The Quest

Shortly after the liver biopsy, I finally let that word—metastatic—into my consciousness.  Partly because otherwise I couldn’t explain all the tests I was undergoing.  There was another place in my body where the cancer was coming from and landing in the liver.  Because the liver has no nerve endings, there was, gratefully, no pain.  But I found this suspicion of another location troubling.  It was vague and raised so many possibilities.  None of them welcome.  I would have been happier if the cancer were in just one place.

I had recently lost a close friend to cancer.  In sitting with her as she approached death, I remembered how she had found deep peace in the process.  Would I be as gracious as she, I wondered.

Any serious illness is a journey. Modern medical technology has developed such a variety of ways to examine the body.  I had most of them:  sonograms, scopes, scans, and imaging.  A total of nine.  Some involved ingesting awful-tasting liquids, others required entering cave-like, sometimes noisy machines.  I was curious about what we would learn from each test.  If you ask for it, the lab will give you a cd with the pictures of what the test revealed.  Kind of gross.  Mostly we relied on what the expert wrote about the findings, which were sent to me at the same time the doctors received them.  Over and over, the results were unrevealing. (I took that as good news, although it still left me with an open question--and the unsettledness that accompanies uncertainty.)

It became clear that wherever that source cancer was hiding, it was not located in the “usual suspect” places or was not sizeable enough to show up.  So the plan was to treat the liver with two doses of targeted radiation, a few months apart.  Our favorite doctor, who would actually carry out the procedure, explained it thoroughly and even showed us the solution used.  Selective Internal Radiation Therapy (Y-90) delivers millions of tiny radioactive beads directly to the liver tumors.  A week before the radiation, my liver would be mapped to show which veins need to be blocked so that the radiation went only int the tumor itself.  They would treat the largest tumor first.  The hoped-for outcome would be shrinkage of the tumor, or at least control of its growth.  I had the mapping on May 24 and the first treatment on May 31.

In no way was I ever alone in these months before and after the first treatment.  As I took leave from my community activities—especially advocacy for grandparents raising grandchildren and other kinship families, and helping asylum-seekers coming through Tucson on their way to family and friends—my colleagues wished me well.  I participate in two faith communities, and both prayed for healing and comfort.  My amazing children arranged to take care of me.  Cathy was able to get permission to work remotely, so she was my primary caretaker.  Close friends provided transportation and emotional support during the times of testing.  I didn’t tell the whole world through social media because I didn’t have the time or energy to reply nor did I want to start getting messages about miracle cures and alternative interventions.  Often my mind would turn to Andy.  Although he has been gone for 18 years, he is always close in spirit and support.  And I continued to listen to music and read  and meditate.

Some of the resources that helped me during this stage:

A social worker named Belleruth Naparstek has created may guided meditation CDs.  I had used the one on preparing for surgery when I had knee replacements.  Now I listened to one on cancer and another on relieving stress.  Very calming.

My meditations seemed to lead me to think about the oneness of all creation and about transitions.  From one of Richard Rohr’s daily posts:  In Thich Nhat Hanh’s words, “Enlightenment for a wave is the moment the wave realizes that it is water. At that moment, all fear of death disappears.”

Two songs with almost the same titles, but a different way to express the theme, are Sweet Honey in the Rock’s “Breaths” and Sara Thompsen’s “By Breath.”  I listened to both many times.  Sweet Honey in the Rock also has a beautiful and hopeful song called “We Are One.”  There is a youTube version with an interpretive dancer.

And more than ever I felt supported by the many people who told me they were holding me in the Light.  Bless you!

Addendum to Who Me? What?

Resources

I meant to include in each posting a few resources that were helpful to me at that point in the journey. I forgot to add them the first time, so this an extra blog post containing a few items that gave me hope at the outset.

Stories have been a favorite way to learn and to teach.  The Moth (a national storytelling program featured on npr and online) has a new book called The Moth Presents Occasional Magic:  True Stories about Defying the Impossible.  The stories are from many perspectives and cover many situations, and they certainly have entertained me and given me hope.

Music always inspires me.  I listened over and over to Sara Thompsen singing “Deep Peace.”  You can find it on youtube at https://www.youtube.com/watch?v=kb-FAOe396U .

There was also a blessing written by Jan Richardson from her book Circle of Grace which I shared with many people early this year because it seemed so appropriate for activists and others discouraged and in despair over politics.  As I was learning that I had cancer, it seemed relevant to some of the experiences of myself and others in this new reality, and I read it often.

Blessed are you

who bear the light

in unbearable times,

who testify

to its endurance

amid the unendurable

who bear witness

to its persistence

when everything seems

in shadow

and grief.

Blessed are you

in whom

the light lives,

in whom

the brightness blazes—

your heart

a chapel,

an altar where

in the deepest night

can be seen

the fire that

shines forth in you

in unaccountable faith,

in stubborn hope,

in love that illumines

every broken thing

it finds.

Jan Richardson

Who me? What?

All my life I've prided myself on my naturally good health. People around me came down with colds or flu. I took care of them. I used an exercise bike and went to pilates. Had plenty of energy.

Then occasional bouts of serious diarrhea started to hit me several times a month. This is an inconvenient malady for an active person, so I went to see my doctor just after the holidays. He thought maybe gall bladder and sent me for a sonogram. Turned out to be a humbling experience...

The sonogram image was stunning. Nothing worth noting about the gall bladder but the liver looked quite interesting. There were three big yellow circles on it. Two huge and one smaller (looked like party balloons) and a host of bright speckles, like stars, all over the rest of the liver. Hmmm. Even though my first thought was of three moons on a starry sky, I realized this image was of my insides.

The diagonis was metastatic neuroendorine liver tumors (NET). My mind couldn't take it all in. Tumors, okay. I knew more or less what a tumor was. Neuroendorcrine was a new word but I acepted it and decided to look it up later. It was the word metastatic that my mind refused to recognize or accept as relevant.

Next step - tests. Many of them. One of the earliest was a liver biopsy. I'd begun to acknowledge results so I expected it would say that the tumors were cancerous. The doctor who called to give Cathy the results said "You get old. You get cancer. You deal with it." We liked her straightforward approach. She answers questions directly and promptly. She listens well. So we are glad she is our de facto team leader - even though there is another designated chief who appears once in a while to ask how I'm doing and then thankfully, wanders off.