These are the (Detached, Strange) Voyages.

The CT and bone scans came back negative for metastases.

I should feel elated, grateful, should be jumping for maniacal, life-affirming joy.

But I’m not. I feel like: whatever. Meh. As if in a Star Trek episode, my shields are up. Odd, huh? The closest description I can come to this feeling is that of an abused lover. Cancer is the abuser. He (and it could just as well be she) punches me out with a diagnosis: stage 3, triple negative, lymph node involvement. I am injured, and then I grieve, and slowly begin healing. Cancer gets quiet. Goes into remission. Behaves, offers hope.

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For a brief moment, you could stand here. You might feel relief.

And then he returns with another punch: the tumor’s back. And then another: surgery. And then another: high likelihood of recurrence. And each time my ability to emotionally engage with the process is reduced. I’m not talking about depression. I’m talking about a step by step process of detachment from a body that no longer feels trustworthy. All news is now to be listened to and taken like a memo, and I’ll consider only the action items. And the abusive lover’s apologies – cancer’s temporary respites from terror – are not to be believed.

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Back again, little fucker? Seriously? Don’t even.

Surgery is now possible and my doctors are planning to remove the tumor. Two ribs will be excised, and permanent nerve damage to my arm is likely. The tumor has grown, even from last month. I picture it, sometimes ask it what it wants, and all I see is a little dark factory that has programmed itself to proliferate. It’s like V’Ger from the original Star Trek. A satellite that was originally built to gather information, it eventually became self-aware, and then colossally destructive. I think the cancer cells are a little bit like that: they are cells that got programmed incorrectly, and now are replicating and replicating in a lethal effort to survive.

Please stop, I want to say.

Take your efforts elsewhere.

In the meantime, one day at a time. We wait now for the surgery date and plan for four weeks of recovery. Maybe I can have my ribs from the surgery.

Maybe I can turn them into salad spoons.

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That would be strange. And yet: 

Magic Hour

We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.

Here are a few shots:

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I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.

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Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.

 

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And here, with my daughter, is mine.

Love out.

 

Solo Tahoe Hike. Bucket List. File Under “Not Dead Yet.”

I’ve always wanted to hike the Lake Tahoe mountain range.  It’s been a dream of mine to hike the Tahoe Rim Trail. According to the link, it’s considered one of the most scenic hikes in the world, and I can see why. Starting from the Tahoe Meadows Trailhead, the valley views are incredible.

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Altitude: 8, 740 feet.

I went alone. I was a little nervous – not about safety, but more about my health. I’ve had a large number of lymph nodes removed due to cancer metastases, and one of the side effects of this (not mentioned in the “happy pink” and “you’re a survivor” positivity ticker tape) is the lifelong risk of permanent arm swelling, cellulitis, risk of cuts, bites, and possibly permanent manual massage and pumping and physical therapy that comes with lymphedema. After my breast cancer surgery, the list of “things to avoid to prevent lymphedema” included: high altitudes, vigorous exercise, pet scratches, dehydration, weight lifting, vigorous and regular movement of the right arm, saunas and hot tubs, and so on. The list was a devastating litany of losses.

The physical therapist told me, “You might want to think of getting rid of your cat. Also, avoid air travel.” More than the cancer, I felt like my life had been taken away. How much more of my body would be carved, how much more to lose? I went home and wept. I hated it all – the cancer, the lost tissue, the loss of activities I loved. Life.

But, as we must do to continue living, I regrouped. Such gratitude to my support group, to include online ladies, a hallelujah chorus of friends, family, writing group, community, my husband and daughter and wonderful colleagues. This pool of support buoyed me, kept me grounded, prompted (and prompts) me to get back out and live.

And so this hike, 6 miles in high thin air, was more than walking. It was a kind of milestone, a kind of fuck you to the limitations of this disease. It’s not the 10 miler I’d hoped, or the full 15-day outback trek I’d dreamed of, but it’s a start. A small victory.

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And afterwards?

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The best, sauciest, crab cakes EVER. With wine and a sweet lake breeze.

Cheers.

 

Bodega Bay, CA

We love the sea.

My husband, daughter and I spent a few days at the coast just getting quiet, reading, drinking coffee, walking and listening. The landscape, it is not especially glamorous or light-filled, but we like it that way. I like the quiet serenity of it.

 

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The subtlety of the colors and layers reminds me to look more deeply.

Not everything has to be bright, or vivid. Not everything needs to move.

And yet it does.

 

 

Rainer Maria Rilke Teaches Me About Cancer

I’m reading a superb biography called “A Ringing Glass: The Life of Rainer Maria Rilke,” by Donald Prater and from it I am gathering material and ideas for how to live with breast cancer.

Sometimes poetry and literature are the best forms of bibliotherapy. Bear with me.

For starters, here’s the second stanza from one of Rilke’s poems from his “Sonnets to Orpheus” (II, 13) series:

Be always dead in Eurydice – climb, with more singing,

climb with praising, back to the pure relation.

Here, in the failing place, in the exhausted realm,

be a ringing glass that shatters as it rings.

Background (scroll down to skip): Rilke wrote this entire sonnet – the entire, magnificent series of sonnets – to Orpheus, the mythical Greek lyre player who has gone to the underworld (Hades) to get his beloved Eurydice back. On Orpheus’ and Eurydice’s wedding day, Eurydice was bit by a snake and died suddenly. Orpheus was heartbroken, and was given the chance to earn her return to  life.  In an agreement with both Hades and Persephone, the god and queen of the Underworld,  Orpheus leads Eurydice back through the dark, arteried maze of death, but must promise not to look back, must promise to trust that Eurydice follows behind him as he makes his way back to Earth. Sadly, he fails. His doubts bedevil him, and just before re-entering the light of terra firma, he turns and looks, but his last vision is of her fading back into darkness. It is a tragedy that tears Orpheus apart with grief.  Orpheus’ lyre remains a constellation in the sky called “Lyra.”

What could this mean?

We, cancer patients and survivors, are in “the exhausted realm.” We’re not dead – of course not – but a part of us has died: our illusion of ongoing health, an old life that has changed, a loss of innocence, a sense of ongoingness. I feel that to heal completely, this grief must be felt, acknowledged, allowed to appear fully in the body and mind, and then let go.

It is this feeling and letting go that is the challenge, no? To trust in it. Thankfully we are not bound to an oath like Orpheus, but faith in a new life, a new outcome, or some future hope comes with the painful price of a broken past. It is a pendulum of dark and light. An offering of night, an opening called “Day.” Rilke, in his wisdom, did not recommend an illumination or mirror; rather his word is a gift of transparency, one to break: “glass.”

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Photo by Johannes Plenio on Pexels.com

And in breaking, in shattering, he tells me, be the full-throated voice of grief singing.

He ends the poem like this:

 

Be – and know at that time the state of non-being,

the infinite ground of our deepest vibration,

so that you may wholly complete it this one time.

In both the used-up, and the hollow and dumb

 

recourse of all nature, the un-tellable sum,

joyfully count yourself one, and destroy the number.

I feel myself wanting to be in the process of climbing, like Orpheus, back to the “pure relation” of family, daily life without the dark blanket of mortality clouding it. I want to sing praise songs to my doctors, medicine, coffee. I want, like Rilke tells Orpheus, to be “the infinite ground of our deepest vibration” in order to complete the full circuit of grief and healing.

And to count myself, and you, sister or brother survivor, “one” and to wipe out all comparisons, all statistics, all outcomes, percentages, prognoses, doses, stages and grades, milligrams and pounds, cycles, infusions, lab work, blood counts, tumor markers, weights, scans, needles,

o joyous day

and forever destroy the number.

Love out.

“Who can become lost in a narrative,

     if all he can think of is the end?” 

– Mark Doty, “Lament-Heaven”

And so, with cancer comes the question: What is the new narrative of my life?

And others:

How long do I have left?

What is my treatment plan?

Logistics: Do I continue to save? Plan a world trip? Get rid of my old stuff?

Planning, the economic and spiritual foundation of modern American self-efficacy, is the Harley-Cancer-Davidson motorcycle driver that breaks you off, sidecar sidekick, and leaves you in the little rig by the side of the road while he takes off down the two-lane highway of certainty. Putt putt, sputter. Stop.

And here you are, ditched and detached in the Death Valley of all deserts, left to contemplate your options. It’s quiet all right. And there’s no driver for miles. What to do, what to do?

I struggle with this. If we continue the metaphor, with Death Valley and the unmoored, detached passenger, bewildered and shocked at the side of the road, I’m still sitting. Two years later and I’m still sitting, still scratching my head, looking at the map and trying to figure out how to get back home. Do you know what I mean?

It’s kind of tragic. It’s also, at times, patently absurd. And funny. I mean: no hair! And what’s a lopsided gal to do when running? Plenty of room to contemplate.

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Photo by Nextvoyage on Pexels.com

Many other survivors and friends have come past, offered advice, suggested lovely and some-odd things, and pointed out alternate routes. But I can’t go back. I can’t go back to the home of the Old Body, the Old Life. The new is here. And I’m still working out how to navigate life, work, the process of living with chronic disease. I want to rush it. I want to “make it work,” learn from it, deal, manage, fix – do all the productivity-oriented activities my previous and old life would have deemed necessary in order to overcome any personal obstacle. And in focusing on the corrections and fixes, I wonder if I’m losing some kind of view.

That is, just being, living, fully taking in the transition. The road. The sidecar mishap-tragedy that, like Emily Dickinson, tells it slant. Because even in this, there is a narrative. There is story, there is process, there is some nugget of love and living that wants to find a way.

Here now, it seems to tell me. Look at your body, the earth, even the rocks at the edges. Sit awhile longer and take it all in.

No more need to rush. For now, no need for fear.

 

Results, Pending

The CT scan showed that the tumor is shrinking. It’s gone down by about 1 cm.

This should be good news, and it is, but the rise of the celebratory music is dampered by the ongoing knowledge of cancer’s continued presence. I am talking about a lack of trust, a lack of belief in the body’s full capabilities. This lack is not pessimism, but rather the realization that this body can and has betrayed me. Faith in a long future is a vertebrae that’s been removed. One slight hunch is now always impacting movement, tilting each tentative step. It’s a little harder to look up.

“Continue the treatment until it shrinks further.” Then surgery, then recovery.

Then wait.

My old life feels like a harbor from which I drift further away each day.

I do not want to sound sad. There is always coffee, or sunlight.

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A friend or a flower.

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A note or a text message, laughter, friendship, good books, food, family, naps. You, they, these things:

  • are all the antidote.
  • are all I need.

And the truth is? We are always pending, are always, like the pendulum,

asway.