metastatic breast cancer

because you were curious

Hello there. It’s now September 2022. I look out into the backyard, and half the apples on our tree have fallen; only the highest fruits, the ones with reddish hues from having the most sunlight, are still clustered and hanging on.

Is there a metaphor there?

Do these branches, these still-green leaves indicate something about holding on? About how the low- hanging apples are at the most peril of being plucked? How the best is for the latest? How waiting brings reward? How, first or last, we all fall? Or how the length of your life is just luck, and, pick or plummet, you did the best you could?

Or is a tree just a tree?

We’ve been giving away apples by the boxful, the bag full — and this year I bought an apple peeler and made containers of apple butter, apple turnovers, steel oats with apples and cinnamon. Every morning I look outside, and as a mother I feel the bend of our tree’s boughs, both the grief and gift of her plenty. Who wouldn’t wonder? Why wouldn’t Eve bite? Who wouldn’t, seeing such circles and bloom, sense a desire to the bite the crisp sweetness borne by the summer sun?

This post was supposed to be a cancer update. I was supposed to tell you how I’m doing, the state of my health. But once again I am distracted, caught up in gazing outside, wandering and thinking about apples, or trees, or flowers, or coffee, or books, or cats, or anything else besides it.

I’m doing well. I’m still in remission, thank goodness, and slowly regaining energy. My stamina is much better. I am able to walk 30 minutes to one hour a day. I have started volunteering once a week. I’m still taking Tecentriq, an immunotherapy drug, once every three weeks, but if remission continues until January the oncologist has said we can consider stopping treatment. That I might be considered cured.

It stuns me that I am able to write that. I have metastatic, stage 4, triple negative breast cancer and I am nearing two years into stable remission. When I say “remission ,” I mean there is no evidence of active disease, (NEAD), which does not mean that I am disease free, but it does mean that I am stable. It means that there has been no disease progression. It means the tumors still exist, but are dormant.

It means I am incredibly lucky.

It also means that I am in an odd place emotionally. I have both tremendous gratitude and tremendous uncertainty. I am poised on, and practicing breathing into, a space of deep uncertainty. I am still unable to predict the future. Those of us with cancer know that remission is a weakly-patched wheel. We check it constantly, ready for the next blow. I will forever live from scan to scan, in three to six month increments. And this is good news in one way. In another way, this news brings fear, anxiety, and rage at life’s cruelties.

Always the sway: living, dying; famine, feast.

People with cancer have bitten an apple. We know things. There is a medical wrath that we suffer through. We face snakes, and worms, and sickness. Some of us aren’t sure about God.

Some of us taste, some of us spit.

We are curious and angry and in awe.

We hang on.

Winter will come soon enough.

Curiosity is a sign of intelligence, doncha know?

Your Odds of Pain Are 100%

There was a time when the evening light shone just so, a time when you leaned back, glass in hand, and in good company, talked and listened and laughed. The table might be full, you could follow your friend into the kitchen and ease in to stir the still-warm sauce. All around a warmth. The sizzle of meat. Clinks and short silences and nowhere to need be. The threats of the world ebbed and you were well.

Fragments of that life scattered after the cancer diagnosis. Life was no more a surety, the needle’s draw drew breath with it, too. Hospital visits filled the days. And as I begin to recall those earlier days, I remember that friends and family formed a nest of support where I could hide, gather strength, grieve. They gathered pieces of my life like birds gather yarn bits and floss, and made a home. I will forever remain grateful.

But the light always changes, must change. Friendships and relationships felt the tides of time ebb and flow in new ways, and I found myself re-negotating, re-feeling what it meant to interact with others as a terminally ill person. This was entirely unexpected and sometimes brought anger and new grief. One friend burst out laughing when I told her of my cancer. It stunned me. Our last two encounters have been within the last two years. She spent both times talking the entire time of carb dangers and the powers of essential oils. I no longer see her.*

Another friend had been carrying many secrets, and they asked repeatedly for me to keep more. I couldn’t do it.

And I had to begin removing myself from people who could not listen. The lack of listening began to irritate me more and more. I have often been on the quieter side, but I grew angrier and less patient with people who dominated our time. Time was all I had left, and I wanted a voice in it. I also wanted silence. I wanted joy. I wanted depth and a space to grieve.

I would find myself deeply angry at having let myself be bulldozed by someone’s need to vent for hours. It struck me as deeply selfish. And here I must own my lack of assertiveness; I should have spoken up, but my reserves were low. I was tired and sad.

So I let some friendships go. (Family is a whole other post.) Some of these were a relief. Others I miss. And some friendships deepened. Others with chronic illness, caregivers, neighbors—so many of these grew into what felt like family.

I do not regret these shifts. They were necessary and largely inevitable.

But I long for a time when cancer didn’t filter through each word and day. I miss banal, workaday casualness, conversations about supper, a lightness to my orbit. Cancer is so damned heavy. For everyone.

And the carrying, it must go on.

* Details and info have been very much changed

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.

* * *

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

I Miss So Much About My Job

Education Week has published an essay I wrote about ending my career due to cancer.

Here is the link.