Dear friends and family,

It has been such an incredibly long time since I've updated you.  Life has a way of moving on, and thank goodness for that!  This morning I wondered if a little update might be appreciated.  So here goes...

I've been finding my way in the "new normal" of this maintenance phase of my treatment -- daily, weekly and monthly chemo treatments.  In the midst of low energy caused by sub-normal blood counts (due to chemo), I'm settling into life as it is.....for the most part.  I say "for the most part" because there are still days, like today, when I feel the urge to be in connection with a larger purpose.  Something inclusive of humanity, serviceful....only to realize how intensely purposeful my inner life is at the moment.  And how that is, above all else, ultimately the most important purpose. The ways of the past are gone, at least for now.  That bursting energy I used to feel, like an unbridled colt or a strong gust of wind, is simply no where to be found.... So I give in, allow, let the river of life flow as it will.

Sometimes life has us incubating...."on the shelf".  There is simply nothing we can do about it.  We can resist or surrender.  The choice is ours.  "In surrendering the mainstays of your former worldview and separating yourself from everyday community life, your old anchors and familiar reference points disappear.  You will have to rely on yourself more deeply and fully than ever before."  (Soulcraft, by Bill Plotkin).   I'm reading this wonderful book now and it stirs my soul with strength and vision.  "Sometimes, without any effort on our part and when we least expect it, the soul shows up, pulls the rug of ordinary life from beneath us, and showers us with its confounding radiance.  We hear our true name spoken for the first time, or an angel appears and invites us to wrestle, or we awake in the wilderness at midnight....."

Leukemia has showered me with its confounding radiance and given me plenty of angels (and demons) to wrestle with. In the midst of it all, it has shown me that there is a hero inside, perhaps a reluctant hero...but a hero nonetheless.  All I've had to do is continue to show up.  I don't need to win any battles or be profoundly positive or philosophical every moment...  The soul of the hero is simply  in not giving up.  Well, at least, for today, I can do that.  I can lay in my bed, exhausted, and think about beauty.  I can write this blog.  I can smile at the cashier at Trader Joe's...

My art has come powerfully into my life again.   Out of the blue new opportunities have come, and I've been relishing them. 

Peter and I went to a wonderful concert recently at the home of Lauren and Ken Golden -- piano and violin.  I was swept off my feet, literally, listening to the beautiful music of Rachmoninoff, and other great composers of old (and new).  They had a super comfortable recliner they let me use, so I listened "in style" and let the music swirl through my being, carrying me to places both mystical and magical.  Here's a photo from that night -- Peter and I with a good friend, Therese....

Well, folks, that's it for now.  I continue to appreciate your well wishes.  Am beginning to see the light at the end of the tunnel -- only 10 more months of chemo and I'll be done...FINALLY. 

Sending each of you love and a big warm, fuzzy HUG!

Heidi
 

Update and Invitation for Gathering at my place

Hi Everyone,

It's been 4 months to the day since I left the hospital.  Am now settled in my new casita, and so very happy here.  The backyard is full of brightly colored flowers, the silence is healing, the views expansive.  I recognize this place as a definite gift.  

There are many gifts -- the gift of free time to heal, do art, read, explore in various ways.  Though it comes with a price -- ongoing chemotherapy throughout the remainder of this year and the next --  I am aware, always, at how unusual and special it is for someone like me, an inveterate "doer", to have this spaciousness in my life.  It is not always a comfortable fit, as I acquiesce to days of relative freedom on the one hand and the pull to be of service on the other.   The irony is that I longed for this space for so many years.  Now that I have it, using it wisely, with purpose, is at times more challenging than I expected, especially because my body is not yet ready for any type of prolonged activity.

My life situation has propelled me deeply into the issue of purpose.  I had always defined purpose through external activity, largely having to do with helping others or some "cause."  Now I am my own cause.  This feels wonderful at times.  At others, I long to be giving to others, to be creating the next step of my life, to be building a website, coordinating meetings at my home for those dealing with cancer, etc. etc..  Yet life is looking me squarely in the face saying requiring me to be still, let go, and relinquish most all other ambitions for the time being.  In spiritual terms, it is a death of the old and a rebirth of an entirely new me -- from my bone marrow to my hair follicles!

Hopefully by the time Fall rolls by, I will be able to have a Meetup group at my home for Cancer thrivers and survivors and begin, gradually, to incorporate more into my schedule....On my "feel good" days, I am finally getting back to my art (it took me these past 4 months to get my MOJO going again!).   It's wonderful to be doing this again.  Below is my most recent piece.  

I had my last (hopefully) lumbar puncture last week.  It was a strange one, to be sure.  Dr. Polikoff  hit a nerve in my spinal column, as my right leg kept twitching painfully.  What an ordeal!  I say "hopefully" as I read recently that only 10 percent of people with ALL have central nervous system (CNS) involvement at the time of diagnosis but a year later, 75% have it if they don't get proper treatment.  I haven't had the full amount of treatment as I decided to forego the final month of treatment with methotrexate, opting instead to have 3 more lumbar punctures.  These LP's are not quite the same as the full-dose treatment I would have gotten in the hospital, so I'm asking the Doc if I should have a few more.  We'll see.  My attitude is "whatever it takes."

Next week I go for IV chemo again and the following week I will have a simple surgery to implant a port under my right collar bone.  This port will be used instead of the PICC line I had in my arm for nearly 8 months for administering chemo.  It is much easier to have this than using veins and it is a relatively quick surgery.

GATHERING AT MY PLACE

Please consider this a warm and loving invitation to come to my new place on: 

SUNDAY, SEPTEMBER 4

4-6 P.M. 

This is the long awaited "out of the hospital" celebration I've mentioned a few times in earlier blog entries.  I would love to see each and every one of you and to set aside this time in appreciation for the friendship we share.  Being on this long  healing journey (a year this coming November) has given me a lasting and poignant inner realization that in the end, it is friendship and love that matter more than anything else. 

If you think you might be able to attend, please send a brief response to this blog so I know how many to expect.

Little did I know when the picture below was taken (a little over a year before my diagnosis) that life would present me with a unique Labyrinth -- an inner and outer journey with unexpected twists and turns.  But such is life for all of us, is it not?  The only thing we truly have is the present moment and how we choose to be in the now.  I have seen many different sides to myself through the Leukemia that would have otherwise remained hidden.  This inscrutable  passage has been and continues to be a great teacher.  There is no way to be in the driver's seat or to know the end result.  I'm sure all of us have this element somewhere in our lives.  There is nothing quite like it to quicken the soul....

Sending my LOVE to all of you,

Heidi

Memory Lane

Peter and I made a visit to Two West at Kaiser Hospital yesterday.  That's the Oncology wing I spent so many days, weeks and months on.  In all the time I was there, I had never experienced it so quiet...almost deserted.  Yes, it was a holiday (4th of July), but I had spent so many of this past years major holidays in those rooms and they were brimming over with patients, nurses and staff bustling around the floor with tasks too numerous to relay.  There was an emptiness yesterday, and I was glad to see that, at least for now, the list of inpatient cancer patients at good old Zion (Kaiser) is shorter.  It seems only a few rooms were occupied.  When I was there, there was often a waiting list to get a room on that floor.

There was one room I spent more time in than others....or at least my memories of that room were stronger.  The door was wide open as we walked by and I noticed a lovely picture, looking like two hearts, was pinned to the poster board on the wall.  It was almost as if the door had been left open to the room just for me.  It was inviting.  Pleasant.  No one was around.  Peter and I walked closer to the picture, intrigued by it, and somehow I knew it had something to do with Yogananda.  Turns out it was a page from Yogananda's (the founder of SRF where I spent 30 years of my life) calendar with one of his quotes about love.  "Love rules the Universe" it said (or something to that effect).  For those of you who know my connection with Yogananda you will understand how incredibly touching and sychronicitous it was for me to find this simple quote hanging on a wall at Kaiser 2 1/2 months after I was discharged.  There are so many poets, writers, teachers throughout our planet's rich history.  Of all people to have been quoted in this simple message of love hanging on the wall.... 

It's life's profound messages in the littlest things that mean so very much.  Somehow Love was present in that room, in the hospital, in the chemo, in this strange, difficult and life-changing journey I've been on. 

I put my head down on the bed, overcome by the moment.

Good news came from my oncologist that he is extending my Disability for another year.  It was to end in November.  This gives me much more time to focus on healing...

Two Months to the Day Since my Last Update -- Happy 4th of July weekend!

My dear Friends and Family,

It has been exactly two months to the day since I last updated all of you.  So much has happened -- I've moved to a beautiful new place, very close to where I had been living (just a few houses down).  My old place of the last few years served me well but had no sunlight or any view whatsoever.  The gift of this new place is that it came up for rent the weekend I came home from the hospital and I was approved within days, given the key a full month before rent was due and could spend a MONTH moving in!  It was gruelling, to be sure, but now that I am in it, I am incredibly happy.   From my bed I can see the ocean very clearly, as well as the mountains to the East.  Panoramic views.  Bright flowers.  Breezes.  Quiet.  3 bedrooms/2 baths for traveling friends and family.  I am smitten with it and so very grateful to be comfortably settled.  I have two beautiful trees in the backyard and am way up on a hill.  It really feels like a mountain cabin.  Please come visit me here whenever you are in the area!

So much news to share....

• I'm still in remission.  My last bone marrow biopsy was about a month ago and came back clean.  Yeah!
• Outpatient treatment continues and has been a bit harder than I thought it would be.  I've still needed blood transfusions at times and have had days of weakness rivaling my days in the hospital at times.  But am much more active.
• Have begun in earnest an organic diet with great supplements that have been proven quite effective for the immune system and work well with standard chemotherapy.
• Have joined a couple of cancer support groups that have brought me back into community.  Feels very good.
• I couldn't get the MRD test (referenced in my last updates) as it turned out to be too expensive.  However, I spoke with a genetic scientist who is familiar with my case and has supervised my bone marrow biopsies. He's also a professor at UCLA and an MD specializing in Leukemia. Very credible. He gave me a F.I.S.H. test which showed no chromosomal or genetic abnormalities which are quite common in ALL.  This is fantastic news.  I was smiling for days after my 30 min. conversation with him.  He said that this gives me a very good chance of being in the 39% who achieve a complete cure from ALL, but also cautiously added not to hang my hat on his words.  They always have to say that, I guess.  In my heart, I know I am blessed with healing. 
• Peter and I went on our first trip last weekend since my diagnosis in mid-November.  Portland, OR...one of our favorite places.  We saw my 93 year old step father, who doesn't feel long for this world, and attended the graduation of my dear friend Bonnie Skakel, who is now a Naturopathic doctor, doctor of Chinese medicine and Acupunturist after 6 years of study.  It was a beautiful, beautiful day.  I also met Peter's son and his son's wife for the first time.  They are lovely people.

The trip fulfilled a deep need in me to travel and explore.  Portland and the surrounding area is lush with Nature spirits, gorgeous views, deep moist vegetation, great food....on and on.  On returning, however, I realized I had stretched past my physical limits and it took the better part of the week to regain my balance and strength.  But it was worth it!

For the first time since learning about the Leukemia I am feeling an inner shift.  I am opening in news ways the the possibilities and opportunities that are here for me creativity.  My hair is growing back (I'll be posting some recent pictures taken in Portland), I still feel that I'm resting in the lap of the Universe, that I'm profoundly taken care of, and my gratitude abounds.

Please feel free to call me or write.  I love hearing from you!  Stay tuned to find out when I'll be having a gathering at my new place sometime this summer!

Heart's Love,

Heidi
P.S.  Peter and I at Multnomah Falls.....

A New Beginning....

Dear friends and family,

It's hard to believe, truly.  My hospital days are now behind me!  It seems only just a blink away that I was beginning the longest journey of my life so far -- 5 plus months of chemo in the hospital.   I ended up spending every holiday, except for Easter, there.  The rainy months came and went.  So much of what happened in the hospital is blurred by a kind of chemo fog.  Whole events, conversations, etc. are a blank to me.  It is a strange experience, to say the least.  I think I occupied, at one time or another, almost every room on the oncology floor over that period of time.  I got to know all the nurses.  Some became dear to me and I will miss them. 

Looking back on the experience now, it seemed unending -- another chemo treatment always lurking around the next corner....  And now it is behind me.  Time in this 3 dimensional world is truly a trip!  At one end it is slow, painstaking... at the other it is like a passing breeze.  Where did it go?  And yet I experienced SO MUCH during those months that will need to be integrated into the present. 

Although it seems a bit strange, transitioning from the hospital to home (and to outpatient treatment) is an adjustment, at least for me.  Not a difficult one, but an adjustment nevertheless.  As I gain strength, my desire to be more active also increases.  But now is not the time for that.  It is a new phase of healing, a time for gentle focus, for little pleasures, like walking more outdoors, having lunch with friends, and, of course, resting.  Whenever I have unconsciously tried to push in my activities, even in small ways, my body has made it abundantly clear that that is an old pattern that needs to be released. 

It is very much a new beginning in my life in just about every way possible.  I went through way, way too much this last half year to just jump back into "life as usual."

The meeting with my oncologist last Thursday went really well.  I told him I did not want to proceed with the final three weeks of inpatient Methotrexate.  I truly feel that was the right decision for me, given all considerations.  He was very understanding and said we would start outpatient this week.  Outpatient is pretty intense too, but waaaaay better than the relentless, LARGE doses of chemo I was getting in the hospital.  I had my first outpatient IV of chemo on Monday.  The rest of the time I take oral chemo.  There are still side effects, and I am feeling them.  But nothing like before (at least so far!).

I learned something very interesting about Leukemia last week.  There is a new way to find out if there are any Leukemic cells via a test generally known as MRD (minimal residual disease).  It is much more sensitive than a bone marrow biopsy.  Patients who test positive for MRD have an 89% chance of a relapse.  The only catch is that you need a sample of the pre-treatment bone marrow tissue, and often this is not saved by the doctor.  Dr. Polikoff is checking to see if mine was saved.  I really hope so, as it would give me so much peace of mind knowing that my test turned out negative for MRD (giving me a 94% chance of a complete cure).  There may be a way to do the test without a sample, but it is more difficult.  I'm checking with experts around the country who are knowledgable in this field in case Kaiser can't help me.

What a beautiful time of year to be out of the hospital.  The sun rises earlier and sets later, the land is sun-drenched as we head deeper into summer.  Today it is nearly 90 degrees in Oceanside!  I am focusing now on eating lots of greens and protein for my dear, embattled blood factory (bone marrow), sorting through 6 months of papers and "stuff" from the hospital, and whatever else calls to my heart and soul.  Peter and I are planning a trip to Portland to attend the graduation of a friend who just completed medical school.  We will have 5 days in that beautiful city in late June....

So much to be thankful for!   I will continue to update my blog as the weeks go by...

With so much love and gratitude for all of you,

Heidi

A Beautiful Good Friday and Easter to All

Dearest friends and family,

I have big news.  On this sacred Easter week I was discharged from the hospital for the 5th time -- 5 months exactly to the day (Nov. 19-April 19).  My body is healing well from the massive amounts of chemicals that have been put into it.  As I lay in my hospital bed looking out the window before being discharged, I reflected on all that has happened since finding out I had Leukemia in mid November.  Intuitively I feel this will be the last time I'll be back in the Kaiswer oncology wing.  All the nurses and doctors I've met, some very dear and wonderful people, will always remain in my heart and I'm sure I'll go back there and visit them from time to time.   So many memories of the last flood through me as I write this. 

Now begins the next, new chapter, a resurrection, of sorts from the "tomb" of extremely aggressive, toxic (yet healing) chemotherapy....  I feel I owe my life to the doctors and nurses at Kaiser who brought me through one of the MOST difficult kinds of cancer.  I still need to meet with my oncologist next week and discuss the methotrexate they want to give me for another 3 weeks in May.  (For those interested, you can read about how difficult this particular form of chemo is here:  http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html )

My oncologist knows that I have questioned whether I could do another round of this chemo and is open to talking about alternatives as we go forward.  I will also request another bone marrow biopsy to see where I stand....but I know deep inside that my body is free of leukemia.  The doctors have been extremely encouraging all along.  Kudos to my brave body for withstanding such an onslaught!

I still have some months ahead of getting my strength and muscle tone back, and I believe the outpatient treatment can be difficult at times too.  But I will face what's ahead with all the courage and positivity I can muster.

In closing, I wanted to express gratitude for so many things...

I am grateful for all that has transpired
The darkness that was cleansed into Light
The moments of despair that led to hope
The opportunity of letting go of ALL control...
...Every nuance and impulse to hold on, to push or resist...
Every cry to have this cup removed from me.

I have greeted and welcomed a deeper side of me.
I have faced death and chosen life.

Thank you to all the friends who gathered around
my bedside -- whether or not in person
The hands that held mine during the dark night
and moments of joy
The unspeakable love I have felt
which birthed a new knowing
That I am loved very dearly
And that nothing will ever change that

I am grateful for my deepening faith
That it was shaken, stirred, examined
And that what came forth is a greater knowing
of that sacred relationship with the Good
in all things...

For my deepening bond with my sweetie, Peter,
Who was the best champion a woman in distress
could ever have by her side

For the harp concert on the day I was released from the hosp.
The stirring Music of Handel, Rachmoninoff, Debussy....
played by the harpist of the San Diego philharmonic
in a private appearance, just for me (at Peter's house)

For all the glimmers of true compassion and caring, of
giving, of empathy, of walking with strength and good
cheer by my side, for endless notes of comfort.

For my two brothers, Greg and Kevin, and my dear Aunt
Jean, and cousins, Jory, Alan and Ricky.  I love you so much.

Happy, blessed Easter to all,  Heidi

Hi sweet friends and family,

Almost two weeks down and, hopefully, just one more ahead before going home for a week or so.  This time, as last, my blood counts are lingering in the low range...though it's still too early to tell how things will turn around, or how quickly, in the next week.  The doctor told me today that the bone marrow gets "tired" of the cycles of obliteration and rebirth this far into the treatment....  I've had a special pep talk with those cells today, doing visualizations and affirmations, and exercising more to signal activity and health to my neural networks!  Overall, am doing better this time (in terms of nausea and pain) than any other time I've been in the hospital.  A hugely welcome relief

For the first time in 5 months, since beginning my treatment in mid-November, had some scary "incidents" with the nursing staff -- wrong blood for my transfusion, wrong IV solutions,  steroid eyedrops 4 days longer than prescribed, etc..  (I learned from the doctor today that those 4 extra days wouldn't hurt my eyes, thank goodness!  All the other mistakes were caught in the nick of time.)  When the wrong blood came up and almost wasn't caught, I had had enough and talked to the administrator of the oncology floor.  The next day a friend called and told me about a book called "How to Survive your Hospital Stay."  I found the mention of that particular book more than a coincidence and have been on high alert in terms of self-care and safety the last couple of days.

Other than these incidents, the majority of the staff has been incredibly supportive, caring and competent over my long stay in the hospital.

Am almost done!!!!  And am starting to dream again of the evening's first stars at twilight on the island of Kauai, where Peter and I plan to go in late July.... of taking walks in the mornings around Oceana, of renewed health and strength entering my body's core, like a wellspring of prana -- always available and unstoppable in its healing force.   As I lay here writing this, the mere thought of that force sends vibratory signals throughout my body. 

I have learned, and continue to learn, so very much about myself here in this hospital "classroom".  There is absolutely nothing more compelling than an experience like this in terms of self-examination.

Peter sent me a wonderful article about the Hero's Journey.  Here's a short excerpt:

"Life can be lived in many ways.  You can make it about making money or winning at all costs, or pleasing other people, or perhaps never standing out.  Or you can live your life as a great journey of consciousness, one filled with many challenges and surprises, one that makes a positive contribution to the world....

...All of this suggests that the hero’s journey is no simple task.  It involves developing a deep connection to your center, and an expanding beyond your known self to something greater and grander.  It requires many skills: the “disciplined flow” of intentional but flexible consciousness; the capacity to construct, de-construct, and re-construct brain maps and filters at different levels; the willingness to learn creative nonviolence; the know-how to transform problems and suffering into solutions; and the courage to love your self and the world with all your being.... -- Stephen Gilligan, Ph.D.

This journey has certainly put me at the edge of my faith, my trust and ability to surrender everything.... everything.....  But being at the edge has been awakening as perhaps nothing else could.   I stand on the brink at times looking out into a vast emptiness, knowing that somewhere in the void, in the mystery, are the peals of wisdom, Self-claiming, and true transformation.  It is a relentless journey, but one that has had many blessings along the way.   Dare I say I wouldn't change it for anything?    Hopefully I can achieve that attitude more and more.  What an accomplishment that would be!

Love to all of you. 

Heidi

P.S.  There are some new photos posted under Misc. Photos of me in one of my wigs.  Peter and I took these on our drive into the mountains on Sunday on a pass from the hospital for several hours.