“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.”
So good to see family and friends, to laugh, and to reconnect. My husband and daughter are able to relax a bit more – I see it in their released muscles, in their trust. Looking at candies and cakes and shiny red wrapping papers has lifted my spirits, and the smells of pumpkin, cinnamon, cloves, and nutmeg have infused me with some kind of winter-and-food inspired warmth.
Grounding. Here and now.
My strength is near-normal, the physical therapy exercises are working, and morning coffee brings such hope. We’ve gone on a few short hikes and planted some bulbs. I’m returning to work soon, and we’re even making summer plans.
We’re daring to hope this remission lasts awhile. We’re daring to trust in life again.
What else can we/I do, really? Giving up is not an option, and I’m tired of grief.
The world of cancer is peppered with super achievers. For some people, a cancer diagnosis propels them into a flurry of mountain treks, book deals, year-long walkabouts, profitable blogs, the starting of foundations. They do cleansing diets, quit or change their jobs, marry or get divorced, adopt children, remodel their homes. The wind machines of productivity blow their long, flowing (metaphorical) hair into the photographer’s lens, and the world, it celebrates their proliferating efforts.
“You don’t have long to live,” cancer says. It is, to be sure, a wake up call.
Respect. And it’s no one’s business how we react to cancer or any disease. The music of coping has a wide, wide range.
And yet I can’t help feeling pressured, at times, to do. I realize this is partly cultural. Americans value productivity, work, achievement, productive leisure (think high-end tents, travel, what did you do this weekend?). Even cancer is no ticket out of this race. Even the cancer patient (and the chronically ill in general) must justify their rest, their healing, their not-productive-sitting-reading-resting being. We don’t honor enough that healing is an active, regenerative process in which the body’s reserves must be deeply tapped. This causes fatigue. It can cause grief. We don’t honor rest. We don’t honor the trauma that cancer heaps on the mind and the body, and the concentric circles it then echoes into family, friends, community.
In this vein, I want to say that I haven’t been terribly productive. This has its pluses, its minuses. Working outside the home is a way of staying engaged with the world, is a way of having another thread of meaning woven into your life. And I have been away from a job I love for nearly seven months. Working inside the home is a series of tasks that are constantly being undone, and therefore there’s little to show for it. And I haven’t written a book, haven’t remodeled a room. Kitchen cabinets remain in disarray. The wet mop is still outside, the linoleum has holes.
I ask myself: What should I be doing, exactly? Should I be sorting through the old books, cleaning the garage? Another Costco run? More vigorous meditation, reading professional manuals? Piles of poem and other drafts stack each household table, as do my husband’s paints, brushes, figures. I wander and sit. I read, then rest. I cook a little, grocery shop. Then rest some more. I spend 2-3 hours a day doing physical therapy exercises. “What do you do all day?” someone asked. Cue maniacal laughter.
I once scrolled past a Twitter post that read something like, “Click to see how breast cancer inspired this woman to climb Mt. Everest!” I replied, semi-snarkily, “Breast cancer made me cranky and tired.” Oh, the dark humor of it. But it was the truth.
And you know what?
It was the most productive thing I did that day.
How do you cope with your body’s need to heal? Its unpredictability, the need for rest?
It’s been three weeks since surgery. I’ve been really, really wiped out. I’ve spent most days in bed or on the sofa, wandering the house, doing this or that odd chore, but mostly resting. My oncologist said I probably won’t even start to feel recovered until four weeks, and not “normal” until eight weeks out. This, to my need-to-be-productive-self, helps me feel better. Two drainage tubes have made it impossible to sleep in any position except my back, and my right arm is slowly gaining range of motion back. Today’s the first day I feel like I can type for any length, and this, too, gives me hope.
If you are a regular reader of this blog, thank you for your patience.
This surgery sent me into a tailspin of depression. The truth about general anesthesia is that it is a temporary coma, and can have major effects on mood. Post-operative depression is not something I anticipated, but immediately after surgery I fell into a well of despair that had me near some monster edge. My husband and daughter were bewildered and concerned. Combined with the pain medications and the lack of mobility and drain tubes and magnitude of this surgery and this diagnosis, I was in a very dark place. I would walk into the kitchen and just stand, bearing wave after wave of utter, complete grief and despair. I’m not sure I’m describing the physical aspects of the sadness enough – my body felt physically dropped into some hopeless, dark well and I was flailing for air. Dear friends and colleagues reached out, and let me tell you every text, every visit was a life buoy. There is a kind of salvation on this Earth, and it is called Kindness. And each day is one inch better. That is my measure. One inch, or one half inch. That is what this body can do right now.
The surgeons (thoracic and plastic) took out one rib. This was the rib that was borrowed from Adam, and he can have it back.
In a nutshell: wait, see, hope. Checkups every three months. Periodic scans. Because this is a local recurrence of TNBC, there’s no hormone treatment I can take. There’s no other preventative chemotherapy available. The new immunotherapy treatments are for metastatic disease, meaning disease that’s spread to the bones, or organs, or brain, and consequently they don’t apply. I could search for a clinical trial, but my case is not typical, and I don’t have the cognitive bandwidth to do much more than read magazines and watch TV. I’m in remission now, and yet the risk for recurrence is high, over 50%, and happens within 1-2 years.
We are in uncharted territory, said my doctor, gently. We sat in silence.
What can I do? This is the part where I look down into the valley and decide. Despair or hope? Another step up the mountain, or quit?
I look around and down and see the faces of my family, friends, coworkers and a world of sisters and brothers and I draw on the kindness that is there. I am so grateful. To extend the metaphor, the air gets thinner as treatment continues. The body wears out. A person has to make more frequent stops and gather strength. But you, readers, friends, family, cancer sisters and brothers, are my oxygen tank.
Surgery was on 10/2 and this past week has been a daze of pain medications, rest, and not much else. In the process of navigating this week, dear friends have brought meals, checked in, driven, and then I lost my phone and got appointment dates mixed up and felt sheepish all around. Apologies.
Here’s what we know: the surgeon thinks he got all of the tumor, and part of one rib was removed. Part of my latissmus dorsi muscle was also removed, and I’m going to have permanent disability in my right arm. I already feel some numbness, some difficulty moving. Thankfully I can type and write with some small difficulty but it can be done. My lung capacity is slightly impacted but this should change with physical therapy. Walking 1/4 mile tires me out, but dad gum I’m walking the block. I’m adding a few more steps each day. Slow but sure.
Triple negative breast cancer has a high risk of recurrence. That is a fact I must face squarely. But we’re hoping this surgery gave us some extra time – months, years if we’re lucky.
In the meantime it’s back to enjoying the basics: coffee, my fam, my cat, wonderful friends, colleagues, community, this beautiful Bay Area autumn weather, and healing slowly. Sitting in the sun. Reading good books. Naps. Letting the body heal itself. I must learn to be kind with my currently limited capacity, and rest when the body asks for it. I’m at about 35% of “normal” right now, and even getting clothes on requires a level of contortion and new sensations that cause pause.
Sadness comes and goes. Yet another body part carved up, yet another loss. This is the truth of chronic illness – each shift and change is a new normal. I try to remind myself that I can walk, talk, see, dance, eat, drink, laugh – most of all the things from before. But I also refuse to pressure myself, or anyone, with the tyranny of positive thinking, which often does not allow space for grief. Grief is as necessary as breathing, creates space for truth and healing, and must not be hurried.
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.”
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,