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

Hi dear friends and family,

Just wanted you all to note the article The Coast News wrote about my fundraising attempt, complete with a picture of my and my art and a brief story ab0ut my years as a nun.......

https://thecoastnews.com/2013/12/artist-former-nun-seeks-funds-for-life-saving-transplant/

Will update more soon.

Love,  Heidi