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?
In order to remove all the cancer, the surgeon excised a rib and a “significant portion” of back muscle. But time has gone on. The drains are out, the surgical tape is gone, and now it’s scars and stretches and reaches and grit. Argh!
Step 1: Exercises for the lymphedema I’ve developed in my right arm due to the surgery. For those not familiar with it, lymphedema is a temporary or permanent swelling of the extremities (usually arm or leg) due to lymph node damage. Lymph node removal, often a part of later stage cancer surgeries, can result in a backup of fluid into the arm or area where the nodes were removed. And it’s what’s happened to me. My right arm swells and ebbs in accordance with my movement and idleness, and it’s now another side effect of breast cancer that I must – grudgingly – face. Next week’s agenda involves appointments for arm measurements and compression sleeve fitting. And if I must – and I must – get a compression sleeve, I’m going to get one that screams “DIRT BIKE SLAYER,” or one with dangerous-looking tattoos. Because sisters and brothers: Badassery is not solely for the able.
Step 2:Stretches. Oh, what fresh hell is this? My right arm currently swings like a dangling banjo. It is awkward, bumps around, is unsure of what gross movement and gesture it needs in order to return to the chorus. And so the kind physical therapists at my HMO have embarked gleefully (and oh how they laugh and type and so cheerfully cheer the grouchy patient on), on a program to challenge my movements. I stretch with bands, exercise balls, a pulley, and a cane. I reach up the wall to expand the chest and shoulder. I lay down and pull and reach and groan, soaking up hours of each day in order to knead and raise the bread of my tendons. Hello, serratus anterior. Hello, pectoralis minor.
Have a nice day.
Step 3: Aerobic exercise. I must now begin walking again. Months ago, pre-recurrence, I was regularly running 3-5 miles several times a week and lifting weights as well. I was in probably the best shape of my life. And now, after chemo and weeks of rest and tottering around like the old man Tim Conway, I am ready for the streets. 1 mile, 2 miles, and then back to running. Travels around the neighborhood, scouting the town. Sunrise and sunset, calf and bone. Trees.
I hope you, reader, are finding your own road too.
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.
The surgical drain will be removed this week.
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.
I can drive again.
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.
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.
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.
Imagine a large, plastic worm that drools liquid constantly. It is shoved through your chest skin and into your armpit, and its stomach sac, attached with a lengthy tube, wanders and slips over your belly like a rogue balloon.
Imagine that this worm’s belly must be drained twice a day. In the lengthy, slow, meandering draw down from your flesh into its rotund collections, there are flesh bits that look like fingers, raw chicken, fetuses.
Sleep on your back. Do not raise your arm.
Hourly you must shove this worm’s unruly flailings back into your pants.
Imagine that the reddish-orange fluid that gathers in the pool of this squirming hellion’s plastic gut is not blood. It is liquid detritus to be removed from the flood site. At times the colors of it evoke a sunset, which is pleasant enough except for the pus.
Getting dressed: 1. Place your shirt overhead first. 2. Let the garment rest on your shoulders for a few seconds. The tube must settle. 3. Slowly, so as not to shift your inwardly slithering medical reptile “buddy,” raise your arm and slide it gently through the sleeve. 4. Wait 10 seconds. 5. Repeat with the other arm. 6. Breathe a sigh of relief: the drain stayed.
In considering architectural innovations, ponder the labyrinth. Who is the monster? Who is the girl?
Each flesh bit that leaves the body may be a part of the disease. One might celebrate. Might.
Imagine removing your clothes. The shower water rushes. The wildly gesticulating worm of tubular regurgitations must be subdued and restrained for the cleansing, and so, like a madhouse warden, you tape and tape and tape it not to a chair, but to your skin. Supervise its movement. There will be no violence today.
Absolution? Only with its removal. Call the doctor.
Oh parasite, oh lollygagging and lengthy leftover lap lap lapping and long-remaining lily of the surreal translucent and post-surgical liquid stem linking loss to luck, little to less, longing to love and back again, you’re a lazy lurid river, a milliliter lover, a sewage leaver, convenience killer, a bendable lamentable wily water lure, a makes-it-hard-to-hold my daughter and my husband lank and lowbred dirty and late single-string lyre.