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.

Woke up this morning feeling such a deep and abiding sense of well-being in my body.  As I lay in bed, I let my thoughts and feelings travel to the Source of this powerful, yet gentle energy.  It was as if my body was joining in the celebration of spring and new growth.  I could feel it "humming", like a fine-tuned instrument.  I have not yet had an experience like this since starting out my journey with Leukemia....especially in the days following a chemo treatment.  Though my blood counts are going down, which is expected, I could feel another "force" beyond chemicals and the finite material of the body.  It was that force I could sense this morning and I allowed myself a full hour or more to tune into it, affirm it and celebrate it...

It was so powerful and comforting....a message, perhaps, that all is well.  A message of new life and new cycles. 

The A-Fib was a blessing in disguise as it brought me to another floor and a room with a stunning view of sky and clouds.  What a difference it makes to look into the vastness of nature, especially when She is all decked out in her finest spring wardrobe.  Today I'll go back to the oncology wing reinforced and renewed in a way I hadn't expected.

Today is day #7 after my initial chemo this past Monday.  It's typically the day when nausea and other side effects begin to kick in.  What an amazing surprise to be greeted by this beautiful life force energy this morning....

I will be getting a hemaglobin transfusion today which will give me a boost of energy.  And I just asked the doctor if I could have a "day pass" out of the hospital tomorrow (Sunday) if all looks well in the morning....yes, this would be fine, he said.  Peter and I will take a drive up some mountain top and throw snowballs at each other.  I'll try to take some pictures to post here....

Love to all,

Heidi

A-Fib and a Trip to the 3rd Floor

Hi dear ones,

Well, A-Fib was bound to catch up with me sooner or later here at the hospital, and it did last night.  I'm not sure I reported prior to this, but my last time out of the hospital I had numerous episodes and was in the ER a couple of times.  The more often it comes, it sets up a pattern of coming more often:  "A-Fib begets A-Fib" the doctors have told me.  Having this ON TOP of Leukemia has been a real challenge since the A-Fib is extremely depleting (as is the Leukemia). 

But I seemed to take it all pretty much in stride.  Peter stayed til nearly 12:30 a.m. to make sure I got transferred to the heart floor OK, which happened around 1 a.m.  I must say, this floor is very nice.  My room overlooks a beautiful pine tree and the very green, rain-soaked hills facing west toward the ocean.  I'm told by the nurses that the sunsets are spectacular from this Wing.  I actually hope I can stay up here for awhile.

They gave me a calcium blocker last night and within 30 mins. I had converted back to sinus (normal heart beat).  I was in A-Fib for just about 5-6 hours, unlike the other recent times when it stretched out to 17 and 24 hours!  I am so looking forward to the surgery called Ablation that they use to fix this problem when I am stronger...perhaps by this summer.  The very week I decided to go ahead with the surgery is the week I found out about the Leukemia, so it all had to get put on the back burner. 

It is a rush against time, however.... the more often it occurs, the more likely it will become chronic (in A-Fib all the time) and the less effective the surgery.  I do my best to surrender all of this from the depths of me.  There is simply nothing else I can do, and it brings me some peace.

I've made it through just about a week...with two more to go. 

Sending love to all of you!

Heidi

Getting Through the Week....

Hi Everyone,

This week has had its ups and downs...but I'm getting through.  The lumbar pucture was one of those things out of a movie -- took the doc so very long to get the needle in once again.  It felt like about 30 mins of poking.  But I was in a chipper mood that morning, and Peter was here cajoling me and reminding me to relax.  The doctor said later he couldn't have done it if I had been anxious or reactive.  So the methatrexate got into my spine and brain once again and I was glad to have that BEHIND me!

With this one treatment on Tuesday, I had another strange reaction where I became mentally confused.  Dr. Liao told me today that this is one of the major side effects of this chemo.  It's hard to explain how it feels when you cannot piece things together logically that took place just a few hours previously.  I took a nap after lunch and woke up at 4 p.m. utterly convinced I had slept through the night and it was now way into the next day.  I couldn't remember anything that had taken place that morning.  I called my nurse and she helped me recall a few memories of the morning and said that she recalled the last time I was on methatrexate and this was a familiar response to it for me.  I finally remembered Peter that morning and was able to put perspective around what happened, but it took nearly 3 hours to come back to my center. 

The next and last treatment is ONLY methatrexate so I must think long and deeply about it and have a thorough discussion with the oncologist.  Mirabai visited today and was here when Dr. Liao came into the room.  She asked, "Do people die from Methatrexate and without skipping a beat he said "YES."  But there is so much to consider.  With the treatment, if you get through it, that is, studies have shown people have the best chance of a complete cure.  But getting through it is a doozie, believe me.  It seems to take over the neuron pathways, mix them up and gradually over time they begin to sort out.  While you're going through it, there is much darkness.

So I have a few weeks more til I have to make that decision.

It was nice seeing Mirabai after almost six months.  I had not seen her since before my illness.  We had a lot of catching up to do and lots of love was shared.

I've been administered the last chemo for this time -- 3 straight days of it.  I can feel it in my body, saturating the tissues and cells it needs to get.  This particular chemo takes a month to work out of your system.

The doctor asked if I'd like to go home this weekend and recuperate there.  But I opted on staying in the hospital for a while longer so I can see how I feel once chemo really starts to take effect, which is about 7-12 days into the treatment.  They have better medications here to handle the side effects...

Well, that's enough of that!  The San Diego skies are getting ready to rumble again, the wind is picking up and the air cooling down.  It's brisk and beautiful outside, with such lovely colors of flowers lining the freeways and hills.  So much is going on in our home we call Earth right now....As I sit here I try to send light out to all who are in far greater need than I.  As the doctor was leaving today, he said:  "Remember, you are cancer free."  (Referring to my complete remission).  I'm here this time because it is the protocol to repeat the treatment in order to get every last cell that might be left.

Love and Hugs to all of you who are sharing my journey.

Heidi

Back Again.....

Dear friends and family,

It's April 4th, a day after a wonderful birthday weekend, full of laughter, loving, delicious food (had my appetite back in full force!), and gorgeous spring-like weather.  Today I was re-admitted to my "home away from home" these past 5 months -- the hospital -- for my 5th 3+ week chemo treatment. 

It was a difficult drive here this morning as I tried to muster up my warrior spirit yet again, and to open to and not resist the experiences that await me.  Memories of my previous visits came rushing into mental view, with the associated feelings and reflections.  For some curious reason, I felt more anxious coming this time. As I sit here in these very familiar surroundings, I am affirming that the hospital, nurses, doctors and chemo are my allies, intended to heal and support me.  I have a deep conviction that this is where I need to be.  It's one of those inexplicable mysteries that I find myself here....and I reflect often on how destiny and choice intertwine to set us on our life's path, even though we cannot fathom it all on a conscious level.  

I'm now on the homestretch....  This will probably be my last full treatment.  The next and final treatment will be modified to a degree, and I hope it will be a shorter time in the hospital.  My body/mind/spirit had such a hard time with that particular chemo treatment, I don't feel I could tolerate it again in the same dose as before.  Today I get another lumbar puncture and Peter will be here to support me through it.  I'm receiving chemo 4 days in a row this time (different types) and will remain here til I recuperate -- probably about 3 weeks total.

It's amazing to think ahead just a bit to mid-May and FREEDOM from these 4 walls I've come to know so well.  It will feel so liberating to have my life back, and to feel my energy come back.  I've spent a good 90% of the last 5 months in bed, and my muscles will need some major workouts to regain their strength.  My sense is that this will take a few months, but what a great time I'll have waxing in energy and vigor instead of waning!

Thank you so very much for keeping me in your thoughts and prayers.  I feel your love
and support very deeply.....

With gratitude for your friendship,

Heidi

Hi Everyone... 

Had quite a difficult week at home this week and ended up going to the ER in the afternoon yesterday (Friday).  Turns out I have an infection and, due to my intense nausea, was dehydrated (unable to drink or eat).  There were other problems too.  Glad to report that after being evaluated and given antiobiotics, saline IV and new anti-nausea medication, I left the hospital feeling sooooo much better.  Amazing what a little relief from pain and discomfort will do!  

Staying over at Peter's this weekend.  We decided to go on a "Pleasure Hunt" today -- doing whatever feels good, nurturing and beautiful.  We may take a drive to the Tijuana Estuary which may be in full bloom -- it's a mind-blowing sight if any of you haven't seen it.  Just gorgeous.  My appetite is (FINALLY) better and I'm looking forward to seeking out some delectible treats today.

May be going back into hospital Monday for my 5th round of chemo.  Now I am really on the home stretch.   That said, each chemo seems to take more out of me and it's harder to feel my strength and lifeforce come back, only to get it knocked down again.  This week I couldn't walk for more than 5-10 steps without collapsing.  All I could do was sleep.  Will see the doctor Monday a.m. and if he deems I am "chemo ready" (strong enough), I will get admitted that day for another 3 weeks of treatment.  After that is done, we face a decision about doing the last chemo treatment which was so very hard on me.  I know I won't be able to do it at the same dose or the same length.  But then THE HOSPITAL PART OF THE TREATMENT IS OVER!!!!!!! 

That should be some time in May/June and I'm planning a big outdoor picnic/potluck to celebrate having made it through the most difficult 1/2 year of my life. Maybe we'll get a firepit on the beach in North County.  Stay tuned because ALL of you are invited.

Peter reminded me this morning of the simplest, yet most profound, way to continue this healing journey I'm on:  "Give yourself over to Source."  May the essence of these words give us strength and comfort, whatever journey we are on...

All my Love,

Heidi

    

Hi Everyone,

I made it through the last chemo round fairly well and am now home for a couple of weeks.  This time I went back to the hospital fortified with better food (from friends), lots of positive CD's and books and an attitude of yielding (opening) to the experience, rather than bracing up against it.   I'm on the home stretch now with just two more rounds to go.  It is absolutely the most difficult thing I have ever done in my life.... times 10....but I'm sure the difficulty does some transformational work on the inner plane -- some I can see and feel and some I can't at this moment. 

After about 2 weeks in the hospital, the mind feels like checking out and going into whatever will pass the time most quickly.  I found myself not listening to the CD's quite as much, not reading as much.  It REALLY helps to keep the positive input flowing.  Peter is a tremendous supporter of that and reminds me regularly not to slump into the oblivion of chemo-induced blahs...

Yesterday they decided to give me my last dose of chemo in their outpatient department and send me home after that.  This is the first time I'll be dealing with the side effects without the 24 hour support of the hospital staff.  It's just for this one time.  I think they realized that these long stays in the hospital can be pretty dreary, so they are trying an experiment and hope it goes well!  (So do I!)

The outpatient clinic at Kaiser was full of love and joy.  It suprised Peter and me.  They were celebrating a patient who had completed his chemo -- all the doctors and nurses came out, they had refreshments and a little ritual of ringing a gong.  The caring among the staff and patients was palpable.  It was heartening to witness.

On the food front, I'm still LOVING my pickle and avocado sandwiches.  It's strange, but deserts by and large don't tempt me at all.  I can eat 3 sandwiches a day and I'm still losing weight.  Haven't weighed this little since I was in my early 30's.

I pray for the strength and patience to get through the next two months of inpatient chemo and on to better and better days!

My love to everyone,

Heidi

Hello dear ones,  

This update has been a long time coming.  The last time I was in the hospital -- in January and February -- I went through what can only be described as the dark night.  It hit me on all levels....way down deep to my soul core.  Physically I barely made it through -- I was delirious for several days, didn't know what was up or down, night or day.  The chemo got into my brain (intentionally) which was like a dark, sticky oil seeping into all my neuron pathways and wrecking havoc.  It got to the point where I couldn't recognize myself and it sent shivers through my consciousness.

After that ordeal, I decided that I couldn't continue the rest of the treatment.  It just seemed like the path of death.  I wrote to my oncologist and told him my decision.  (It's not like me to quite something like this.)  That week was an agony as I searched every corner of my soul and prayed my heart out for direction.

Early on the doctors told me that there is "no way" anyone can survive leukemia with just one round of the treatment.  I had finished one round.  Even though I was in an altered state that week, I still opened myself to the beauty around me and began to feel myself choosing life and life choosing me.   That part was wonderful.

The second week I had a meeting with the oncologist and I knew he was going to try to convince to complete the treatment.  But the night before I had a remarkable and sacred experience that clearly indicated that I needed to come back into the hospital.  It came in the form of a dream.....  When I woke up the next morning I felt such deep peace.  All the angst left me -- not that the decision to come back to the incredibly brutal chemo treatment hasn't filled me with angst!  But I knew it was the right thing to do to give myself the best chance of a complete CURE!

So I'm back in the hospital, going into my 3 week of this round.  I have one more week (next) and then will be able to go home for a week or two for a break before doing the next round of 3 weeks.  After that I will talk to my oncologist about my options for the 3rd and last round.  I am not inclined to do that around....at least, not in the same way.  Perhaps he'd be open to modifying it.  This much I'm sure about.  I will not undergo that chemo in the way it was given to me before.

I'll be out of the hospital soon and discharged for good in May.  It's been a long, long journey since Mid-November.  It will take me quite some time to integrate it all, even if that's possible.  I know my life has changed dramatically: releasing old grievances, forgiving betrayals, digging into the deep recesses of grief and letting it all go....these must become a way life -- the way of the peaceful warrior.  My diet will change and I will find so many supportive, healthy, loving, creative way of being with life again, more fully than ever.

Much love to each of you,

Heidi

3 months of Hospital completed this coming weekend!

Greetings everyone,

It's amazing how different I can feel from one day to the next.  Had a wonderful time with Peter over the weekend.  Got two 6-7 hour passes from the hospital.  We tried a couple of new restaurants, went to a movie, hung out at his house, and watched the Game on Sunday. I was feeling so good during the Game, for a few hours I completely forgot I have leukemia.  I was able to drive myself back to the hospital that evening for the first time to begin my chemo preparation.  I think the contrast from the weekend "out" and then coming back to a difficult round of chemo got to me Sunday night....I slumped and had to really work on my perspective the next morning.  Felt completely whiped out, emotionally too, so I prayed deeply for some encouragement, some comfort and support as I waited for my lumbar pucture to begin at 1 p.m.  I literally "stormed the gates of heaven".....

Comfort came quickly in the form of a visit from Peter and a couple of doses of Western's best: 1 mg of dilaudid pain killer and 0.5 mg of adavan, a relaxant.  The two worked like a charm.  I hardly remember anything about the puncture, except that I was light-headed AND light-hearted.  No fear or anxiety whatsoever!  Peter was here holding me and I think I even dozed off during the procedure!  After it was done they laid me down and I slept all the way to 5 p.m.  It was magical to see how well the procedure went and that I had such a sense of well being in my body when sleeping throughout the day.  The memory of how well yesterday went is with me still today, as a beautiful response of Grace.  To go from intense anxiety and depression in the morning, to smiles and even cheeriness by evening, is truly remarkable!

This morning I woke up without a headache for the first time in weeks.  My WBC went from 4.7 yesterday to 11.3 today.  Actually, the 11.3 is "high normal" and rarely makes a jump like that in a day.  The doctor says it may point to an infection (perhaps in my lungs), but regardless it is a good sign that my body can produce that level of WBC, he said.  My plateletts went from 150 to 187 -- a really good jump too.  Some Leukemia patients can't get their counts that high ever, I've heard.

I have two more times today that I have to take the potassium pills (they are truly yucky) to keep me in a good heart rhythm -- and two more times of pill form methotrexate, the chemo I'm on during this round.  By tonight they will have me on the antidote for the metatrexate and by Thursday I should be off all IV and thinking about coming home for a week before starting all the treatments over again during my second half.  Peter and I are going to celebrate the half way mark in some way this weekend.

When I was first admitted in November last year, 6 months of the hospital seemed mentally and emotionally out of reach.  I just couldn't grasp the enormity of it.  It is HUGE to have been through all the treatment now, know what's coming and that it should be easier the second time around because, as the doctor said, my "cancer load" is much less (or completely non-existent) right now.   Imagine how wonderful and upbeat I will feel after the next treatment is done and by March I should have just 2 more left.....or six (plus) more weeks in the hospital -- compared to six months!

I'm getting there, my dear friends.  It has been so heartwarming to travel this road with all of you cheering me on.  There have been brief moments when walking out has gone through my mind...never seriously entertained, I might add.  The deeper part of me is committed to going through with everything to give myself the best shot at getting every Leukemia cell.  It will be a new day when I can begin focusing more intensely  on building my body up.  A Naturopathic doctor sent me this website about some research on Vit. D and D3 for cancer, for anyone who's interested:  http://www.vitamindcouncil.org/researchCancer.shtml  There are so many good nutritional things I want to begin to incorporate when I'm in the outpatient phase of the treatment.

I've been painting again.  Feels good. 

Sending my love to each one of you.....

Heidi

A Rough Week

Hi Friends,

This was my second week of the chemotherapy called methotrexate, and a difficult one. I haven't felt up to too much communication, so I apologize if some of you didn't hear back from me if you called.  The Methotrexate has built up in my system now and so the side effects are more pronounced than the first week.   I have one more week of this particular chemo to go before I reach the half way point (of the hospitalization portion) of my treatment.

Yesterday (Thursday) my white blood count went down a bit and my chronic cough got worse.  I'm learning that the path to regaining my health is not going to be linear.  It's more like 3 steps forward, 2 backward.  However, Dr. Liao gave me a wonderful perspective during his visit in the morning.  His words were a life raft in this seemingly shoreless ocean of chemo, nausea and pain....  He said "Heidi, you are doing above average with the treatment.  Actually, how you are responding is superior to others I've seen."   And I could hear the sincerity and enthusiasm in his voice. 

It is so important to hear words of encouragement and perspective from those who have experience with Leukemia.  My nurse last night also told me how well I'm doing....."I've seen many, many Leukemia patients in my career and let me tell you, Heidi, you are doing really, really good." 

I take these words with me into the daily battle -- doing my best to remain positive and to go the full 9 yards with this difficult treatment.  For example, this morning I can't even imagine another lumbar puncture this next Monday and going through yet another week of Methotrexate.  So I don't look ahead...except to this weekend when I hope to get out of the hospital and play a bit, energy permitting.

The most challenging aspect of this right now is the sheer length of time of not feeling good with only a little respite now and then from the pain medication.  It is a journey of utmost GRIT!!  There is no going half way....  Dr. Liao said if only one leukemia cell is there, I would have a relapse in the future.  So I'm taking every pill they give me, every IV, every injection....  I'm fighting this with all I have.  I am absolutely determined to be in that 40% that gets to the 5 year point (and beyond) with no relapse!!

There are moments, like this morning, when all I want is some tenderness....something to offset the rough, sharp edges of this experience.  Something soft and easy.  There are moments of tears when I just can't get down another yucky potion that is there to help me, but makes me even more nauseous in doing so.  But get it down I do, and I wake up to another day....closer to my goal, closer to the end, closer to a new, brighter chapter of my life.

Today, if up to it, I'm going to take a longer walk outside.  I'm no longer hooked up to my IV as of this morning...so am freer to get around.  I'm also going to do some art.  I haven't felt inspired to do anything creative in such a long time, and even today it seems like a bit of an effort.  But I feel it will help me....

That's it for now.... will post again soon.  Meanwhile, my love and hugs to each of you!

Heidi

    

Greetings everyone...

There is so much spaciousness in this day.  The nurses aren't coming in as often.  My treatment is on hold, for the most part, until later tonight when they begin the sodium bicarbonate in preparation for my second rigorous round of methotrexate this week.  I'm sitting in my hospital bed with little to do.  If I were home now, I would be more active, perhaps creating some art.  But here there is just this hospital bed, a window looking out at the brick wall of the wing next door, and the TV which I'm determined not to turn on.  This hospital floor seems very quiet to me at the moment.

I have heard there is another patient around my age with my type of Leukemia on this same floor.  She isn't doing so well as she has the Philadelphia chromosome.  I wish I knew her room number so we could chat (if she wished), share notes, and be a support to one another.  It's the second time in two days that I've heard of women in the hospital with ALL who have the chromosome and aren't doing well.  I am so grateful to have dodged the bullet of that chromosome.  There must be some purpose in that, and it gives me deep hope that this disease has come, not to take my life, but to free me to live more of life.

My blood counts continue to be spectacular (blessings and gratitude to my body for being so responsive and such a warrior!)  Today they went up yet again (a good thing) and all of them are in the normal range, just a few days after the methotrexate.  The more I learn about ALL, the more I understand that this is no small feat...and consquently, the more grateful I am to those mysical, magical forces within that bring life and healing.

I didn't feel quite well enough to be home this weekend and am not feeling "sick" enough to lay around the hospital all day.  Fortunately, I got a day pass yesterday.  Peter and I went out to lunch, then to a sweet little neighborhood park where we laid on Mother Earth for about an hour in silence, snuggling.....then to Coldstone, where I got a DELICIOUS banana caramel crunch, and finally to the movie True Grit.   I had been out a little over 6 hours and was exhausted when we got back.  Felt sooo good to stretch out and give myself over to this strange place I've been calling home for the last 3 months....

Today I get another day pass and Peter and I will drive up to my house to pick up some art supplies so I can have some creative focus during the next two weeks.  It will help, believe me, as I'll be going back down, down, down into the dark chemo cavern: spinal chemo, brain fog, nausea, bone pain, blood transfusions....for the second week in a row.

It is a journey of utmost surrender.  If I try to look for an escape hatch, I find none.  There can be a sense of being trapped by pain, for there is nothing I can do with my will force to change "what is" except keep positive thoughts, feelings, images, and the love of family and friends very near to my heart.  When the occasional tears come, I can feel compassion for my human-ness.  What happens to us doesn't doesn't define us, but how we respond to it does....  This experience is forging within a new strength I didn't know I had.

What gets me through sometimes is the knowledge that this experience will have an end.  There will be a day when I walk out of the hospital (I will frame my discharge papers!).  Life, with all its potential, will be there to greet me.  I will be somehow freer inside, perhaps a little wiser and stronger, and more giving.   I know I will not take things for granted as I used to.  Like health.  And I know that LOVE is truly all that matters in the end.  This experience has shown me that in spades.  Love and service to others. This desire to help others go through Leukemia is growing within me.  I'll definitely be looking for some ways to volunteer.

Much love to all my friends and family who are keeping up with my progress.  Your caring means so much!

Heidi

Request for Blood Donations

Hi sweet friends and well-wishers!

I am always so touched by your comments about my blog entries....this last batch was especially fun and heart-warming to read.  Yes to writing a book!  I almost signed up for an online mentoring process to help first time writers get their books out in one year.  Am not 100% sure that I'm up to the energy output at this time, but that day WILL come.  I'm touched by your encouragement! 

I'm beginning to see just a crack of light at the end of the tunnel of my hospital treatment.  The doctor told me yesterday that the next phase (beginning in June) will be so much easier on me.  June is really not that far away.  This third course of chemo is well under way and then I'm on a fast track toward the end...countdown just 3 quick little months ....  and then so much more of my life comes back. 

There are several significant factors in my favor toward my remaining in a full long-term remission -- I caught the Leukemia so soon, got into a remission after the first chemo treatment, and have the best proven care.  I'm surrounded by so much love and light.  You can tell I'm feeling upbeat today.  One of you wrote "Screw welcoming the pain.  Welcome the wellness!"  Thank you for the reminder.  It gets tricky when there is so much discomfort....  Easy to forget at times to focus on the glimmers of hope and well-being.

This week is a blur.  I slept nearly 72 hours off and on (mostly on).  Yesterday I couldn't interact at all with the 3rd dimension.  People came and went into and out of my room...  I could squeeze a hand or two to let them know I knew they were there, but I was out of it, more so than at any other time since beginning my treatment.  There was nothing to do but surrender, to let go and to trust that life would come back, as it did this morning.  It is a strange experience indeed when there is absolutely nothing you (or the doctors) can do to stir the life force sufficiently.  It has its own miraculous time-line. 

I go through this chemo cycle for the next 2 weeks.  It's a very intense cycle.  If all goes well, however, I will get a "day pass" this weekend on Sat. and Sunday and can take a drive & perhaps, if I have an appetite, get something to eat when I'm out.  I've developed a "conditioned" response to the hospital food -- even the smell of the trays in the hallway makes me gag.  I'm told this is not unusual for chemo patients.  There is nothing on the hospital menu that appeals to me.  No doubt more pounds will be dropping off.  I haven't weighed so little since I was in my 30's!

If any of you have the inclination to donate blood to my cause, it would be very much appreciated.  My blood type is A positive, but I believe you can have A negative, A, O positive, etc. and I can still use your blood.  Am anticipating needing more transfusions and it is a great comfort knowing that I'm receiving blood from a known source.  All you have to do is ask them to ear-mark it for Sherry (Heidi) Hall at the Kaiser Permanente hospital in San Diego and they will make sure I get it. 

Much sweet love to all of you.  I feel your support profoundly each day...

Heidi

 

Progress

Greetings!

I'm on another chemo safari for the next three weeks, with unexpected twists and turns.   Each hill and valley gives me new vistas and new challenges.  Woke up this morning determined to traverse the day with grit, but the lumbar puncture was a bit more than I could bear.  My stoic attitude began to break down when the needle didn't get into the right spot and the doctor (too inexperienced in my opinion) kept having to poke it in and out, each time with excruciating pain.  Finally, after about 20 mins. of pure agony, the chemo went in and the needle could come out, for good...  Needless (needle-less??) to say, I will request another doctor for next week!!!!

This was all on top of just 1-2 hours of sleep last night -- a loooooong night of chemo and a substance called sodium bicarbonate to protect my kidneys.  Today I have to drink at least a half gallon of liquid in order to avoid developing kidney stones.  With that much liquid going into me last night (about another half gallon of the sodium bicarbonate and the chemo), you can imagine what I was doing every 10-15 mins.!!!  Sleep was impossible.

So this safari (so far) has taken me on a ride into some rocky places.  There were some bright "vistas" along the way, however.   Some wonderful people stopped by my room -- hospital staff and a good friend, Mel), and Peter was there during the puncture to offer moral support and humor.  He developed this "warrior" song and dance that always brings a smile to my face, even during the most painful part of the procedure.

An elderly woman who volunteers here at the hospital just brought me a warm, homemade chocolate chip cookie.  Delicious!  Will soon try to take a nap.  The blinds are drawn, lights out (it's the middle of the day) and I'm all tucked in this fairly comfortable hosp. bed.  No interruptions for a few hours.  There is so much of this mexatrexate in me at this point I can literally taste it in my mouth.  Yuck! 

As I was laying in bed last night I kept repeating these words over and over again, trying to feel them deeply in every fiber of my being:   "My body cells are made  of Light.  It permeates every particle of my being.  I am living in that Light.   This healing Light fills me within and without."  It helped shift my attention from the chemo.  I need this shift  more than the other earlier treatments as I begin to understand and feel the side effects of the chemo more.

Peter reminded me during the puncture to welcome the pain and not resist it.  In all honesty, I found that exceedingly difficult...though if some of that welcoming filtered through just by a crack, which I think it did, it helped get me through.  I love the reminders to welcome life's experiences , hard as it is sometimes, and to know that there is purpose here.  I can create purpose and destiny by how I meet them each day.

I am looking forward to a beautiful pond just around the jagged corner of my sojourn..with birds singing and soft grasses waving gently in the breeze...  When I keep this journey in perspective, that day is truly not too far off

Love to all of you,  Heidi
   

 

A Glorious Weekend before the Hospital...again

Hi Everyone,

I'm making the most of this beautiful San Diego weather this weekend, before my hospital journey begins again on Monday...feeling the warm sun on my skin, listening to the birds sing without a care in the world, looking out at the vastness of sea and sky.  Peter is here this weekend.  I gave him a hair cut and trimmed his beard.  These quiet Saturday mornings are so different from my supremely focused active life before Leukemia, and it is good to allow the moments to soak in without thought of the future or the past. 

I found a wonderful acupuncturist just 15 mins. from my house.  Went to two appts. this week for the nausea and they really seemed to help.  We discussed the side effects from chemo -- he has experience with oncology support.  I look forward to connecting with him periodically to help me through the inevitable pain and discomfort as my body receives more of this oddly healing poison. 

I'm finding myself looking ahead just a bit, now that just 3 months remain to the hospital part of my treatment.  Two weeks at home showed me how gradual my strength comes back.  I innocently felt it would be back almost full force by now...eating well, sleeping well, for the most part, and having the last chemo treatment a good month ago (not counting the 10 min. spinal chemo I had two weeks ago).  I have heard that it can take many moons to recover from chemo and, once again, patience is needed.  Great patience.  More patience than I've ever had to must so far in these 60 years....

For those of you who have written me personal messages offering support of various kinds, please know that I have taken them all to heart and very much appreciate your suggestions.  This blog doesn't allow me to reply personally, so if you'd like to hear from me, please give me your email address in your message.   I am always open for visits too -- whether in the hosp. or home.

My blood counts are great right now!  After a very high ALT liver count (indicating potential damage to my liver), in just one week the level is back to the normal range.  It was very encouraging to see how quickly it recovered by just eliminating some of the drugs I was taking!  I keep talking to my liver and organs telling them to hang in there through the next several months to a year!

Time for the shot in my stomach and then another avocado and dill pickle sandwich!

Love and Hugs to all of you....

Heidi





 

Hi Everyone,

Still a few more days at home....am starting to prepare myself mentally for the next hospital session.  For the first time in 9 weeks I can walk for about 30 mins. on my own steam and take short trips out (once a day for 30 mins).  After "feeling into" the trip Peter and I had planned for this weekend to the desert we've decided that it would be more prudent to postpone it for sometime in the future when I can truly celebrate my recovery, when nausea is a distant dream, and energy flows through my body with much higher intensity than it does now!  It was a tough decision, but after it was made, I felt at peace.

I have always had a tendency to become too active too soon when unwell....a pattern I am dedicating to changing on this healing journey.  I realized, through the cautionary words of a good friend, that ALL my energy needs to go into healing right now.  There will be plenty of time for travel in the future... 

I'll be posting a fun photo soon -- be sure to check it out.  I haven't yet shown my beautiful bald head!  Now you can see it in an interesting photo out in Peter's backyard.  It is self explanatory....but here's a hint:  I took a tumble...  Fortunately, Peter and I erupted in prolonged laughter...

There are so many lessons in this Leukemia.  Not having "control" over my body (energy-wise) calls for such deep surrender.  My active nature -- a habit of a lifetime -- rises up inside me ....but all I have is a simmer.  There is no "boil" at the moment.  Try as I may with my will, my limbs are weak and I must honor, with patience, the slow healing and recovery process.   I had thought I would be motivated to do many things when home these two weeks.  Have been surprised by how sedentary I have been, how quickly the day goes by...how fleeting time truly is.

One interesting thing to share before signing off... my taste buds have truly been (temporarily) altered through the chemo.  There are so few foods that sound good to me and many, many that I simply cannot get down.  My latest fav?  Avocado sandwiches with dill pickles and plenty of lettuce and tomatoes.  I eat them for lunch and dinner, and nothing else!  Everything else -- pizza, quinoa, even my beloved greens -- are not in the mix at the moment.  Very curious! 

Kaiser is sending home health care to my house twice each week to check on me.  I have only praise for Kaiser...the kindness and efficiency of 99% of the personnel I've come in contact with has been truly remarkable.  Today Jeannie came by to change the dressing on my picc line which I opted to keep in my arm during my stay at home, rather than going through another "installment" episode next Monday when going back to the hosp.  For those of you who don't know what a picc line is -- two tubes are inserted into the upper arm and "threaded" into a vein that goes into the chest.  This is where they administer the chemo and other drugs.  It can stay in the arm for a whole year!

Please feel free to call me any time and, when in the hospital, would love to see any of you!  You are all my lifeline!

Much love!

Heidi

Visit with the Oncologist

Hi Everyone! 

Today is a glorious day in Southern California.  Warm sun, cool breeze...the leaves are glistening with the sunlight.  I have just completed my first week at home after nearly two months in the hosp.  My nausea is FINALLY abating (though not totally gone), my pain levels are manageable now without pain medication and I am absolutely loving the freedom of my own rhythms.  I just cooked some organic kale for lunch, along with other yummy food, and ate it outside on my front porch in the sun.

I'm not sure if I mentioned it in my latest update, but this week I've needed to learn how to give myself a shot of heprin in the stomach!  I have known others who have had to do this and my own mother injected herself with insulin due to diabetes.  I used to wonder how they mustered the courage to plunge the needle into one's one tummy.  It's just one more thing that one has to step up to, and it's a great exercise in detachment.  I keep telling myself that pain, like a bee sting, is over fairly quickly.  I won't go into any more detail (for those who are squeamish), but am finding my way through this latest stage in my treatment.

The Doc said I don't have to go back into the hospital for another 10 days!!  I have a week from this coming Monday to rest, read, take short walks as my energy allows, and my favorite -- visit with friends who come by.  There are still moments throughout the day, especially when I wake up in the morning, when I realize there is no escaping the reality of leukemia.  However, I am grateful for the blessed respite I get during sleep and dreams and many moments of meditation, love and laughter.  And it is not the whole reality of my being...

The statistics for ALL (Acute Lymphoblastic Leukemia) for adults show that many people (about 60 percent) have a recurrence at some point in the future.  I have such a deep confidence that I will be in the 40 percent of those who live out their days leukemia free. 

Peter and I are planning a brief get away next weekend, before going back for another 3 weeks or so of chemo.  I long for the healing energy of the high desert, to feel the windswept breeze of mountains and meadows, and to breathe in fresh, crisp air.  Am not yet up to much traveling, so we are planning the trip carefully with no rush or stress.  I have needed a trip like this, however short, to boost my morale and spirits.  We will come back Monday morning and he will take me straight into the hospital for another lumbar puncture and extensive chemo into the spine and brain (even though my spinal fluid showed no sign of cancer, they still need/want to make sure nothing is "lurking" there).  This particular treatment is so toxic that they have to administer an "antidote" the following day to avoid kidney failure!  I have this treatment three weeks in a row.

My art has been beckoning me and I know I need to return to it soon.  Allowing my heart and spirit to express through this medium feels like a lifeline to me now.  I may take some supplies with me into the hosp. if I can.

Thank all of you again for your love, prayers and encouragement.

Heidi

 

HOME FOR AWHILE

Dear friends and family,

This post will have a little more thoughtful tone.  It felt comforting to walk through the door of my house and be greeted by what has been my life for the last 10 years.  My art hangs on the walls...memories of art shows gone by and more art to come.  The silence in the house is palpable after the constant noise of the hospital....

Being alone at the moment, and feeling somewhat "outside of time" has caused me to reflect on many chapters of my life -- most notably my many years in the SRF ashram, and the years that followed.  I believe that life has a way of bringing us to deeper levels of insight.  This illness took me abruptly out of my "doer" mode and into a "being" mode where there is only my inner resources and the vast spiritual dimensions available to me.  My dear friends and family are a part of that dimension, for I feel Spirit expresses through everyone in my midst -- friend and stranger a like.  We are intricately connected.  I have experienced this more than ever in the two months I've been hospitalized.

I know it's been said before, but there is nothing quite like a catastrophic illness to point the heart, intention and deepest reflection toward what really matters in life.  I found myself grieving a bit this morning for the loss of friends in the past, abrupt endings of relationships, etc.  Part of "getting well", I feel, is being able to face (not resist) all aspects of life's experiences, past and present, and gently coming to peace.  As mentioned above, I went from doing to being in just a few days.  For those of you who know me well, you will know that I have always had more than one project going on:  art, work, editing, etc, etc.  Not having the strength (or even the mental focus at times) has put me into a completely different zone for these last 2 months.  I can see that it is by divine design, for it has brought me to the edge of being...and in the end, what else truly matters? 

I've quoted this before, but will do so again now:  "To everything that has happened up til now, thanks.  To everything that will come in the future, yes."  This quote gives me daily courage to continue saying yes to all the aspects (expected and unexpected) of this healing journey.

The spinal chemo had just a few moments of all out pain, but once the needle got into place, all was well.  Peter came and rubbed my shoulders during the procedure.  Soooo comforting.  My next course of treatment will include several more lumbar punctures and spinal chemos. Now that I know what to expect, perhaps I'll relax into it more????....

I will find out on Friday when I go back into the hospital.  Hopefully I will get one more week at home before another gruelling 3 week stay in the hosp.  After that I will be half way through!

All my love to each of you.

Heidi

  

GOOD NEWS!

Dear Family and Friends,

I had the most remarkable day yesterday...  My White Blood Count soared to a whopping 6.3 -- completely in the normal range now. (The nurse just came in when writing this and said that today it is 8.6 and that my platelets are up to 90K!)   This has allowed me to get off the neutropenic diet in the hospital (i.e. no fresh fruit or vegetables) that I've been on for 6 weeks and have my first salad yesterday! 

My main oncologist, Dr. Pollikoff, just came by...  I'll be definitely getting the spinal chemo on Monday and then discharged from the hospital for almost 2 weeks!!!!  When I return I will begin the third module of the chemo...something called mexathrexate... which goes into the brain.  They will need to do a kidney flush because of the toxic amount of chemo in my system, but the doc said it will not be as difficult as the first two modules and has a much shorter recovery time.  Such a relief to hear that.

Yesterday I met with a wonderful contemplative Catholic priest -- Father Justin. (For those of you who have read any of Father Thomas Keating's writings, Father Justin's philosophy is very similar.)  Peter knows him and arranged for him to come to my hospital room.  We talked about Christ Consciousness, about surrendering the self (false self), opening into a more expanded awareness of the mystical nature of Christ and the Divine.   I found it deeply stirring.  He was refreshingly authentic and real.

I took much of what we spoke about into my meditation this morning, gently surrendering this body, personality and self into an expanded space.  To me, surrender is not having to "do" anything and cannot be forced.... it's just a gentle opening and turning over and release.   I experienced a very special sense of well-being, and from there the whole morning unfolded with such good news.  I have needed a day like this.  The beautiful silvery clouds outside my window give way now and then to a brilliant sun....a metaphor for my hospital journey.  The sun came out today in my treatment and I can see, for the first time, that I AM making it through this, that life is full and good, that I am well on my way toward total healing.

Dr. Pollikoff is giving me a "day pass" tomorrow of about two hours, so Peter and I will take a drive and maybe stop somewhere yummy for a bite.  It's hard to believe that soon I'll be able to get out of this hospital gown and into my jeans and sweaters.  Maybe this next week I'll go wig shopping!   Blond?  Red head? Brunette?  I will have fun choosing.

Sending each of you my love and gratitude for your continued interest, care, friendship and love.  I couldn't make it through this without you.

Heidi

Good Thursday morning to everyone,

I got some good news yesterday -- my WBC (white blood count) went up quite a bit.  Both my doctors overseeing my treatment were all smiles.  They are beginning to talk about doing the lumbar puncture and spinal chemo within the next few days, depending on my numbers continuing to go up...and then sending me home for a week.  Oh, how I long to see my little casita (home), sleep in my own bed, eat a healthier diet. Spinach, Kale, brussel sprouts, homemade soup....sound so good to me after 6 weeks in the hospital!

Dr. Liow said I am getting close to being half way through with the hospital part of the treatment, though he wasn't sure.  He will tell me tomorrow. I felt euphoric at the news, though I have a feeling it's only about a third completed.  It might not seem to be a big deal, but 1/3 versus 1/2 way through seem lightyears apart to me. Time shifts and changes in some unusual ways when in a confined situation with little control.  That's why there is great wisdom in just focusing on the present.  When the half way mark comes, however, it will be a wonderful turning point.  I will see the light at the end of this dark, difficult tunnel (made brighter by all my friends and the gifts of divine love that have been unmistakably present).

Dr. Liow mentioned once again how difficult the treatment for Leukemia is.  He said that the chemo they use is more toxic, more difficult than any of the other chemos for other types of cancers.  My little, brave body has held up so well under the onslaught!  I talk to my cells and organs all the time and tell them to hang in there....that one day they will be cleansed, purified, fortified with wonderful whole foods and supplements, and that this will all one day be a distant dream.

This journey has been working deeply in my soul, bringing transformation that perhaps could not have come in any other way.  There is absolutely nothing that gets your attention than a life/death situation.  From one day to the next -- everything was different for me.  There was little time to prepare.  I saw how quickly I declined in just a week -- from walking to being in a wheelchair all within days.  It brought me to the edge, you might say, very quickly, where the only place to turn was within, to my inner strength and to the Divine.  Everything else slipped away -- all except my loved ones.  When I've been down, there is always a friend who can lift me up with a word of good cheer, an insight, or just a warm understanding of my circumstances.  That gives me the strength to get through another hour, another day.

One of the beautiful lessons for me is to see how Love shows up in so many ways, in so many forms.  It transcends belief systems.  The sweetest Baptist nurse prayed with me the other morning.  Tears ran down my cheeks -- so touching was her sincerity and kindness.  The hospital Chaplain just poked his head in my door and will come back soon, again to pray with me.  I love connecting with people of all belief systems and religions seeing that underneath them all there is a oneness, a common thread of humanity, tying us all together.

The dearest woman who gives me a foot massage each week is donating her time to help me.  She won't accept any payment as she said it brings her joy to help me.  I got permission from the nurse to get her business cards into the hospital and the nurse will be telling other patients about her so that will increase her business.  How wonderful it feels to be helping her out for the kindness she has shown me.

There is so much I want to share with all of you...so many revelations, insights, new understandings.  I know when this is all over I will have seen it as the greatest blessing in my life....But I do need to get through it first, and I do have my ups and downs!

Sending love to all of you.

Heidi

Hi Everyone,

All is well, though my blood counts did not respond as well as we hoped to the transfusions yesterday.  Am having another platelet transfusion soon, as I need to get my "blood clotting factor" higher to avoid hemmoraging.   Generally this isn't such a concern for Leukemia, but I got those blood clots a few weeks ago and am on Heprin now (which thins my blood).  It's a bit complicated, so won't bore you with all the details. Am doing well in general, with the expected and unexpected ups and downs...

Tomorrow will probably be moved back to the Chemo unit.  Am hoping to go home by the weekend so I can have at least a few days in my own space before going into the next round.  It's incredible to think that I've been in here since before Thanksgiving and have missed ALL the rain we've had in San Diego....  Looking out my window now I can tell it's cold and crisp.  A few clouds are lit up by the setting sun.  Peter is coming by soon and we'll probably watch more of the 3rd season of the 24 TV series, which, by the way, is incredibly well done and a very exciting season, if you like that sort of thing.  He's making some green vegetables for me for dinner.  I SO miss my veggies!  They have very few here in the hosp.

My hosp. window looks out on the floor where they deliver babies....  So sweet to think of these precious lives coming into the world.  I look up there often to remind myself of the cycle of life and that everything has a purpose and a plan....

Happy New Year!

Dear family and friends,

I hope everyone has had a wonderful New Year's holiday, with good food, good friends and good times! 

I have not written in my blog recently as it's been a rough few days and I've needed to gather my inner forces.... The chemo of last weekend began to take effect towards the end of this week.  By this I mean that the chemo takes a few days to saturate the cells and they begin to die off.  This sets up a whole chain reaction internally, as you can imagine, with pain and nausea!   By Friday I was pretty much laid out most of the day and have been sleeping off and on since, with an occasional much-appreciated visitor.  With my blood counts extremely low again, it's only been possible for me to walk a few steps without getting dizzy so I've been confined to my bed.    Today they are giving me several types of blood transfusions and -- as I write this -- I'm beginning to feel stronger.  I look at the blood dripping into my veins and wonder who it came from... What's the story of that person's life?  Am so grateful to be feeling a little better through someone's kindness.

I had another atrial fibrillation episode Thursday night so they moved me to the heart floor where they could monitor me more closely.  They will most likely move me back to the chemo floor tomorrow.   I'm getting to know quite a few of the nursing staff in this hospital!  The sweetest, motherly nurse has been on the night shift the last few nights.  She rubbed lotion onto my back and legs.  Little extras are so amazing in a situation like this.  It only took her a few mins., but I'll remember her kindness when looking back on my hospital stay for years to come.

My endurance is certainly getting stretched more than at any other time in my life. I think it's safe to say that every positive quality I have aspired to attain is getting shaken and stirred.  I visualize myself a year from now looking back at all I will have learned from this experience.  A year seems so far away right now, but time does pass exceedingly fast.  I've been in the hospital 1 1/2 months already....  Soon it will be two, then three and at six months I will have reached the end of the induction part of the treatment -- a true cause for celebration.

In the midst of it all I just keep focused on making it through the day with the help of my loved ones.  You all mean more to me than words can say.  

Heart's Love,

Heidi