Tuesday, January 29, 2013

Good News, and it came FAST!

Good News!  Dr. Polikoff called me this morning to say that my white blood count had dropped from1600 in my spinal fluid (it should be zero) to just ten! in not even one week  -- and that's without any chemo!  I just did decadron, a powerful steroid along with some cold energy.  I'm well on my way to another remission, and this one, god-willing, will last a lot, lot longer.   I'm so encouraged!  Just wanted to share with everyone how thrilled I am that my body is so responsive to healing, despite all it's gone through!

Love,  Heidi

In Went the Rituxan!

Hi All,

I'm here to say that the catheter was indeed placed correctly!    I'm also here to say that Rituxan had way more side effects than I accounted for.  I went in for the appointment in a very positive place, fully open and accepting of, actually EAGER, for this new treatment to begin. About a few minutes into the treatment HUGE waves of nausea shot through me and I begin to drive heave uncontrollably.  My entire body became wracked with chills, spasms, broke out in a cold sweat.  My eyes could no longer focus and I got a splitting headache.  This lasted for five agonizing hours  But I did not seizure!  Peter and I wondered, later, if I had infact had a small seizure and the doctor confirmed this was possible.

We were in the office til injections of zofran, an anti-nauseous medication, and dilaudid for pain could be administered and take effect.  Dr. P couldn't even give me the entire amount of Rituxan he had planned because of my reaction. He had to abort. Plus, he told me when there that he wanted to give everything to me with methotrexate, rather than cytarabine, which he also couldn't do yesterday.  I go in this Thursday again for just the methotrexate.  We will have to take it much slower now, unfortunately.  I'm just super sensitive to these chemicals. 

Wow, all of this hit me over the head (literally) like a sledge hammer.  So much intensity and suffering for such a prolonged period now! There is no where to go with it except into the arms of the pervasive Goodness which is there, though not easily seen or felt during moments like this.  I keep humming my little mantra:  "My Life is Yours."  "My life is in Your hands" -- We don't, I feel, have a separate life outside of the Divine Graciousness and Benevolence, though it is SO easy to feel that we do and to wonder why such suffering has visited my life and taken up came there!.  I have certainly read about the suffering of saints and sages; their mighty tests seem to tower above anything I could possible cope with.  I don't mean to compare myself with them by any means. In My own life, however, I pray more often now for release of pain.  Not death, but courage to continue the fight.  My hope is that I can reverse the cancer soon enough to get back on Mederi and Dhoudup products and begin building my system up again.  This has always been my goal. Seems just when I begin to get there, another setback happens.

On a positive front,  here's the picture of my completed white Tara.  You'd have to see her in person to see all the "twinkle" as a photo doesn't pick it up.  She symbolizes health and longevity and it's been healing working on her.

 
 
Your ongoing prayers, love, friendship, goodwishes, and support mean a great deal to me now.  Thank you!!!
 
Heidi

Thursday, January 24, 2013

Stars, Heaven, Hearth

Hi all,

I get discharged today!  Catheter placed perfectectly according to the surgeon.  All is set for chemo to begin this Monday morning with the experimental, but promising, Rituxan, in conjunction with another chemo drug called Cytarabine, which I was on in the early days.  Mederi Clinic, Dr. Gwen Stritter, and the new Tibetan doctor, Dr. Dhoundup are all lined up and behind my new plan.  I will get two treatments of this "chemo cocktail" for eight weeks.  Then down to once a week indefintely.  Am not sure yet how this all will play out yet.

I love the positivity of this statement re RITUXAN, taken from a study out of MD Anderson Cancer Center in Houston:  
 



Given the prolonged Central Nervous System remission status after the
administration of rituximab, it is reasonable to assume that
sustained CNS relapse-free status is due, at least in part, to its
therapeutic effect.
Remarkably, rituximab administration was well tolerated in
our heavily-treated study group, with no clinical evidence of
neurotoxicity after a 24-month follow-up period.
 
 
Thanks to Dr. Stritter for finding this treatment for me through her research!

As soon as the Leukemia cells are under control again, I will resume my supplemental treatments that boost the immune system, working with Dr. Bricca, Dr. Dhoudup, with occasional cold energy, copper chelation, to induce anti-angiogenesis, as before.  I feel a flow with this direction.   The fight continues and all my resources seem to be falling into place rather effortlessly.....  Hmmm.....let me just add that it takes tremendous effort to pull all of this together, go to appointments, eat well, etc. etc.  It is a full time job!  Peter and I are at it every day these days.

Eight weeks of  two chemos a week! Rituxan is an antibody, however, and while it does have side effects, they will be able to give me lower doses of everything because of the ommaya.  That should help.  Nothing like methotrexate I hear.  Fingers crossed.   Alot of trips to the chemolab in San Marcos coming up in the near future! 

And in the midst of this, I have a fairly large art show coming up the weekend of February 9-11, which I'm really looking forward to.  Am just finishing up a painting of the White Tara, which I'll post here soon. 

Stars, Heaven, Hearth:

Speaking of my new painting,  there is something stirring in me these days.  You've seen those beautiful globes that you turn upside down and glitter comes raining down?  They are usually Christmas scenes, and the glitter simulates snow.  I'm using lots of sparkling material these days in my paintings and it is reminscent of those early childhood experiences when I was just 5 or 6 years old and saw colors not of this world, literally.    There are no words to describe the colors,  so unusual.  The hues and tones;  "opalescent" is the closest word that comes.

This stirring reminded me the other morning how there are parts of us, deep core parts, that are our "essence" and that follow us along in life no matter what happens....like a wispy trail that speaks to us, moves us deeply, and provides a "vision" of greater things.  It might be the early morning sunlight on a spider web.  It might be a mysterious fog bank hovering low in the valley on a crisp Autumn day.  The stars in a dark moonless winter sky.  The hush of silence. A spacious windswept breeze over sand dunes. They never really leave us, despite the times of feeling forsaken, empty, depressed or sad.  Or if they do, for a time, they tuck themselves behind our conscious mind to spring out again at just the right moment when everything seems lost.  I had one of these moments the other morning, the day of my surgery in fact -- yesterday! 

Why, oh why, would I have to go do this surgery again?  I asked myself.  Then, all of a sudden, I saw that "twinkle" again in my painting, and I reflected in the early morning hours that disease, hardship, suffering, whatever, can never take those parts away from us.  They are our special "bonding" with the Light, with the divinity within, with this inexplicable oneness we experience now and then in the synchronicities of life. 

There was a peace that came.  This "essence" is more who I am than anything else, even when stuck in darkness for a time.  I can still go back to those early childhood memories, feelings, attunements with something Vaster. How remarkable and mystical it all is!  Then I'll get caught up in the rough and tumble of life again and seem to lose my footing.  But it's all there, tucked in that special God-given place, that sacred void or emptiness that is Fullness itself!

So I move onward into these inner stars, and I rest in the arms of home and hearth of loved ones who keep me warm and help give me strength.  There will be a light at the end of the chemo-tunnel.,. someday.     It's been a terribly long road.  Sometimes I simply can't believe all that has happened and how much life has changed. 

With love to you all,

Heidi
 
 
 
 



 
 
 
 
 


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!







Tuesday, January 22, 2013

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

Monday, January 21, 2013

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

Friday, January 18, 2013

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!



Friday, January 11, 2013

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