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.

 

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Photo by Lisa Fotios on Pexels.com

I Have Stage IV Triple Negative Breast Cancer.

I’m sitting here, staring out the window, and I can’t believe I’m writing that I’m stage iv, that I’ve reached this stage, that it’s here, the “terminal diagnosis,” and that I am now in the momentum of the process of prolonging survival and not searching for a cure.

My world has been a world of bewilderment, grief, a spinning tilt-a-whirl with dead ends, crazy laughter, heart monitor beeps and unending not-ending. My emotions have been a see-saw with no fulcrum, test after uncertain test, and decisions, palliative care, medications that leave me in a vague haze of feeling good and lethargy.

And yet sometimes, like today, I wake up and feel almost normal. Coffee tastes like dark and unsweetened caramel and is such a pleasure. I can clean a closet, I can bake a cake.

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For the record, my cakes are much messier. 

This all began with shoulder pain in March. Like many women with pain, I minimized it. I was back at work, had recovered from major surgery, had had clear scans in January, and overall felt good. I was back to “normal.” The motions of my life had been reset, and I relished the sense of routine. My husband and daughter visibly relaxed into the days and the ordinary bickering and goofy jokes settled back at sea level. “The house was quiet and the world was calm.”

But the pain wouldn’t go away. It was insistent. It felt like a large hard marble pushing against my scapula. By late March, I was getting odd fevers in the afternoon that would sometimes rush to 102, and in a matter of an hour settle back to normal. My body ached. The fatigue was crushing. After work, I’d pop ibuprofen, curl up in bed, and crash into oblivion. I knew, as we do, that something wasn’t right.

I emailed my oncologist. As is HMO protocol, she referred me to my general practitioner (GP). I went to see him, explained my shoulder pain and fevers, and he resolutely stated that my symptoms indicated a virus. He told me to rest, take ibuprofen as needed, take liquids, and “keep an eye on it.” This was early April.

I waited two weeks. I didn’t know that during this time, my tumor(s) were growing. Triple Negative Breast Cancer (TNBC) is an aggressive and fast-moving cancer. My doctor’s misdiagnosis gave time for “Charlie” (my tumor’s name) to gain space.

The symptoms got worse. I started calling in sick to work. The pain was near-excruciating, and 800 mg tablets of Motrin were doing little to assuage the pain. On a Sunday, I called my HMO and asked for a same-day appointment. That day, I saw another doctor. She repeated my previous GP, declaring “It sounds like a virus,” and then told me to wait it out. I pointed out that I was a cancer survivor and that my previous recurrence began with shoulder pain. Looking into her computer screen, she said, “I know, I know.” Handing me her card, she said she’d prescribed some shoulder cream and told me to “keep an eye on things.”

The tumor was growing. At this point I could not lift my arm to comb my hair. I could barely drive. Sleep was fitful. Turning to my right side was agony.

Neither doctor asked to palpate my shoulder. Neither doctor asked to even see it.

On that Monday I emailed my physical therapist, who was aware of my pain, and demanded that I see someone specializing in shoulder pain and oncology. I scored an appointment that week with a sports medicine physician’s assistant, who looked me in the eye and heard. She peeled off the gown and touched my shoulder. Already there was an abscess, already she could see. She paused and said, “I hear you.” I wept. This power in listening and believing the patient, in my own, felt experience – it was such a relief. Quickly she sent an email and the wheels began turning, so that soon there was a biopsy, with test results, and then the plan.

  1. A 12 cm tumor in my rib area.
  2. Bone mets to my arm.
  3. A suspicious liver lesion, too small to biopsy. On the radar.
  4. Radiation, then immunotherapy.

And so this is where I am. I’ve finished radiation and am now starting immunotherapy. The tumors are inoperable. I’m receiving palliative care and pain medication. My oncologist tells me that immunotherapy is the best that is currently available, and there is a 25% chance of efficacy. These are difficult odds to remain optimistic about, but we are taking this one day at a time.

On the other hand, I’m up and writing again, and cleaning a closet, and going on short walks. The sun and moon are visible, and the backyard Golden Delicious apple tree will soon bear fruit.

I love my husband and daughter so much. My friends, they have become my family. The support has been a deep well of love, and I am so grateful.

One step at a time.

 

 

 

 

 

 

 

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.

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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?

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For you. 

 

After Days of Rain

The soil is soaked. A grey blanket of clouds is coating the bay, and the pounding rains are giving us respite. Time to open the door, take walks, and feel the ground again.

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Loose stones, shoots.

My husband and I planted bulbs in November. I wanted hyacinths, tulips, paperwhites, and daffodils. They are alive, making their way through the darkness.

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Such hope.

 

The Sky is Not Falling Yet: On Remission and Fear.

Hearing the diagnosis of cancer is like being suddenly thrown and held underwater. At first, you come up for air in frantic sputters. You flail. You are desperate for help. If you are lucky, you receive a life vest or ring, or some kind soul/s swim out to keep you afloat. You can rest, then. Backfloat. Look at the sun. This small, watery world becomes swimming, becomes wait.

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Hopefully sipping a mojito or a mai-tai. 

The thing is this: it is permanent. You can never fully leave the cancer sea. Despite the stories of full remission, which are wonderful and true, and my hope is to be among them, cancer does return.  In many cases it becomes a long-term disease, resisted for many years. Sometimes it is fatal. Sometimes it never returns. Why are there such varying outcomes? Like so many cancer factors, the answers are complex. A person’s health condition at diagnosis makes a big difference. Comorbidities (and I dislike that term)  such as diabetes, smoking, and high blood pressure can impact outcomes. Some cancers are highly aggressive and fast-moving, some are slow and pokey. Genetic mutations play a role, as do age, gender, weight, race (unfortunately, and equity of care is a huge issue), tumor size, and stage of diagnosis.

But the fear of cancer’s return haunts me. Each new ache, each pain, can turn into a dark spiral of imagined lethalities. There’s a term for this long-term cancer worry: Damocles’ Sword Syndrome. In the original story, young Damocles admires the wealth and “luck” of King Dionysus of Syracuse. To teach a lesson, Dionysus allows Damocles to sit on the throne, giving him all of his riches. But over Damocles’ head is a sword, hanging by a single horse hair. A single hair. Damocles cannot enjoy the opulence, the power, and the bright wealth around him, as he worries and worries about the sharp and dangling and weighty weapon.

Cancer survivorship has its own sword, its own hair. Remission – and health – are a sure relief and wonder. It’s where I live now, not on a throne but a kitchen chair. Each day involves a series of routines which include physical therapy, meditation and writing, among others – that helps ground me in this day. But – and there is always that caveat, you can’t fully release, for always there is and yet or but or for now, and that is the crux of this, isn’t it? which is how do I go on? – there is the anxiety of a single “hair” – a scan, an ache, another lump – that lurks. The hair. It’s there. You just have to look up.

So, what to do? I have no easy answers. I have gone to support groups, have asked for help as needed. Understand the impact of this process on people around you, and let them talk about it. Also helpful: not talking. It helps to go hiking or to the mall. Writing helps. Exercise helps. Forgetting helps. Focusing on the garden or the trees or the dog or cat, making a meal. Somehow it helps to re-notice the love in ordinary living, the basic goodness of going on. This table, for instance. These chairs.

Not much wisdom here, I’m afraid. And here’s the truth: I am afraid. But here I sit, on this basic wooden chair, and am learning to practice living with both each day’s opulence and cancer’s sharp glint.

And a single hair.

Love, wobbling, out.

 

 

 

 

Current Status: Pending. Better.

It’s been about a month past the actual surgery, and I am slowly, slowly, feeling the tide of “normal” energy return. It arrives briefly, a teaser, and then fatigue kicks in again.

But it’s coming back. I can feel it. And this gives me strength.

Pluses:

  1. The surgical drain will be removed this week.
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I would probably pop a bunion if I did this, but still. 

Freedom! What people don’t tell you about surgical drains is that they are clumsy, they stink, and they make normal movement difficult. Here’s a link for more info about the Jackson-Pratt drain system.

 

  1. I can drive again.
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I will be alert. I will look both ways. 

This, ladies and gentlemen, is also a freedom. No more do I have to call Uber. No more will I be confined to the walls of this (admittedly loved) house, trapped between naps and half-hearted attempts at chores. I can get drive-thru coffee. I can drive to forests.

Woot!

 

  1. The holidays are coming.

This one is balanced with some cons as well. I struggle with envy of those who are healthy, have intact, functional families that come from all around to visit. Cutting back on social media – the showcase of our hoped-for selves – will be a requirement. I can’t handle the perfect Facebook posts and the full-haired mothers and clean houses and cousins and grandparents. It makes me sad, and jealous. This is petty, isn’t it? I should cheer, root for them all. I should be a better person, meditate on it, extend the full light of compassion. And in my better heart I do. But not now. I’ve still got grief on my shoulder, fatigue on the other, and the twins of hope and fear to contend with. They take up a lot of my time.

On the other hand, there is the food. And the color. And the celebrations and neighbors and friends and candy and presents and watching my daughter open presents. There’s my husband’s goofy good cheer when I cook his favorite roast. There is the yearly ritual of baking a fabulous cake. There is packaging, pumpkin spice, coffee and pastries. This whole season: It’s too much sugar and carbs and drinks combined with the ancient warmth of huddling together against the darkness. Diwali, Hanukkah, Christmas, Kwanzaa, or just the tree.  It is this rallying-together-against-the-cold, this gratitude and kindness across the set table that says I’m here –  that I love. It’s the human condition. It’s us.

And hallelujah for that.

  1. I can write again.

 Recovering from both chemotherapy and surgery dragged me into a depression. Fatigue sapped my thinking into some vague void where words float, linger, don’t connect. This meant that writing anything – even reapplications for disability, let alone phone calls to the wireless service – were Sisyphean tasks that were best left gathering on the kitchen table. And they piled and piled until this past week.

New motto: When all else fails, make piles.

But leaf by leaf, this leaning tower of smog certificates and insurance notices is coming down. Like The Thing from the old Fantastic Four comics says right before a fight: “It’s clobberin’ time!” Instead of fists, I’ve got a dark roast, my papers, and a pen.

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Cheers.

Magic Hour

We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.

Here are a few shots:

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I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.

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Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.

 

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And here, with my daughter, is mine.

Love out.