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

Update February 25th

Dear Family and Friends,,

Looking out the City of Hope window this morning I thought of the drivers stuck in heavy traffic and I actually missed the opportunity of being one of them ....driving bumper to bumper...just to DRIVE, move, stop at a local Trader Joe's....how many times I took it all for granted!  The little ordinary things of life never seemed so precious.  Soon, Dr. Stein came in my room (he's the doctor in charge of the clinical trial I'm doing) and told me they will be checking my bone marrow and spinal fluid on Friday and I'll be released on Saturday morning! The thought of the freeway is actually exciting to me now...  It will be a month since I done anything outside this hospital.

The time here has been a minefield of thoughts, feelings, reflections, being in a body that has been deeply affected, in ways known and unknown (at least right now) by so many medications.

I've been reading about this clinical trial -- BiTe (is the shortened version) -- and it is truly a blessing I got in.  Not only does it get people back in remission quickly, but it brings the cancer (or it can bring it) to a Minimal Residual Disease (or MRD) state, which makes the bone marrow transplant even more effective.   I'll have been here a month this coming Monday.  Two weeks at home and then a month back at City of Hope, unless I'm already in remission.  Then I'll possibly go directly into the transplant procedure...which is pretty grueling...more so than the BiTe trial because of GVHD.  If they still find Leukemia, will have another month at City of Hope and get retested till I come out clear.

So this year is definitely going to be marked by lots of hospital stays and skilled nurses and doctors.

Have been using my time doing lots of art and thinking of spending time in nature during the brief time I'm out of the hospital.  Speaking of art, was inspired to begin painting a baby elephant. They are adorable.   Every time I watch this video, it makes me laugh....

http://www.youtube.com/watch?v=ZvVpUGQdJWo&feature=youtu.be

Being confined to my room (because of low blood count) hasn't been easy.  Thank you to those who were able to come by and bring good cheer!   I'm heading toward my 4th year since my diagnosis!

Love to all!  

Heidi

Dear family and friends,
What an adventure!  I thought the first round of chemo I got in 2010 was challenging! The BiTe clinical trial is much more trying.  A "trying" trial!  Sounds like a poem is brewing....

A trying trial

A cancerous ordeal

filled with lessons and tests

and unpleasant sensations 
to feel

Some days I smile

and others,
 not

Today, for example,
 is a

 chocolate bar day

Fiendishly fraught

Oh how I wish I could get one 
and not get caught!

But can't go to the gift shop 
where they lie on the shelf

Without passing the nurses' station 
like a mischievous elf

nor can I go to my car

Or leave my room 

for the dark chocolate bar

So it's chocolate-less gloom

My one task, the one thing to do

Is allow this drug to work 

Not a candy bar bought  

But a pottential cure
 is prayerfully sought

Through the bag that drips

a medicine with

long letters indeed

Blinatumomab, are you what I need?

If I step into the hallway 

The nurses the nurses become taut

They are strict about

microbial creatures

being caught

So I stare out the window

with about 8 more days to go

and fill my mind with visions

of days not long ago

How I took them for granted

the gentle carefree past

when cells were just normal

and health seemed to last

I dream of my friends

and delicious sugary treats 

(a thing of  the past)

No concerns about cancer

But bodily health

that would last and last ....'

Cancer ain't no BLAST

I'm telling you like it is!

Even those baby white cells,

known as BLASTS

When I heard their name

I was aghast!  ....they multiply so FAST!

Shoving all other cells

out of the way (as if they have no say!)

Though a powerful healing light

seems to keep them at bay

I could go on and on

but for now, this is all I'll say 

My only task, the only thing to "do" is 

to meditate and pray!

So my dear friends,

please join me in prayer

that all those strong powerful

good cells

weed out the bad

sending them somewhere

so I can be glad

and resume my playful life

of  laughter and good cheer

May 2014 be the year!!!!!

AMEN

Saturday, at the OK Corral

Hello dear friends and family,

Peter just went to the Bistro at City of Hope, giving me time to update my blog.  It's been a bit of a wild journey in ways I didn't expect.  Being away from all my friends and visitors has given me a lot of time alone....more time alone than I've had since the Leukemia started in 2010. It's been good,  though difficult in ways I didn't expect.  Soul time.  Reminds me of that saying I heard years and years ago, "We come alone, we live alone, we leave alone with God alone."   Yes, we have our loved ones and I've come to deeply appreciate that we are social creatures.  At least for me, living in a cave doesn't have appeal as it might for some.  I learn so much from others about life, and about myself.  What better, true-to-life mirror can one have than the reflection we see beaming back to us through another's eyes?  And what a gift.  We could walk through life blind to our true colors -- our edges and curves lost in the midst of our self-deceptions and assumptions.  But those reflections in another's eyes cannot be denied.  Are we open to seeing them?   Do we want to see where they started and where they lead?

Illness is a mirror too.  It somehow brings those soft, vulnerable places to the surface.  Did I say soft?  Sometimes they are hard and crusted over from lack of acknowledgement.  Some are not pleasant

I'm 1/4 the way through the clinical trial.  It's been hard to keep time here.  Is it Saturday? This coming Monday I'll move over to the village bungalow and my friend Gail will be staying with me for next weeks.  Side effects are manageable, so far.  Peter is bellowing out the words "Proof of Heaven" in his goofy, lovable way ....and to let off a little "steam" in this crazy little cooped up room in a small city named Duarte, on planet Earth.  There's a little window I can look out of reminding me of what a tiny speck I am in the infinite scheme of things. So tiny and yet so Infinite.  What an interesting contemplation!  

Pedro and I are going to watch a new TV show HBO...True Detective.   
                                                  Heidi

Early morning Update from City of Hope

Hi Everyone,


Up at 2:30 a.m. and can't sleep, so thought I'd send out a little update. All is going well.  Dr. Stein who is the head of the clinical trial as a pre-transplant procedure says I'm breezing through the protocol.  This early morning (as I write this) is my first side effect -- a large red "sunburn" type rash on the back of my right leg, but it's manageable. 

 

New piece I'm working on; sorry I can't rectify it's position.  It's about 95% further done than you see it here.

Last night I ventured down to the lobby.  They have an "electric" piano there playing beautiful music, and a world-known harpist is coming this evening for a free concert.   He is going to play music from various countries listed, but not remembered as I write this  - South American, European, etc..   I can feel the pulse of LA's creative juices at City of Hope.  It reminds me of the many years I lived here.  For some reason, San Diego just doesn't have the same vibe.  Though I miss parts of LA,  wouldn't want to live here again and deal with the traffic and smog!

I am meeting people who have Leukemia; everyone's story is just a bit different, and very interesting. For example, a man and wife last night, probably around my age, were happy to share with me how he found about his AML.  He was getting a "routine" hip replacement but the surgery didn't "take."  When they went back in they did a test of his marrow and found the Leukemia. (What a lucky guy as a few weeks later the Leukemia would have been too far to treat, most likely, in order for him to get into remission!)  Chemo worked now he's waiting for a transplant.  He has Kaiser, like me, and we both have Dr. Sahebi of Kaiser treating us.  He just learned of his Leukemia and both he and his wife are still "deer in the headlights." 

They had been sitting in the lobby all day waiting for a bed!  Dr. Stein was right to check me in Monday night saying, "You better go in tonight otherwise there may not be a bed for you tomorrow morning."   I am one of the fortunate ones, a nurse told me.  The beds get filled up fast and then your treatment has to wait.

Earlier in the week I met a young 20-something woman in one of the rooms down the hall.  She got her ALL in High School and her whole life turned upside down for the last 5 years.  Friends she thought were her "BFF's" slipped out of her life.  New ones came in.  She found a boyfriend who got Lupus shortly thereafter.  I was reminded how individual our path is in life.

Well, it's getting close to 3:30 a.m. The machine that delivers the Blinatumomab trial drug is chirping, chortling, beeping out little cranky noises (why it does this at night and not so much during the day I'll never know!), so I decided to chortling right along with it and hopefully it will get rid of its "air bubbles" and allow me to sleep soon.  Apparently,  there's nothing I do or not do that can help except call the nurse each time.  Sounds subsiding now and time to catch some "ZZZZZZZ's" if I can.

Love to you all,
Heidi

P.S. Am going to treat myself to a croissant in the morning at their nice Bistro downstairs, have a seat with a decaf and look out on the beautiful Sierra mountains (?) behind Monrovia and Sierra Madre.  

(From Kevin:) Posting on behalf of my AMAZING sister! :) Hugs!

At City of Hope now and have had two days of Blinatumomab.  Feeling "lighter", better.  So grateful to be on this new antibody.  Read this inspiring story about it if you wish.  
Here's an excerpt about a woman on Blinatumomab they did a movie on:  "While Nat in theory still has a leukemia, at this point the chances of her absolute recovery are very high. Her next step is to have a second bone marrow transplant, which, if all goes well, should finally cure her. But if it doesn’t she still has Blinatumomab. The drug is still in clinical trials; its full potential hasn’t yet been explored. It is very probable that it could be used to control leukemia through intravenous injections – just as insulin is used to control diabetes."
And here's the full article.  Very encouraging!

http://au.news.yahoo.com/sunday-night/blogs/article/-/8978665/nat-andy-a-love-story/

Starting to settle in.  My dear 89 year old aunt and her daughter in law may visit me today.  Looking forward to some company.  It's been a bit of a rocky road getting started and am hoping for some smooth sailing ahead.

Love to you all in the coming weeks/months.  A change in plans and transplant being postponed is a real blessing in design I feel.  I'm a lucky lady.Heidi

January 29 update

Hi Everyone.....

Some of you will receive this twice (those of you on Peter's email list).  He has graciously saved me the time and energy from writing up the "nuts and bolts" of where things stand as of today, January 29.  So I'll copy his clear description here, and end with how I've been in the midst of such a mind-bending experience.  Yes, the Good Lord has had to bring to the fore His/Her/Its greatest, most skillful tools to keep me off center in order to "find my true Center"!

hello all---Heidi was admitted into the hospital at City of Hope up in Duarte last night(Tues) in preparation for a clinical trial testing a new drug in the treatment of acute lymphoblastic leukemia--Blinatumomab--which has had some real success in trials in Europe the past few years.

We learned today that in this randomized trial she fortunately has been selected to receive the new drug which is an antibody( as opposed to the other drugs used in the trial which are fairly standard chemotherapeutic agents). She'll start the medication tomorrow and will be in hospital about 2 weeks and then will move into housing on the grounds where she'll continue receiving the treatment for another 2 weeks or so. Then there's a 2 week break at which time she'll come home and then returns to City of Hope to repeat the entire cycle.

Our hope is that this treatment will put her into a full remission again --this would be completed about May 1-- and then she would receive the bone marrow transplant, also at City of Hope.

She tells me that the hospital has "great food" ( hard to believe of any hospital but I shall give it a try!), lots of supportive services like art therapy,etc, and a nice big screen tv with lots of fun channels.  Thankfully this all makes life a little easier during the lengthy stay.

I was unable, and still am unable, to be up there with her due to having the flu that I'm sure many of you have had the 'pleasure' of dealing with this winter. I expect to be up to be with Heidi this weekend however to cheer her on.

And we thank all of you once again for all your love and support!!

warmly,

Peter

When the door closes

And light shadows fall into darkness

Where tender feelings

Are hurt by a moment in Time and Circumstance

We can allow the experience  of letting go

Into thin air

Without lonely despair

Into the heart

Where the seed of love makes its start

Into the sea

Where the salt of our bodies runs free

Into the soul

Where the truth is known

This is my prayer, so sweet to feel

The all embracing freedom

of its fruition into Life

Love to all,  

Heidi

P.S.  They have me on 16 mg of decadron -- a super powerful steroid.  Pray that my body can "let go" into sleep tonight!    :)

On the Eve of my trip to City of Hope

I've been alone most of the day.  Peter has yet another cold.  Number 3 in the last month or so?  It is indicative of the stress we've both been under. So I'll travel to City of Hope by myself tomorrow, check in and wake up early Monday for the telltale tests that will determine my next steps.  

I love the analogy of fog.  It rolls in, covering everything. You can yell at it, blow at it, ask it politely to go away.  But there it hangs,  indifferent to your cries.  My brother, Greg, was recently in white out conditions, driving through a snow storm in Wisconsin.  Big rigs were piling up in the median on that icy day.   He couldn't see ahead even a foot.  Fortunately he came out OK.

I'm more at ease with the fog of this Leukemia journey --not knowing what's around the next corner, or the "black ice" of unexpected twists and turns.  But I must say, this week was tough.  I was skidding all over the place!  I woke up at 2 p.m. this morning in yet another atrial fibrillation, making it a total of 3 for the week. In the 7 years I've had this condition, I've never had THREE in one week.  

For some reason, I get these Afibs in a severe form and am unable to walk or eat much.  They are completely debilitating.  This, on top of the weakness from 3 plus years of chemo treatment, really did me in!  It pushed me on every level, much more than the Leukemia itself.  

I came across one of T.S. Eliot's poems today.  At first reading, I seemed not to receive the full inspiration he must have intended.  On deeper reading, Ah, yes....In the darkness shall be the light.  Hoping, loving without expectation, without directing, subtly, the outcome we desire, while at the same time remaining in the Light, strong in love, faith and hope.  Quite a paradox. 

   "I said to my soul, be still, and wait without hope, 

   for hope would be hope for the wrong thing. 

   And wait without love. For love would be love, 

   of the wrong thing. 

   Yet there is faith. 

   But the faith and the hope and the love, are all in the waiting. 

   And the darkness shall be the light 

   and the stillness the dancing."

In stillness, the dancing.   To get to that place, really get there, what an experience of Grace.  Forced to stay in bed several days this week (Afib) when my spirit so wanted to do even simple physical things (it's even hard to paint when in an A-fib) , sitting for hours in the ER hoping they could trigger my heart into it's normal rhythm, wondering if the blast cells are back  -- all of this, unfurls my fingers from the driving wheel of life and into that fog of unknowing, a  place of silence where there is peace.  I'm sure we all have some version of this journey towards peace and stillness in our own lives. Some roads we travel are steep indeed. 

 I can only pray for the perseverance to continue the "waiting" that T.S. Eliot refers to, with graciousness and humility. 

To be continued next week.  I'll let you know when the actual transplant will, hopefully, take place so those of you who are free and wish to can visualize my body accepting the donor's bone marrow!

With love and Gratitude,

Heidi

P.S.  Couldn't resist adding this sweet, little pup's very peaceful mug.

Going back to City of Hope this coming Monday

Hello everyone.  The blogger is misbehaving today, saying I sent out an update.  But it's a good prod because I can briefly update you all.  I'll be going into City of Hope Monday morning for some tests.  So far this week and the end of last, the blast cells are still gone.  If that continues, I'll go into the transplant prep procedures possibly as early as Wed. or Thursday.  If not, then the clinical trial.  We shall see. This week was particularly intense.  Spent hours in the ER Wed.  Went into 2 ferocious A-Fibs and a lot more which I wont bore you with.  We seem to be having a pretty intense ride these days...at least that's what I hear when I speak to so many. 

The blog just gave me another error message, so don't know if this update will go through.  I've also been updating my www.helphopelive.org page in case you want to check it out, but it's pretty much just nuts and bolts.  

Type in Heidi Hall in the box they provide and it will take you right to my page.

Love you all, so much,

Heidi

And then One Day

Written this morning by Peter in response to the latest News

 

And then one day

you saw through

the drizzle, the fog-

bound gloom

and what you knew

as huge gray

boulders, unleashed

from the towering

mountain and

pounding down

towards us on

this narrow

path

were really

thousands

of iridescent

hummingbirds

in wild play,

thriving

together

and falling

deeper

in love with

the sun's

sparkling

warmth.

Peter J. Lautz

January 17, 2014

You will see the beauty of these hummingbirds in their "wild" play, as you read on!

On Monday of this week, as you all know, they found 20,000 blast cells in my blood.  There should be between 1-4K.  The timing was so peculiar -- having it come up the very day I'm in the City of Hope and not only that, but actually mid-way through my first treatment, that I could only wonder.... On the surface of my thoughts I only felt a numb a despair.  Could this be a synchronicity, unfathomable to my mind?  But what did it mean? 

By Wednesday I had made a practice of just letting go of figuring it out or wondering what the next step would be.  "My life is in Your hands."  That was my constant refrain.  My bed became the lap of Divine Mother and I've been able to let go during the whole night, in peace and most of the day.

Then a big surprise.  Another sharp twist on this roller coaster! Peter and I went for my appointment with Dr. Polikoff yesterday.  I had my blood drawn beforehand to check the status of the blasts. Had they increased? They proliferate very fast and in weeks can block out all other blood cells,  The only thing I had done since Monday was to have a low dose chemo drug called fludarabine and to go on decadron, a powerful steroid that kills leukemia. Somehow between Monday and Thursday, the blast cells had disappeared! Poof!  We will not know with complete certainty whether my bone marrow is clear of cancer until the week January 27; if all clear the transplant resumes...

But who knows?  Maybe the next drug in the clinical trial is necessary for my complete cure.  So bone marrow relapse or not, I'm at peace with just being a traveler on this meandering road and watching in awe the wild swings and deep valleys and also the peaks when good news comes, like yesterday.  But through it all, I'm learning, oh so hard at times, to stay as neutral as I can and not be attached to results, since if there's one thing I'm learning, there as slippery as a wet live and spunky fish in my hands.  There is just no way to hold on.

Having said that, I'm still human and it wouldn't be truthful if I didn't say I felt the weight of the universe off my shoulders last night at yesterday's news.  I have two more blood tests coming up this week and a bone marrow biopsy the following week, plus a CSF test.  What will the results be?  Will they change and reveal more blast cell? Will it have come back into my CSF making me have to consider whole brain radiation again?  So much can happen. Quiet now my thoughts.  You cannot know the future. Only the present has peace.

I'm on fire these days with my art.  My website is finally getting to a place where I like it but more has to be done.  Check it out if you're inspired.  www.artisansoflight.com

If I go into the clinical trial, there's a possibility I'll need more funds.  It's a randomized trial and if I don't get the blinatumomab (the main drug under review) I would just get regular chemo and have to pay for that myself.  Medicare would pick up the tab for the blinatumomab.  But all this is for a later date -- not that far off.

The intensity of everything lately has both Peter and I a bit ragged. Your prayers for both of us are deeply appreciated.

With heart's love,

Heidi

All is Well

In the middle of the night I felt a wonderful peacefulness that all is well.  I trust this detour is necessary for my complete healing.  The ways of our soul path are inscrutable sometimes.  My affirmation today:  "I lay my life in the hands of a benevolent Creator who knows my highest good."

Love to you, each one,

Heidi 

Dear Family and Friends,

I woke up this morning at the crack of dawn. Today began like so many others. A dark sky, pale at first, becoming brighter. The silence filling with sounds of a bustling city awakening. It was still dark in the room.  I couldn't go back to sleep.  My mind was swirling like leaves in a dry, hot wind.  There was nothing to do, no control, no pleading with God, nowhere to place the ache in my body and heart except in the hands of a Benevolent Universe.  As I breathed deeply, I began to let go, one by one, of the things that gripped my mind with pain, worry, fear. 

Peter and I came up to The City of Hope this past Monday buoyed by the hope that this would be the final leg of a long arduous journey, or rather, battle.  My warrior spirit to the forefront, I began my first chemo appointment at around 4 p.m.  Almost finished with the infusion, a call came from Dr. Sahebi, my bone marrow transplant doctor.  She started off:  "I have bad news."  I braced myself.  "The blood work we did earlier on you this afternoon showed the leukemia has come back into the bone marrow."  At first I was numb, hearing her voice as if from a distance of a thousand miles.  The doctor in San Diego had just done a bone marrow biopsy two or three weeks before and took 27 vials of blood from my arm for testing.  No cancer.  The leukemia decided to make its presence known the very day I was admitted to City of Hope to begin my bone marrow transplant procedure.

Dr. Sahebi continued, "We can no longer proceed with the transplant and you will have to go home tomorrow."  I could barely speak.  Peter was out of the room. There was a drab almost grey light in the room. The curtains around my chair couldn't stifle my quiet sobs as I tried to make sense of what had just happened.  As I sat there stunned, there was nowhere to turn, there were no answers...only another layer of complexity after so many layers these last three plus years.  

As I lay in my bed at the Village bungalow at City of Hope this morning, preparing to go back to San Diego, I finally found two wonderful words, "Let Go."  I lay there in the quiet dawn repeating these words over and over and over.  Let go of disappointment, let go of cancer, let go of concern over the pain that has crept into my body the last few weeks, let go of whether I'll again qualify for the bone marrow transplant or the clinical trial that could, if several things work out, put me again into remission, and I reminded myself, "it is darkest before the dawn."

In two weeks, God willing, I'll be back here to be admitted into a clinical trial called "BiTe" and thus on the road again, eventually, for the bone marrow transplant.  I'll let Peter's words of yesterday, the day after the "news" (which some of you have already seen) explain more:

"Hello all--a brief update after a very difficult night, a long day and a hopeful one ultimately...We were connected with an oncologist-researcher at City of Hope who is investigating a new drug for acute lymphoblastic leukemia here. (There have been 3 yrs of encouraging results from Europe on this drug).

So, the plan is to return here in 2 weeks for some tests and if the results are within certain parameters she will start the trial that week.  Then after approx. 8-10 weeks of intensive treatments and if she is in remission again in the bone marrow and spinal fluid, she will be eligible for the transplant.

The journey continues.  Thanks for all your kindnesses, loving support, and just your plain old selves!!!!

We love you all.

Peter"

 

Every now and then I'll get a gust of wind, and those leaves take off in all directions...like now.  Will the donor still be available in several months?   Will I be able to get into remission again?  I have not relapsed in my bone marrow before throughout these 3 plus years.  Can my body withstand yet again another round of very intense chemo followed by months of the transplant and recovery?    All I know is that there is no giving up; at least, not at this point.

 

“The secret of health for both mind and body is not to mourn for the past, nor to worry about the future, but to live the present moment wisely and earnestly.”

In the end
these things matter most:
How well did you love?
How fully did you live?
How deeply did you let go?”
― Gautama Buddha

 

Stayed tuned as I find my way through the shadows to the brilliant dawn of unshakable faith in the knowledge that everything is exactly as it should be. And thank you all for your continued prayers!

 

Heidi

 

Many of you may have already received Peter's very accurate recap of yesterday, but in case not, here it is for those of you not on his email list.  The only thing I would add is....yesterday on the campus of City of Hope was like being in another country.  I felt a kinship with the people there.  Though not everyone has Leukemia, many have some form of blood disease or diabetes (another of their specialties).  One cannot help but feel the camaraderie of illness -- the common journey toward health and well being, and yet, the common experience of suffering.  I saw several little bald-headed children receiving chemo in their parents arms.  It's so different than reading about such things in the newspaper...

 

It took some will power on my part not to let the tears come pouring down my face at several junctures yesterday (for various reasons), but my overall experience was that of love, skill, friendship and the knowing that I will be cared for by wonderful, skilled people!

 

Here's what Peter wrote:

 

hello all--Yesterday was a big day for Heidi and myself. We spent many hours at City of Hope in Duarte, CA in final preparations for her entering the hospital this coming Monday the 13th. I will spend next week with her there in bungalow type lodging they have on the campus.

It was an intense and exhausting day and we met many really delightful and caring staff there. It really seems to be a place that aims to care for the whole person. Interestingly, we learned yesterday that it was City of Hope researchers who developed one of the more experimental chemo treatments we discovered last year which we then persuaded Dr Polikoff (her oncologist at Kaiser) to use in a novel way for Heidi..And it helped get her through a relapse at that time and back into remission!

 

A lovely social worker met with us for a very in-depth interview yesterday and after hearing a smidgen of what Heidi has been through these 3 years, said " you are an amazing warrior woman!". We just smiled a knowing 'yes'....

 

We're looking forward to the next month or so while she is hospitalized at City of Hope to her deep healing and finally being cured of leukemia once and for all. There will undoubtedly be some twists and turns ahead and with love and our support she will navigate through all the healing which is to come.

 

She will have phone and computer of coursed while there and we will keep you informed of her stay. Special prayers and loving focus are requested in particular for Wednesday January 22 when the actual stem cell transplant is planned to be given her.

 

ps--for those of you who may be able to donate blood as she will need some transfusions most likely in this process, there is a way to do that. Let me know if you're interested and I will get you the details.

love and many many thanks!

Heidi and Peter

Celebration of Life

A small portion of my art on display

With friends at the Benefit Concert and Art Show



Music Group "Streetlight Cadence"

 

Dear Friends and Family,

I could not have imagined a more amazing Benefit Concert and Art Show Saturday night.  It was magical!  Attendance was completely FULL, the music was fantastic as I and others found ourselves helplessly tapping our feet to the beat.  We were all so moved by the fire of creativity we experienced, the wonderful precision and skill of youthful, professionally trained and lively musicians.  The creative spirit, when it's given free reign, is glorious to behold.   I felt like I was 20 years younger and among people I had known for years.   What a great celebration of life and love before going in to City of Hope.  My "adventure" begins in just a few days -- January 13!

One particularly touching moment was when a man, who purchased some of my art, gave me what I thought was his business card.  When I got home  I found that it was actually the website of the foundation he started in honor of his adorable little daughter who had passed away very suddenly.  He began a foundation in her memory to "pay it forward" to others in need.  I felt so touched to be the recipient of his commitment to his "angel."  What an inspiration to see the goodness that can come out of heartbreak.  If any of you want to check out his website, it's www.indiaphillips.com

There's a mixture of emotions as I head back into the Valley of Chemo.  My strength is finally coming back after months of radiation,  pneumonia and a cold last week.  At last I can walk up the stairs at Peter's without pulling myself up by the bannister, or crawling on my hands and knees, step by step, to the top.  It's hard to think of all this resurging strength going away....yet again.   Deep down I know I have to  give myself every opportunity of a cure.  I was recently given a book on what to expect during and after a transplant.  After reading just a few pages I decided not to read further, at least for now.  Complications (graft vs host disease, particularly) can range from from mild to severe to life-threatening.    I'd rather not have any preconceived images or notions about the potential downside of the transplant but focus every day on my body accepting and welcoming the donor's gift with gratitude!

So much of Life is completely uncertain.   But this much I know....there's a good Samaritan out there, willing to help a total stranger (me)  to live.  I hope to meet him someday and thank him for his gracious gift.  And sweetie Pete will be with me as much as possible, holding my hand and my heart as I face this next year.

So just when I was beginning to feel somewhat "normal" -- happily preparing for the art show, walking more, celebrating the holidays, here I am facing the unknown in yet another form.   As I said in the interview with Coast News:  "Leukemia is one heck of a spiritual practice" -- or something of that nature.  I go into the Valley of Chemo and the transplant itself with my lantern of faith to light my way, and the many beautiful friends and family who stay close and give me inspiration.

I am so blessed to have you all in my life.

Heidi