet again among circumstances I cannot control. There is simply nothing, NOTHING, I can do, think or feel but just BE here, right now, in an empty space that gives me no assurance, no answers.

But there IS prayer (from the Psalms):

In my distress I call to You,

That You may come quickly

To comfort me.

Be strong in me that I might

Face the darkness

The despair that rises up

From the depths

Bless my tears that flow, O Healer,

Like a stream running to meet

The Living Waters of your Love

I yearn to live in peace,

Strengthen me as I face whatever comes...

And the Beloved responds:

“Trust in Love at all times

Pour out your heart to the Beloved

Let Silence be a Refuge for you....”

Love to you all, Heidi