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

 



Happy Thanksgiving and an Update

Happy Thanksgiving to all my friends and family, and a huge, HUGE, thank you for all the love and support I've received from each of you these past two years.  Thank you for your messages, your smiles, for standing next to me on this arduous journey.  Even if I haven't heard from you, I have felt your presence like invisible arms supporting me.

Thank you to those who have given donations, and for all the ways we've maintained connection.  Connection, to me, is an energy created when people feel seen, heard, and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship. That I have experienced from you...more than I can ever say.

An update on how things are going for those who are interested:  My last spinal tap came back clear, with no detectable cancer cells.  Hallelujah!   However, during the tap the needle punctured something because I developed leakage of my spinal fluid into the surrounding tissues a few days later.  Also, for the first time since getting these,  I was in excruciating pain for about 7 hours and could barely move!   The symptoms of leakage of the spinal fluid are very much like spinal menigitis, without the high fever:  severe headack (the strongest pain meds, even prescription meds, couldn't alleviate it) and shoulder pain and nausea -- so severe, in fact, that I had to go to the Emergency Room and stay in the hospital for half a day or so.  It was pretty traumatic.  The doctor didn't want to give me the "remedy" for this (an injection  of one's own blood into the spinal fluid known as a "blood patch") because my situation, she said, was "complicated."  So I needed to weather the pain for about 7 days, getting relief mainly from lying down.  Thankfully, the leak healed on its own last Friday and, aside from some pretty strong nausea and fatigue this week, I've been doing relatively well.

The Big Picture is that the Leukemia seems to be in a quiescent state.  I'll be starting the TM protocol from Mederi this next week.  Here's an article from someone at the Linus Pauling Institute in Oregon that explains how powerful this is in the treatment of cancer:  http://lpi.oregonstate.edu/fw08/copper.html    Pretty amazing stuff.  It will take about 4 to 6 months of being on "copper chelation" to get my ceruloplasm levels where they need to be to create anti-angiogenesis and, for this to all take place, the Leukemia cells need to stay quiet.  The TM protocol can, in fact, kill cancer cells...but if there are too many (as in the form of a tumor, which I thankfully don't have), it is not effective in curing all the cancer.  So it is imperative that I maintain this quiescent state.  Toward that end, Mederi wants me to stay on Methotrexate into my spinal column for the next 3 months or so, since the Leukemia is so responsive to it (in a good way).  That prospect is a difficult one for me as my quality of life has been so impacted by the chemo in the last two months.  I've pretty much had it, as they say, and just want to focus on rebuilding my body.  After all, I've been on chemo consistently for two years now.  The prospect of more lumbar punctures is, well, a VERY challenging one, especially after the last one and the spinal fluid leakage!  But this is the path that seems to be laid out before me by life, if I am to have the best chance at curing the Leukemia for good, or at least prolonging my life beyond what chemo can do alone.

That's all on the biological, physical level.  The most important focus for me now is the spiritual level which can also change biology or physical chemistry in various ways through energy, vibration and frequency.  Everything in the Universe is energy -- even cancer!  -- vibrating at different rates.  But we'll leave writing more about this for another update!

I'm reflecting today on all the people who are experiencing Thanksgiving alone, or who have lost their homes or loved ones in the Sandy Hurricane or other disasters. Some of us, I'm sure, have had to spend a holiday alone or have experienced extreme loss. I wish I was physically strong enough during this season to help those less fortunate.  When you go through a life-threatening situation, it sure opens your heart to the plight of others.   Life gives all of us just about as much difficulty as we can withstand.  Honestly, it does feel that at times that it is more  than we can withstand!  But today is a day of GRATITUDE for what is, and what we DO have...    So how do we create and/or seize those moments of joy, happiness, inner peace, in spite of our external journey?   Here's a Rilke poem that brought me deep inspiration this morning.  I hope you will find it inspiring as well on this beautiful Thanksgiving day:

Blessed ones, whole ones,
you where the heart begins
You are the bow that shoots the arrows
and you are the target.

Fear not the pain. Let its weight fall back
into the earth;
for heavy are the mountains, heavy the seas.

The trees you planted in childhood have grown
too heavy. You cannot bring them along.
Give yourselves to the air, to what you cannot hold.

 

 

A blessed Thanksgiving to each of you,

 

 

Heidi

Journey Update -- Accepting What Is

Hi Everyone,

It's been another full week.  So much is happening now, it's hard for me to keep up with it all!  There are, always and ever present, the physical levels of health and all that goes with healing.  There is the mental/emotional and all crooks and crannies needing brightness, faith, new perspectives and empowerment. Then there is the spiritual level -- a deep well with mysteries and beauty always there waiting to be explored and brought to the forefront of consciousness.... A deeply sustaining and enriching field of Grace...

I am quite thoughtful these days.....It is nearing the 6 month mark of my relapse (from my hospitalization in mid-July)  -- going from completely "healed", at least in my own perception of the Leukemia, to "hanging in the dangle."  My last spinal tap on October 25 revealed the presence of some "abnormal cells" for the first time in 6 weeks.  Dr. Polikoff said they are NOT full Blast cells (Leukemia cells) -- thank goodness -- but they did show an inexplicable irregularity of some kind. There really isn't any way to know what this means right now until I get the next results.  They will either become Blast cells or they will not.  I should know in a day or two.

This put me again in that all too familiar place of uncertainty, reminding me that we all have a bigger life beyond this physical plane and that THAT reality is powerful, complete and never-ending. When I can open into my Larger Self -- beyond the confines of the personality-driven small self, with its attachments and sense of gain/loss (duality) -- I can glimpse an expansive empowerment that is truly magnificent.  In all humility, I cannot always sustain that awareness, but even glimpses are transforming.  When going through these past weeks of pain and uncertainty, these moments can be fleeting, but then just a few minutes of true meditation can bring me back there. 

If life is a school, and I believe it is, my particular teacher has perfected the art of tough-love and doesn't allow for any inattention in the classroom these days! I picture him or her as kindly, but someone who will accept no excuses.  Only graduating into true freedom and love are acceptable. There are no cliff notes and attendance each day is mandatory!  A slight lapse of attention to detail or to excellence in this classroom is noticed and there is the Professor, at my side, reminding me that the doors to the outside of this classroom are locked and the test is on, the minutes are ticking away and there is no time to lose...  Seeing this teacher as benevolent has been a practice of late.  The teacher is the cancer -- not something to be feared, but something to learn from.

On a practical note, I had my last spinal tap yesterday, Thursday, and a much better experience with Dr. P. I won't get into the details for why he was nicer and more "humane," but suffice it to say that he received some very clear and honest feedback recently (not from me, but from someone who cares and loves me -- Peter) and I was glad to see him respond so openly.  The results of this spinal tap will be very interesting.   I have a few butterflies swarming around in my stomach. If cancer shows up, I will need to tap deeply into my intuition about the treatment I do -- stop the chemotherapy and begin the cold energy?  Will I be able to afford treatments again, given that the Mederi supplements are over 1k a month and I need ongoing labwork now outside of Kaiser?  So much to consider of late....

The spinal tap yesterday was remarkably easy in itself.  Well, relatively so for a needle going into the spine.  But Dr. P hit a nerve directly for the first time I've been getting these and I was in excruciating pain afterwards for hours.  Couldn't move, even slightly, without pain shooting through my body until about 8 p.m. -- from about 2:30 p.m.  For those of you have been trying to reach me lately by phone, I apologize for not getting back in a timely manner.  With the surgery last week, the tiredness or the pain, it has been one thing after another!  Also, my wonderful brother, Greg, is staying with me for a few days and offering some much needed support on all levels, so I've been spending my energy and waking hours with him, having wonderful talks and getting my house in order, literally. 
.
The anniversary of my diagnosis is coming up next week.  It's been two years (November 13) since I heard those word:  "Acute Lymphoblastic Leukemia."   So many days, weeks and months of living in a body that is limp with fatigue. Yet I marvel at all I've been able to do and be, despite all the challenges. My Mederi supplements arrived two days ago and Greg and I spent the better part of the morning yesterday organizing them -- a huge job and an even bigger one taking all of them at regular intervals throughout the day.  There are so many, and they are powerful!   They should help with some much-needed energy and it feels SO GOOD to be back on a really healing protocol.   It's been a couple of months of JUST doing chemo and, while it may have been keeping me in a remission-type state, it has also been tearing my body down. 

At this stage, Leukemia is considered "incurable",  so I am breaking new ground. It is nothing short of a miracle that I am still here. There are really no conventional treatments that can cure it at this point.  I am launching on a "no holds barred" approach and finding some alternative treatments that have some promise, if not for a complete cure, for a good extension of life.   The "doom and gloom" of the traditional understanding of my situation does not account for the way Grace and Divine Intervention work in the Universe, and I've reached a point in my treatment where I am utterly disinterested in the dire perspectives of convential medicine.  Where do they get any of us?  I have played them out pretty fully now.  Just going into Kaiser (I do appreciate all they've done for me!) is more difficult these days.  I need to balance my recent experiences there with the brightness of hope and beauty!

Our three hour talk this week with Dr. Stritter was fantastic and offered some great perspectives. She said that in her experience the people who do best are the ones who combine traditional medicine with alternative and that our spiritual efforts in meditation and raising our frequency are just, if not more important than biological medicine in healing cancer.  My whole focus now is on creating a "hostile environment" for the cancer to survive. The Mederi protocol, and a few other things, are a part of this.  Yes, I can still appreciate the Professor (the cancer) and not be frightened of his sometimes scary demeanor, and at the same time move on to other classes and school itinerary!

I truly believe that the Leukemia came into my life as an incredible teacher with a benevolent desire to bring my authentic divinity into a fuller experience and accessibility . For that to happen, I've had to see patterns connected to my smaller self that need deeper awareness and releasing. But it is not a "pushing away"; it is more of a welcoming of all that is and all that is to be.  When surrendering from my higher self, there is no sense of loss, but a bigger reality and encompassing of the Truth of my being. 

Someone truly wise once said that the False Self is so stubborn, so tenacious that while attending its own funeral, it would still deny its demise!   Life sometimes doesn't give us these "in your face" opportunities to dig as deep as I've had to these last two years and in the "Big Picture" I am grateful for them....at least when my perspective is clear and positive. But the very real human emotions are often there too, reminding me of my need to find and exist more and more in that deep inner well of silence and in the peace "that surpasses all understanding." 

I've been awake this morning since 1 a.m.   Finally dozed off at 4 a.m.  Some meditation, some reading.  I'm absorbing all on can on the subject of welcoming "what is" and was it to come; releasing, surrendering into a larger Reality.  From The Field of Compassion: "What I've noticed is that when I'm focused on letting go, I am usually focused on what I don't want.   If I am focused on not judging, the focus is still on judging.... The image of letting go presupposes attachment...a holding on to something that is keeping me from freely turning to receive that which is emerging.  If, on the other hand, I am guided by "let come,"  I find myself in the witness stance, attentive and open to what is emerging and therefore more able to participate in that which is incomprehensible divine mystery that wants to communicate and awaken me to deeper levels."  This is a practice that requires nurturing on a daily basis!!

Another way of saying this is that we cannot beat the darkness out of a room with a stick. We must bring in the light and then the darkness vanishes "as though it has never been."  Focusing on the positive, not on elminating the negative.....
 
To find peace whatever life brings -- isn't this what we all want deep down?  Peace and acceptance...  At the same time, we must continue to act.  I call upon my warrior self to turn over every stone in terms of treatment.  In this regard, alot is happening on the battlefield.  It's great having all those supplements neatly organized (thanks to Greg) in my kitchen, full of vibrant, life-giving ingredients from Nature's bounty.  There is some objective evidence that they have the ability to kill cancer cells. To do so, they have to be able to cross the blood/brain barrier, which not all supplements (or even chemotherapy) can do.  But most of these supplements are Leukemia-specific and help prevent damage from the prolonged use of chemotherapy.  I am super excited and grateful for this new treatment.....

“For all that has been, Thank you. For all that is to come, Yes!” ― Dag Hammarskjöld

Heartfelt love to you all,

 

Heidi

Keeping it Real....Again

Hello All,

I call it the "hospital shuffle" -- the sound of the nurses shoes up and down the hall outside my hospital room door.  Add to that the various beeps and buzzes (and there are plenty of them) and you have quite a little cacophony of sounds that have become all too familiar.  Yes, what should have been a routine, no-stay-in-the-hospital surgery has turned into a two day event for me.  But why should I be surprised?  Everything, it seems of late, has had an extra layer of complication.

The good news is that there weren't any complications due to the actual surgery, at least none that I know of.  No seizures. No stroke.  However, my blood wouldn't/couldn't oxygenate in the normal way after surgery so they couldn't release me and I needed to stay overnight. That may sound like a very small thing indeed, but we ended up sitting in the Recovery Room for hours on end on Tuesday (until about 9 p.m. I believe)....frustrated that yet again we were at the mercy of hospital regulations and a body that is showing the signs of two years of chemo-breakdown.  So spend the night I did...yet again!   Then, at 2 a.m., I woke up with a whopping sore throat  and temperature hovering close to 102 (101.9). No infection was present, it turns out, but something caused by my lungs not receiving enough oxygen during surgery.

It's now 6:45 a.m. on Thursday and I just found out I will be discharged today -- YEAH -- and have this whole debacle behind me.  I should never have had the Ommaya Reservoir put in in the first place....but then, we can't always know what consequences our logically based decisions will have.....

I know it must sound like a TINY inconvenience -- being in the hospital -- but Peter and I were again so looking forward to one of the small joys of life -- going out to eat after a day of fasting (for my surgery) and the trauma of the surgery itself. But we had to settle for hospital cuisine instead.  It was magnified because of all the small and large setbacks, twists and turns since July 11.  So now what might be "water off a ducks back" feels enormous and probably is a bit out of perspective in the Big Picture.  After all, I HAVE THE RESERVOIR OUT OF MY HEAD NOW!!!!!

OK, so I had one more night in the hospital.  That isn't that bad.  I can wiggle my toes (meaning the brain surgery didn't paralyze me, and that is a MAJOR good thing.)  But then we found out I had to stay another night in the hospital too because of the fever, and our dreams of seeing a good movie and/or eating out were dashed yet again. So we watched soccer on TV instead and I was even too sleepy for that, due to all the pain medication I've been taking.  I found that the pain from this surgery has been about 5 times stronger than the pain when they put the Reservoir into my brain about 5 weeks ago.  I've had to take ALL of their STRONGEST pain medications every few hours just to get by.  Major Ouch!

Last night Soccer kept getting interrupted by the almost constant influx of nurses and other hospital personnel which we've become oh-so-used to in recent weeks. After two years of these grey walls (yes, they are literally grey!) we have become highly sensitized to what appear to be, in the Big Picture, the small insults and injuries of hospital life.  We are just so "done" with this.....so we have to call upon our deepest inner strength, perseverance, and resilency.  Sometimes that's easier than at other times.  Life, at least for now, has set new parameters for me and consequently for Peter and we bump up against these parameters like bars in a prison.  We eventually realize that this won't get us anywhere; only chaffing and bruises on our hands and bodies.  Acceptance, Acceptance, Acceptance.  There alone will we find peace.  Accepting the reality of the present moment and not longing for "what isn't...."  At the same time, we have to allow for our human moments and let the steam out....as well as find some joy in small things.  I think we do pretty darn well with this most of the time.  But in my humble opinion we are way overdue for a little easier ride instead of the bumpy pot-hole ridden ride we've been on for the last several months.

Well, my update this time isn't all "peaches and cream" but it's important that I keep it real too...

Til soon and with love,

Heidi

Hello All--

 

Heidi returns to have a neurosurgical procedure tomorrow Tuesday October 30 about 1:30 pm San Diego time. This is to have the Ommaya reservoir (the device that caused the seizures) removed so as to prevent infections and other problems down the road. We hope she will be able to come home the same day, but this is not yet for certain.

 

We deeply appreciate your prayers and thoughts focussed on keepin her safe and on having an easy, successful surgery on Tuesday.

 

Thanks and many blessings to all--

Peter

ANOTHER TWIST!

Dear Friends and Family,

Another twist in a long, windy road... My spinal tap yesterday was the most difficult one ever... Dr. P couldn't get the needle in the right place for about 20 mins. during which time he had to try 3 different needles numerous times.  There is more to the story, but won't go into all the unpleasant details.  Suffice it to say that the whole thing, including our conversation before the tap, left me very unsettled most of the day.

He again called in the late afternoon to tell me that my spinal fluid and blood work from yesterday came back showing that there were still only 2 white blood cells in my fluid....a very good sign.  I believe he also said, and I'm confirming it this morning, that there is still no sign of cancer there.  However, he was surprised to see that my hemoglobin -- which carries oxygen to the muscle and, when low, causes anemia -- was in the "severe anemia" category and he wanted to order a blood transfusion.  So I'm writing this from the hospital where I spent the night. I came on an intuitive hunch that I should act on this quickly, rather than wait til the morning as Dr. P suggested. When I got here I felt like I had just stepped out of the shower.... my hair and sweatshirt were sopping wet.  My hemoglobin has never been so low, even during the 5 plus months of hospitalization back in 2010 and 2011.  But this was not a surprise to me with the incredible weakness I've been experiencing; it actually gave me some perspective. 

So I got the transfusion this morning at 5 a.m. and am already feeling much better.  As it was going in, I playfully thought about Halloween and vampires and above all, how there is truth to all the tales about human blood being so life giving!  Of course, I'm not drinking it....but my body, tissues and cells are having a big party right now, splashing around in the greater, thicker blood flow and reveling in the kindness of whoever donated this special gift.  As my blood volume increases so does my strength.

The other interesting thing...for whatever it is worth (it could just be due to the fact that I was so "blood starved" and was finally given a "meal" of fresh blood) sometime during the night I felt a heaviness lift.  I wasn't really thinking about anything in particular.  All of a sudden, my awareness was called to a kind of spaciousness around me and I began to notice that my "etheric field" felt lighter.  It's hard to put these things in words.  It has been so incredibly heavy since the brain surgery debacle.  By the way, I'm scheduled to have the reservoir removed via surgery next Tuesday, Oct. 30, at 1:45 p.m. for those who would like to send some positive thoughts my way.  In all honesty, I'm a little nervous as the neurologist said the other day that that area of my brain is now more sensitized to having seizures...  But one has to simply make a decision, stand with it and trust.  We can't know how things will turn out in life much of the time.   

This morning an Indian oncologist came into my room and I had a delightful conversation with her about alternative treatments, oncology, and how I want the alternative-conventional approach (not the either/or approach), I want Kaiser to be an ally if I am to go off of conventional treatment for awhile or forever.  For the first time since I've been on this journey with Leukemia I felt I had found someone who I could (finally) talk to on the staff here about my situation.  I am seriously considering changing oncologists after what happened with Dr. P yesterday. He is simply not wired to step even an inch outside the conventional Kaiser perspective and I need someone who can support me if I do.

These twists and turn seem to happen at least once a week.  Last night was a hidden blessing.  Again, without going into all the details, I would not have gotten a badly needed transfusion if I hadn't come in come into the hospital, but had waited til this morning as Dr. P suggested.

Oh, on Dr. P's 5th or 6th attempt to get the needle between the vertebrae in  my spine he said, "You sure are being tested."   I guess that speaks to the only thing we have control over -- our thoughts and attitude.  I have to admit that I've been at an all time low off and on in recents week, much of which has been caused by my flagging energy and all the weighty decisions on my shoulders.  But on the other hand, have started a meditation during which I allow all the happy, peaceful and contented memories of my life to free-float up into feelable meditation moments, almost like they are happening again in real time.  I've noticed how readily and easily the body/mind can realign with these and how they have an almost instantaneous effect on consciousness AND on the immune system.  The body WANTS to heal.  We are hard wired for health, joy, love. It all seems so clear during these meditation moments, and so far away when mired down in the "reality" of pain, lack of sleep, and life/death decisions...

So I'll say adieu for now...... I'm sure you'll be hearing from me again soon!  And thank you to all who continue to follow my human drama and be such amazing cheerleaders rootin' me along the way!  Thank you too for those of you who give my sweet Pete your dear friendship, presence and support.

Heidi

Hi Everyone....
 
To say that this is a time of unexpected twists and turns is an understatment!  When we woke up at 4:30 last Tuesday morning for our trip to Ashland, we learned that our flight had been cancelled!  My Mederi appointment that day was the only time they could see me.  Peter had rescheduled all this clients last week so he could take the week off.  We simply couldn't "reschedule" to another week.  We moaned and groaned over our lost adventure as we finally realized, after two hours of researching other flights out of this area, that we were simply unable to go.
 
We ended up having a SKYPE appointment  -- almost 3 hours -- with a wonderful doctor (and human being) there. His humility, authenticity and thoughtful intelligence about cancer were deeply moving.  I was very encouraged and relieved not to have been hearing all the doom and gloom scenerios I've been hearing from convential medical practioners.  Dr. Bricca's personalized protocol arrived yesterday and I'm still digesting it today.  It is clear that wholistic oncology has evolved in a big way.  It's not "shooting in the dark" and hoping for the best.  They have studies, have seen results, etc.   These are powerful anti-cancer botanicals and clinical grade supplements. My particular form of cancer is rare, he said, so there really aren't statics for my type of cancer, but they (Mederi) have seen positive results that can prolong life with the blood cancers, if not create the inner "environment" for a cure (at least, this is my hope)! This is VERY good news.
 
Meanwhile, I'm waiting to have my appointment with Dr. Gwen Stritter, the doctor who advocates for and researches the best treatments available on the planet for people in my situation.  That will happen next week.  So things are coming together.  When I should stop the chemo is still a question, as is how Kaiser will respond at that time to helping me with various diagnostic tests I will need even though I'm not receiving treatment from them.   It would be very expensive to have weekly blood tests that are paid for "out of pocket" in addition to some of the other treatments they are recommending, plus a whole host of supplements each month...
 
I'm still getting the weekly intrathecal injections of chemo into my spinal fluid and have one today, Thursday. Have had about 5 and with all the other medications I'm taking -- anti-seizure for the botched brain surgery, an antibiotic, still weaning off of the steroid Decadron, etc. -- am extremely weak.  It's difficult, for example, to wash dishes or do anything that requires muscles.
 
I don't have the full functioning of my face back and have to use eyedrops constantly (so my corneas don't get damaged), am still drooling out of one side of my mouth, I've been told I have to be on the anti-seizure medication the rest of my life (though I'm not accepting this) and one of the side effects of this medication is atrial fibrillation, which has become more frequent -- once or twice a week as opposed to once a month.    Plus all the decisions that still need to be made, the daily weakness (it's hard to just walk to the kitchen)....  It's imperative to snatch those little moments of joy when they show up.
 
One of those moments was when Peter and I, very much in need of a "get away," drove all the way up to Carmel (through Santa Barbara, San Luis Obispo, Big Sur) this past week, as an alternative to Ashland.  There was one foggy morning along the 1 highway which hugs the cliffs of Big Sur. Suddenly the sun came out and lit up the side of the mountain where there were lots of shrubs that spiders had woven magical, dew-drenched webs in.  We stood there in awe at nature's "light show." The dew sparkled like lanterns in a distant city....too numerous to fathom and too brilliant to ever forget.  I will carry that memory always. 

Dew

Transparently dimensional

A Universe

In a tiny Drop of Glow

Its wondrous luminosity

A glimpse of Worlds Unseen

 

More soon.  

 

Love to you all!

 

Heidi

 

 

A Beneficent Immensity....

A Beneficent Immensity

of No Thing,

An Unsurpassed Quiessence,

Surpassing.

-- Peter (written the day of my surgery)

 

 



Peter wrote this poem about 3 weeks ago, on the day of my surgery.  We had been reading from The Field of Compassion together and discussing the mysteries and majesties of this Universe we live, breathe and have our being in.... It so simply conveys the unconveyable (in words) magic we see unfolding everyday, from the first glint of sun on morning dew, to the blackness of the sky at night and how starlight is reaching us from such a long, long time ago when weren't even here on the planet, or at least not here in this form...to the beautiful picture above of a sunrise over Mt. Shasta.

We're Off to Mederi Tomorrow:

We are excited about our trip tomorrow to Mederi Foundation and to Ashland, OR.  Equally important is a much needed  "get away" into the healing arms of Nature and Beauty.  We have been through so very much since July 11.  Now it's time to turn the page into a new chapter of healing.  I can hardly wait to begin hearing something positive, hopeful, encouraging about this form of cancer instead of the "dead end" scenarios they convey at Kaiser, with all their best intentions.

Authenticity:

"Let him who seeks continue seeking until he
finds. When he finds, he will become troubled. When he becomes
troubled, he will be astonished, and he will rule over the All."  -- The Gospel of St. Thomas

Just some recent but powerful reflections on my own healing journey....

We "spiritual" folk often run from our shadow side -- those darker corners of our consciousness that are not pretty or inspiring. They may, in fact, be deeply "troubling".  To me the above quote refers to self-honesty and authenticity -- the impulse, backed by action, to face who we are completely.  I'd like to think I have had a lifetime of doing just that... but this Leukemia has shown me so many different sides of myself -- some not all that pretty.  Some, on the other hand, that I have been inspired by.  It has been a true blessing in disguise in that regard.

We've heard and read, many times perhaps, that "God watches the heart" and that out of the heart springs our actions and deeds. Peter reminded me of another quote today that it is our actions that change our thoughts....  Acting on our good intentions creates new pathways in the brain.  We "see" ourselves following through and not perhaps just passively affirming something, wishing it or merely "thinking" about it.  We also see how we actually can re-grow brain cells and can change the structure and function of our brains by the way we think.  Yet, how many times have I thought about change for years -- whether it be a not so healthy habit, or a more desirable one I want to incorporate -- and not done it?  I know I'm in that category, even now, as I desire to re-energize my spiritual practices....  "Freedom is our capacity to seek meaning and stake our lives on what we have discovered.  It is the existential that enables us to make choices that evolve us to live responsibly and co-creatively."  (From "The Field of Compassion")

Choices that evolve us....  These choices may, in fact, mean looking deeper at our fears and "unconscious" beliefs we may not even know we have!

Dr. Ernie Rossi, a pioneer in the body/mind movement and a student of Eriksonian therapy, called the  unconscious a "blind giant"when I spent a wonderful weekend with him this time last year.  The unconscious never lies to us and has VERY significant things for us to look at more deeply.  Those of us with strong spiritual inclinations and practices might be tempted to turn away, denigrate or deny our shadow side  (an act also known as spiritual "bypass")....little knowing or acknowledging what a mighty influence the unconscious has in healing and guiding our lives, even though we know this on an intellectual level.  Have we ever noticed that, when our shadow is unacknowledged (anger, projections, etc.), it has a way of "leaking out sideways" either in health issues, relationship problems, self judgments, etc.?  Or we try to "affirm" them away.  By the way, I am a HUGE proponent of the use of affirmations. It is a beautiful form of soul-art.  Yogananda refers to affirmations as "vibratory prayer-seeds."  They do have the power to change matter, as visualization does.  Sometimes we may need more than that.... At least I feel I do right now...

Peter and I are showing up to this cancer thing as an opportunity for much deeper growth on all levels of being.  This morning we had a wonderful sharing about the vital importance of bringing all parts of our beings into healing, which includes the spiritual dimension... which IS, at least in my belief, the most important, although not at the expense of the others.  My facial paralysis, for example, happened after two weeks of the most intense and heartfelt daily affirmation practice that I've had in my whole life.  There were and are deeper areas of faith and letting go that I have had to reach....that, and giving the Divine Forces a chance to work uninterruptedly.  The timing of the paralysis, and surgery that I survived due to your prayers, the various unexpected or spiritually "not logical" twists and turns have given me plenty of opportunities to stretch to those deeper areas of letting go and faith...

Using affirmation is certainly what I have "known" throughout life.  But recently I have seen that there is a powerful energy competing with this spiritual "knowing" that is finding its way into my unconscious/subconscious during my dreams -- fear.  I'm not one to consciously dwell on fear, but I am beginning to normalize fear as part of my journey and I'm finally willing to be honest with myself here.  My dreams last night make it impossible to ignore....

There were 3 "recurring" dreams where this energy came, well,  in the form of a nightmare.  Yes, it is humbling to admit that even with all my positive thoughts, courage, and beliefs, I can still have them.  Three dreams, all 3 of which Peter had to wake me up because I was in obvious discomfort!  In all three I was being pursued by an "invader" who wanted to take my life.  Of course, I know that I wouldn't be human and facing a situation like this without some fear.... fear of death, fear of pain....fear of loss..    I am now almost off of one of the drugs that has been keeping me in remission -- Decadron -- and face some treatment altering decisions soon.  The Chemo has been a sort of "security" blanket for me.  As I get off of it, the pain at the base of my skull and behind my ears has come back to a degree.

I'm a strong believer in looking at our shadow side as well as affirming and visualizing our Light.  If fear is there, denying or repressing it won't make it go away.  It will show itself, as it did to me last night.  I need to be with it, integrate, make "friends" with it.  This too is a way of reconciling opposites.  It doesn't mean I have to identify with it, dwell on it, or let it continue to have power in the unconscious domain by ignoring it.  In my dreams last night there was some person, or entity, trying to take my life.  This morning I realized that whatever that was in all 3 dreams is a part of me needing acceptance; it is not something outside of myself.  Push it away?  Deny it?  That would be to deny a part of myself.

Sometimes we may feel in the "grip" of these unconscious forces. We may not fully know what they are or how to overcome them.  Just a simple letting go, turning over, placing them "at the feet of God,"  or whatever practice we may have when we bring in the higher energies of healing and light, is a choice toward evolving through them, I feel. At least this is so in my case.  I do not mean to preach here what is best for everyone.  We all will find our own way.

On another note, Dr. Polikoff called me on Friday to say that, for the 4th week in a row, they cannot find any cancer cells in my spinal fluid.  During my appointment last week, he was so heartfelt in his communication; more than at any other time.  He said, "Did being a nun for so many years help you with your fear of death?  We all have this fear, on some level, regardless of our religion."  Well, maybe some of us don't.  I hadn't really considered if I do until that question and the discussion with Peter this morning.   

When a nun I would read, and still do, about the beautiful heavenly realms and how we can live, after our perhaps difficult sojourn on earth, closer to our true nature.  We will experience deeper freedom and joy, surrounded by loved ones we have known for eons, and will have access to higher knowledge.  Wow!  Yogananda's description of the astral world is stunning.  Why wouldn't we want to get out of this world of pain and turmoil?  But he (and many others) have also said that human birth is the greatest gift and that we make the most progress here (in distinction to "there") because we have to grapple with and overcome our fears, our unforgivenesses, judgments, etc.  Leukemia, particularly a cancer that has so few convential treatment options, is bringing me to a new level of self-honesty.  If not now, when?  This too takes courage and, in the Big Picture, I am so grateful for this inner journey.

Most religions or spiritual paths seem to have a glorious description of the afterlife where we find comfort, peace and can make some sense out of our lives in this world.  I'm fortunate to have had some experiences in childhood, actual experiences, as I'm sure many of you did, confirming the existence of an astral or heavenly realm.  People who have had NDE's pretty much all say "there is nothing to fear" -- all is Light and Love.  It is attachment to the finite, according to many, that creates the pain and fear of leaving this world.  All I can say is that until I went through this relapse and thought about leaving my loved ones, I didn't really acknowledge my own sense of my potential loss and therefore my attachments.   On the other hand, I also have seen how very much I desire to live, love, dance, serve and express uniquely what is inside and what a true gift it is to be alive in this realm, and to continue to evolve consciously.   I hope to have many more years to do that and if not, to let go gently and with great love.

I remember a story of how Yogananda couldn't be around those he loved (e.g. Sister Gyanamata) when they were passing because of his attachment. The integration of the human and the Divine has always been deeply inspiring to me....I have loved hearing stories like this because I can relate.   Yes, I am attached -- in other words, I can love FULLY.  I can appreciate FULLY.  I can support FULLY.  I am here in this world FULLY, with all my strengths and foibles.  I try not to distance or separate from others, fearing I am becoming too attached or because of some belief system.  Always the context for living love is there underlying it all.....

Well, a rather lengthy blog entry that I have used more like a journal.  Thanks for taking this walk with me (those of you who have made it to the end!)....  More updates after Mederi....

Heartfully,

 

Heidi

The Wind in our Sails......

Hi Everyone....

I feel like we caught a wonderful, cool breeze in the sails of our little boat crossing, what has seemed at times, like a huge ocean without a shore ahead.  I write this as a delicious Fall breeze blows through the window at Peter's house, where I've been since that whole surgery "thing" happened two weeks ago.   We've been up since 5 a.m. talking, sharing, reflecting and getting ready for the Mederi Foundation.  We realized also that we have to deliberately add relaxation, fun, play, nature to the mix, which we'll be doing in Ashland next week (Crater Lake, Mt. Shasta, the Redwoods, good restaurants, etc.)

An answer came back from that Dr. Gwen Stritter (http://strittermed.org/SMC/?page_id=2) and I've decided to hire her.  She seems truly amazing in her research and, with all the choices that I face, would be an indespensible resource for me now.  I wrote her last night about the Mederi Foundation, asking if she had heard of it, and here's her very encouraging response (Donnie Yance is the founder):

 

Yes, I have. Donnie Yance is a "rock star" in the holistic oncology field. If you can get an appointment with him, you'll be in excellent hands!   That's one place I find to be quite intriguing and I hope to visit some day ...

We're honing in on my choices now.  The City of Hope doctor sent an email yesterday, after discussing my case with 10 other oncologists on the staff, saying that there is a high likelihood of the Leukemia returning and a low chance of being cured through the bone marrow transplant, but they nevertheless still recommend it.  Truth be told, I have all but made the final declaration of my decision to the doctors that I do not want to go this route.  I am still in remission and most likely will continue with chemo through October to keep it that way.  We are finding other potential future resources and options.  I have been told by Kaiser that I am VERY responsive to the chemo I'm on now which is good news....but I do long to begin building my body up instead of tearing it down with chemo.  Such a mixed bag, isn't it?  (For example, in the nasty side effects dept. I could hardly walk the last two mornings because of such acute pain in my knees caused by the chemo.)

The MAIN thing lately is that I'm getting my spirit back.  I no longer feel despair or lack of hope -- so important on this journey.  Deep down I still feel I'm meant to be here for some time yet, and I even feel a sense of purpose and service in my personal journey.   These are precious gifts.

Protection, Where I can Find it:

On a humorous (and almost humiliating!) note......   The day after the very sobering meeting with the Bone Marrow Transplant doctor, Peter and I had breakfast in a quaint little "town" nestled in the foothills of Pasadena called Sierra Madre.  We needed something light..... It was wonderful.  I'm having a bit of a last "hooray" with my diet these days as I know I'll be doing a very different diet very soon. I got a hearty stack of banana/pecan pancakes.  I  truly never indulge like this and it was fun.  I loaded up on the syrup and butter.  After feasting, as we nonchalantly strolled through this charming mountainside village, I went into Starbucks to use their restroom.  Several minutes later, I emerged and moved through a flank of bicycle riders who had subtly quizical looks on their faces as I walked by, which I didn't understand at the time....

Just minutes later, crossing the street, a gentleman with his date (sitting at a sidewalk cafe), darted up and towards us in a flash, self consciously, but helpfully, muttering:  "The paper, Sir.  The paper, Sir."  Peter didn't know what the heck he was referring to until the man grabbed something from my rear area and handed it to Peter.  It was several inches of an ivory white "Protecto" toiletseat cover which had been, well, oddly tucked into my pants and floating, like the train of a wedding dress, down Sierra Madre Ave.   Once we got over our initial shock and embarrassment, Peter kept pulling out more of the seat cover (which I thought would never end!).  We staggered, laughing, back to the car. We had gotten our lighthearted reprieve from the day before AND a belly-full of sugar.

I decided to postpone surgery on removing the reservoir, but have definitely decided to remove it.  I am falling into the arms of the Universe and all the magic healing it contains.  When I was just a child I used to have recurring dreams of changing my vibrational frequency and l would levitate, knowing that I was being healed.  It was just a matter of fact. I can still remember how that higher frequency felt and I recall it now, during meditation.   It's like the dream happened just last night.  We have such inner resources available to us.  I'm returning home to some truths I knew very, very early in life. 

Today I get another intrathecal dose of chemo into the spinal fluid AND a bone marrow biopsy, both very painful as you know.  Thanks in advance for your positive thoughts....

We'll be visiting Mt. Shasta next week.  Here's what John Muir said about this beautiful area of the country:  “When I first caught sight of Mount Shasta over the braided folds of the Sacramento Valley, my blood turned to wine, and I have not been weary since.”   — John Muir, 1874

Wow.....

Love to you all.....

Heidi

Some Good News and Heidi's Current Needs

Update on Heidi’s Condition and Current Needs

First for some VERY welcome good news: Her spinal fluid is tested each week for the presence of cancer cells. We just received the results from October 4 and they are still unable to find any! This is 3 weeks running and means she is still in a technical remission which is hard to sustain according to Kaiser. Somehow, Heidi continues to respond extremely well to the chemotherapy they are giving her and not everyone does. A good sign and a remarkable feat with a cancer relapse that Western medicine says has a zero survival rate. 

Thank you to all who contributed to her care during this time and who have kept her in your supportive thoughts.  Your donations were primarily used for the cold energy treatments which saved her life, the many supplements she was on -- some very expensive -- as well as having home health care when she most needed it.  She couldn’t have made it without your support.  It provides options, which are so important right now.

Her Current Needs:

 For those of you able and inclined to contribute to her ongoing care, here’s where we are now:

We will be flying up to the Mederi Foundation Clinic in Ashland, OR, this next week and, hopefully, depending on what we learn from them, will begin a treatment plan for at least the next year.  Estimates are that this will cost anywhere between $500-$1,000 extra a month.  Heidi will also begin the cold energy treatments again which she hopes to resume at a discount rate, given all she spent over summer.  There is also the possibility of hiring an MD who “scours” the planet for the latest and best treatments – some that may be available, for example, in Germany or require long distance travel.  We do not know what her fees might be but have contacted her to see if it’s a good fit.

We are taking it one day/one week at a time now.  She is still continuing with the Kaiser treatments of chemotherapy to keep the cancer at bay and providing more time to explore other options.

There will probably be ongoing acupuncture treatments in the next few months for her facial paralysis, which, by the way, is slowly improving.  Her facial muscles, however, have atrophied to a degree so there is a need here for sure.  A Chinese acupuncture technique called “cupping” can help with this.

Heidi’s spirit continues to shine so brightly through this extremely difficult journey.  We are all inspired by her resiliency.

 

With love, gratitude and grace,

 Peter

Being Real: A Tough Time

My dearest friends and well wishers,

I've come to a place in my journey where it is calling on the deepest surrender and peace I can muster. My father said once, laughing: "No one gets out of here alive." The impermanence and uncertainty of life is shining its spotlight directly into my soul right now. We will all be here one day, and it doesn't necessarily mean this is my time. But it is real, raw, and has me realizing, perhaps for the first time since the diagnosis, that our lives are utterly, utterly, in the Hands of God. I keep thinking I've gone to the deepest place inside, and then another experience comes to show me even a greater letting go.

Perhaps that is the most courageous act we can ever do in life....lettiing go. Letting go of the False Self. Letting go into the Great Surrender of Life and transition. Trusting that all is OK, yes even death and letting go of form, as we know it here. We certainly know this intellectually. Lord knows I taught it, meditated on it and generally kept it as a comfortable "belief system" ideology that seemed far into the future. When it comes (potentially close), like now, it is a whole different ball game......

I never thought I'd be here, yet here I am. I thought some special blessing would surround and infuse my situation with unbounded Grace and Healing....and it still may.... As things are unfolding, however, my choices seem more limited, except one: surrender (which doesn't mean giving up) into the Love that truly is our Nature.

If there's one thing I have experienced through this (besides pain -- ha!) it is that I am loved, especially by my sweet Pete. There have been such tender moments together, and scary moments, and heartening moments.  My life is so blessed -- beyond all words -- to have him by my side through this.  His resilency is mighty.  His heart and his caring glows magnificently.  I learn from his giving every day.  Last night he said, "You know, this situation is so very hard, but I wouldn't want to be anywhere else, doing anything else." 

I have never felt so loved in all my life. I have also experienced a Grace that has been transforming on a core level that goes way beyond words. It is an energy that uplifts, awakens, fortifies, inspires. It is the heart of Goodness in the universe. I have been fortunate to experience this on a level much deeper than mere intellectual understanding or belief.

Where to go from here?

Peter and I went to the Kaiser in LA that works with the City of Hope this Friday to explore my options about a bone marrow transplant -- which, as I've written before, is the only potential cure from a Western perspective, and very little at that -- 10-30%. The mortality rate from the transplant itself is 15-20% within the first 6 months, and it is a grueling procedure which greatly affects the quality of life. When we asked if anyone my age with relapsed Leukemia in the spinal fluid had been cured through City of Hope we did not hear a resounding "yes," but rather that a woman younger than me had. And they work with thousands of people.

As Grace would have it, we met with the warmest, most humane "Western" medicine doctor we have ever met in our lives. At the end, she hugged me for a full minute (which is long for a hug!) and said I was a walking miracle. When Leukemia comes back into the spinal fluid, as it did for me in July, it can take a life in a matter of weeks, she said. But here I was, walking into her office, out of hospice, and looking pretty darn healthy for being so close to leaving this world just 3 short months ago. My case is definitely intriquing and "miraculous" and there is hope and promise, she said. I have the cold energy and chemo to thank for that, and many, many seen and unseen blessings -- as well as all your prayers.

So....why not just go back to the cold energy now and eradicate all of the cancer cells? The decisions I face now are so difficult for some reason. The cold energy, at least in July-Sept, could not (did not) eradicate all of the Leukemia cells. Thus the facial paralysis. I needed good 'ol chemotherapy to get me back into remission. Both definitely extended my life. I know that now more than ever. I can't do chemo with the cold energy, they tell me (and I believe them). I have to choose. It appears that Life may be asking me to remove the resevoir from my brain and it's a better delivery system for the chemo. I was going to have the surgery tomorrow, but decided to put it off for two weeks, if it doesn't add to the risk factors. Am waiting to hear back from the surgeon.

All these twists and turns (some quite positive) make a clear path of treatment all the harder. Peter and I will be going to the Mederi Foundation in Ashland, OR and they have been encouraging....but we haven't been there to really see and understand what they can do for me. Do I stop chemo now with the spector of the cancer coming back into my brain and creating more stroke-like symptoms?

This is my soul's gripping journey; not an easy one to be sure. Dr. P said last week (not to minimize other cancers), that another form of cancer would have been easier to tackle.

The small self wants certainty and form. I read a beautiful quote this morning from an amazing book called The Field of Compassion. I highly recommend the book by the way. The quote has to do with living in a non-dualistic state. It's not a quote one can "pin down" but rather one that requires practice and embodiment as a state of awareness that doesn't separate life's experiences into categories of good and bad (i.e. moving toward reconciling seeming opposites). We are all going to face our own endings in this finite world, saying goodbye to loved ones, to so many things and shifting our forms from material to ethereal....... "What is life? It is the flash of a firefly in the night. It is the breath of a buffalo in the wintertime. It is the little shadow which runs across the grass and loses itself in the sunset".   ~ Crowfoot, Blackfoot warrior and orator

Anyway, here's the quote I read, and I will end my latest update here.....

"The Unitive sees happiness and unhappiness as part of the necessary, temporary (and endless) fluctuations inherent in the human situation. Instead of seeing life in a dualistic way, where some things are appropriate and desirable while others are inappropriate and undesirable, the Unitive experiences the world as a place where all opposites 'arise together' and 'go together....' The Unitive watches as positive turns to negative and back to positive, endlessly -- and necessarily."

I love you all,

Heidi

The Face of Despair

My Fellow Travelers,

I'm alive.  I made it through the most hellish week of my life, somehow....  It wasn't a dream, but I recall myself in a vast desert with a grey sky above.  There were storm clouds and there was lightning.  I kept calling out "Follow me to the Light.  Follow me to the Light."  Who was I calling to?  I have no recollection.  The lightning was my brain mis-firing due to a mega-dose of chemotherapy into an area of my brain it shouldn't have gone to through a misplaced catheter.  All I remember were the nurses and Peter standing above me in the doctor's office after the injection of the chemo into my brain.  "Did you see that?  She is having some reaction.."   "I'm having a reaction?"  I asked myself.  What are they talking about?  That was Thursday morning around 11:30 a.m.  The next thing I knew it was Saturday morning at 8 a.m. at  the Kaiser hospital.  What had happened in the intervening hours I am only now beginning to piece together.  It was devastating.  My sweet Pete wondered if I'd wake up again and be able to recognize him or have any personality at all.  Friends thought I would die. 

What happened were multiple seizures and a stroke.

This is beginning to sound like either a science fiction novel or a horror movie now, but it happens to be my life.....a life I never thought I'd be living.  I fell into the 2% that this happens to.

So, life showed me a deeper face of despair and complication.   Since Saturday I have not been able to talk to very many people.  I have been able to find my center and even a sense of (slight?) joy in all of this.  Things made sense.....until last week.  Then everything crumbled around me.  I couldn't understand why, with all the prayers, I would fall into that 2%.  But maybe those prayers saved my life.

I do think of people who go through far worse than I.  I am mindful of that.

The Methotrexate into my brain has a HUGE effect on my mood, as do the powerful steriods I've been on (and am now tapering off, thankfully).  Dr. P said they could find no more leukemia cells in my spinal fluid.  So I am in remission again.  But it is a fragile remission according to Western medicine.  Leukemia always comes back, he said, even 90% of the time with a bone marrow transplant which I've decided not to do.  What is ahead, I feel, is more cold energy as a maintenance therapy and a clinic in Ashland, OR called the Mederi Foundation.  They have had some good success with Leukemia.  All I want to do right now is move as far away from the events of last week and into strengthening my immune system and regaining a better quality of life for however long I have.  I have not given up!

I've always been oriented around the question "why" An impossible question. Maybe the better question is "what"?  What am I to learn here?    My spiritual background has been oriented that way:  karma, soul lessons, purpose, meaning.  But in this world of duality, this can be a slippery slope, I'm seeing.  Sometimes we are simply not given to know the whys and wherefores.  There is only acceptance and as much surrender as we can muster.  Someone said recently "99% of life is out of our control."   The 1% is how we face what happens.  I saw a side of myself come out the last few days that I had never seen before.  It was humbling.  I can only feel that this new level is showing me what people feel when they are in complete despair.  I must say, I have not known this level before in my life.  People go through horrendous things.  Perhaps I've needed to feel what the pit of humanity feels.  Who knows?

Right now it feels that I have more impossible decisions ahead:  leave the reservoir in or take the risk of removing it?  That's for starters....and I have to decide very soon.

Your continued loving thoughts and prayers are welcome.

Heidi

Day After Surgery

 

"Ah, as we prayed for human help, angels soundlessly,

with single strides, climbed over our prostrate hearts."  RILKE  July 11, 1912

Who could have known, that exactly 100 years before my Leukemia relapse and entry into the hospital -- to the day! July 11, 2012 -- the poet Rilke would write these beautiful poetic words about the Grace of the Universe that knows our prayers and deepest needs even before we ask and is more ready to give than we are to receive!

I find this truth so uplifting, so heartening, so compelling, that I am rendered speechless -- an interesting feat these days with this potent steroid I'm on!

In the last 50 hours or so since I awoke and traveled to the hospital at 3:45 a.m. Tues. for the surgery, I've probably gotten no more than 5 hours of sleep, intermittenly -- the pain has actually been greater than I anticipated.  But I've enjoyed the "awake" time to a degree and the blessed man-made painkillers too.  They are a real gift at times, I must say.   To feel the pain melt away....   Ahhhhh..... 

We are laughing at my new name:  Ms. Frankenheidistein and the fact that I won't be needing a Halloween costume this year.  You should see all the 24 silver staples in my skull... in tidy little row, like glistening braces on skin-teeth across the right quadrant of my head!

I will make this short for today.  I see Dr. Polikoff tomorrow for my next chemo treatment directly into the reservoir they surgically implanted in my brain.  Actually, I can't imagine now what it will feel like because it is so very sore today.  Embrace the pain, that's really all I can do at this point, and hope to get into remission again as quickly as possible!  No more lumbar punctures!   Hooray!!!!!

I have a list of good questions for Dr. P tomorrow so will surely have more to report soon.  But wanted to write briefly today to thank you for being on my awesome prayer team, answering my call for human help with your angel hearts, as the beautiful quote above expresses.

Here's to our mutual transformation through the very specific dances we are given to quiver through and manifest in this Divine Mystery we call our lives.....

LOVE,

Heidi