Dear Heidi Has Passed Away

This past weekend on Saturday night October 11, 2014 shortly after 7:30 our dear Heidi died at City of Hope Hospital from severe infections related to the leukemia she battled for four years.


Heidi was with her aunt Jean(her mother's sister), her brothers Greg and Kevin, her cousin Jory, and myself. The ICU staff were kind, skillful and very respectful of her needs and ours' through this difficult time.


Words fail me now. I have been unable to write this post until this morning. I miss her terribly. Heidi and I were each other's anam caras. We were true soul friends and soul partners.


She is no longer suffering and for that we are so grateful. As you all know, she was the consummate warrior in her refusal to give up in her fight against this horrible disease and in her fight for her life. My respect for her is infinite.


And I am, and will be forever, grateful for having shared these past five and one-half years of love and laughter and art-making and poetry and time with wonderful friends and family and meditations and tv show watching snuggled on our couch and trips and travails with Heidi Holliday Hall.


We will gather at some point in the future to honor Heidi and to join in our love for her.


in deep sorrow,
Peter

Hi folks,

What a time it's been -- with colossal world events rumbling around us. So much continuing uncertainty.    In my own much smaller rumbling world,  I find myself a little more still within (practice makes perfect????)  These days the uncertainty shows up in the form of a clinical trial that has not yet been tested on humans; only monkeys and mice.Will I wake up in a jungle swaying from the trees, eating a banana?  Or howling to my monkey mate or looking for little "critters" in his fur? (I startled my nurse yesterday by making monkey noises, quite realistically I might say. She actually jumped, chuckling of course!

About the clinical trial I'm on, I found out that this one is "the slow boat to China."  In other words, I shouldn't expect quick changes that happen with straight chemo therapy -- the "gunslinger" approach to cancer. So I was pretty calm when I learned that the results aren't quantified in the same way I'm used to.  My blood is more clear of leukemia but my bone marrow hasn't changed that much.  In other words, I'm not in remission yet, but moving in that direction.  Once the blood is clear, it can work more in the bone marrow...something like that. To be honest, It was a little difficult for me to understand.

Anyway, this continues to be a full-on roller coaster ride with all the twists and turns and "tummy in your mouth" bumps and bounces. But I've been through plenty of these before and come through the other side...and I know I'll come through this one. But goodness!!!!  I say ENOUGH ALREADY, wouldn't you agree?  I admire all your stamina reading through these updates for such a long time!

In the long, big picture view I wouldn't trade the lessons I've learned and continue to learn.  They are hard won but they make the battle worth it. Most of my lessons have to do something with trust and letting go....biggies for us all.  As the saying goes, "simple but not easy." In the short run, I'd sure like a little patch in the sun to lay my noggin on for a while.

I have no expectations for anything familiar these days unless you call pain and uncertainty familiar; and I'm beginning to soften into the truth that this has always been a "wishful thought", allowing life to unfold itself, with me as an interested, caring and engaged witness. Of course, I hold the big wish in moments that I could return to the way things were before November 13. 2010, but I recognize this as just my wish for safety, comfort and certainty, not wrong or bad in itself but it keeps me from the full acceptance of "what is" in the now. 

 

Love to you all,

Heidi

A New Clinical Trial

Dear Family and friends,

“Everything in the universe is within you.

Ask all from yourself.”

~ Rumi

Yesterday's blues gave way to today's hues.

A slightly different palette of colors 

from which to choose

I stand before a powerful force and face

with head bowed toward this Mighty Grace

a key once lost has now been shown

it was placed just ahead on the earth's vast brown

A key of possibility, and of renewed hope found.

I became eligible for a new clinical trial today and, if my spinal fluid is still clear , I begin treatment this next Monday.  It's only a Phase 1 trial so little is known about the new drug. It is one of those anti-body monoclonal drugs that seek out and destroy the CD 19 positive proteins on the outside lining of some cancer cells.  Real science fiction this microscopic warfare!  So far, all my test results point to a "go ahead".  

More than at any other time these last several years I've had to face the real possibility that this may be getting closer to my time to exit.  As my Dad used to tell me, "No one gets out of here alive."  It is poignant, this "exit", no matter what the time of departure for each of us or the circumstances surrounding it.   As the old familiar, much-used, saying goes, "Live each day as is if were your last!"  Words like this, so easy to write, so difficult to live sometimes, nevertheless are potent reminders of our focus each day.  For me they bring up thoughts and feelings around how much more I would, God willing, still like to accomplish, to BE, as a spark of Love in this world.  But then I've always been too hard on myself.  As Peter has often reminded me "The glass is both half full AND half empty."  We are all a mixture of achievements and perhaps some broken dreams along the way.  The beauty for me has been in the learning -- those precious moments when I've been able to "transcend and include" the small self into a greater, Truer Self in each thought, word and deed. 

Well, if truth be told, there are plenty of times I feel some sadness in leaving this grand earthly stage.  And times, too, when I look forward to taking off this heavy bodysuit and blazing new creative trails in the etheric realms.  Meanwhile, it takes much courage to keep going, to endure new pains  and promises with equinimity!  And to always, always remember that in the end, only Love remains...

Feeling that love for all of you....   Heidi

PRAYERS NEEDED!

Hello my dear friends and family,

Am back in City of Hope.  Found out yesterday that the clinical trial I had hoped to get in is no longer available to me due to a mis-communication between COH and Pfizer.  The second possibility may still be open -- a new anti-body drug.  I will find out later today.  I need to start something SOON as my cancer cells in the bone marrow are growing fast -- up to 85% now, from 40% last week.  "Hanging in the dangle" like this really brings up alot to notice in oneself!  All there really is, is the practice of letting go into LOVE, so I call on that Love over and over again this morning....and try my best to remain at peace, regardless of the outcome.  

I'll just keep this short and sweet.  My pain is fairly well managed.  Am resting most of the day.   Your prayers and friendship are very much appreciated in this segment of my journey, wherever I am destined to go....

Love to you all,

Heidi
  

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

A NEW BEGINNING

May, 15, 2014

Howdy Folks!

”There is a light that shines beyond all things on earth, beyond the highest, the very highest heavens. This is the light that shines in your heart.”   Chandogya Upanishad

"Faith"  keeps echoing in my mind these days -- the belief (experience) of/in things unseen.  There is a Generosity and Goodness at the core of this Universe so unfathomably vast and great, yet often imperceptible.  Sometimes sorrow turns us to this Light.  I had my own taste of sorrow recently that was completely unexpected totally unrelated to Leukemia.  It burrowed inside, made tunnels through every corner.  Sometimes it would lie still until a thought would start it, like a match starts a fire in dry brush.  Poof!  and I was off down the rabbit hole.  Yet this and all the events in life, are deceptively perfect in their timing and intent.  These last few months have been difficult in many ways, which is part of the reason I didn't update my blog until now.  It took me awhile to find the words that would express my heart authentically, without burdening you all with yet another chapter in my human storyline.  I have come to a deeper understanding that this "Light" referred to in the above quote can only be known through experience and not reading, listening to talks, or discussing with good friends however edifying or inspiring they may be. But thank God they are there.  A sentence or two in the morning or at night before falling asleep has made a huge difference at times.  

  

I truly believe this experience coming at this time, along with being at a very special point in my Leukemia treatment is about the Love at the core of my being, and the little seed of faith that assures me all will be well. Leukemia has come as a relentless teacher to open doors and windows within.    As my close friends sometimes say to me, "You are a hard nut to crack, Heidi," and I humbly acknowledge they are right!  I have been blessed beyond measure through the last several years, yet sometimes a little crack of doubt will open... "I've received many blessings, but will they continue?"  Time and time again I've witnessed an overwhelming, inexplicable Grace enter and rearrange the jumble of circumstances in which I find myself.  It appears nothing short of miraculous!  Yet a few days later I might begin to question.  It's a wonderful practice to bring in more awareness of these thought patterns.

I was reading this morning how faith is one of the greatest lessons we come here on earth to learn -- faith that we are loved, despite any contrary experience, faith that we have "enough" to sustain us through life, faith that there is a Benevolence at the heart of Creation looking out for every detail of our lives.. We cry out for help in the foggy darkness that surrounds us. Our little ship of life hits the rocks we cannot see. Turn left? Right? Keep going straight? There is no one to steer our ship except an Unseen Force we trust is taking us where we need to go, must go, actually, in order to continue our journey of Becoming.   l don't always experience that shining light within the heart or trust that the light will guide and has been guiding my every step these last few years.  But the more I witness these amazing twists and turns taking place, more often in hindsight, I see that only a Loving Divine Hand could have brought me to where I am today. Too many so called “coincidences” have shaped the past 4 years, events that at the time seemed to be turning me in the opposite direction from where I needed/wanted to go.  But they didn't.  Though they didn't seem so at the time, they have brought me closer to a cure.

"It's been a long and winding road" getting to eligibility for the transplant.  It looks like I'm finally here, though I still have to redo those 13 medical tests I cleared last January.  I'm in Parsons Village at City of Hope again (3rd month in a row).  This lovely place is where they let people undergoing treatment stay who don't need to be hospitalized.  The various medical buildings I go to are right across the street. Two weeks down as of today, and two more to go.  Then I'm finished with the clinical trial, go back to Oceanside until June 16 when I enter the actual hospital the preparation for the Bone Marrow Transplant (another round of chemo, hair loss, etc. before the actual transplant on June 26.  I'm excited and anxious at the same time.  It is a huge procedure with big potential risks and a mortality rate of between 10-20%.  I'm going into it with the deep conviction that this is my next step and that it is a blessing to find myself here.  As Dr. Sahebi said to me, "Don't you want to get Leukemia behind you and live a normal life?"  A million times YES!  So, for me, it is worth the risk.


I found out last week that I am MRD negative.  MRD positive patients are much more likely to relapse.  I have wanted to find this information out since my diagnosis in 2010, but Kaiser doesn't test for MRD.  To go to another medical center that does (and very few do) would cost a fortune. I believe it was the blinatumomab that got me MRD negative.  You can look up the definition if you're inclined; it is quite technical.  Suffice it to say it was very good news for me and yet again a cause for celebration and gratitude!


Also, due to the last three months of treatment, I've been able to hold to my remission status in both the bone marrow and spinal fluid.  Was reading this morning that just 30 years ago -- early 1980's and before -- people with Leukemia were thought to be incurable and usually died within a few weeks or months at the most.  I'm lucky indeed!


I wanted to invite any of you interested to an Art Show/Fund Raiser I'm doing on Saturday evening, May 31st, at the Seaside Church in Encinitas.  There will be some fun music there that night and a wonderful "send off" for me for the transplant just a few weeks later.  There were 3 months of unexpected expenses incurred because of the clinical trial, so need to get back on the fund raising "train" again for the upcoming bone marrow transplant...

Here's to a new beginning, wherever we may be in Life.  In the words of the poet John O'Donohue:

"Though your destination is not yet clear

You can trust the promise of this opening

Unfurl yourself into the grace of beginning

That is at one with your Life's desire.

"Awaken your spirit to adventure;'Hold nothing back, learn to find ease in risk;

Soon you will be home in a new rhythm,

For your soul senses the world that awaits you."

Love,  Heidi