Gratitude

Walking slowly, watching out for any obstacles in the path ahead, my friend and I lamented that we hadn’t fully appreciated our bodies when we were younger.  Then we weren’t so stiff and we climbed stairs quickly and easily.  Could even touch our toes on a good day!  Now I’m grateful to be able to stand up and walk, however slowly.  Thank goodness for banisters, canes, walkers, wheelchairs, and other assistive devices that may be needed in the future. And kudos to those innovative people who are building wheelchairs designed for countries where the terrain is rocky and unstable—wheelchairs that can be locally produced using bicycle parts, for example, like the ARSOBO project in Mexico.

I don’t have a “bucket list”, although there are things I would enjoy doing soon, like taking a cruise with family or riding the train across Canada.  What I do have is a gratitude list:

·       

     Grandchildren:  Three of mine created a jar of vitamins for the soul—painted blue, it contains messages written on small scraps of paper.  I was instructed to  take one a day during my recovery from radiation treatments.  Some contained happy memories, others recommended movies to watch or books to read, others were affirmations.  All were full of love.

·       Good insurance:  My co-pays and deductibles have been reasonable under my Medicare Complete plan.  Twice the insurance company denied a request, but both times my doctor was able to get them to change their decision.

·       Friends and family and other caring folks:  I’ve received cards, calls, email messages, flowers, visits, and more.  In addition to prayers from individuals, my faith communities pray weekly for my healing as does a Sikh group a friend attends. My definition of prayer includes those who are holding me in the light or in their heart or in their minds or sending positive energy.

·       Modern and traditional medicine:  Although I may have complained about all the scans, scopes, and images, they were essential in developing my overall treatment plan.  It still amazes me how much an be learned from these tests, and new worlds are opening with research and experimentation in genetic interventions, stem cell treatments, and other forms of precision medicine.  I’ve also used acupuncture in my healing.

Of course, in addition to gratitude, I recognize regrets as well.  I keep no list, but they do come to mind at times during reflection and meditation.  Mostly, I regret the period in my life when I was giving more time to work than to family and self-care.  And not spending more time in nature. There are a few relationships where I wish I had been kinder or more patient or made different choices. The best thing to be done with regrets, I believe, is to learn from them, make amends where possible, and try not to repeat them.  And so we move forward with life.

Resources:

As the holidays approach—in my family this includes both Hanukkah and Christmas—I love listening to traditional music and also to fresh new songs such as Mary Chapin Carpenter’s “Come Darkness, Come Light” and Kathy Mattea’s “Mary, Did You Know” and “Emmanuel.” My CD’s by Odetta and Mahalia Jackson offer powerfully sung spirituals.  The blessings recited over the candles of the menorah are a reminder of the strength and comfort of ancient traditions.  Food also nourishes during the holidays.  My daughter Cathy makes especially delicious latkes, and we have a family tradition of baking special Christmas cookies to share with neighbors and friends.

Many advent resources have poems, art, prayers and messages to inspire us to focus on the Hope, Peace, Joy and Love of the season.  The materials developed by Sanctified Art are particularly meaningful.

For those of you reading this blog in December, may you enjoy the holidays and have a happy New Year.  More blog posts will follow in 2020, if not before.

Questions

During a time of illness and recovery, with all the uncertainty inherent in the situation, a multitude of questions may occur to family, friends, and yourself.  Here are a few we pondered during the time between my treatments in May and November.

“Nana, why are you walking so funny?” asked my grandson, as I shuffled from the dining room  table to the couch.  “I don’t know, Sweetheart.  My feet just feel heavy,” I replied.  It was during the time of deep fatigue, and it seemed as if there were weights around my ankles holding me down.  I simply couldn’t lift my feet off the floor.  Fortunately, with time my gait returned to normal, even though my pace might be as slow as a turtle.

 “Mom, do you think you’re getting the best treatment possible?”  I believe this question was prompted both by love and by fear.  My husband had died suddenly and unexpectedly while my youngest was still a teenager.  Our family had gathered for a festive Easter dinner and an afternoon of playing board games on April 15, 2001.  Four days later Andy suffered a fatal heart attack.  Now, my children’s usually energetic and active mother had a serious diagnosis.  It was troubling and even scary. 

We arranged for consultation with a doctor associated with the University of Pennsylvania’s respected center for liver cancer research and treatment.  He noted that our liver doctor had been trained at their center, and that she was following the protocol they might be using for my case.  There were some other approaches and trials at U Penn that I might qualify for, and one additional test they would recommend, but my Tucson-based treatment plan looked good.  We decided to keep my care here, but to request the additional test. It isn’t available yet in Tucson, and it also presented an insurance-related challenge.  However, it has now been authorized and scheduled at a cancer center in the Phoenix area on Christmas Eve.

Another question:  How many of the symptoms I was experiencing were related to the cancer, and which might be for other reasons?  The persistence of considerable intestinal distress, despite some interventions built into the treatment plan, bothered me.  I finally decided to return to my GI doctor to see what he or the nurse practitioner might think.  They gave me a test which revealed a problem unrelated to the cancer.  I’m receiving treatment and relief.  The lesson?  Listen to your body and don’t hesitate to seek further medical advice if particular health issues persist.

“What about milkshakes?”  This became a source of a bit of family controversy. A couple of years before my diagnosis, I had worked hard to lose weight for the sake of my health and had reached my goal.  Now, because of the cancer and radiation treatment, I lost 15 more pounds.  My doctors instructed me to gain it back, which was, for me at least, easier said than done.  Besides healthy and balanced meals, I was encouraged to snack between meals on nuts, fruits, cheese, even malts or milkshakes.  But some members of my family were concerned about sugar feeding my cancer and contributing to its growth.  Even though I found inconclusive and contradictory research on the sugar issue, one or two folks continued to be concerned.  From my perspective, milkshakes had been a rare but special treat in the past.  Now I had a reason to indulge without guilt.  With the blessing of two of my doctors, I added milkshakes to my diet, and the weight came back slowly. 

Finally, I would ask myself every so often whether I were spending my remaining time in life in the best way.  Finding balance between service to others and taking care of myself, between action and reflection, has always been an open question for me.  Illness makes this question particularly relevant and urgent.  Several new considerations enter the equation.  My body puts limits now on how many meetings, demonstrations and events I can attend without tiring too much.  My plan to leave my affairs in order so my children will have the information they need when I’m incapacitated or gone demands an investment of time and attention.  I long for more time to visit and share experiences with friends and family as well as to meditate and to exercise.  I’m frustrated—even angered-- by the truth that despite my desire, there is no way to borrow or create more time!

Resources during the time between the first radiation treatment at the end of May and the second one in November:

A friend gave me a book, Cancer Free with Food:  A step-by-step plan with 100+ recipes to fight disease, nourish your body, and restore your health by Liana Werner-Gray.  It has a list of the 15 top cancer-healing foods.  I had never heard of broccoli sprouts, but they can actually be found  in Safeway.  Delicious and easy to incorporate into salads and sandwiches. Most of the foods were familiar and already part of my diet, like blueberries, dark greens, broccoli, grapes, tomatoes and quinoa.  Other were new to me or foods I seldom ate, like turmeric, tigernuts, raw garlic and ginger root.  Some of the recipes look quite good.

A book that has been a rich source for meditation during this time is My Grandfather’s Blessings:  Stories of strength, refuge, and belonging by Rachel Naomi Remen, M.D.  The book is a collection of stories drawn from her life as the granddaughter of an Orthodox rabbi and her work as a physician and therapist. It’s the kind of book that invites re-reading because of the depth of insight and hope it offers.

Besides classical music, I enjoyed listening to Sweet Honey in the Rock singing “Somebody Prayed for Me” and Odetta singing “This Little Light of Mine”.

During the most difficult time of fatigue and persistent gut discomfort, I was reading Sister Joan Chittister’s little book Between the Dark and the Daylight:  Embracing the contradictions of life.  She writes, “The light we gain in darkness is the awareness that, however bleak the place of darkness was for us, we did not die there.  We know now that life begins again on the other side of the darkness.  Another life.  A new life.  After the death, the loss, the rejection, the failure, life does go on.  Differently, but on.  Having been sunk into the cold night of despair—and having survived it—we rise to new light, calm and clear and confident that what will be, will be enough for us.”

In the depths...

Before my treatment the end of May, I read about recovery from radiation.  There would be a period of three days when I would be a danger to children, pets, pregnant women, and probably more folks because of being highly radioactive.  After that, there were other possible and/or likely after-effects.  These included nausea, diarrhea, headaches, appetite and weight loss, and the most likely of all, fatigue. Anyone having radiation treatments needs caretaker support for some weeks until they regain energy and a clear mind.

For an independent person, used to being self-sufficient and self-directed, being cared for is difficult.  Especially if it‘s family and close friends doing the caretaking.  They are not being paid, so you can’t boss them around.  They are doing it from love.  Part of me wanted to minimize my need for care so they could go about their normal lives and not have to be burdened by responsibility for helping me.  Truth be told, that is not the full picture.  At a deeper level, there was a part of me that was uncomfortable with all the evidence of love, which I wasn’t quite sure I deserved.  I came to see, as time went on, that an aspect of this journey was to accept and celebrate the goodness of others and let it heal my body and soul.

After the first days with few symptoms and a feeling of invulnerability, the fatigue hit.  Profound fatigue.  There were more than two weeks when I slept for 18-20 hours a day.  I’d get up, have breakfast, start to read, and fall asleep until lunch time.  And the same pattern until dinner.  Afraid I wouldn’t be able to sleep at night, I tried to stay awake.  Unsuccessfully.  No problem sleeping at night, however, except for the peculiar middle of the night episodes.  Many times, I would awaken near midnight, alert, and my mind would fix on something I seemed to need to remember.  For three nights in a row, it was the full name of the President of Turkey.  I could remember the last name, Erdogan, but could not bring up the first and middle names.  There was no logical reason why I should be concerned with his name, but it bothered me that I couldn’t recall it.  By the third night, I was so annoyed that I got up, opened the computer, and wrote it down so I could let go of that preoccupation.  (It’s Recep Tayyip Erdogan.)  I don’t really understand what that was all about.

During the entire month of June, I left the house only a few times, to give blood, go to church, and attend one meeting of the Grandparent Ambassadors.  At one point, experiencing “cabin fever” and feeling close to despair about the slow recovery process, I called a close friend to ask her to send an extra prayer for me.  She was on her way to take her daughter to camp, but she stopped and prayed with me over the phone, a prayer for healing and hope.  It reminded me that many were already praying, and that I was blessed to have so much support. By early July, the fatigue finally began to lift.  I was committed to healing so I could enjoy a family vacation at Ghost Ranch scheduled for the last week of July.  There were 24 of us traveling to New Mexico, 10 adults and 14 children including 3 babies.   Thanks to all that sleep and so much love, I was able to go.  We had a wonderful time enjoying nature and activities. Family rocks!

Resources that helped during this phase included mainly music and meditation.  Reading was difficult because of falling asleep all the time, although I read some prayers and scriptures which were familiar.  I especially reflected on this re-worded version of the 23^rd Psalm:

God is my constant companion.  There is no need that God cannot fulfill.

Whether God’s course for me points to the mountaintops of glorious ecstasy

or to the valleys of human suffering, God is by my side.  God is ever present with me.

God is close beside me when I tread the dark streets of danger,

And even when I flirt with death itself, God will not leave me.

When the pain is severe, God is near to comfort.

When the burden is heavy, God is there to lean upon.

When depression darkens my soul, God touches me with eternal joy.

When I feel empty and alone, God fills the aching vacuum with God’s power.

My security is in God’s promise to be near to me always,

and in the knowledge that God will never let me go.

Among the songs I listened to, Leonard Cohen was a favorite, especially “Sister of Mercy” and “Anthem”.  Another was Sara Thompsen’s “May the Longtime Sun”.  

Finally, I rediscovered a song by Pat Humphries I used to listen to, “Swimming to the Other Side.”  The lyrics are below.

We are living ‘neath the Great Big Dipper
We are washed by the very same rain
We are swimming in the stream together, some in power and some in pain
We can worship this ground we walk on, cherishing the beings that we live beside
Loving spirits will live forever, we're all swimming to the other side
I am alone and I am searching
hungering for answers in my time
I am balanced at the brink of wisdom
I'm impatient to receive a sign
I move forward with my senses open
Imperfection it be my crime
In humanity I will listen
We're all swimming to the other side

My longtime best friend/sister of the heart sent me an Apache blessing:
May the sun

bring you new energy by day.
May the moon

softly restore you by night.                                                                                                                     
May the rain

wash away your worries.
May the breeze

blow new strength into your being.
May you walk                                                                                                                              

gently through the world

and know its beauty all the days of your life.

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.