FANCY HOSPITAL COUTURE

Sweet friends,

 

Bio-Cords a-dangling

nerves somewhat jangling

The hour of surgery approaches

 

Pre-op, though long,

Did not eclipse my hopeful song

and hours made way

to a room full of nurses

 

And techs and doctors and cold steel and lights

And needles and drills

my life in hands that were skilled

 

I awoke intact

though pain had me sacked

and hours were slow like a snail

 

My sweet Pete's smiling face

filled post-op room with grace

and thanks that the surgery went well.

 

CT scan will tell

if catheter settled well

This morning when doc comes to reckon

 

Today, will I go home?

That much still not known

Will write more in a bit

 

Stay Tuned!

Que Sera, Sera....What will be will be

Dear Ones,

When I woke up this morning, this song came out of some deep chamber of my mind.  Haven't thought of it in AGES.  It's simple and sweet, and has alot of wisdom:

When I was young, I fell in love
I asked my sweetheart what lies ahead
Will we have rainbows, day after day
Here's what my sweetheart said.

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

 

The cytology report came back yesterday confirming a Leukemia relapse.  My plan is to have the ommaya reservoir put in tomorrow and then chemo again into my brain this week to knock it all back, hopefully, to zero.  I have a bad cold to make things a wee or a lot more complicated.  Have sent a note to the doctor as to whether we will go ahead tomorrow.  But I don't want to wait since this cancer is so fast moving.

 

I'm also seeing Dr. Lombsang Dhoundup at 11 a.m. today.  More on that in my next blog.

 

Whatever happens from here on, I've been given 6 months since my last mega relapse to be with loved ones, to do some art and most importantly to search my soul, the universe, God, for those spacious, wondrous connections of Love.  It is all Love in the end.  This dream will pass for all of us, and new astounding beautiful doors will open as we go onward in our journey.  What will be will be.  I am not counting on leaving, but I must be in a place of sweet, complete acceptance. 

 

Peter took me to a Tibetan Astrologer last week.  When I sat down with him the first thing he ask me was "What happened to you two years ago?"  I told him I was diagnosed with Leukemia.  He immediately said I had a classic death transit and should have, could have, easily died.  That transit ended this past November and the fact that I had made it through those two years was very auscipicous he said, though I still have be careful.   I was so uplifted to hear that.  And then just a few days later to hear about this relapse.  The lessons, for me at least, is to put my counsel squarely in my heart and soul, with God alone. Where else is there to go?  I've been told so many positive things.  Invariably, if I latch on to any of them, I am sorely disappointed if things go awry. 

 

My Lord God,I have no idea where I am going.
I do not see the road ahead of me.
I cannot know for certain where it will end.
Nor do I really know myself,
And the fact that I think that I am following your will,
does not mean that I am actually doing so.
But I believe that the desire to please you
Does in fact please you..

I will not fear, for you are ever with me, and
Will never leave me to face my perils alone.

Thomas Merton. Circa 1954-56

 

I love you all.  Heidi

Back in the Valley -- Your Prayers are very much needed

My dear Ones,

Peter's email says it best, so I am forwarding this on to you.  It may just be another bump in the road.  I am not giving up.  But it also shows the perniciousness of Leukemia (ALL) in the spinal fluid.  I'm back in the Valley of Cancer.  How long I shall remain here and what my options are at this point are still being reviewed by Peter and I and others.  The thing about Conventional medicine is that it is quick acting, like a sledge hammer, and I need QUICK now to push it all back immeditately.  The decadron they finally gave me in the hospital took my left flank pain away almost immediately.  Decadron is a steroid about 5 times stronger than prenisone, and it also kills cancer cells.  Mystery of mysteries, the cold energy treatments last week didn't pick up the cancer.  That could have been because of me and all the chemo I had this past few months which has dulled my ability to feel it, and feeling it in MY body means my body is taking it.  So I was lulled into feeling that nothing was there.  These relapses in the CSF are like lightning,.,quick, painful because of the nerve involvement. etc. A horrible place to have cancer, I say this with a humble heart.  Maybe someone day, in some life, I will understand why this is how it is.  Acceptance now is my main focus, and to keep moving toward light, love and health....  I love you all,  Heidi

Hi folks--As I think you all may know, Heidi went back into Kaiser hospital thursday night due to severe left flank pain. It was her 3rd ER visit in 5 days and she was thankfully admitted this time. After a couple of days on a pain pump device, they evaluated her cerebro-spinal fluid and found that she likely has relapsed with the leukemia. We won't have 100% confirmation until later today or tomorrow when final lab results are in, but the oncologist told us he is sure that this is the leukemia back in her central nervous system.

So once again everything is moving very fast--major decisions need to be made in next couple of days---for example, whether she undergoes the Ommaya reservoir surgery again to most effectively deliver chemotherapy into her brain.

We are both anxious and worried and sort of stunned...and we're back in our 'war room' mode this morning ---- evaluating options, contacting doctors,etc etc...and what's best is that we are very close and love each other through these turbulent times---it's all precious moments, that's for sure.

love,
Peter

In the Hospital again -- Time for another Update!

Dear friends and well-wishers,

I thought all the twists and turns of my journey with Leukemia were over, or at least quiet for a time.  My path has gradually become more clear.  What a relief to have finally made some hard decisions and to be settling into a new rhythm and actually starting to get back into my art.  But just when my energy was beginning to increase after about 4 months of intense fatigue, I was "struck" by an enormous, mysterious (still undiagnosed) pain in my left flank area.  This new pain has now taken top honors for being the worst I have experienced in my life!

I have been in and out of the ER 4 times in six days.  Last night they admitted me into the hospital.  CT scans, and other tests have ruled out kidney stones, abcesses, infections.  The MRI I just had will hopefully reveal a more subtle level of detail, especially regarding the nerves in that area.  There is a numbness around my lower back, side and front, and the type of pain -- a relentless and, at times, excruciating pain that never goes away -- makes me think it is nerve pain.

At home I couldn't sleep, and even in the hospital now it has been difficult to manage the pain well with all the latest science and technology.   I've always been able to rely on the pain meds for instant relief, but now they're not working as well;  I believe I may have built up a tolerance to  them.

In the ER last night, Peter led me into the most beautiful meditation of opening to this experience -- ALL of it -- especially the ways I'm scared, weary, confused.  It was just for a few minutes as we were waiting for a bed in the ER, but in those few mins. I found myself shifting to a truly wonderful place, even in the midst of intolerable discomfort.  Sometimes it is hard to do this "shifting" on my own with all there is to cope with,-- so his presence was like a raft I could feel undernearth me, his words were the paddles, and my spirit was the wind in my sails that carried me to another, wider space.

By the way, if any of you know of any good comedies that you love and that are instant downloads from Netflix, please send me the titles.  It really helps if I can take my mind off the situation!

Will keep you updated on the MRI results, thank you for your ongoing support, love and friendship,

Heidi

P.S.  MRI results back:  Still no cause can be found.  However, the doctors here feel the pain is NOT caused by any relapse of Leukemia and said that if it was, they would have definitely seen evidence.  That's good news!

Heidi and those of us who love and care for her are deeply grateful for your generosity this past summer in helping to support her very crucial treatment program after her leukemia relapse.

She recently decided to stop chemotherapy, at least for awhile, and put her full commitment into the Mederi protocol (from the integrative and innovative Mederi Clinic in Ashland, Or.) with occasional treatments with the cold energy.

Chemotherapy is merely “palliative”, cannot cure her and has had very painful and debilitating side effects too.

Heidi is seeking a complete cure and continues to have faith that it is out there. So far she has defied all statistical outcomes for people over 60 with ALL.

Link to help Heidi: Help4Heidi

It is imperative that she continue with the Mederi protocol and cold energy treatments as ALL remains a very difficult disease to treat. In the adult setting, conventional medicine says that most patients will ultimately die of their disease.

At present, Heidi is still recovering from the two plus years of intense chemotherapy, hospitalization, facial paralysis, seizures and other related difficulties. The doctors say it may take at least six months for her to get any “normal” energy back. She is also exploring the possibility of working with Dr.Yeshi Dhonden who was the Dalai Lama’s personal physical for 20 years and has treated hundreds of patients with all kinds of Leukemia – many successfully treated. Please check out this website if you would like to know more: http://blog.tibetanrefugeehealth.org/20-2/healing-from-the-source

This shift in her treatment comes at a time when she just learned that a past source of income is no longer available to help sustain her. It was this income that enabled her to purchase the Mederi products and continue with their treatment which is a long term plan. She will need to be on the copper chelation which is a “natural” oral chemotherapy for at least 3 years. Research out of the University of Michigan has shown that cancer patients whose copper levels are 20% below the normal range for 3 or more years due to this treatment did not relapse.

Heidi is also exploring other means of financial support (though unable to work at present) through her art. She is developing her website with the help of a friend and hopes to have it up within a month--www.artisansoflight.com.

Your donations this past summer and fall went for the following treatments:
-Cold Energy treatments daily for two months – approximately $8,500
-24 hour care for a month or so -- @$17 or higher per hour
-The numerous supplements she was on during the summer, some quite expensive.

If you are now able to help Heidi in this phase of her ongoing recovery and healing, your current donations would go toward (our 3 month target is $7000):

-Mederi protocol and products -- $1,000/mo (approximately)
-Copper Chelation -- $300/mo
-Monthly Consultation with Dr. Mark Bricca of Mederi -- $225
-Occasional Cold Energy treatments -- $125/session (4 a month = $500)
-Dr. Yeshi Dhonden’s protocol if it seems helpful. So far, research shows that it would. Heidi is currently in contact with a doctor in the US who is his contact here.

Link to Help Heidi: Help4Heidi

Many Thanks and Our Wishes for a Happy and Wondrous New Year!

Peter, Greg and Kevin

End of the Year Reflections

Dear Family and Friends,

A very Happy New Year to all of you!  How wonderful to see a new year,  to turn over a new page, and hopefully, an entirely new chapter!  2012 will always be remembered for its hard-earned lessons and surprising blessings, as well as its "task master" quality in the school of life.  Just six months ago, as my life literally hung in the balance, I wondered if I'd see 2013....  And here we sit on its threshold.  

These past six months were definitely harder, more challenging, than anything I could have imagined.   Moments lingered, days seemed to stand still, I "faced the firey dragon" as they say. As the year ends, I'm aware of how integration of it all isn't something I can rush through or stuff away somewhere.  So I hold it gently...even the fears and tears, and ways I could have risen up more valiantly to meet each challenge.  I feel my breath, feel the warm gratitude that fills my heart for all that is good and kind, and count my many blessings.

One of those blessings, as you can see from the above photo (taken this weekend) is that I have my smile back (from the facial paralysis this past fall)... despite the doom and gloom scenerios given by traditional medicine.  The picture was taken when  Peter and I visited my dear Aunt Jean in Los Angeles, with cousin Alan, his wife Rachel and  dear little daughter, Tilly. This past year gave me such a deep appreciation for love, family and the tiniest pleasures of life.

After my last chemotherapy appointment on December 13, Peter and I spent 13 hours in the Emergency room -- again!  I was diagnosed with "chemical menigitis" -- Chemical meningitis results from any of a wide variety of foreign irritants causing inflammation to the tissue covering the brain and spinal cord. In my case, it was caused by the chemotherapy I had just days before.  It came with the worst headache of my life!   After the last five lumbar punctures with chemo have resulted in incredible pain and potentially serious side effects, I made a momentous decision to stop chemo, at least for now.  My body has been clearly telling me:  ENOUGH! 

Dr. Polikoff wants me to be on it for the rest of my life.   As with many cancer patients, quality of life issues begin to become more prominent, and this is certainly the case with me.  My decision to go off of it is my version of a free fall into faith.   It was not a mental or analytical decision, necessarily, though I certainly have been weighing all my options like someone studying for the Bar! But was rather a more intuitive approach -- a listening to that voice within, beyond logic.  Sometimes there is just no way to know, objectively, what is best.  This is one of those times for me.

I eventually decided not to go ahead with the new T-Cell clinical trial in Philadelphia as it became financially prohibitive and the side effects are a bit too risky for me, in my opinion.  It's a phase I trial.  The other treatment I've been considering -- Rituxan anti-body -- is still a "Plan B" option should I ever need it in the future.

For now I'm focusing entirely on periodic cold energy treatments and am moving full force with the Mederi protocol.  Along those lines, my ceruloplasim (copper) levels from the tetrathiomolybdate (or copper chelation) have dropped to the target range, which is great!  For those of you who know people with cancer and are interested in learning more about innovative (clinically tested) treatments, I strongly recommend this article about antiangiogenesis:  http://www.cancerfoundation.com/copperprotocol.html

Long story short, cancer cells (tumors and "colonies" of cancer cells as in Leukemia) need a blood supply.  Copper helps in the creation of what is called angiogenesis. Cut the copper levels, and this blood supply is cut off, creating antiangiogenesis, without adverse effects to one's health.  My copper level went from 31 to 10 in just two months.  Scientists have seen that if they can keep the copper level around 7-10 (or 20% below normal levels) for three years, relapses of cancer do not occur.  It is most effective when there is no evidence of cancer, as when one is in remission, such as myself.

I am also taking a break from the weight of daily/weekly smaller decisions until after the New Year....decisions like changing my oncologist, telling Dr. Polikoff I want a break from chemo, and a number of other matters concerning my health.  Everything was simply becoming too much when added to dealing with health, healing and living.  I have felt immeasureably better, happier, stronger for the last week or so. 

All I have gone through these last two years has molded me as nothing else could. Perhaps I could have grown just as much without all the turmoil.  I'll never know...  I'm inspired these words of a wise Buddhist teacher:  "I think that suffering is the only path to maturation....it catalytzes our capacity to mature, to develop equanimity, to develop qualities of presence in the midst of conditions which seem untenable."

It's surely one of those paradoxes:   how do I continue to gather my inner resources of resilence, self-compassion, courage, faith and hope in the midst of seemingly "untenable" conditions?   What an amazing spiritual practice this can be -- yet nothing could be more rewarding, soulfully, humanly, than to reach that deep acceptance of all the conditions in our lives, especially those with shadows, pain or confusion.

What I love about the non-dual approach to life is that it seeks a deep acceptance of all that comes -- not only transcendence or transformation as the first inclination.  That can too easily lead to separation or spiritual bypass.  But a full bodied soak in the mud of life where we feel the full dimension of being human and we come out cleaner, more integrated, more empathic of others' plights.  I'm convinced that it's in welcoming (even if not joyously) rather than resisting, that our mud is ultimately transformed into gold.

I skipped along merrily (well, almost) once out of the hospital in 2011 and in outpatient treatment.  Then last spring, and the relapse,  "Leukemia" seemed to settle back into my life like ink infiltrates a glass of water.   Yet where I am now is the sum of all the steps I have taken thus far and in some ways I feel a new and greater strength.  For some mysterious reason, we are often not given to see all the whys and wherefores of our journey.  Thus a greater faith grows in us.

My dear ones, I love you all and wish you deep solace, love and joy in the New Year.

Heidi

Peace in the Mystery....

Dear Friends and Family,

These past two weeks have been full of lessons, stumbling, tears, laughter, confusion and insight!  Around Thanksgiving (a beautiful, beautiful day) I went into an unexpected freefall -- you know, that place we go when we've been shoved over the proverbial cliff and there are simply no grappling hooks, no limbs to break our fall, only a slippery rock face...and an uncertain outcome.  (More on this later....)

Some recent details:  My bone marrow biopsy came back "clear' of cancer.  Boy, was it a painful test but such great news!  I call myself the human pincushion...the "pokes" must  be well in the hundreds by now!  I had another chemo lumbar puncture today (with methotrexate -- again -- and an important sampling of my cerebro-spinal fluid for the presence of cancer).  The puncture again set off my nerves in the tailbone area.  I came armed with a powerful painkiller this time!  It's been a month off chemo because the last time I had spinal fluid leakage.  Have started to feel pain at the base of my skull in the last few days, which makes me wonder...  The last time I had pain there was right before the facial paralysis due to cancer cells in my brain.  So I have a few butterflies with this latest test.

The Mederi protocol is working its wonders, I'm sure, as my recent blood work is very good....not in the normal range yet, but its holding its own.    My fatigue continues to be daunting.  My activity is only a small percentage of what it was even last year. More news is that Dr. Polikoff called the expert oncologist in San Francisco about the Rituxan anti-body therapy  -- found by the clinical advocate I have worked with in November.  It has had some promise with relapsed Leukemia (ALL) in the spinal fluid. It turns out that it is only administered through an Omaya Resevoir, and we all know what happened with mine!  (now removed...)  So more choices ahead. 

For now I'm taking it a day at a time, a week at a time.   

There truly is no way of knowing outcome of any of my choices, really, since I'm in uncharted territory. How true that is for all of us, though not all situations are life or death outcomes.  Nevertheless, they are real and raw.  A dear friend of mine was just laid off work, has a number of health issues with no medical insurance. A neighbor just found out she has breast cancer.  Again, no insurance.  I've been inspired by some of my friends and family who seem to be more comfortable with the freefalls of life than I.  I am gradually finding my way to a deeper grace and peace in the unknown.  Too often I have harbored a sweet expectation that the wisdom of "masters" or healers or teachers of one kind or another would lift the curtain, shed a light on my next step or somehow wave a magic wand and take it away forever!  But I have witnessed, at least in my current situation, that no writer, speaker or wisdom teacher can do this for me. Their wise words on the pages of a book or in my heart only point the way,  I have to do the walking.  I'm the one who needs to determine when I've had enough chemo, or when I change treatments, or how I work with myself when in pain or anxiety. 

The irony is that the enlightened journey leads in, not out.... and to become "full" we must become as "empty" as we can.  After decades of reflection, I am closer to understanding the idea of how empty becomes full (and vice versa).  My path to live this understanding is another thing entirely.  Yet each backward step has propelled me forward. I "keep on truckin'" as they say.  Eventually we will all get there!

I got up early this morning, very groggy, and nestled into my meditation seat.  Looking out of the window in the early morning, all I could see was a field of grey sky.  A thick fog hung low outside as the dark limbs of trees contrasted a colorless sky.  I reflected....How bare and vulnerable, these trees, without their protective garb, their countless masks falling into this God given moment....

During these past two weeks I have witnessed my own leaves falling wistfully to the earth. I've tried to catch a few on their way down....only to have my fingers grasp thin air. A fog seemed to settle in around me recently as I felt an unsettling north wind blowing though my inner landscape, despite my best efforts.  I think I'm realizing more and more, both the obvious and subtle ways I have tried to keep every leaf of my life fresh and green, clinging to whatever might give me a semblance of "certainty".  When I touch the edges of my resistance to the falling leaves -- e.g. to the pain, the cancer,  fatigue, to not having, for now, the life I once had -- anxiety would flood my being.  Perhaps the two years I've been at this so relentlessly is shaking my tree, just a little more.  Sometimes I imagine myself bolting -- running fast and free until I finally out-run my experience with illness.  But there is nowhere to run, to hide, to isolate.  Can I turn... right here and now and breathe into loving myself and others in this moment?  Can I breathe into a larger sense of myself  that is way, way bigger than a vulnerable, trembling leaf, more deeply rooted than the tree, or that even endures impermanence itself?   

As I sat there this morning, I began to feel my energy shifting.  The grey sky which blocked out the landscape with vague ambiguity, became embracing, silent, friendly and my inner landscape became more illuminated.  Some clarity came -- not necessarily about my treatment or "next steps", but about life itself.  Perhaps I got just a little closer to the truth that "trusting" is not necessarily "knowing".  It is, at least for me right now, being able to walk into the foggy air around me with a sense of hope, and to let the leaves fall where they may. 

Well, here I am again waxing poetic. How appropriate, then, to end with one of my favorite poets:

Quiet friend who has come so far,
feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell.

As you ring,
what batters you becomes your strength.

Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.

In this uncontainable night,
be the mystery at the crossroads of your senses,
the meaning discovered there.

 

And if the world has ceased to hear you,
say to the silent Earth: I flow.

To the rushing water, speak: I am.

 

 -- Rilke

 

 

"In this uncontainable night, be the mystery at the crossroads...."  The night is immense, infinite.  Darkness stretches out into infinity to remind us that we cannot know the beginning or the end of things; that life itself is uncontainable, uncontrollable.  The emptier we are, the more we can hold of the Great Immensity. 

 

Heart's Love,

 

Heidi