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

 

 

 

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.

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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.

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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.

 

 

 

The Last Straw: On Transitioning From the Old Body Into the New

My body has changed, and I’ve got to learn to accept its changes.

It’s difficult. I used to run 10ks, work full time, whip up recipes from Bon Appetit, shop, garden, plan social events here at home, dance with my husband and daughter, flip pancakes, and generally fill our house with the kind of life I’d always wanted in a home. It wasn’t perfect, but my body was an actively orbiting planet around a warmth I hoped to harbor. I worked hard. Like many of us in our productivity-obsessed culture, I bought into the feelings of self-worth associated with being “on top of it.”

This new body is different. Parts of me are gone. I’ve lost strength, lost mobility, lost stamina. A good friend of mine, a fellow traveler on this road of chronic illness, made an analogy that I come back to often. He said, paraphrased, “You used to have 50 straws in a cup. You held them and you could use them every day. When you woke up, they reappeared.

orange and yellow straw
So much sweetness to savor. 

Now, you may have 25, or 20, or 10 straws. They take longer to come back. And when you select your straw (or task, or thing-to-do) you must make more strategic choices.”

I think of this often. Fewer straws, less energy. Fewer straws, less done. Messier house. Forgetfulness, fatigue, contracting the circle of my hoped-for life.

It’s not that I’m choosing to wallow in grief, although I think it’s essential to our healing that we recognize and allow ourselves to feel our losses fully. It’s not that I’m hanging on to loss. It’s that I feel like I’m in a process of transitioning from an able body into a differently-able body, and what that means is that less gets done. I attend fewer social engagements. I cook less, I attend fewer meetings. I set up fewer social engagements because I’m afraid I’ll have to cancel. I miss my friends.

So, what takes the place of my previous productivity? What do I do with the empty cup space, the space where the straws used to sit?

I rest. I meditate. I go to doctor’s appointments and physical therapy (7 months later, and still going). I write when I can. If I’m able, I’ll do a few chores. I sit and talk with family. Drink coffee or tea. Sometimes I binge watch Netflix shows. I lay down and think. I read.

Sometimes the pain from my surgery and chest scar tissue renders me incapacitated, unable to concentrate on anything but pain relief and sleep. Sometimes the fatigue is so extreme, as it was this past weekend, that I am barely able to rise from bed.

And so I am learning – in the present continuous, as it’s a process – to be compassionate with my new limitations. I am learning to test how far my right arm can reach, how far I can walk (a 1 mile a day workout so far is about my limit). I turn my gaze to the gratitude in small things, to the garden with its blooming borage, ballhead waterleaf, scarlet flax, bachelor’s buttons, poppies, and violets. I think of water, of berries, of the rise and fall of a mockingbird’s tail. I think of spring and summer, my daughter and her laugh, my husband and his deep, true goodness.

This learning is not a straight line.

What keeps you grounded as you transition and think of your new life? Your body’s losses, its gains?

drinking glass with pink beverage and mint leaves
For you. 

 

Wallace Stevens, John Cage, and Cancer. “Everything we do is Music.”

Wallace Stevens starts his famous poem with the same line as its title, “The house was quiet and the world was calm.” In this poem, the word “calm” repeats six times, lulling the reader into a sense of languid, expansive openness. “The world was calm.” A person could continue, could go on. This lived moment, in this poem, is given meaning through its rearticulation and recurrence.

white and red house surrounded by trees at night

An ideal. A memory.

“The house was quiet and the world was calm.” My own world is returning, slowly, back to the familiar figureheads of normalcy. I say “figureheads” because my life’s markers are symbolic, not entirely trustworthy, images of what used to be. My hair is a slow-growing helmet, no longer a velvet crust, for example. And yet I don’t entirely rely on its long-term presence.

My health is in stasis, no better, no worse. Chronic shoulder pain has become my companion. Every day is monitoring, listening into the body’s conch shell and hoping for echoes of normal.

blur close up conch focus
Inside is future or a past. 

The figurehead of my family is clearer, but I know the undertow of sorrow still holds sway. Look around, the world seems to say. Touch the shore again.

I try to. The world goes on “as if,” the sun also rises. And yet to re-enter the old life again and again in this new body, with its losses and fears, can feel like a lie. Each day feels not so much an entry as an attempt. Hello how are ya goes the sincere greeting to the mail carrier, the grocer. No ill will towards anyone.  And yet I close my eyes and feel the fractured, unmoored elements of this body pulling me towards falling.

Equilibrium, even the appearance of it, takes much more work.

“The house was quiet and the world was calm.” Stasis. The dash between words, a valley.  The musician John Cage has a famous work called 4’33”, and it is complete silence. Four minutes, thirty-three seconds of silence. Quiet. The audience sits and hears – no, the idea is to listen– to coughing, the rumble of the ventilation system, seat creaks, rustling, and the quiet.   To just sit. The piece is a statement to be here now. To be present, a reminder that ordinary sounds, attended to, can become song.

Or simply:  Stop. Break. Wait. Beauty is everywhere.

“The house was quiet and the world was calm.” For now, for now.

There’s no resolution here. No closure. I’m aware that my hunger for resolution is a hunger for a certainty that cannot come. We who live in Cancerland, stage IV or recurrent or just diagnosed, have stepped into a world of mirrors and aberrations, in which the life we saw before is distorted. Figureheads on ships that used to guide us can’t be believed. Music has more minor key, or no familiar notes at all.

And what can we do? We return to our seats, or to the doorway, again and again, and in either the silence or the new music we make some way.

wood landscape nature forest
Photo by Pixabay on Pexels.com

What is your new way? What are the new experiences, sounds, sights that you are attending to as you recover?

 

 

 

 

Living with Chronic Pain Or Why I Cancel Plans at the Last Minute and Throw Down the Wooden Spoon

Despite flu and pneumonia vaccinations, this month I came down with some awful virus and acute shoulder pain. It’s been miserable, and here’s why:

1. My already surgery-incapacitated right arm, a zombie appendage of its former self, can barely reach past my shoulder. I am a person who puts dishes away, who likes to put up pictures. I like gardening, reaching over the sofa edge to put my arm around my guy. I am also right-handed. Now, with a stiff neck, stiff upper shoulder and shooting nerve pain down my right arm, all physical therapy exercises have come to a halt. Waking up involves a pain and capacity assessment, which then determines my mood, which unfortunately revolves around “cranky,” “tired,” and self-reproach at my limitations. I really hate chronic pain. I really hate cancer.

2.  And the virus! March, according to my General Practitioner, has been peak flu season. While the vaccine helped, some other microscopic parasite decided to colonize this body. Score one, virus, for the timing of it: reinforcements, aka my immune system, were slow to rally, and even now, in conquest, the landscape is parched and needs tilling. Meaning: I’m really tired, rest a lot, cancel plans often (and am truly grateful for the patience and understanding of friends) and must practice patience.

forest photography
On bad days, I hang out here.

3. That word: “patience.” It’s a tough one. There is so much I want to do, and so much urgency. I am sick of waiting, sick of living my life on the timeline of my illness. The self-help gurus echo in my ear with their calls for positivity, for strength, for “not letting cancer get the best of me,” and I get that we occasionally need those prompts. But for the love of Beezus, call off the joy. I mean it. You get to throw down the spoon, you get to binge watch reality crap. Some things just stink and neither Brene Brown or Deepak Chopra (despite their good intentions and expertise) can – or should – take you out of your anger or impatience or grief.

4. “The only way out is through,” and come the courthouse of full healing I’ll testify to that.

How do you deal with the chronic, unrelenting nature of cancer or another illness? In what ways do you allow yourself to be in the dark of it?