Saturday, July 22, 2006

The nurse who draws my blood at the South West Cancer Center is lovely. No, I mean really. Her name is Cheryl Lovely. She has caramel coloured skin and large brown eyes , a heart shaped face framed in black ringlets. The first time I went back to the lab where the blood work is done, I had an entourage: Gina, Jim and my dear friend Joel. She asked if we liked to dance and we said yes. She showed us some moves. Joel and Gina tangoed across the floor. Gina took stealth pictures with her phone. She took a shine to us and we to her. She asked me if I knew that "sassy little mama, Lexi Perlmutter". I said "of course". "I thought so... you must be trouble just like her," she said with a wild look in her eyes. "You bet!" We laughed. " Good!"

An old black woman was having her blood drawn beside me. There was a far away look in her eyes, the shadow cloak of invisibility wrapped around her shoulders. It was as if she were no longer here. Her breathing was shallow. The pain in her body had sent her away. I worried about how much fun we were having, as if our joy and playfulness might somehow cause her more suffering. She may have been too withdrawn to notice or care. I felt a deep sadness for all the people who were there alone; silent, frightened and waiting.

Nurse lovely took the blood from my left arm, carefully protecting my right arm from the risk of lymph edema. She joked about being a vampire. She explained to me how she was never going to tell me, "poor girl... you have cancer, how aweful!". I told her I liked that. "Why do you think I like working here?" she asked. I didnt know.

"Becasue, I get to see miracles everyday... I have already claimed your healing." She held my face in her hand and kissed me on each cheek.

There is an angel in the lab. She is lovely.

Friday, July 14, 2006

A Poem from My Son

Today at 9:30 Costa Rican time
When you were in the doctor’s office
Waiting to receive you chemo
I planted a tree for you.
I don’t know what kind of tree it is.
It is from the Guanacaste.
It is funny looking.
Its trunk is thinner at the bottom
Than it is at the top.
But despite this counterintuitiveness
It is a strong tree.

I told you I would be in an orange tree
Meditating for you
At 9:30
But I know that doctors are always late
So I waited until 9:41.
And the orange tree wasn’t as comfortable
As I thought it would be.
So I walked past the orange orchard
To the cattle pasture above my farm
And sat under a poro tree
And meditated with the cows
Overlooking the emerald valley
That pours over the mountains
Falling to the sea below

This is where I was
When you received your chemo.
I figured you would be closing your eyes.
I wanted to take you out of the doctors office
And up to a mountain top
Like the time I dragged you up
To Lake of the Angels.
I tried to summon up all of my strength
And the strength of the land around me
To send you my love
I remembered how hard it was for you
To make it to Lake of the Angels

When I was walking back down to the house
I had to machete my way through
Invasive vines and weeds
That were choking the orange trees
And obscuring the trail.
I passed the tree I planted for you
And imagined it in 50 years
A giant

Monday, July 10, 2006

The Peace of Wild Things.

When despair for the world grows in me

And I awake in the night at the least sound

In fear of what my life and my children’s life may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought of grief.

I come into the presence of still water.

And I feel above me the day- blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

-Wendell Berry

"Water that flows down the mountain does not think that it flows down the mountain.

The cloud that leaves the valley does not think that it leaves the valley.”

-Tran Thai Tong, Viet Namese Zen Master

There is little suffering when one awakens to the moment, living without forethought of grief. When I asked Dr Doty if this treatment would save my life he said, “I can't give you a blank check. Life is a gift.”

My oncologist is also my Zen master.

Decision Making on the Front Lines

I really think that it’s important to get a second opinion, and a third and
fourth. An interesting piece of research I read pointed to an
unusual fact: breast cancer patients rarely get second opinions. I think it
must be the fear, the driving need to press into action and the difficulty
of sitting with uncertainty. If it weren't for much practice at sitting at
the edge of the unknown, I would have moved more quickly into treatment.

Instead, I decided that I would listen to four brilliant voices. It takes a considerable amount of research just to determine who those voices should be, which is another reason that newly diagnosed women, emotionally and spiritually struggling to come to terms with the diagnosis itself, and the aftermath of surgery, often do not have the capacity to do due diligence. Shock diminishes cognitive capacity. .

Suddenly, I became a researcher in order to save my life. There is much information, sometimes very contradictory and at the end of the day, uncertain. I ask the questions, “What is the best treatment?’, “What is preventative?” And most importantly, “What heals?”

I had two consultations in Austin with the best people I could find, piggy backing on the research and experience of two dear friends, Ann Kay and Lexi Perlemutter, two fabulous women ahead of me on this journey. Feeling confident with the treatment and empathically connected to your oncologist is vital. As Lexi said, “If you think transferences develops with your therapist, that’s nothing compared to your oncologist. Your life is in his hands”. Lexi’s husband, Mark, is my attorney. I know him well enough to know how he would have do everything in his power to make sure that this woman, the love of his life, is in good hands.

I learned that I have Stage 2 cancer, more advanced than what I originally understood. I also learned that because I am not estrogen receptor or HER 2NEU positive, my cancer is
considerably harder to treat. Or as my brilliant friend and Doctor of Oriental Medicine, Nalini Chilkov says, “Western medicine isn't so sure what to do with you”. I thought to myself “neither do a lot of people!” She reminds me however, that what I do have is my immune system and with her help I can determine just how to work with those issues. Certainly the enormous love and support that I have been so touched by,
becomes an intrinsic part of that immuno-matrix, along with attitude,
nutrition, exercise and spiritual practice.

Both oncologists recommended chemo. The analysis of the tumor suggests that I have an extremely aggressive cancer, a 9 out of 9 on the Bloom- Richardson scale. Dr Doty, Lexi’s oncologist, presented me with a very aggressive treatment protocol that had significantly higher survival statistics, but I would need cardio clearance. Dr Kampe presented me with a less severe regime, but one that had less of a successful statistical outcome. In the meantime I had a bone scan, a breast MRI , chest, pelvic and abdominal CT scans and an eco cardiogram. More testing, more sitting at the edge of the unknown, waiting and wondering about the invisible world inside my skin. It was only six weeks ago that cancer was the farthest thing from my mind. Since then whatever remaining cancer cells still inside me are going about their business: they are reproducing. While I am waiting for test results, they are reproducing. While I am researching the question of chemo therapy, while I am deciding which oncologist to work with, while I am sitting with patients they are reproducing. While I am laughing or crying or reading a poem…and while my friends pray like the angels in heaven.

While a tumor is growing, metastasis is suppressed. When a tumor is removed any remaining cancer cells then move into metastasis mode. There is a window of time where the body is both more likely to metastasize and yet more amenable to chemo, as chemo targets rapidly dividing cells. I had to make critical decisions, evaluating what level of risk I am willing to endure. The risk of chemo, its severity and long term down sides well documented by the alternative medicine perspective, weighed against the risk of not moving aggressively enough. The decisions needed to be made and treatment, whichever I had decided upon, needed to begin by no later than the first week of August.

Dr Doty encouraged me to get a second opinion with Dr Joyce O Shaughnessey in Dallas, in his opinion one of the best in Texas. My lifelong friends in California, Jon Gordon and Laura Dern, connectd me with two of the best breast cancer specialists on the west coast, at Cedar Sinai in LA, Dr Ed Phillips and Dr Kristie Pado. I have a deep affection for Cedar Sinai. It was a young resident at Cedar- Sinai who saved my live when I was 16, diagnosed with the first case of paratyphoid fever in 30 years. Could they do it again? Omens come into play in this journey. The mystery has many layers.

Within a week Dr Doty consulted with Dr O Shaughnessey and Dr Pado. He got me in to see my cardiologist to determine whether my heart could withstand Adriamyacin without damage. He called me mid week to let me know his progress. Dr Pado called me and generously spoke with me for over forty minutes, reassuring me, explaining things I did not understand about cancer and its treatment. She also offered some important thoughts about standards of care. Both O Shaughnessey and Pado agreed with Dr Doty’s thinking about treating the cancer more aggressively than the first oncologists I consulted with. This regimen would give me a significantly better survival outcome. There was another suggested regiment that was more aggressive but not proven to yield a better outcome and the impact on the body is very rough.

I now had the four brilliant voices I was looking for to illuminate a treatment path in which I could believe. More consultations than this would have left me feeling overwhelmed and confused. Dr Doty clearly showed himself to be the western medicine healer I sought. I was humbled by his willingness to be a team player, the clarity of his thinking and the fullness of his engagement in every aspect of care. At the end of the week, the other oncologist’s office called to say that I had missed the follow up appointment. Their scheduling desk had written one thing on my appointment card and another in their books. But I had already decided who I wanted to work with. I was already working with him. We had covered a lot of ground in short but critical window of time.

We scheduled the first chemo session to begin on July 14, 2006. Bastille day…My fathers birthday…Powerful and appropriate. I gave myself one week to prepare for the battle ahead, 16 weeks of lethal chemicals designed to save my life

Keep me in your prayers.

One Year Later

He slides his fingertips

along the inside of her thighs.

Blood races below her skin

to meet his touch. He makes

a circle of kisses around her breast,

then a line of kisses along the straight scar

on the other side. She weeps.

She'd imagined this, him

turning away at the sight of it,

of her, the marriage thrown

off center-like her body-

with the grief and weight

of what was lost.

She was wrong. Now,

one year later,

all the markers are down,

and there is no imbalance,

only the absence of weight,

the celebration

of what wasn't lost.

- Erasmo Vasquez

My friend,Erasmo, was a cuban refugee as a young boy and still those rythmns move though his sensual poetry like music. I think Erasmo undertands how time punctuates more than it heals. I look at my breasts. One now, much smaller than the other and still blue from the radioactive isotobes used for the lymph mapping. My housekeeper, Carmen, shakes her head and says in Spanish "chi-chis azules". We laugh. I can't speak much Spanish. She can't speak much English. Yet we are women; we speak the same language.

I dont know who will kiss the straight scar that runs like a gash in the mountain, underneath, from one side of my breast to the other. But I do believe that one year
from now, more will be gained than lost.

Thank you, Erasmo

Tuesday, July 04, 2006

The mind can go in a thousand directions

But on this beautiful path, I walk in peace

With each step, a gentle wind blows

With each step, a flower blooms.

-Thich Naht Hahn

Breathe...come back to this moment...I notice the sound of the gentle rain on the metal roof. Opening the door to the deck I see the new limes on the tree, the orange hibiscus blossoms are opening, the air is moist and warm.

Breathe...come back to this moment. I notice the thought, " I have cancer".

Breathe...come back to the moment.

Cancer is only one thread in the tapestry.

Only one.

Monday, July 03, 2006

If today you can awaken to the miracles of blood and bone
and feel grateful for a body that heals itself,
You also retain the potential to restore the magnificence of your
original genetic blueprint.
Drink softly from the deepest heart of the Divine!
Feel the heat, spreading, working its way into the inner core of your body,
generating warming oozing energy from the sun,
Every strength drawing towards you, gathering, building within you more each day,
Allowing God's omniscient love to pour through.
Radiant light, essence, soul, the life force of being, nourishes,
colors explode into life,
As you dance to the music of the Spheres.

This group poem was inspired by Lisa Mersky. Lisa asked several beloved friends from the support team to offer healing words, then wove them together into this beautiful blessing. It reminds me of Rumi and the spirit of the dervishes. The image is one I shot last December in Cairo. For me it carries the heart of the poem.

editor: Lisa Mersky
contributors include: Charlotte Howard, Jon Gordon, Terry Arzola, Joan Anderson, Rhonda Glick, Peggy Kelsey, Karen Owens, Charlie Love, Nancy Kelly, Nina Davis, Joan Anderson and Tim Coffey.

thank you for such a beautiful reminder.

let us continue to awaken to the miracle of sacred friendship!