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.