Saturday, August 6, 2016

When Things Are Different Than They Seem

I'm late in writing my post this week and yet I could not have written it until now.  Perhaps that means right on time.

Last Friday, just one week ago, I had the first of my 5 cyberknife treatments at UCSF.  This was all new to me, yet I knew the way to Mt. Zion and drove myself along the familiar route over the Golden Gate and into San Francisco.  I felt well and eager for these treatments to begin.  They would eliminate the nodules in my lungs without pain or side effects.  We would work on the larger one first, flat like a pancake about 3.5 cm in diameter.  It is at the site of my biopsy a year ago in my left lower lung.

I had made the earlier trip to be measured so they could calculate the movement of my breath around this nodule.   From this Dr. Gottschalk and his team of physicists (and other scientists) did precise calculations to program the cyberknife machine and now they were ready for me to begin.

The staff was warm and informed me about every detail as we entered the cyberknife room.  It looked a bit like I was being readied for a space odyssey.  I put on a black vest with yellow velcro strips running vertically.  I wore this during my earlier measurement appointment and it tracks my breathing.  I then lay down on a very, very narrow table.  My head was cradled by a sculpted pillow.  Another one was placed under my knees.  The room was cold.  I was wrapped in white warmed blankets and 3 red lights were placed across my low abdomen to also track my breathing.

I was now ready for take-off.  My table moved to a calculated position.  The large white body of the cyberknife machine moved toward me and a huge robotic arm began moving into position.  It looked like an outer space movie.  Over about an hour, this arm move to positions all around me with it's lens opening and closing to send it's energy beam which intensified directly into the lung nodule.  I felt no sensation of its deadly mission.

Above me was a very large inlaid circle of dark blue.  There were hidden lights illuminating all the edges and in the dark blue field were tiny LED lights like stars in constellations.  Apparently they had formed shapes of actual constellations before the remodel.  Afterwards they gave the appearance but were randomly placed.  I relaxed with my breathing ~ alternating between closing my eyes in rest and gazing into the "night sky".  Since we were actually in the basement, this was a very spacious touch.

I felt fine as I drove home.  However, over the weekend I gradually lost my appetite and my energy.  Dr. Gottschalk had explained that patients don't have any symptoms or side effects.  I had my next appointment 4 days later.  This time I felt deep chills during the treatment and all the way home.  I couldn't wait to crawl into bed and soon had a fever of 101.1.  My #3 treatment was 2 days later.  Again I felt ill.  I spoke with one of the nurses.  Because of what I had experienced in Vienna, I felt fairly certain that this was my immune response and actually a good thing.  She confirmed that most of their patients could not raise a fever.

For most of us this is a curious thing, the opposite of the way we think.  My best outcome is that my immune system recognizes the dissolution of the nodule and mobilizes a hefty immune response to clean up exposed cancer cells ~ a secondary therapeutic benefit.  However, the symptoms this causes are what we have learned to call sickness ~ fever being #1.  The media and the medical care system have convinced us.  And, we hate feeling "sick" so we take meds to halt the fever which also halts our immune system's first best efforts.

It's true I don't like feeling this way, yet it is actually a good sign that my immune system is in the game.  I don't want to take it's moves away.  Sometimes things are not as they seem.  Today I go sit in the garden sunshine and feel better.

Love, Carole


 





 

Friday, July 29, 2016

Unexpected Lessons, Still Coming

Hello again.  When I wrote to you in May, I thought I was back.  And, then I wasn't.  I am borrowing this title from Iris, one of the leaders of our monthly Elder Salon.  Unexpected lessons, still coming,  perfectly describes the healing journey I have been in.  After I wrote you in mid-May, my health took a serious dive, or at least it is how it appeared.

I was getting weekly IV's ~ 2 liters of saline each week in an attempt to coax my sodium levels toward normal.  My blood levels would try to approach normal (a very thin range of 135 - 140) and then plummet again.  This began taking a greater and greater toll on me.  I could barely eat.  My equilibrium became precarious.  I couldn't hand write a card or message.  I couldn't dial the numbers on a phone to place a call.  I gave up on the computer for about 6 weeks.  In the night, I was thirsty so I poured a glass of water from my pitcher.  I missed the glass and it went all over the counter and I didn't realize this until I tried to take a drink and there was no water in my glass.

My friend Nan came to sit and read to me a new book called Martin Marten from an author we love, Brian Doyle.  I couldn't read.  My memory was terrible.  The best thing I could do was sleep very deeply at night and take a long deep nap during the day.  Friends brought us lovely food for dinner and Chalon brought me food secrets along with her husband Dan from Ceres, a group that prepares nutritious meals for cancer patients.  I received cards every day and flowers filled our front room.  We had a lot of beauty here.   I was unable to write thank you notes and yet I felt so held in all the love that blessed me.

Just before the 4th of July I went to see my primary care physician, an internist named Dr. Jonathan Morse.  He listened very attentively as I told him again how much my life had deteriorated.  I felt I was doing what I could do under the circumstances.  He rolled his stool over and looked me in the eyes and told me this:  "Carole, not only is your ADH hormone not working and preventing your kidneys from regulating your sodium level properly, but now the hormones that regulate your brain to feel hunger aren't working either.  We are going to have to trick your brain to eat using a couple of medicines for the short term." 

I felt energy quiver when he told me this.  Something in me responded.  I placed the small pill under my tongue to take away the queasiness and nausea and ate real food.  Then along with the food I took a liquid medication to stimulate my appetite.  In 4 or 5 days and in time for the 4th of July, it was as though someone had flipped a switch.  I was suddenly back with a deep reserve of peaceful energy.  All my abilities returned too.  My blood test on July 5 showed my ADH and my sodium levels were now normal.  A huge surprise.  I had to cancel my IV appointment for that week, and then the next and the next.


I truly am back!  I also connected with Dr. Gottschalk at UCSF and met with him during this same time period.  He is going to do his cyperknife treatment and remove all the remaining nodules in my lungs.  I had asked for this a year ago and could not find my way to him.  Now I go for my first of 5 treatments tomorrow.  No pain, no side effects and no knife.  It's just the name of the machine.  This is also the time period, the 6th month, when Dr. Kleef had told me the benefits of the immune work we did in Vienna would peak systemically.

For me, the unexpected lessons were still coming.  Treatment results unfolded over time.  While I may have been healing at a deep level, it looked as though I was terribly ill.  Many times what we call sick is actually our immune system doing it's work.  Having a fever would be a familiar example.

I'm still a bit stunned.  Some deep healing must have been at work underneath all the illness for me to suddenly be back, free of symptoms and with all my faculties completely restored.  Usually it takes a long time to restore energy and build energy reserves after a lengthy illness.  Mine were fully intact and readily available to me suddenly.  My unexpected lesson is that part of healing was my surrender and the loss of functions.  What looked like I was getting worse, deep underneath something better was happening.

I surprisingly was not afraid.  My head could not figure it out.  Clearly healing is a complex process and it doesn't always look the same or follow a linear line.  There is a bit of mystery in it all.  I thought I was back in May, yet now I am truly back.  Sometimes we don't know and perhaps it is just as well.  In fact, not knowing may be necessary to allow the full unfolding to reveal what may be hidden from our ordinary minds.

I do know how thrilled and grateful I am to be back ~ and that being held by a loving community truly matters.  It is actually a beautiful thing not to be able to explain it all.

I have missed writing to you every week and now I am back for my blog.  I have lots to share about my time in Vienna too and the many layers of experience and the unexpected lessons there.

Thank you for being patient in my absence.  I missed you.  I wonder if we can remember those other times for us when we thought things were one way and then discovered the unexpected lesson they were other than we thought?  Carole


Thursday, May 12, 2016

The Return

Hello again.  Last week we sat on the beach in Brookings, OR as a baby whale played in a breaking wave almost on shore.  He or she popped up her little head and eyes often to take a look around.  Then its fluke flipped upward and its tail.  We speculated that Mama whale had parked her babe in the little bay by the harbor while she went out further to feed before they continued northward on their return migration from the Baja lagoons to Alaska.


We also had returned to Brookings, an annual journey back to visit our friends Larry and Charlotte and take in the gifts of being by the sea and the Chetco River.  I knew I needed to be nourished  by the smell of the salt air, the sound of the waves and the whales.  I have been living in the medical world since we left for Vienna on January 6.  I needed the rest and relaxation of being in Nature to heal and restore myself.  It was time to sit on the beach watching the whales in the cove and have supper and a campfire with our friends until the sun was done and we saw the first stars in the dark night.  Even the sun departs and returns every 24 hours.

My departure for Vienna became something akin to an old Mythic odyssey.  I had chosen a course of treatment to heal yet I met many unforeseen forces and passages along the way and these changed me.  In an epic manner, I came home with the gifts of my experience and changed by them.  I never dreamed I would be away so long from my writing each week and now I can finally return again.

Over the next weeks I'll share more about my journey to Vienna and back.  Like the Danube that runs through the city deep and wide as it returns to the Black Sea, each day held a complex story of simple daily life, sweet meetings, returns to WWII and even a near brush with death ~ too much to write in this one message.  Lao Tzu, on the other hand, writes one poem to reveal the truth of it all.

Thanks to Iris and Trymon, I share this poem with you ~ so happy to be back.  Love, Carole

We Are A River

Our live has not been an ascent
up one side of a mountain and down the other.
We did not reach a peak,
only to decline and die.
We have been as drops of water,
born in the ocean and sprinkled on the earth
in a gentle rain.
We became a spring,
and then a stream,
and finally a river flowing deeper and stronger,
nourishing all it touches
as it nears its home once again.

Don't accept the modern myths of aging.
You are not declining.
You are not fading away into uselessness.
You are a sage,
a river at its deepest
and most nourishing.
Sit by a river bank some time
and watch attentively as the river
tells you of your life.

- Lao Tzu


   

Tuesday, January 26, 2016

Update on Mom



Before Mom left for Vienna she had a call with one of the many doctors she has recruited to be on her advisory team. Dr. Sweet told her that if she personally ever faced a life-threatening illness she was going to summon memories of conversations with my mom as a model of what’s it’s like to “live, live, live.” I like this phrase. It captures the essence of my mom so well.
It’s been almost two weeks now since Mom arrived in Vienna and I wanted to pass along some updates to the team (that’s you) who have supported her pursuit to “live, live, live” in the face of uncertainties.
Francisco will be heading home this week and our cousin, Etty, will fly over to be with Mom until I get there on the 29th. As anchor to the traveling team, Francisco is currently cooking up a giant batch of lentil soup for Mom because “it’s damn cold outside.” He’s also helped her to master the Vienna underground while they went to treatments, x-rays and ultrasounds all around the city. Together they discovered places like a nearby coffee shop that makes homemade vegan soup in addition to being a bicycle shop and clothing design shop (a 3-in-1 business).
The city of Vienna has a lot of significance in our family. It’s the place where, against all odds, Dan’s mom and grandmother survived World War II. Some 70 years after one mother-daughter team scrappily assumed a new identity to evade the Nazis, my mom and I will now retrace their footsteps. I also love that Branka’s friend, Traude, has become our guardian angel in Vienna. She’s hosted homemade dinners, translated German, and picked my mom up from the clinic on particularly intense treatment days.
My mom lost her computer somewhere along the way to Vienna so she hasn’t been able to do her blog or respond to emails. She called me this morning and wants everyone to know she’s fine and that her silence is simply a momentary sabbatical from a computer. She sounded both tired and confident. She says Dr. Kleef is delighted by how much health she has in her body. I think it’s good medicine for her to be in the hands of someone who honors her health, not just the cancer.
Thank you again for your support. The donations, calls, notes of support, and videos that pour in each day are really touching. Facing uncertainty and walking alongside mortality is super humbling but feeling connected to a community of support turns out to be the silver lining. If we can ever help you to live, live, live your dreams please know that we are on your team too!
With love,
Chalon

Thursday, January 7, 2016

When Life Goes Topsy-Turvy

Epiphany Twelfth Night Cake
Last week I received an email from Kayleen Asbo of Mythica with still more rich and chewy details about this season of the Epiphany, the twelve days between Christmas Eve and January 6.

In Medieval times these 12 days included the celebration of the world being turned upside down ~ kings and nobility were to serve the table, while the peasants were to partake of an abundant feast.  A person would be crowned the Lord of Misrule.  Later, this would evolve into a path of rejecting some of the values of the time in order to uphold the values of the heart and soul.

Kayleen suggests that this is an excellent time to enter into the questions the Twelfth Night offers to us:  What needs to be turned topsy-turvy in your life?  Where are the places in your life that are upside down and need righting?  How can you make a feast for the lowliest and cast off parts of yourself?  What has ruled your life that now needs to become a servant of your soul instead?

For me, clearly the diagnosis of pancreatic cancer turned my life upside down.  And, it's been a time of many epiphanies over the past 3 years ~ even the discovery of how special holidays change as I wonder each time if this will be my last one.  For me, not taking it for granted that there will always be another birthday or Christmas or Thanksgiving, invites me to be very present to this one right now ~ to cherish it.  I also find myself very consciously thinking about whether to hold a grudge or be upset with others.  Is it really important to use my energy that way?  Mostly not.  I've learned to relish being grateful and to say I love you a lot.  What am I waiting for?
Christmas season in Vienna
I've been shown hidden gifts.  There is a line in the Christmas carol O Holy Night that I had never heard before  ~ when my soul felt its worth.  I thought about my own journey and all the women in my work and life searching for more authenticity and joy.  Who am I? and What is mine to do?  If I strip away all the roles I've invented, what's left?  Perhaps that moment when our soul feels its worth is the true transformation epiphany.  

Another message arrived via Michael Meade from the poet Hafiz.  "The New Year is not something before us, it is something hidden within us trying to find the light.  Don't wait for the right gift to be given to you.  Look inside instead and find the Holy message trying to be opened."  Looking within instead of without, already there instead of something to come are topsy-turvy shifts.

Asking for help without shame is a topsy-turvy act in our culture.  We have to admit our vulnerability and need of others.  Then to graciously receive the help offered is yet another revelation.  If my soul hasn't felt its worth, it probably isn't likely.  Some beliefs have to go topsy-turvy to allow this circle of grace to move freely.  In my wildest dreams I did not foresee using the GiveForward website to fundraise for medical care 3 years ago and now I've done it not once, but twice.

Welcome, Baby Mina on New Years Eve
Another delightful topsy-turvy happened on New Years Eve.  Little Mina Graciela was born that morning to my niece Molly and her husband Abner.  I know how a tiny baby can turn a family topsy-turvey very quickly.  In 1979, when my daughter Chalon was 12 years, we lived for a short while with my brother Jim and his wife Jane when Molly (little Mina's mom) was born on January 12.

Molly was their firstborn and we were all eagerly there at her birth.  I remember thinking a couple of weeks later how amazing it was that this tiny being had 3 adults (and I was pediatric nurse) and her 12 year old cousin barely able to get the laundry done and dinner on the table.  For a time, days and nights blurred as though one enters some other time zone from the rest of the world.

I'll be traveling through 9 time zones to fly to Vienna, Austria on the Feast of the Epiphany, January 6.  It's winter there and very cold, certainly not a tourist destination this time of year.  I had no idea this would be my journey even 3 months ago.  Leaping in trust can be a topsy-turvy choice.  Something deep within is guiding and I am following.  Right now, my strategic mind is not ruling but becoming a servant to my soul.  It's a knowing beyond explanation.

"It is a time of wonder, surprise and revelation, the hallmarks of the Epiphany," offers Kayleen.

I am deeply grateful,
Carole

If you would like to learn more about my Circle of Support Give Forward website that is part of my topsy-turvy, click  https://www.giveforward.com/fundraiser/xn1c/a-circle-of-support-for-carole



  



  

Thursday, December 31, 2015

The Sacred Sojourn and the Gifts We Bring Home

On Wednesday, January 6, I leave for Vienna, Austria for 5 weeks to receive gifts of healing.  Amazingly this is also the Feast of the Epiphany, a national holiday in Austria, celebrating the 3 wise men, the Magi, following the North Star to bring gifts to the baby Jesus.  I return on Valentine's Day another holiday of gifts of love.  Somehow that pleases me deeply to be held in a bigger story of love and giving gifts.

On Sunday I heard a phrase, sacred sojourn.  Something in me lept up and clapped my heart.  "That's it.  Exactly it.  I am going on a sacred sojourn."

The other amazing thing is that it doesn't all begin on January 6 when we step on that plane.  I will have envelopes and cards with me, Christmas gifts from my grandson Sam and granddaughter Lucy.  Each one has instructions on the outside of the envelope about when to open it.  There is even one to open on the plane as we journey to Austria.  Inside they have tucked a message of love and support for each moment.  Could there by a more elegant and simple gift?

The 3 wise men came with their 3 gifts of gold, frankincense and myrrh ~ and I learned from my friend JoAnn that it is now believed that the gold was actually golden turmeric, all known healing potions.  She gave me a gift of frankincense and myrrh essential oils and told me about turmeric, often called the Elixir of Life.  I've been anointing my skin with the essential oils and taking turmeric by mouth every day.  Collectively they are known for their anti-inflammatory, antioxidant and anti-tumor benefits through improving immune function.  I'm living in the bigger story, my heart knows it.

My friend Jude made me a beautiful pillowcase for my pillow in Vienna and beyond.  She offered, "there is love and healing in very stitch."  When I showed my friend Lisa, her immediate response was that it looks like the starry, starry night (of Van Gogh).  Already I have experienced my community going with me as a nebula of stars (or tea lights) and know this is an essential part of my healing.

Earlier Robin shared with me a quote from Thich Nhat Hanh.  "There is no distinction between the one who gives, the one who receives and the gift itself."  I feel this coming alive as I ready to depart on my sacred sojourn.

I was curious and I looked up the words sojourn and epiphany.  Sojourn is from Old French and Latin and means to reside somewhere temporarily, as a guest or a lodger.  Epiphany is from the Greek epipaneia, meaning a manifestation as in an experience of sudden or striking realization.  I have loved the word Epiphany for a very long time.  Both feel intimately woven into this journey to Vienna.  Can you feel it?  How the personal and the universal, the individual and the communal, the inner life and the outer experience are connected?

And because sojourns are temporary, we return home and what we bring back with us is not only the gift to the center of ourselves but also a gift to the world.

And it is the beginning of the New Year 2016.  A beautiful image just arrived from mythologist and storyteller Michael Mead from Poems for the Soul by Hafiz.  "The New Year is not something before us, it is something hidden within us trying to find the light.  Don't wait for the right gift to be given to you.  Look inside instead and find the sacred message trying to be opened."

 Carole

Thank you Dr. Rev Edward Viljoen for the language of the sacred sojourn.  Sometimes words connect directly with the experience of our inner pilot light as this did for me.

Also, if you would like to know more about how you can join my Circle of Support community, please click this link for my GiveForward webpage https://www.giveforward.com/fundraiser/xn1c/a-circle-of-support-for-carole

Thursday, December 24, 2015

When I Surrender

I can feel it.  I am feeling drawn by a purpose that doesn't talk to me or tell me what to do.  It is simply an experience that I know in my core is inviting me to surrender in order to heal.

When my friend Linda returned from Italy, we met to enjoy afternoon light fare and a glass of wine.  She shared her Italian days and what she met within herself ~ how she found herself following an invisible thread that pulled her forward into adventures, uncertainties and glories each day ~ with an occasional dash of misery.  She settled something for herself in the process and her imagination sprung through the open door.  Something is definitely "afoot".

I told her of my search for a next step in treatment.  We talked about the options I was weighing.  Then she offered something like this, "I sense you might need to go away to find the healing you need, a sanctuary to heal."  "Yes," that felt true to me.  Later I heard the word "dissolving".  That felt close to this truth too.

In our culture, the notion of surrender is usually only held disparagingly, akin to being a loser, giving up, failure and shame.  Right now I experience surrender as aligning myself with this season of miracles and something "afoot" that allows for deep, deep discovery.   When I look out on the trees in my neighborhood, they are barren and brown.  They appear dead.  Yet, I know hidden within is the spark of life that must live in its secret world right now until the time for greening returns.

Surrender is not passive.  It is an act of enormous courage and trust and I feel it deep within.  I've done my research.  I'm making all the arrangements.  I know the treatments I will receive.  I know the costs.  I've met Dr. Kleef on Skype and I know his credentials.  I've felt his humanity.  Now my part is to truly surrender to all the care and treatments so my body can heal and my immune system can go to work.  There is power hidden in this process itself.

It's not possible to "strive and push" my way out of cancer.  It's not about if I'm really, really good and do all the right things ~ eat the right foods, take all the right drugs or herbs, visualize and pray and meditate and so on that I'll be given what I want as an outcome.  I do choose to do many of these things to take care of my health and yet all these right things can easily be driven by fear and the notion of being in charge and then deserving reward.

When I surrender my willfulness, gifts begin to flow.  Creativity unfolds.  Possibilities become available.  Something begins to stir softy in its deep reserve ~ something older and vaster than any of us.  Scientists who study the universe admit that there is more invisible than visible, more unknown than known.  Our own bodies contain mysteries and the deeper we go, the more there is to discover.

I personally know more than a handful of people who have suddenly healed from quite advanced cancers including pancreatic cancer and they all chose different approaches, some with modern Western medicine and others not.  For me, I am curious.

Whenever I check back in with myself, that sense of profound surrender is following me.  It is there.  An image has appeared ~ a nebula of stars or tea lights coming with me as I travel to Vienna.  I experience these twinkling lights as the love and support of community and in some mysterious way contributing to the healing process.

I also remember a poem by David Whyte, True Love, in which a moment comes when we have to say "yes"

So that when
we finally step out of the boat 
toward them, we find
that everything holds 
us, and everything confirms 
our courage, and if you wanted
to drown you could, 
but you don't,
because finally
after all this struggle
and all those years,
you don't want to any more. . .      

It has something to do with releasing the struggle and in the surrender, peace, spacious peace moves in.  Perhaps healing emerges in this deep pool.

When I listen to the part of me that knows. . . (from song by Melissa Phillipe)
Carole