Finding Life in a Fear of Death

I found today during a feared appointment with a new oncologist that, of course, I still have chronic leukemia. But I've got some time to consider options. Along the way, I also found some resources that provided me strength, well-being, even healing. 

They are: A doctor who respects me. 

"I respect your values and philosophies that may be different than mine. I want to work with you, even if we differ." Um, wow? I have spent 11 years with leukemia finding this doctor. She is the fifth in a long line, including doctors who have used scare tactics and half bits of information to try to convince me to do what they wanted me to do, rather than consider what I wanted. This is the challenge of the modern, fragmented life. We have to cut through many weeds to find our tribe, including a medical team that speaks our language when needed.

A supportive community. 

This includes not just my family, who frankly need their own support supporting me. This includes close friends. This includes lovely Facebook. I carried so much love with me into my appointment today, reading comments on my Facebook post, even as I waited for the doctor. I felt held and cherished even as I held and cherished my Facebook friends. This is the meaning of LIFE. If there is nothing else, this is what there ever needs to be. Presence.

Touchstones. 

In my pocket today I carried stones that said "truth," as in "I will speak mine" and "release," as in "I will release from my own defensive thinking and listen when my doctor is speaking." I also carried a silver piece that said "sisters" on it for my three sisters. I had my sweet stuffed "Lambie" in my bag, little pieces of things from my children and the meditation books that sustain my days.

My philosophy, my spirituality.

This is the the most challenging part, the piece to the puzzle I have been seeking my whole life. I come from a Catholic tradition that gave me mystery and a profound understanding of sacrifice. As an adult, I have studied the saints, the mystics, Jesus, the Buddha, the yogis, Merton, Hahn, Tao, Emerson, the Amish way of life and humanism, all of which/whom have provoked thought and reason along with mystery and tradition as I sought to find what I believe to be true. In particular, I was looking for what I believe to be the connector, the thin veil, the constant that reduces the duality between birth and death and instead equalizes both as simply parts of a continuum of human existence. For years, I struggled as I sought a spirituality that made sense to me. Not having this piece in place as I considered a life-threatening disease left me at times paralyzed with fear about the possible outcome of my condition and how I could openly move into a necessary exploration, and ultimately, peace, around mortality. 

Now, finally, I will step out onto a limb -- that some may want to break -- and say I believe it has been found.

It is within the psychology of the Buddha, coupled with the mystery of the unknown where I believe I have finally found my answer.

It is an answer I had been coming to by degrees, that I came upon most profoundly during a particularly dark night of the soul this weekend, after I had been through a grueling couple of days worried about the leukemia, the upcoming appointment and how poorly I was feeling.

After years of believing I could recover my health, I had gotten it in my head these past several days that I was doomed, that the only way out was the serious medication route. This is nuanced and personal. Unlike short-term cancer drugs, chronic leukemia drugs are experimental and ultimately deadly. You have to be on them the rest of your life. They carry serious side effects, including life-threatening infections and other unknown effects in the long-term. Doctors know they are problematic and wait for you to decide your situation is "bad enough" that you will chance taking them. Some doctors are pushier than others and impatient.

While I had been lucky for 11 years, for the past almost year, I had begun to suffer from severe anemia requiring blood transfusions and such profound fatigue that my quality of life was suffering. 

I thought this weekend I had two choices: I could take the drugs.

Or I could just go ahead and die.

This was a position I'd never been in before, as before, I had believed that by working with body, mind and spirit, I could heal myself. This was a slow-growing disease. I had time to work with the tools I had -- food, yoga, psychology, meditation, exercise, reiki, cranial-sacral, acupuncture -- to see what I could do on my own. As time went on, my condition had only very slowly progressed. I had even been able at times to stabilize it. But as each year moved on, so did my disease. I felt depleted at times, never sick enough to warrant medication. I just had too many white blood cells crowding out platelets and red blood cells and sometimes my spleen hurt, swollen as it was by so many aberrant cells. Certainly, too, I lived in fear, watching and waiting for my situation to worsen. This came to an existential head this past week as I felt so fatigued to the point that I imagined what it might feel like to die. This was making me afraid to go to this upcoming appointment. What would the doctor say? Would she start pushing for me to take the drugs? Was I, in fact, dying?

I lay in my bed, petrified, much of the weekend, finding new respect for what it must be like to be an acute cancer patient in this torturous space between hoping to live and feeling so bad you want to die. 

And then on Sunday morning, I attended the sangha (Buddhist community) zoom meeting that I often attend through the Bozeman Dharma Center in Montana.

Always at these meetings, first, the group meditates. And then we talk. The meditation this time was focused on taking refuge in the Three Treasures of Buddhism: the Buddha, the dharma (teachings) and the sangha (community). I didn't know what this all meant, but I sat, or rather I lay down, in meditation anyway. I fell asleep as I sometimes do.

It was after we meditated then that I learned what it means to take refuge. Taking refuge in the Buddha means believing you hold the Buddha inside you. Taking refuge in the dharma means holding to teachings and practice, for example, the eightfold path to enlightenment -- Be free from desire. Be satisfied. Be tranquil. Be diligent. Remember the teachings. Meditate. Practice wisdom. Avoid pointless talk. Taking refuge in the sangha means holding to your community, typically the community of others who study Buddha with you.

During our discussion, the story of Dogen was brought up. Dogen, I learned, was a Japanese Buddhist priest, writer, poet, philosopher, and founder of the Sōtō school of Zen in Japan. After our meeting, I found a feature film about Dogen.  

I spent all day Sunday doing nothing but making grape leaves for a zoom supper club with my sisters and watching the 150-minute movie. I learned the teachings of Dogen and watched slowly, over about eight hours that day, his life unfold. 

I also watched a depiction of his death. 

Dogen died, as he lived, sitting, meditating in community. 

It was this that touched me most profoundly and directly. To die as one lives is my great imagining, and yet, despite witnessing four deaths being close to many others as a hospice writer, I'd never been able to witness this. Now here was Dogen and this sangha, showing me.

This is the piece/peace I've been trying to lift between life and death: 

Goodness is inside me whether I am actively living or actively dying.

I can practice being a loving, compassionate person whether I'm on my deathbed or fully alive.

I can be part of a community dedicated to the same, at whatever moment in time or space.

The great teachers tell us it is only in the darkness that we find light. 

It is only in discovering death that we find life.

This new knowledge, this understanding of the continuation of growth and expansion even unto death and dying, is what I took with me to my appointment. 

This, along with stones, the love of friends and family, my voice, and a loving doctor with whom I actually enjoyed discussing options today, sustained me as I learned I am not at a critical point. I am not dying, only anemic with an ailing thyroid. I can keep on, my doctor said, working on the anemia and the thyroid, for an undetermined amount of time. She would rather I start treatment, but she understands why I don't want to yet, if ever.

In the meanwhile, regardless of whatever, no matter whatever, thanks to the illumination through the sangha and Dogen, I know I can always continue to grow and learn into vast and simple teachings that make sense to me.

It takes work to identify and then create what we want. 

My years of seeking have not been for naught.

Under the Waning Apple Tree

                                                         ---------------------------------------------------------

 We keep coming back to our experience again and

 again. Simply experiencing, experiencing. In time (and it may take years), love 

 will begin to flow from us, like water from a fountain, and all will be refreshed. 

                              ---- Open Mind, Women's Daily Inspiration for Becoming Mindful, Aug. 18

As an adult, I have spent a great deal of time opening into the hidden emotions, especially sadness, I was taught as a child not to feel. Along the way,I worked with a trusted therapist, with poetry, meditation and spiritual teachings to experience this part of my journey as growth. Along the way, I would also feel other things, of course! Joy! Gratitude! Laughter! But always: Is there sadness I am trying not to feel? What childhood experience does this remind me of? What am I longing for that I need to fill? Yesterday, then, sitting in the garden, I started with longing as has been habit. But then, as I recorded the moment as I sometimes do, something shifted. My voice tentative in my recorder, I said to my very self, "Yes, but wait. What else is here?" Not that I will never be sad or longing again. But when we give voice and expression to those things that burn in us and need our attention -- contrary to what we might think -- the burning will eventually stop. This is catharsis. This is true gratitude. And this is the voice recording, transcribed.

~~~~~~~~~~~~

ORGANIC GRATITUDE

I sit on the bench under the waning apple tree

On a day when I can feel a bit of fall in the air.

I look around me at the vegetable garden and surrounding perennials, zapped after so much August.

My mind goes, as habit, to nostalgia and longing.

Summer, soon to leave. 

The fading hydrangea I planted for my mother after her horrific death 15 years ago; the peony for the last of my father's seven siblings; the azalea for my cousin/friend who died of cancer in her 50s.

I think of everything that went into this garden that is not here now -- small children helping put seeds in th ground, my husband with me.

A lot has happened during the life of this garden,

So much of it difficult -- 

My mother, my leukemia, Steve's dementia, children leaving, the demise of the marriage.

But then in the garden, the sun shifted in the sky.

"But oh, hasn’t so much good happened too?" I whispered, my voice quivering, plaintive, into my recorder. "Isn't so much good happening RIGHT NOW?" 

What of the turquoise rain barrel a friend made for me, an Impressionist painting with purple and yellow flowers that greets me every day, and now? 

What of these crisp new garden beds I enjoy every day that Benjie and and Chris put in for me in the spring?

What of the Tree of Life metal sculpture that brightens the center of the garden

And the wind chimes and the hummingbirds and the bird feeder behind my head?

I look around me and see there's a lot that still needs to be done in the yard

But what about all the wonderful things that have been done -- that ARE done and happening right now?

In my garden, the zinnias grow like caricatures of flowers

Prolific herbs bring me food and flavor every day 

The perennials are my unconditional companions and teachers

This lovely deck is my haven

I reach up to wrap my hand around the bough of the apple tree above my head

I swear I feel it pulsing,

Breathing with me, it says "Alive! Alive! Alive!" 

Navigating Western Medicine

I watched the lovely, short French film “Traces” last night, about a man who was a logger the old-fashioned way. He used a horse to pull logs out of the woods.

The film was poetry, his work a prayer. He was 75, the last of a long line of loggers. He knew when he was gone that the family tradition would not continue. 

In the woods while he worked was a young girl with a sketch pad. She was smitten with the forest, these deep ancient Alpine woods with tall, cascading waterfalls and timeworn rock formations. She visited often, studying, watching, believing that the woods had something to teach her. 

She discovered the logger at some point and began sketching him.

One day, as the man and his horse Nina were dragging a log home, the log slipped, the man slipped, the log landed on the man’s leg. He went to the ground and lay there, trapped. The little girl happened upon him and freed him. Still, he was badly hurt. The next scene is of the little girl, now being the logger.

I assume the man died. I assume he died as he lived, maybe even looking up at the trees that had given him life. This echoes a longing of my own soul: If only we could die, as we live, in our own way.

----------------

Twice in the last year, I’ve been admitted to the hospital for blood transfusions for the chronic leukemia I've had for 11 years. 

I believe in these emergency treatments. I am grateful for them and for the people who administer them. The treatments are not invasive. The benefits much outweigh any harm.

Anything beyond this, aka longterm treatment,  and the reverse is true: The harm could outweigh the benefits. 

To my body.

But also to my soul. 

Some day, the transfusions may backfire, as, I'm told, my body will reject them. At that point, doctors say I will have no options, not from their perspective. 

The only recourse will be to start — or to have already started — longterm drugs. These are not typical cancer drugs. They are not curative, only stop-gap. They don't increase longevity. They kill the bad stuff, but in the process set off other imbalances. Unlike chemo, these drugs I would stay on for the rest of my life, with serious long-term side effects, some of which have yet to be fully determined. 

There are two ways I believe modern medicine is good -- in emergencies and for diagnostics. 

Beyond that, when we are talking about curing disease, modern Western medicine is less effective, as it looks at killing off without addressing root causes, as it works at keeping the organism alive at whatever cost to the organism's overall wellbeing.

The doctors fight me on this when we talk about it. 

But not the nurses. 

The people in the trenches, the nurses in the room with me, the women in the lab who draw my blood, the people who are not as attached to the research, but who listen to us struggle with the side effects of harsh medicines, understand this.

I am part Native American. 

Cherokee blood runs through my veins. I resonate with trees, not with strong medicines that will churn my body into chaos, causing it to kill off aberrant cells, but also wreaking havoc, confusing my body, changing the course of my natural river, destroying my body’s ecology, damming up one area, causing other imbalances and unnatural changes in another.

I have often said I wish I could just hold onto a tree and turn into compost when the time came.

I tell this to doctors -- God bless them, by the way, for the good they believe they are doing. 

And while I am freed by the thought, they are horrified.

There are many times when I am scared, when I think “Maybe the time has come for drugs.” 

I believe that's because drugs is all the system has got.

What if there were to come a time when I was scared, and the next step on the path would be to ask me what I want, what is good with my soul? What if meds were only an option, only part of the discussion with the loving, trusted  doctor?  What if doctors realized that what they think is best may not be what I think is best? What if they fully respected that even though I may not have the science understanding, I have the self-understanding? What if wisdom stories about beautiful, and inevitable, endings were part of the approach to illness? 

I would not be truthful if I didn’t say I get conflicted by this, too. 

I get caught up in this, too, the “I want to live, give me the drugs.” 

But what if this other, more full-rounded approach was the system we found ourselves meeting when we faced illness? What if the system met the individual where the individual is? What if our bodies relaxed, knowing we were being cared for the way our instincts were calling for us to be cared for? And we healed? 

Instead, this is how it goes: On Wednesday, leaving the hospital, I was told that the fatigue I am feeling is what I will always feel, that I will never feel tip-top again. “Is this how you want to live? Does this make your life worth living?” 

The doctor asked me these questions and in the next breath, began to push on me to take the drugs.

Instincts and the good side of healing

Instincts and the good side of healing The road from diagnosis to recovery is a long and complicated one requiring more than a residency at Mayo. Recovery takes on many forms. Sometimes it begins by recovering one's own truth.  

• Self-portrait in the mirror at the doc's office, 2015

——

My experiences with mainstream and alternative medicine since being diagnosed 10 years ago with a chronic, "incurable," vague, confusing and complicated form of leukemia include the woman who charged me $200 to tell me I had a voodoo curse on me.

There was the shaman with his shirt unbuttoned to his hairy waist who told me I would heal if I had an affair (with him?). There were the practitioners, mainstream and alternative, who tried to shame me into better lifestyle habits. "You know you're carrying excess weight," the macrobiotic counselor snapped at me three times in 45 minutes.

There was the internationally recognized leukemia doctor who used scare tactics to try to talk me into treatment with serious side effects, even though the literature differed as to whether I needed treatment, even though I kept telling him I wanted to stay away from the meds as long as possible, which is why he kept upping the ante, aka scaring the hell out of me. "I certainly wouldn't want to pick up the paper one day and read that Debra-Lynn Hook ... well you know.." (Died?)

This is a complicated disease with controversial approaches. There are no known mainstream cures. The only drugs are so debilitating for this particular disease that even docs say they shouldn't be administered until the person is suffering from the effects of the disease. No suffering? Better not to take the drugs. The problem comes when doc and patient disagree with what is suffering.

Those of us who remember in our primal minds when medicine, healing and recovery were instinctive look to see the whole picture, including patient, doctor and other practitioners who can help address and guide to wholeness of body, mind and spirit.

I’m “lucky.” Mine is a slow-smoldering condition. And so I had time, to live into an understanding that
took me in and out of the offices of both alt and mainstream practitioners -- naturopaths, chiropractors, macrobiotics counselors, shamen, psychotherapists, hypnotherapists, cranial sacral practitioners, acupuncturists, reiki practitioners and a plethora of mainstream doctors. Last winter, I drove myself to Boston in one day to a mainstream doc and a week later, to a macrobiotic counselor in Asheville.

I have learned there is no one-size-fit-all when it comes to individual health and that health is not just a science, but an art. Given the uncertainty, I have learned to start with trusting myself. If it doesn't resonate, I step away. 

Maybe some people have voodoo curses on them. But this diagnosis did not resonate with me. I never saw that practitioner again.

Maybe I need to address my sex life. But not with this particular sha-man. Out, he went.

Shame? This one was a long road that I have not finished traveling, yet I am learning to say more quickly: I don't care how good you are at dispensing meds, food or affairs. I cannot have this kind of energy near me.

On the good side, and there is a good side: I have found nurses, aka people in the trenches, who treat me with care and nurturing, who know so much more (in my opinion) than the (often well-meaning, but often myopic) doctors who aren't necessarily in bed with Big Pharma. They just simply have a paradigm. They live in the laboratory. And if brown rice doesn't fit their paradigm, it has no place.  This is unlike one nurse, who told me that several patients told her they eat popcorn to raise their platelet count. "The popcorn stimulates their intestine and they produce more platelets." True or not? I just like that she is thinking outside the box.

On the good side is the acupuncturist who said "You are so much stronger than they want you to believe."

On the good side is the new mainstream doctor I am seeing who said "While I may recommend certain treatments, I realize the side effects are extreme and your decision to continue working with food and lifestyle is likely what I would do were I in your shoes."

On the good side is the reiki/acupressure practitioner who came to my house when I was too overcome to come to her and rubbed my jaw, so tight from stress clenching, until it finally quit hurting.  And the hypnotherapist who hugged me with tears in her eyes as I was crying and the psychologist who called me when she heard I was in the hospital and the cranial-sacral therapist who went to JoAnn's Fabrics and got crochet stuff for me when I couldn't walk.

On the good side is genuine care. Look at this 18-second video. 

I am not absolutely averse, by the way, to anything at this point. I am not “healed,” not according to Western medicine. I still have leukemia. I am still seeking - and, I must say, surprising docs with how well I’m doing.