This River, It Rises and Falls

I want to take a moment to thank the readers of this blog. Your responses, your emails, and your support mean a great deal to me. I have recently developed a very serious case of neuropathy in my right hand, which is such a cruel blow, as it is my writing hand, working and coffee hand, and now it burns and burns. I drop spoons, fumble with combs. So I cannot reply, offer the comments, or develop this blog as much as I like. I can’t visit or support others’ blogs as much as I’d like. But I read when I can, send love and support, and in this sister- and brotherhood that is often silent know that I stand with you.

It is January 2020. Each marker of time is a signpost, another hill or copse on the orienteering map of cancer unknowns.

silhouette of tree on top of the hill
Photo by Johannes Plenio on Pexels.com

It feels bewildering to be here. Each day is some new emotional or physical landscape. Today it’s weak and singed fingers. It’s thinning but not bald hair. It’s anger at the world and gratitude for light.

I hear the Jim Nabors song from a far radio somewhere:

Sunrise, sunset, Sunrise, sunset

Swiftly flow the days

Seedlings turn overnight to sunflowers…..

 

This is a song about childhood passing, but it speaks to me too about time. Opening and closing. Starts and stops.

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I had a CT and bone scan last week. There is “good” news. “Good” is in quotation marks because when you’ve been with this disease, this abusive lover, as long as I’ve been (almost four years now), you begin to detach from each peak and valley. Detachment is an emotional survival tool. I cannot anymore ride with the extremes of shock or giddiness of this body’s data. I take it as it comes. I hear it and think “What does this mean? Ok, what next?” I no longer trust even the positive outcomes. Though I celebrate and though I thank, I have also numbed myself in order to protect myself from the fatigue of grief’s extremes.

The “good” news? And it is good. My lung tumors have shrunk considerably. The bone metastases are stable. Steady as she goes. The current treatment is working. All signs point north.

The price? Numbness, burning, and neuropathy in my writing arm. Crashing fatigue and nausea for two weeks each month. Anger and irritability. Family and friends who I worry are getting sick of all these peaks and valleys. I’m so grateful they’ve stood by. Their continued presence is a kind of sunlight.

Yet tempus fugit. Time flies.

This life, it is a kind of No-Man’s Land of in-betweens. There is no France, no England. There are only remains.

*                                                                *                                                    *

This post sounds darker than I feel. Reader, if you were with me here, I’d sit us down for coffee or tea and ask: How are you? How is work? Or How are the kids? Always I am working to turn my gaze back to the world, the people here and now, away from the body.  I must remember. I can go to dinner, walk, plant a few seeds or bulbs here and there. Each day truly is a gift.

And yet my own truth is that there is damage, too. There are ruins to rebuild, landscapes to level. Cinderblocks to place.

It is one whole circuitous map, this rubble and this rain.

And the river, always ongoing.

river between green leafed tree
Photo by Rachel Baskin Photography on Pexels.com

 

 

 

Cancer Narcissism and the Things of This World

The mind must attend to itself, to its own existence. It scans, assesses, summons us to rise or sleep.

It is a self-perpetuating organ that attempts to drive its own perpetuity.

When cancer invades the body, as it has mine, now my arm bone and both lungs, the mind – my mind – moves into focus, fixation. All thoughts lead to tumors. I wake up and scan for pains and aches. Could be a recurrence. Could mean death.

Fixation turns to obsession and closes me off from noticing the sunrise, listening to the mockingbirds of this morning, or just closing my eyes and enjoying being. I lose life. In dwelling on cancer, I lose precious time.

It’s a difficult balance. My mind, in its drive for survival, hungers for wellness, insists on roving for any possible bodily blip, taking up emotional and cognitive space for simple living.

I understand this need. It is simple care driven to the end of the continuum, labeled now as “hypervigilance” or “anxiety” on the scales of self-awareness. I understand this need, but it interferes with my life, and I struggle to practice living each day without succumbing to grief, despair, or panic.

There’s another dark side to this self-monitoring: narcissism. A medically-induced self-centeredness. Constant bodily scanning, medical appointments, discussions about “how are you” and the morning confrontation of lymphedema, arm pain, and hair loss (yet again) turn my gaze inward. Some of this can’t be helped, as the new normal of my life means accommodating these side effects. But I don’t like it. And I am keenly aware of how much of this chronicling of my ailments is so self-ish. As in, revolving around me.

Hello, I say to the mirror, noting my falling lashes. Hello, echoes my mouth.

I turn away from this reflection each day and make myself engage with the world. One must converse with both the bodies and birds, deliberate on the nature of things, I hear my old professor say. I will not be a prisoner to the tyranny of disease, I will not allow cancer to become a home base. Life continues. People have lives, lives that I am genuinely interested in hearing about, want to ask about, want to be a part of outside of illness. Weeds need pulling. Apples need picking. A friend wants coffee, the leaves are already piled.

An owl hoots and the morning garbage truck roars down the road.

Ask.

Look up, the world tells me.

And I do. Will do. Must do.

 

person holding round frame less mirror
Photo by Lisa Fotios on Pexels.com

Updates. Also, Sick of Sickness.

It’s the post-Thanksgiving hubbub and cozy couch life. We’ve eaten as a family and hung out with dear friends, and gratitude for each small bite abounds. We bought and decorated our tree yesterday, which was strategic planning on our part, as my next chemo cycle started Friday afternoon and we knew it would wipe me out. So Friday morning, we scrambled. The tree is lopsided, imperfect, and beautiful. There’s a metaphor there for living, I think.

Xmas Tree

I’ve started a new chemo cycle. The immunotherapy I was on, Tecentriq, nearly eliminated the larger tumor under my armpit. Unfortunately, as cancer will do, some cells developed resistance to the immunotherapy and moved into my lungs. I now have 5+ tumors in both lungs. It’s impacting my breathing and causing some coughing. This was terrible news for our family and has caused yet more grief. We’ve told our daughter about this recurrence, that it’s treatable, and that we’re taking things one step at a time.

Those conversations with our child – they are the worst, most wrenching part of this dread tunnel.

And so I’m now on Carboplatin, Gemcitabine, and Tecentriq, all at once. After my first dose last month I slept for nearly 36 hours, with one – or two- hour wakings for water and food. I kept very little down. This treatment plan, if successful, might add another year to my life, but I will be on it forever or until it stops working, and sick for 1/3 of the time.

It’s the worst treatment to date. For about 7 days after, I am very sick, despite anti-nausea medications and steroids. Carboplatin and Gemcitabine can really knock down blood counts. Some people need transfusions, and I hope I do not.

How do I feel about this? How does one go forth, knowing that 1/3 of his/her foreseeable life will be flu-like nausea and pain?

I still choose to remain in gratitude for each day. Each day these eyes manage to open is one to be thankful for. I planted daffodils and crocuses to invest in next spring, and I  make wishful, hopeful travel plans. My daughter still has homework, my husband likes a good meal. Friends are treasures, better than gold.

And yet I’m so sick of being sick. So sick of relating to people through the lens of disease. There are times when I wonder if someone is reaching out because of obligation, or because of something else. I blame no one for this. It’s the nature of cancer, and people mean well. But the lens of cancer forces all kinds of urgency, can make people want to be a “good person” and reach out, when really it’s not necessary. And yet sometimes it is. And the hard part is to navigate asking and receiving, distance and proximity, and knowing it’s clumsy and hard and the forging of a new relationship with people around you.

And understanding that the lives of others go on. Your disease is not the world. People have kids and dilemmas and issues and stories that I want to hear about, and to be a part of outside of cancer. The continuum still goes on.

In a lopsided, beautiful tree, the continuum still goes on.

 

Terminal is Liminal, With Updates

If you are reading this, you have or know someone with metastatic, or terminal, cancer.

For this person, or for you, a line has been crossed. A threshold. A door which can no longer be closed.

This makes metastatic cancer a space where transitions take place: there are shifts in the body’s capacities, changes in relationships, emotional high and low tides, financial ebbs, spiritual reckonings and ends. One website has a definition for liminal that I really like: “The word liminal comes from the Latin word limen, meaning threshold – any point or place of entering or beginning. A liminal space is the time between the ‘what was’ and the ‘next.’ It is a place of transition, waiting, and not knowing. Liminal space is where all transformation takes place, if we learn to wait and let it form us.” (Inaliminalspace.org)

To wait, and to let form.

And there is grief. Undercurrents of it as wide and deep as gyres linking east to west in surges of the unknown. Where am I? What is next? Who is this new, carved, scarred and asymmetrical self? Where are these treatments taking me? And when will I arrive?

Questions are the language of the liminal traveler. The departure island no longer exists, the destination unfolds during the duration, and so all we have are pivots, coasting, and turns. We are always consulting the map, which is the body, and often a scan. And so we query and trace and consider, uncertain and unresolved.

Waiting. Letting things form.

At some point I turn and recount the slow degradation of my body. Even as I write “my,” there is a part of me that does not want to own this, I reject and reject the ownership of this disease as “my,” but there it is, near my rib again, in my arm again, proliferating in its malignant exponentials. And so in three years the changes add up: mastectomy, lymph node removal, oophorectomy, rib removal, hair loss. Once I sat in the doctor’s office and caught my reflection in the mirror. I could not help the gasp of sudden, utter grief I felt at this, this ogre-like body I saw facing me – bald, gashed, pale, a compression-sleeved arm covering my eyes. “A transition.” A transition into what? Who?

The kind doctor: What’s going on?

Me: I used to be a person.

Silence.

Kind doctor, with a big intake of breath, taking my hand:  You still are.

How this humanity breaks my heart. It is the one sure map I keep as I go forward.

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And so where am I? I’m in cycle 6 of immunotherapy. Scans next week will determine if it’s working. If it isn’t, my treatment choices become limited. I’m on a list for a local hospital’s clinical trial. I could also try carboplatin – it’s the one last actual chemotherapy that might work.

We’re meeting with the palliative care team next week to discuss end of life plans. This doesn’t mean hospice is imminent or that I’ll die soon. It means that we’re planning a roadmap – there’s that word again, a way going forward, a plan as if – for pain management, resuscitation choices, financial directions, and so on.

My energy ebbs and flows. Some mornings I can walk and get groceries, but by afternoon I usually need a nap. Some days I am totally prone, in bed, can’t get up. I often have to cancel plans. Some relationships have fallen to the side. I have had to set boundaries when needed in order to preserve what time I have left. This is not personal. It is survival. And pain flares, stops, flares again in no predictive pattern. It is all liminal, day by day, and puts burdens on my family and friends. For their kindness and understanding I will always be grateful.

This liminal living is not all sadness. It has given me time to listen to the backyard finches, stop and hug my husband and daughter, watch the apples ripen on our tree. To have coffee and cherish friendships. It’s given me time to listen and to slow down. To read. To watch bad tv and enjoy it. I flew to Santa Monica with an old high school friend and ate nearly $100.00 worth of lobster. Bliss!

If there were a scroll with one destination, I would write friendship and offer it to you.

And love.

They are the only way  – is it forward?

Is it out?

 

 

 

 

 

Cancer and Boundaries: What the Compass Told Me

Everyone has their orbits, their ranges of motion, their finite, functional horizon between the sun’s rise and fall. Before cancer, these were self-evident; I had no need to articulate them. My body had a momentum that fit the workaday arc of most people my age, and then some: I ran 5 and 10k races, worked out, gardened and wrote, all while maintaining a full-time job and a home. These were facts.

Once cancer entered my life, the ranges and orbits changed. I find myself wanting to find a finite word for those changes here, such as “narrowed,” or “were reduced,” or “became limited,” because in one sense those “reductions” in abilities were physical bricks. Truths. A gash where my breast used to be. My new swollen, compressed arm.

But words implying reduction aren’t entirely accurate either. I say this because reduction implies permanence and certitude. A “reduction in abilities” doesn’t encompass the sudden surfacing of a kind of necessary attentiveness to the body, which is always in flux, always changing. And the cancer body becomes amoebic in its illness: cells die and return, fears resurface, hair grows and falls, skin tenders after sutures and heals, muscles stiffen and restretch, and the mind learns a new vocabulary of being. “Scan” is no longer about the landscape outside; the word beams inward, searching for malignance. “How are you?” is no longer innocuous and quotidien; laden with the weight of mortality, the phrase becomes a question of life itself. How long will you live? What is happening in your body? How frightened should I, the asker, be? There is such freight with the language. A kind of lightness has been lost.

And so, who am I in this new body? Where do I go? Bewildered in some desert, then a city, then a bed, then a corridor – who? Where? What?

One metaphor helps me now: the compass. It is astral in the sense of earth-only, grounded here and then here. It is a traveling re-orienter. To consult it means to know where the one thing is, which is “direction,” which is not a destination per se – for the cancer patient, true north, or “health” is an implied and ongoing possibility. Some of us are further from this than others. And some must close their eyes, rest, and stop.

The particulars:  My body is changing, not for the better. My tumor markers have increased, and despite eating and eating, I can’t gain weight. I get so very tired. Restless legs torture me in the evenings, and scans are coming up. Like the compass, the general sense must reground in the particular and its details. I am here now, and I consult and consult the gravity below. In my hand is a small circle. Not much else is known.

 

person holding compass
Photo by Valentin Antonucci on Pexels.com

 

 

 

On Dying and Hope

“Metastatic” means “terminal.” There is no sugarcoating this. It means that someday, sooner or later, I will die from cancer.

At first there is the shock of this, wave after wave of grief, and then the settling.

Sand and water.

And the full panorama of what is left.

I stand and ask myself What am I seeing? What do I notice? And there is wreckage of course: scars, family worries, fear, a constant checking of accounts, depression, anger, grief. Job loss, a haze of ache-filled and tired days.

And I take those in. They are fallen brick and mortar. Splintered wood. Animal bones.

But soon some bird flies home, calls to kin. I am forced to look up, see a friend calling, a bit of sky.

Water. Sunlight that does not burn. And shade, respite in the form of kindness. There has been so much kindness.

Both coexist here. Both wreckage and love. It is an island of its own, this strange and sad and sometimes beautiful place called “terminal cancer.”

 

Jealousy and Metastatic Cancer with a Disappointing Ending.

I was recently diagnosed with stage iv triple negative breast cancer. This wasn’t my first time with it – three years ago, I received my initial diagnosis of stage 3 of the same disease. Once I finished treatments – mastectomy, chemotherapy, radiation – I was told I was “cured.” I thought I was done.

Not so. In 2018 I had my first recurrence (a tumor near my ribs) and had surgery to remove it.

In the spring of this year, late March 2019, nearly three years to the day, I was diagnosed with a second recurrence. This time, metastatic. Another tumor in the same area as last year’s, plus lesions in my right upper arm bone, and a suspicious, to-be-watched lesion on my liver.

The cancer had spread. It had metastasized.

And what “metastatic” means to me is “inoperable.” It means terminal. It means The Rest of Your Life.

It means: You’ll never be free of it, it’s here to stay.

The hope I once had of returning to normal is gone. Gone. I will now be living with cancer for as long as I am alive.

And so once again I make adjustments. I grieve, my husband and I talk about our options, we regroup.

*                              *

I wanted this post to be about jealousy. I wanted to talk about what this new diagnosis means in terms of loss and change, and the way I feel and talk about time. I wanted to talk about what energy means, what an average day used to feel like, and what it is now. How making coffee was just that, and not an arduous series of breaths, painful movements, knocked-over cups and then utter, exhausted relief in crash-sitting to drink it.

I wanted to talk about the ache I feel when I scroll through social media sites and witness families smiling in the sun, a photo of a mother and child in an inner tube on a river, a lazy and slow river where on a beach dogs and small children upon arrival run to greet them. I wanted to write about the long-held ache in my throat when photo after photo of mountains, some friend’s reunion in a cabin, the Paris couple’s kiss, the neighbor’s good times at the local pub, and all of their clicked “likes” and “looking good” comments show up on my feed as if everything were normal. As if time, like the lazy river, was to be had in these long hours, fistful after fistful, all of us just looking around in total wonder, endlessness its own known gift.

Dear god, I miss the eyes half-closed sheer bliss of not knowing it, all’s well, fat tire tube and being just another body in a lit, slow-moving, unpunctured ring.

*                                    *

I wanted to talk about the italics of energy and normal, the new italics of time. Each of these words is stretching forward past itself in an attempt to grab more, take more, because their own current letter legs are weak. Today’s an unknown, the words seem to tell me, so make sure there’s a bit of them in the future. Bank all three: energy, normal, time. Always lean towards the next hour, the next day.

-Is not how I really want to live, though. Too much leaning forward means a weaker grounding, means the weight on one’s footing is likelier to sway. It means I’m not here fully. It means rush and hurry.

*                          *

I’m so jealous of other people’s lives. Their health, their beautiful families, their cancer- and fear-free lives—

the ability to plan, to think in one- and five-year increments. The gift of time that is handed to them. The safety glass that still protects their days — it’s an illusion of course but they still have it—

Maybe that’s you? Lucky. You’re a lucky one. And you’re innocent of course. How would you know, did I know, that we had that luck when we had it? No one does. It’s the nature of health to be unseen until it’s not. It’s a Plexiglass dome on top of a building.

For me, that safety glass is gone now. A wind is blowing and always will blow. It’s a closer step now to a long way down.

*                                 *

I feel obligated to write something hopeful but I can’t.

It feels more authentic to me to just stay here and say: sudden.

To say: time.

 

 

I am not a comfort.