You Gave Cancer Everything, and It’s Still Not Enough

I’m still alive.

And so grateful to be able to write those words.

I had scans in July and all the tumors are stable. No growth. Holding steady. Starboard as she goes.  Life has settled into a routine of chemo every three weeks, with one week of recovery and two weeks of near-normalcy. One week on, two off. This rhythm stabilizes my life and makes it easier to plan rest, meals, and activities.  It gives me hope.  And while I know I’ll be on chemotherapy forever, this chemical pace gives room for living and for life.

I am slowly learning how to accept the likely-permanent paralysis of my right arm.  It is a slow process. Dictation software helps, and my daughter and husband have rallied, too. But the magnitude of it – the utter uselessness of this limb now, the sudden, startling flopdowns when it’s unsupported, its fishlike swing and sway, its blankly numb detachment from the whole of my body’s honed, coordinated machinations, its sheer weight and cumbersome ostracism, a rogue gong, a flaying odd pendulum—is a continuous, displaced, awkward reminder of cancer treatment’s costs. What is the cost of living? What are you willing to pay?

 I think of Jane Hirshfield’s poem, “The Weighing.”

“The world asks of us

only the strength we have and we give it.

Then it asks more, and we give it.”

It is all we have, this sad giving. Reluctantly we open our fists, offer our veins, bare our heads, and display and platter our full selves for the reckonings of scan results. We hope for months, beg for years. We search online, query the doctors, roll over with the real and dream upheavals of this nightmarish, dazed half-life we plea to withstand. Oh we are a desperate chorus of endurers hoping to be whole.

And each day is one and one, the word  “more” a felt bead on a rosary we hope to hold.

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.

 

 

 

Our Garden is Applause That is Quiet

It’s admittedly not much to look at.

Garden Feb 2019

Our small raised bed has weakening wood, the seedlings and sprouts are in disarray, and there’s a scattering of borage that’s about to rule one corner. It’s rainsoaked, a bit disorganized, not terribly well-tended. Its current aesthetic is wait and see. It is a small plot of patience.

I have, on my way in and out of the front door lately, paused by its side to ponder, regard, consider. Why?  Two weeks ago I dispersed, with a most unscientific and erratic glee, small handfuls of wildflower seeds from a store-bought packet. I tossed about little pockets of what looked like tiny bent twigs, sand bits, and burrs. Then I covered those seeds loosely with dirt and went on my way. I went to work and back. I carried food. Books, papers, lunches came and went.

But after days of rain some tiny, hairs-breadth little sproutlings are emerging. I crouch down in the mornings to look at them. It’s nothing really, that sitting and staring, but it’s also everything. This comfort. This stopping. This delight. It’s surprise and hope and nurturing and a tiny tip of awe. There’s mystery, elegance, and momentum. Growth. And blooms yet to come.

And I can’t help turning my gaze to my brothers and sisters on this path through cancer, and how horrible it can be, and how illuminating and surprising too. Turning to trust in the world again, to consider the days ahead, is, unlike planting, no easy gesture. This body that has given us life has also attempted to take it away.

I look at the ground and think of floods. Mud. Stones and hail.

The unresolvable, ongoing pendulums of illness, health, life, death. Sunlight, rain.

Yet here, in their tiny upstarts, stand future flowers: hollyhock, scarlet flax, bachelor’s button.

California poppy. Cosmos. Coreopsis.

Wild violets.

What can we do but plant? What can we do but wait?

IMG_9471

 

And be here now, fully and with thanks, while they take root.

 

 

 

Yule Get Better

It’s been a good month.

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.

It’s December 30, 2018.

 

 

 

I Bunt, I Trip, I Get Back Up.

It’s been a rough patch.

This last chemotherapy treatment, the 6th out of 6 cycles of Taxotere/Xeloda, has caused fevers, flu-like bone aches, and general misery. I’ve been in and out of bed for days in a haze of napping and trancelike kitchen/bathroom visits. The pain in my bones and shoulder became so bad that the oncology nurse prescribed Norco, a known opioid. I plan to be judicious and careful about its use.

Today is the first day in over a week that I’ve been able to go outside and walk more than a mile anywhere, and just sitting in the sun gave such relief. Looking at the yard, at the tufts of clouds, at the sunlight and tomatoes and lobelia draping over the planter boxes, I couldn’t help but marvel at the gift of health. Of energy returning. Of life.

person standing on sunflower field
FYI: I am not this woman. This is not my yard. I don’t wear white cotton dusters and I currently have no hair. But I do love sunflowers. And living.

I’m very fortunate that I did not get HFS, or hand-foot syndrome, a potentially debilitating side-effect that causes deep peeling/cuts in hands and feet. I’m fortunate that neuropathy has never been more than a few short tingles in my toes. But this last treatment knocked me out, and the fevers  – which fluctuated between 99 and 101 for about two days – and deep bone pain, and dizziness, and fatigue, were hell. It was worse than the worst flu.

What makes these episodes so difficult is their unpredictability. My fever came on an hour after waking up. After a nap I felt slightly better, until nausea and severe nerve pain knocked me back down. This went on for a few days. But it is precisely this roller coaster of side effects and unknowns that has made it difficult for me to return to work, or to commit to activities, or coffee, or dinners,  for any consistent time period. And it’s frustrating, tiresome, and it takes a toll on our whole family.

So, I’m hoping the worst – the chemotherapy nadir – has passed, and that soon white and red and stem cells will begin reproducing quickly again. I’m hoping this treatment has sucker-punched the tumor into oblivion, or at least into operability, and that the word “cure” might be bandied about again. I’m hoping my health will begin its slow crawl back. The odds are smaller this time, but I take my cue from the Yankee Clipper.

Play ball.

two female in baseball gears in stadium ready to catch and swing baseball

 

 

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