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.
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.
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.
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.
It’s been three weeks since surgery. I’ve been really, really wiped out. I’ve spent most days in bed or on the sofa, wandering the house, doing this or that odd chore, but mostly resting. My oncologist said I probably won’t even start to feel recovered until four weeks, and not “normal” until eight weeks out. This, to my need-to-be-productive-self, helps me feel better. Two drainage tubes have made it impossible to sleep in any position except my back, and my right arm is slowly gaining range of motion back. Today’s the first day I feel like I can type for any length, and this, too, gives me hope.
If you are a regular reader of this blog, thank you for your patience.
This surgery sent me into a tailspin of depression. The truth about general anesthesia is that it is a temporary coma, and can have major effects on mood. Post-operative depression is not something I anticipated, but immediately after surgery I fell into a well of despair that had me near some monster edge. My husband and daughter were bewildered and concerned. Combined with the pain medications and the lack of mobility and drain tubes and magnitude of this surgery and this diagnosis, I was in a very dark place. I would walk into the kitchen and just stand, bearing wave after wave of utter, complete grief and despair. I’m not sure I’m describing the physical aspects of the sadness enough – my body felt physically dropped into some hopeless, dark well and I was flailing for air. Dear friends and colleagues reached out, and let me tell you every text, every visit was a life buoy. There is a kind of salvation on this Earth, and it is called Kindness. And each day is one inch better. That is my measure. One inch, or one half inch. That is what this body can do right now.
The surgeons (thoracic and plastic) took out one rib. This was the rib that was borrowed from Adam, and he can have it back.
In a nutshell: wait, see, hope. Checkups every three months. Periodic scans. Because this is a local recurrence of TNBC, there’s no hormone treatment I can take. There’s no other preventative chemotherapy available. The new immunotherapy treatments are for metastatic disease, meaning disease that’s spread to the bones, or organs, or brain, and consequently they don’t apply. I could search for a clinical trial, but my case is not typical, and I don’t have the cognitive bandwidth to do much more than read magazines and watch TV. I’m in remission now, and yet the risk for recurrence is high, over 50%, and happens within 1-2 years.
We are in uncharted territory, said my doctor, gently. We sat in silence.
What can I do? This is the part where I look down into the valley and decide. Despair or hope? Another step up the mountain, or quit?
I look around and down and see the faces of my family, friends, coworkers and a world of sisters and brothers and I draw on the kindness that is there. I am so grateful. To extend the metaphor, the air gets thinner as treatment continues. The body wears out. A person has to make more frequent stops and gather strength. But you, readers, friends, family, cancer sisters and brothers, are my oxygen tank.
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.
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.
The CT and bone scans came back negative for metastases.
I should feel elated, grateful, should be jumping for maniacal, life-affirming joy.
But I’m not. I feel like: whatever. Meh. As if in a Star Trek episode, my shields are up. Odd, huh? The closest description I can come to this feeling is that of an abused lover. Cancer is the abuser. He (and it could just as well be she) punches me out with a diagnosis: stage 3, triple negative, lymph node involvement. I am injured, and then I grieve, and slowly begin healing. Cancer gets quiet. Goes into remission. Behaves, offers hope.
And then he returns with another punch: the tumor’s back. And then another: surgery. And then another: high likelihood of recurrence. And each time my ability to emotionally engage with the process is reduced. I’m not talking about depression. I’m talking about a step by step process of detachment from a body that no longer feels trustworthy. All news is now to be listened to and taken like a memo, and I’ll consider only the action items. And the abusive lover’s apologies – cancer’s temporary respites from terror – are not to be believed.
Surgery is now possible and my doctors are planning to remove the tumor. Two ribs will be excised, and permanent nerve damage to my arm is likely. The tumor has grown, even from last month. I picture it, sometimes ask it what it wants, and all I see is a little dark factory that has programmed itself to proliferate. It’s like V’Ger from the original Star Trek. A satellite that was originally built to gather information, it eventually became self-aware, and then colossally destructive. I think the cancer cells are a little bit like that: they are cells that got programmed incorrectly, and now are replicating and replicating in a lethal effort to survive.
Please stop, I want to say.
Take your efforts elsewhere.
In the meantime, one day at a time. We wait now for the surgery date and plan for four weeks of recovery. Maybe I can have my ribs from the surgery.