A long overdue update

Dear Friends and Family,

My life has been quite a ride in the last few months. In addition to the broken hip in May, now mending, but not entirely, my entire house flooded  (with 3 inches of water) and all the floor had to be torn up.  Rugs got ruined, my favorite art fabric had to be thrown out, as well as curtains, etc. because of the real possibility of mold, which I can't tolerate due to health issues.  I've had chronic sinusitis now for going on 5 months and the new chemo is giving more opportunities to cope with nauseau.  Am staying at Peter's until we can figure out the next steps, one of which is possibly moving from my beloved sanctuary on the hill -- all during a time when I was hoping to quality for a bone marrow transplant.  

A friend of Peter's recently wrote him with this pertinent and funny question:  "When are the locusts coming?"   I laughed when he told me that because sometime it all seems so outrageously "too much."  After two Hyper-CVAD treatments (intense chemotherapy requiring hospital stays of around 5-6 days), and weekly intrathecal Ara-C (cytarabine) we have not been able to control the ALL in my CSF.  The flow cytometry from this week showed a small amount of leukemia cells which continue to disqualify me from having a BMT.  When I found this out yesterday, I was devastated.  I hadn't fully realized that I had put so many "eggs" in this basket. The transplant, as I understand it, only deals with the bone marrow and I haven't relapsed there, thankfully, in almost 3 years.  However, the cancer in my CSF continues to be aggressive and very difficult to eradicate.  I now face trying radiation to my brain and spinal column.  This next "deeper" step (in terms of side effects) concerns me greatly.  My oncologists tell me that Leukemia is very sensitive to radiation but it also can bring dementia (in about a year) when administered to the brain.  It feels very risky to me as I weigh the "cost"/benefit of new invasive treatments against the probability of becoming eligible for a BMT which is also very intense to the body and there is a 5-10% mortality rate with that in itself.  Most "alternative" methods either don't cross the brain/body barrier or they are simply not strong enough to eradicate cancer in the spine and brain.

So, I'm again at a crossroads facing life and death decisions.  I could go back to cold energy which showed objective evidence in getting ride of a lot of the leukemia cells, but not all of them.  It is infinitely kinder to the body and it could extend my life or would at least give me a better "end of life" experience, if that is to be.  Meanwhile, I continue to fight on, while trying to be in a place of acceptance and Grace.   Peter and I meditate and read together from deeply inspiring books of wisdom and love.  In the depths of me I know we will all face, in some way, the very same journey I am facing now.  I just didn't expect it to come so soon.  If I had my way, I would stay here for another 10 or so years, at least, so I could learn and grow in my soul as much as possible -- in my faith, surrender, inner peace and awareness of the True Self.  It is sometimes easy to look back on our lives and see primarily the deficits -- the lessons still unlearned, the unkindness and judgments, the missed opportunities.  But as Kathleen Singh (the author of The Grace in Dying) told me yesterday,  I (we) have already carved out so much good through our positive efforts in this life.  They are already there in great abundance.  I think of my attachments, which in traditional Eastern philosophy are the roots of reincarnation.  Kathleen offered me a new perspective yesterday that was so helpful, saying I can change them instantly into appreciation.  So I've been practicing this and it is helping not to judge myself for still loving the smell of pine needles in the sun or a cool breeze or a yummy desert.    

Yogananda said:  "God is all the love of all the lovers who have ever loved."  As I sit here this morning and so many mornings in recent months, I can't say I feel that overwhelming love.  But I can say that I have felt the warm, comforting embrace of love through my friends and family, and my dear Peter.  If that's not "God," what is?  We swim in the ocean of love looking for water when it is all around us, felt or not.  Sometimes this is just a "belief" but then I remember times, moments, when I was touched by love without any cause or intervention.  Yes, there have been those moments too.  While I pray for them now (I could use the reassurance!) I remember the lives of great souls who were not given consolation in times of need, yet they lived their faith in spite of it all.   These examples, and so many more of people who are suffering far greater than I, are powerful helpers on the path my life is taking me.

A friend sent Peter a video yesterday of a beautiful young woman -- the daughter of a friend of his -- who has MS and is legally blind.  She is a songwriter/singer around 22 or so and was singing the most beautiful song about strength and love and keeping on in the midst of great life-altering infirmities and limitations at such a young age.  Tears rolled down our cheeks  with the greatest admiration of her spirit.  There are so many people who are walking the walk with such strength and dignity.  I aspire to be more llike that during these hard days.

On the black backdrop of our suffering and limitations, the pure gold of our souls shines even more brightly.  In my depths, I feel this to be true and that in difficulty we carve out even greater depth of spirit and humanity, of love and connection, of empathy and the values that are more real, more sustaining than anything else.  

I'm also doing alot of art these days.  It is my lifeline and helps me to stay "in the moment" when my mind whirls around in uncertainty.  Here's my latest painting, a picture of a darling little piglet who Peter named Zsa Zsa.  Am doing a series of paintings of animals wearing turbans, available to anyone who might want one of our animal brothers/sisters smiling or twinkling on some wall.                           

                                                                      ZSA ZSA

I'll end with this thought-provoking quote from a contemplative Christian author, Cynthia Bourgeault:

 "Life presents us with a series of seemingly irrevocable choices:  to do one thing means that we have to give up something else...   Our bodies age; we diminish physically; loved ones fall out of our lives.  And the force of gravity is tenacious, nailing our feet to the ground and usually our souls as well..... Yes, we come into constriction, but is that the same as punishment?  I believe not.  I believe rather that this constriction is a sacrament, and we have been offered a divine invitation to participate in it.... A sacrament reveals a mystery in a particularly intense way while at the same time offering the means for its actualization.  And in this sphere of human life, the sacrament is finitude and the mystery is "I (God) was a hidden treasure and I loved to be known."

I have been finding that suffering can be a Great Awakener of the Hidden Treasure or I can rail against it. It can create intimacy with the Divine, the Universe, or it can create estrangement.  I've been all over the map on this one, but it has been a necessary journey for me and I have grown and am growing through it.

Love is recklessness, not reason

Reason seeks a profit

Love comes on strong, consuming herself, unabashed.

Yet in the midst of suffering,

Love proceeds like a millstone,

hard-surfaced and straight forward

Having died to self-interest

she risks everything and asks for nothing....    

Rumi

May we all live in Love,

Heidi

ON MY WAY TO A BONE MARROW TRANSPLANT......

 

Hi Everyone,

As of 2 days ago am in the  new Palomar hospital  in Escondido -- opened just last August -- a beautiful place with gardens and nature-filled terraces on each floor.  The staff is superb, and the food is great. On the 8th floor, I feel like I'm in a penthouse. Only single rooms -- large, spacious, with views of the surrounding mountains. I started a procedure yesterday called Hyper-CVAD treatment (high dose chemotherapy) as a pre-requisite for a bone marrow transplant. Feeling very much at peace about this decision and, of course, a little nervous too.  There's a 10-15% mortality rate from the BMT procedure itself, but a well known doctor and world renowned expert in Leukemia  at the City of Hope in LA -- Dr. Stephen Forman -- gives me a better than 52% chance of a cure -- so I'm going for it!  Appreciate all your prayers!

Another oncologist told me today that I'm one lucky lady that this procedure is still available to me as for many my age it isn't and he added "it's a good thing you're acting quickly since ALL can change like the wind. "   I've already had 3 relapses now and feel called to give myself the best chance of life.   I have to get in remission again fairly soon -- am just a few points out of range.
The doctors are hopeful this will be achieved in a timely manner.  Then I need to stay in a remission while a bone marrow donor is found, which could be 6-12 weeks. Doctors feel positive about a donor being found. There's more in the donor base for Eastern European decent (me) and thus the odds are in my favor.  This summer will be quite a ride!  I'm generally feeling very good about this decision, and at the same time am realistic about it.  Have heard an equal number of stories about people not pulling through the procedure itself as I have people surviving it.  However, there seems to be a flow behind the way things are lining up that is quite encouraging, so I just try to get out of the way and remain open.
 

Here's a good article about improvements in bone marrow transplants this last year:  http://www.sciencedaily.com/releases/2013/05/130528180857.htm  I decided against the transplant last year as the risk/benefit ratio did not seem good enough at the time.

 

This decision about the BMT was absolutely the most difficult of all so far.  Of course, I consulted with everyone I could think of, all the professionals and experts, but at the end of the day I have to be ok with the possibility of not making it through it.   It's impossible to know what the perfect way through this is, so I do my best to tune in, listen to that "still small voice within" and,  when  everything starts flowing seamlessly, as it has, I go with it.

Through these last few weeks my main focus has been to be cradled in Love. Sometimes I'll wake up in the wee hours of the morning and a surge of "oh my God -- what's going to happen?" will run through me.  In the past, I would "go down the rabbit hole"....thought trail after thought trail, each tripping over the next, and taking me into the ditch.  There is no answer to the question of "what is going to happen?" We will only know when we get there.  But when I can crawl out of the ditch  and get back to the present moment, a clearer landscape appears. There I can hang out as if under a shade tree, take a moment and count my many blessings, and there are MANY.

Looking at these past 2 plus years as an experience to dissolve what gets in the way of living with greater love, courage, kindness, I'm humbled by all the opportunities and stumbles -- the sheer rough and tumble of it all!  They have taught me more than anything.  And when you are a hard nut to crack, like me, it can take some pretty BIG whops on the head to start the process of changing those entrenched, conditioned grooves of fear, self-focus, worry, etc.  Little by little, my firm grip (white knuckle grip?) on control, wanting to "know", stubbornness, fear, worry, etc. is dissolving like fog in the early morning sunlight.  Rarely anymore do tears stream down my face when I wake up at 3 a.m. and start "thinking".  I'm not giving up....in fact, the warrior spirit in me is even stronger...but I sense too that that precious thing we call surrender is also stronger.  In the book I'm reading by Kathleen Singh she writes of surrender so beautifully:

"It is only a transpersonal aspect of each of us, flashing into consciousness however momentarily, that allows us to make the commitment to surrender.  True surrender and nothing less, is a certain indication that one has recognized, finally, one's own vaster and deeper being, one's own Essential Nature."

And as she has told me several times, it is ONLY when we EXPERIENCE that Essential Nature (not merely read or talk about it) that we can embody a deeper knowing that transcends (and includes) the mind, body, heart and soul -- all the parts of us.   We can truly fall into it experientially.  There is no greater comfort or solace.  How often I've heard "You can't think your way there".  God knows I've tried that way.  There are myriad experiences in life, not just cancer, which literally prod the soul to a deeper place of surrender -- we have utterly no control, not even any say, except to just "be" and to "accept" and in that field of openness the log jam may begin to break up, or not.  But we are somehow finding a way not to resist it...   

 

The soul that rises with us, our life's

star,

hath had its setting,

and cometh from  afar;

Not in entire forgetfulness,

And not in utter nakedness,

But trailing

clouds of glory do we come,

From God, Who is our home.

 

Intimations of immortality, William Wordsworth

 

LOVE,

 

HEIDI

 

P.S. Peter and I had to have a "get out of Dodge" trip this past weekend and before all the treatment got started, so took a short trip to Ventura, Santa Barbara and Ojai and visited some of our favorite places.  He's a beer lover from way back (not my "cup of tea," so to speak, so I had other delectable treats).  Here's a picture of us it afternoon one day having a jolly good time. My hip is healing very well and very quickly.

 





 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



An Eventful Few weeks

Dear friends and family,

On May 5 I fell and broke my hip, had surgery on the 8th and have been healing very well since.   In the big scheme of things this fall was perfect.  It took me out of the "driver's seat" both literally and figuratively.  After a few days of complete bewilderment that this had happened at all, I began to see how things were fitting together for deeper learning about surrender and trust, and even some relief came in!   No longer was I so "tunnel vision" on my Leukemia treatment.  This focus has been so intense at times.  Now some larger issues were forming, quite on their own, and these gave me a larger view of the whole -- the experience, again as in last summer. of more dependence on others to help (i.e., less "independence"), pain like never before, some very unusual viewings or visions of the non-physical world -- drug induced or otherwise, they were magnificent!  I began to relax and let go more, little by little.  While my choices for outer activity became smaller, my inner choices (thoughts, state of being, meditation, etc.) became larger.  My brother Greg flew in from Madison, WI to help out.  We grew even closer.  Peter was so helpful, as always... and stayed with me last weekend.  Friends came with hearts of giving and friendship.

And some good news yesterday, while there does seem to be some cancer involvement in my pituitary gland, my White Blood Count and Cytology are both normal.  If not for the pituitary (a hard place to reach for the chemo drugs) I'd be in another remission.  I feel I'm getting closer to one of the supreme purposes of this illness, and that is trust and surrender.  Something shifted with the lost wallet and lost ability to drive and it feels like a good shift.  I've seen that with more choices, the tendency to want to control, at least for me, is stronger.  So cold energy treatments had to fall away too. I saw that holding on to this particular thread was so very important to my feeling safe.  When it fell away, it opened me to the greater Reality that God can heal through any method, or with none at all.  I began to let the currents of life pull/push me along the swirling river.  I can see and feel the rapids all around and there are a few waterfalls ahead.  But all I can do is relax in my little raft with a prayer for peace and acceptance in my heart. 

While cold energy fell away, chemo came in closer.  Peter has been in touch with one of the world's greatest experts on Leukemia, who works at the City of Hope in LA -- Dr. Stephen Forman.  Dr. Forman wrote back to Peter several times.  A very kind and caring man, saying he feels I have a better than 52% chance of a cure through a bone marrow transplant and a much smaller risk of death than we heard about last year --  5% rather than 20%.   This made actually doing the procedure more feasible to me and we've been taking steps in that direction, though a final decision hasn't been made yet.

I've been on this journey for 2 1/2 years so have been "here" (in full or fragile remission) several times, only to relapse.  It feels like Spirit is leading me with a little more umph to do something different.  Am doing my best not to get caught up in the analytical mind (necessary too, but alone cannot possibly know what is best at this juncture).  Left alone, the cancer may come back as before, affect my optic nerves and cause peripheral blindness and eventual death.  Can doing only cold energy (along with supplements) cure me?  For some reason it hasn't, though I attribute it as the main reasons I'm still here.  Should I go into the hospital, as the doctor suggests, and have about a month of high dose chemo?  The last time I did this chemo combo I barely made it.  I was so out of it I couldn't recognize myself in the mirror!   Going in for a month is a requisite for a BMT at City of Hope and even then, they may not feel I'm a candidate.  It all depends on what happens in the pituitary.  Conventional chemo doesn't seem to be able to get in this small gland at the center of the brain.  Radiation of the pituitary would get the cancer there, but I run the risk of much more serious side effects, including dementia, in about a year from now.  That is unacceptable, however small the risk may be, since I'm putting quality of life, and not mere "survival" as my top goal (other than a complete cure of course!).

There is no way to go about these decisions from the mind alone, and no one can tell me what is right.  I have to do the walking alone, with my loved ones surrounding me and cheering me on!

"Waking alone" is such a profound journey. Excruciatingly painful at times. Lonely.  But there's nothing like it.  Once you think you're there, another rug comes out!   Oh the subtle ways we cling to the known, to answers outside ourselves, to others to show us the way.   Maybe most of you have learned these lessons, but for me, life needed to put them front and center. I could not have imagined myself in this place 2 plus years ago, but on my better days, I can see that it's Grace that has brought me here.

Sometimes life comes as a thief in the night and slips on those solitary moccasins unseen.  It's not that Life is doing anything TO me, but rather partnering with me in a much deeper way than before, or maybe I'm accepting Life's hand with greater ease in its invitation to Dance to new music.  I'm unable to gather comfort in the familiar things I had going even a month ago, or grasp anything certain.  Like air, everything slips through my fingers when new facts or figures or statistics come pouring in week after week urging new decisions and deeper levels of acceptance.

Is it worth struggling against the tide?  Not anymore.  Will I struggle again?  Probably.  It's my relationship to these imperfections, to my self in its entirety -- especially the parts of me are scared -- that is paramount.  It's about deepening self awareness.

A wonderful woman and author, Kathleen Singh, who wrote "The Grace in Dying" told me about a spiritual practice the wife of a well known Buddhist author, Stephen Levin, does.  She learned she has cancer several years ago.  Every morning she puts her hand over her heart and for 15 mins. she pours the deepest self-compassion into her body/mind/heart, as one would touch or hold someone in deep suffering, or a small baby or animal needing love.  We're not perfect and our imperfections are to be loved, not shunned.  Included in our journey, not whipped into submission.   My occasional fears are just messengers of where I'm holding on to the separate sense of self.  Mentally pounding them away only makes then go underground and doesn't integrate them.  At least that's what I've been learning.  It's a fine line because sometimes I'll indulge in the tears....but on my better days I see them like clouds passing in the sky.  I watch them roll in, feel their rolling thunder and release of rain.  A short time later, a day later perhaps, I can see a new vista.

I would especially like to ask your prayers over the next few weeks that I become more attuned to the subtle whispers of intuition as I go forward.  Thank you from the depths of my heart for all your love and support.

                                     With love and appreciation for all you are to me,

                                                                        Heidi

Peaks and Valleys

My dear friends and family,

Well, Life's journey took me into another valley last week when I heard that I have had relapse and that my white blood count had risen for the third week in a row, despite treatment.  All of this...ALL (which happens to be the initials of the Leukemia I have!) forces, prods, nudges me insistently to take account of my all-ness, the totality of my being.  Are there any nooks and crannies I'm afraid to look at?  To love?  To accept?  With each relapse do I go into despair (yes, sometimes) or learn to trust more (yes to this too)? 

Little by little I'm learning that I am much, much more than this cancer!  It may come back, but I have witnessed, gratefully, how it also recedes.  When it comes, as it did last week, I'm learning not to fear it as much and how to open into a greater spaciousness around it.  In short, how to trust in the midst of impossible decisions and untenable conditions.  This past Monday, for example, I had another treatment -- an infusion of a steroid and chemo/anti-body that sent me into convulsions for 7 hours.  An ambulance took me to the hospital.  I was vomiting blood, dry heaving, couldn't open my eyes or speak.  Unexpectedly I was having sudden and very SEVERE side effects, and really didn't know whether I'd make it or not.  I was so taken over by the experience I couldn't even pray!  But I do remember a very kind doctor putting his hand on my arm and saying encouraging words,  "There you go...breathe more slowly and deeply now.  It will help you.  The medicine will take effect very soon now, I promise."  I would try my best to breathe more slowly, but the retching would take over....  Still I could feel his warm, caring presence and touch, though I couldn't get conscious enough to respond or see his face.  "This is God's love," I thought in a brief moment of awareness of my surroundings before plunging into another episode of dry heaving.  I touched his arm in return as a way of saying Thank You!

The experience of pain that day was traumatic, to say the least.  But Nature has its ways of getting our attention, sometimes rudely.  It brought to mind the question of just how much more "chemicals" my body can take.....

Peter and I attended a wonderfully inspiring retreat day on Saturday with Fr. Martin Laird who wrote "Into the Silent Land" and "A Sunlit Absence."  There is so much I could write about it, but suffice it to say it was like drinking ambrosia all day.  The truth was so pure, so resonant with my inner being, so opening to Life, Love, God....  It spoke to my innermost needs at this time and I have taken from it some real, practical gems that have been escaping me til now.  He talked about how we are so often in reactivity to life and gave the analogy of being in a phone booth with a bee buzzing around our heads.  This bee is our mental commentary on/reactivity to the events of life, the difficulties, assumptions, judgments, pain, etc. etc.  Through the practice of silence "which has no opposite" we learn to gradually open the door of the phone booth and step into the meadow just outside.  There are bees there too, doing what bees do, but they are not swarming around in our heads with "stinging" thoughts.  We need these bees in life.  They are necessary for our growth.  There is no such thing, he reminded us, of a "bee-less" life.  But they don't define who we are, unless we allow them to.

So with this latest relapse, I'm ever so gradually learning to open the door of the phone booth just a crack.  I'm learning not to be in fear of "potential outcomes", to trust more in the greater Mystery and in the healing power that is all around and within.  As the saying goes, "It's simple, but not easy."  Each day I get plenty of opportunities to practice!  When I feel pain in my head due to the cancer, I'm not merging with it as I used to, but seeing it objectively as just a part of my experience of life, not the entirety of my life.  Did I say "gradually" enough?  I need to emphasize how it's truly three steps forward and two backwards many times.  Patience.  Practice.  Didn't Yogananda say "Perseverance is the whole magic of spiritual success"?

Peter found a world renowned expert in ALL at the City of Hope in LA who offered to speak with us about my options.  Meanwhile,  I am focusing on the cold energy and I believe that is what brought my white blood count down from 31 two weeks ago to 10 this past week!  Yes, it HAS come down again!  It's still not in the normal range which is 0-5, but I'm almost there.   When my white blood count gets under 5, which I'm expecting it will in another week or so, we'll do another cytology test to look for cancer cells.  I'm fully expecting the test to reveal NO SUCH CELLS! 

Also, about the Rituxan anti-body treatments, this last Flow Cytometry test they did not find any more CD-20 positive B cells, which indicates it was effective in eradicating those.  I still don't know how all of this works together.  I'm charting new territory for sure; even the doctors working with me are. 

St. John of Karpathos wrote that the most serious thing that can happen to us in life is to lose hope.  Sometimes I have felt myself clinging to a thread or a ray of that precious thing we call hope.  Sometimes hope has flooded my being with all the splendor of its Goodness and Joy.  What an education I'm receiving these last two plus years in the REAL lessons we come to earth to learn and that we take with us on the final journey we call death.  As none of us do, I don't know when that journey will come, but I pray each day to have the time and diligence it requires to integrate these lessons into the heart and soul of my being.  May they continue to give me stamina, courage and resilency!

Love and Warmth to you all....

Heidi 

A Time of Uncertainty

Hi Everyone,

I haven't updated my blog recently because I haven't really known what to say except to ask and thank you for your continued prayers.  I will know more this coming week, but here's what's been happening recently:

The samples from my white blood count in the spinal fluid have indicated that my WBC (which was zero 3 weeks ago) is going UP (to 10 and now 25 -- normal is 0-4), despite the treatments I've been having.   This has only happened when I've been in a relapse.  On the positive side, last week's cytology could find no "irregular" cells in that same CSF sample.  Dr. P is quick to say that this doesn't mean there is NO cancer there; it simply means that the syringe full of fluid they check (a small amount compared to the entire amount in the spinal fluid) didn't have anything noteworthy.  The higher white blood cell count could mean several things -- the worst is that I'm in the early stages of another relapse and am becoming resistant to the treatment.  The best, I guess, is some mysterious auto-immune response to the anti-body treatment.  I've asked Dr. P to do a flow cytometry test this coming Monday which will tell us a lot more specific info.  Thanks to Dr. Gwen Stritter for suggesting this.

So...living with uncertainty is the name of the game.  We all have some form of this, don't we?  When it's literally life or death, it really challenges one to dig deep. If I'm becoming physically resistant to the treatment, there is little Kaiser can do anymore and there are more drastic procedures, like a bone marrow transplant or clinical trial I could try.  These don't appeal to me for various reasons; Peter and I have done quite a bit of research.... 

My warrior and resilient  body has been so valiant already and I'm so fortunate to beat the odds thus far.  But I'm not drawing any conclusions yet or coming up with "strategies" until I know more.  Am doing my very best to keep in the present, listening to the birds singing outside and being mindful of what is beautiful and feels GOOD and there are plenty of those things if I choose to tune into them, rather than worry-thoughts....  Have started a new painting and having a jolly good time working on it!!!

Just as I wrote this, a bird began singing in my little garden the most joyful song!

I'm reading and meditating a lot these days on the Sacred Nothingness....that place where all duality fades away and there is just "being-ness" and oneness.   It all sounds so simple, but that doesn't necessarily mean it is "easy" to do.  That sense of us that feels separate from the Universe, from God, from Light gets scared and doesn't want to accept untenable conditions -- conditions beyond our control.  But therein lies the transformation.  I read this passage yesterday by a Christian Mystic, David Frenette, who wrote "The Path of Centering Prayer" (a book Peter loaned me):

 

"Whatever contemplative dark night you are confronted with, the task during spiritual darkness is to avoid getting caught in yearning for the light of day.  Don't bother searching for the old ways God's presence touched you and woke you up from the dream world of the separate-self sense.  The task is not to search for an

artificial light.  Transformation in the night (of uncertainty) is all about moving to a more subtle level of perception. Dualism dies in the darkness.  The contemplative task is to remain in the darkness itself until it becomes radiant in your embracing of God and in God's embracing of you."

 

Ah, acceptance!  Dualism (good/bad, right/wrong, lost/found) fading away to just an eternal embrace that is always there, behind all our thoughts, conditions, sense of aloneness, fears.  I still feel very much a beginner on the path of surrender, despite my many years of meditation and prayer.  I still can get carried down the turbulent river of this illness -- seeking the Light, or even a twig on the river bank, to hold onto!

 

A wonderful meditation my friend Steve reminded me of the other day is simply to sit in the silence and say, out loud at first, but more importantly to FEEL the words:  "I choose to be uniquely what I am (whole, vibrant, spacious, spiritually one with all that is), and nothing less."  This meditation isn't a mental process at all. It's all about feeling and sense.  A profoundly deep sense of the truth of who we are as part of Spirit.

I began to feel a "heaviness" fall away, yet thoughts continued to rise up:  "But my body hurts!  I'm afraid of having the cancer come back!  I don't feel ready to die.  I've already been through so much!  Not AGAIN!!! " yada yada.....   As they did,   I did my best not to "Merge" with them.  I can always tell when that begins to happen because these thoughts are usually followed, almost instantly, by strong emotions.  Now is when this practice can get sticky.  We don't want to repress the emotion (bury it deep down as if it has no message or meaning), yet we don't want to identify with it either or let it carry us in a downward spiral.  God knows I've done this and it really hasn't gotten me anywhere except a release.  In other words, I've had some whopper "pity parties" but all that has happened is I'll have a mess to clean up afterwards.  A stuffed-up nose for a good hour and a lot of used Kleenexes to toss!  And what do I have to show for all my tears?  I'm usually back to where I started.  (I don't want to demean emotions because it can be useful and necessary to express them and get them all out!)

 

In the Mindfulness meditations I go to at a cancer support group, the wonderful leader of the meditations says to shift the awareness to something that feels pleasant whenever we start getting caught up in negative or painful thoughts.  It could be a sound outside, or some part(s) of the body (toes?) that is/are comfortable.  This will bring me back to the present moment very quickly.  Then I can continue with the feeling of being what I am, in truth, that is larger than my pain, my conditions, my fears.... Or sitting in the Sacred Nothingness and just opening to God.   Even if I can only manage this for a few seconds and then give way to tears, that is OK.  No judgment.....

 

So my dear ones, I continue this crazy up and down journey as I lean into my sweet and loving friends, into my sweet, loving and funny Peter,  my wonderful family.  We celebrated my 63rd birthday party (see picture below -- I'm the one on the left with the big double chin from all the steroids I've been on!!!!!!) Friday night that Peter organized at the Tao restaurant in San Diego for 16 of us!  I couldn't stop smiling the whole evening.  THAT evening was truly a blessing worth counting and the warmth and goodness of it will last for many, many days, weeks and months.  In the end, what is more important than love?

 

Wish you ALL could have been there!!!!!!

 

Heidi

 

P.S.  As soon as I get any info. from the doctor this week, will post another blog.

 

 

 

 

 

Time for Another Update.....

Hi Everyone,

It's been quite a time in recent weeks.  The last two treatments I had (before this last week) were so close together -- just 3 days apart -- it was too much for my body.  I was incredibly nauseous, could hardly eat or drink for about 1 1/2 weeks and had to be in the hospital again for serious dehydration for a couple of days.   Peter and I have had SO many trips to Kaiser ER in the last two plus years!  We have seriously lost count!  20?   30?  But thank goodness for the blessings of Kaiser insurance!

So....have been a bit "out of commission" in recent weeks and apologize if I haven't answered your emails or voicemails.  Am finally beginning to feel better after about 5 or more weeks....

As we head into spring, I'm reminded of last year, around April, and how that massive relapse began to sneak up on me.    It's been 8 months to the day, pretty much, since I was admitted to the hospital last July, not knowing if I'd ever walk again, or, more importantly, survive.  Here I am eight months later and today I found out that the spinal fluid they extracted yesterday came back with ZERO white blood cells.  I've never had it at zero before, which would indicate there is really no cancer...at least that is what I feel.  But to be safe I will continue with the Kaiser and other treatments.   It's such a fine line -- are there still Leukemia cells?  If not, the treatment going into my spinal fluid kills the good and bad cells and could have long-term side effects that could be potentially serious.  Why continue with it if the cancer is all gone?  However, there's no objective way to determine that...so continue I must until I have some greater clarity.  Dr. P wants me to stay on the treatment for the rest of my life.   Hmmmm......

I met with the Tibetan doctor today, Dr. Lobsang.   It was a wonderful visit....  his view on the above question is that cancer of the blood and spinal fluid is a "complicated" disease and he will need some time to work with me, see how I do from his herbs, etc. while I continue with the Kaiser treatment, cold energy, Mederi....  maybe six months or so.  I believe that is Dr. Bricca's feeling too.  If I continue in remission -- fingers crossed -- we can decide at that time about discontinuing with the Kaiser treatment.  I felt really positive about his entire outlook.  So kind and knowledgable.  He has seen people with Stage 4 cancer turn things around and be healed, he said, because they cultivate a deep connection with Spirit, with their hearts, with a sense of joy and purpose, despite their circumstances.  What's amazing, is that he could feel an inherent "vitality" in me, and could feel, in my pulse, a deep recuperative energy despite the 2 plus years of chemicals and cancer.   

The Kaiser treatment yesterday brought the usual side effects -- about an hour of intense nausea, cold sweats, dizziness and the inability to focus my eyes for about 2 hours.  My good friend, Rick, sat with me and held my hand through it all....

Peter and I have been reading about (and practicing) something called "coherent breathing".  It's basically inhaling to the count of 5 and exhaling to the same count.   It sounds incredibly simple, but there's some very good science on it and its health benefits -- both emotional/mental and physical.  As the side effects from the treatment yesteerday began their intense gripping of my body/mind, I began to feel an overwhelming wave of  emotion well up within, like a tidal wave of resistance to all the pain and difficulty I've gone through for such a prolonged period now.   My mind said "NO!  Not again!"   Then I began to breathe....  consciously counting to five and exhaling to 5..., letting thoughts dissolve into the breath.   Quite quickly, the emotion and the nausea began to ebb noticeably,  and am doing well today, relative to other treatments. 

I still have days when I wake up and need to work with myself to find that place inside that is bouyant and, if not exactly "happy", is at peace with "what is".  Am going to a Mindfulness meditation tomorrow for the first time.  It meets weekly, and am looking forward to connecting with some new people and, above all, using my time/energy for deepening my spiritual connection.

Am incredibly grateful for the ZERO white blood cells -- indicative, I hope, of a very solid and prolonged REMISSION!!!!!

Thank you all for your continued love, support, prayers and good wishes!!!

Heidi

Divine Intercession!

Hi Everyone,

Turns out my right coronary artery was about 80-90% blocked and they put a stent in.  The "before and after" pictures were dramatic.  I realized I've been so focused on the Leukemia this past year, that I've been ignoring or "explaining away" as chemo side effects some classic signs of heart disease, like pretty regular pain under my left arm.  Thank goodness Peter and I were together Friday night and his "sense" was very strong about going to the ER.  I too felt something was very different than I had ever experienced before; was doubled over with chest pain.  Would I have gone to the ER on my own?  Hard question to answer.  I think so.  I feel I averted a major, life-threatening heart attack!

When the doctor recommended an angiogram  I immediately felt a "yes" and truly felt a sense of peace, almost joy (!) waiting for the procedure Monday morning.  10 mins. into it I heard, "We've found a blockage," (due to plague build up) and the stent went in painlessly.  More blood to the heart equals more oxygen, more energy. It should help all around.

I feel like the luckiest person, having caught this.  It's pretty much the main artery into the heart!

On Monday I also heard they only found ONE (!) white blood cell in my spinal fluid and no irregular (cancerr=looking) cells.  I don't think it's been that low since the massive relapse last summer.

So all in all, things are good.  Am focusing now on beginning again to build my immune system and committing to a super heart-healthy diet.

Love to all,

Heidi