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.