Cancer Super Achievers: An Unproductive Lament

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.

woman wearing gray shirt and black overalls on boat
I wish I had her hair. 

“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.

Not productive.

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.

Not productive.

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?

 

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.
woman in pink dress doing jump shot while extending arms under white clouds
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.
low angle view of cat on tree
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.

One Rib Part Removed, Not For Adam

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.

white and gray cat paw
My right arm is a large, dangling comma. Sans fur. 

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.

I honor it, as much as I honor joy.

moon and stars

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.

 

Taxotere and Xeloda

I am recovering from my fourth cycle of Xeloda and Taxotere, and I’d like to talk about how things are going. This treatment plan is for a recurrence, a 5 cm tumor that showed up during my annual MRI in March of this year. The goal is to shrink this tumor in order to make it operable, and therefore remove it.

I receive Taxotere every three weeks, and, on the same day as the infusion, begin a two-week cycle of 4000 mg of Xeloda. Four pills in the morning, four at night.

As of today my eyes water constantly. My nose is an incessantly dripping faucet, causing me to wipe, drip, wipe, drip, and because of this I’ve become wary of cooking and paperwork. Restless legs make it difficult to fall asleep, leading to a cycle of fatigue and sleeping until 9 or 10 AM that has thrown my summer for a loop.

bed bedroom blanket clean
This is not my bed. Artfully decaying foliage plays no role in my sense of decor.

So far, I feel fortunate that I haven’t experienced Hand/Foot Syndrome, a common and difficult side effect that causes peeling, itching, and can cause the permanent removal of fingerprints. And so far, I have no neuropathy. Knock wood.

But the fatigue. I’m writing this to share with others in treatment, other survivors – you will know what I mean when I talk about the crash, the far, low tide that comes with waking and feeling as if some deep core of bones and blood has been removed, and all that remains is an easily-toppled monument of skin. You become a heap of unmoving muscle, resolved only to rest. Rest and sleep are what the body orders. Mail opening or reading an email becomes an orbit of language that revolves but does not land – I can’t wrap my head around any cognitively demanding tasks after infusions. Give me TV, give me easy magazines. Youtube cat videos and naps.

close up portrait of cat yawning
The National Enquirer!

I find myself cueing up bingeworthy shows: old episodes of The Office, Handmaid’s Tale, Sherlock Holmes, and soon the latest Orange is the New Black. Some of these I watch at night when my husband and daughter sleep. Others I fall asleep to. Dr. Phil is another favorite. After all my losses, I can at least assure myself that I am not duped by internet Don Juans, or that no one in my family has been kidnapped by a cult.

The fatigue, it comes and goes. It is unpredictable and when it comes it must be honored. This is one of the many lessons of cancer: Listen to your body. It is its own untameable animal that requires tending, and if you listen it will lead you well.

How do you deal with fatigue? What are some ways you pass the time when your body says Stay?