Despite flu and pneumonia vaccinations, this month I came down with some awful virus and acute shoulder pain. It’s been miserable, and here’s why:
1. My already surgery-incapacitated right arm, a zombie appendage of its former self, can barely reach past my shoulder. I am a person who puts dishes away, who likes to put up pictures. I like gardening, reaching over the sofa edge to put my arm around my guy. I am also right-handed. Now, with a stiff neck, stiff upper shoulder and shooting nerve pain down my right arm, all physical therapy exercises have come to a halt. Waking up involves a pain and capacity assessment, which then determines my mood, which unfortunately revolves around “cranky,” “tired,” and self-reproach at my limitations. I really hate chronic pain. I really hate cancer.
2. And the virus! March, according to my General Practitioner, has been peak flu season. While the vaccine helped, some other microscopic parasite decided to colonize this body. Score one, virus, for the timing of it: reinforcements, aka my immune system, were slow to rally, and even now, in conquest, the landscape is parched and needs tilling. Meaning: I’m really tired, rest a lot, cancel plans often (and am truly grateful for the patience and understanding of friends) and must practice patience.
3. That word: “patience.” It’s a tough one. There is so much I want to do, and so much urgency. I am sick of waiting, sick of living my life on the timeline of my illness. The self-help gurus echo in my ear with their calls for positivity, for strength, for “not letting cancer get the best of me,” and I get that we occasionally need those prompts. But for the love of Beezus, call off the joy. I mean it. You get to throw down the spoon, you get to binge watch reality crap. Some things just stink and neither Brene Brown or Deepak Chopra (despite their good intentions and expertise) can – or should – take you out of your anger or impatience or grief.
4. “The only way out is through,” and come the courthouse of full healing I’ll testify to that.
How do you deal with the chronic, unrelenting nature of cancer or another illness? In what ways do you allow yourself to be in the dark of it?
The diagnosis is difficult enough. Once you hear the word “cancer,” the world becomes a blur of shock, grief, appointments, treatment plans, and phone calls. The ground beneath your feet is unstable, and your future is no longer sure. Your calendar is no longer yearly; it bends into a series of hours, days, possibly weeks — months and years if you are lucky.
With cancer, time changes.
Time compresses. It becomes urgent. It becomes How much longer? and When will I know? It is waiting, waking, sleeping, weeping, and more waiting. Time turns into a photo negative, a dream-state in which death – and/or the fear of death – feels imminent.
It is a cruel and double whammy that, while processing the enormity of a cancer diagnosis, you must also face its interruption of the momentum of your life. You must suddenly make tedious and quantifiable decisions with long-term consequences. Cancer impacts it all: where you live, your relationships, children if you have them, and your finances. Everything becomes negotiable in your priority to survive. And this includes bill payments, travel plans, life insurance, savings, living trusts, disability, college or retirement – in other words, money. Money symbolizes hope. It can symbolize your future. And if you’re still working, as I was and am, a flurry of changes must be considered.
Below is a list of my own financial decisions. These are always up for negotiation due to the risk of recurrence, my work situation, and energy levels. And I do not in any way recommend these steps. Everyone’s situation is different. But I do want to share this roadmap in the hope of supporting someone else through this process. I also want to preface this by recognizing that I have a spouse with a health plan, a stable living situation, and a support network of friends and family. I am aware that many people struggle and do not have this support. With that in mind, I’ve included a short list of links at the end of this piece to help you make your own decisions about how to proceed, and to find support (empathy, godspeed) if you need it.
So, a few months after the cancer diagnosis, here is what I did:
1. I stopped saving for retirement.
You might think this decision was foolish, and I don’t recommend it. But consider: The prognosis for stage 3C triple negative breast cancer, with lymph node involvement, felt terribly grim (SEE IMPORTANT FOOTNOTE). Major surgery, chemotherapy, and radiation were in my future. I was in shock and grief, and wanted the money to help with treatment, counseling, and possible bucket list traveling with my husband and daughter. And the truth is that I don’t regret this decision. Not one bit. The small pleasures it granted our family were worth it. Noteworthy, too, is that this decision has also recently changed. With my recovery from this recurrence – a second round of chemotherapy and surgery – I’m shoveling small bits back into the 401K. I might very well live to retire, so with one big toe into the tepid IRA waters, I’ll start to save again. Crossing my fingers toes.
2. We made a Living Trust. Through an online legal service called Nolo (we have no commercial or other interest in them), my husband and I filled out the paperwork and got it done. It was simple and straightforward, and I felt such relief after completing it. After cancer, I had this terrible fear that my husband would also get ill and that our daughter would be left destitute. Completing these documents forced us to answer questions and make definitive plans for the worst case.
There are many companies that provide this service online. You can also hire an attorney, and they probably have better resources and more in-depth information about specifics, but the cost, likely over $1,000.00, is prohibitive. We didn’t have the cognitive or financial bandwidth for it. We live simply and don’t have complex financial dealings, so the online way worked for us.
3. We bought more services. Not things, not stuff, but help. One of the first services we purchased was a housecleaner. Twice a month, we hired a wonderful duo that came and deep-cleaned our house. May larks sing their praises. My energy levels tanked after chemo and surgery. Our family still had work, school, appointments – things to do. Coupled with a tired and sometimes cranky mama, this was a recipe for laundry piles, paper piles, random tufts of cat hair, stacked dishes, and an overwhelming sense of household chaos. But thanks to our housecleaners – whom we still hire, and tip, and thank, and are deeply grateful for – some sense of organization has stayed. Other services we purchased were: gardening, tree trimming, and Uber (after surgery).
4. We spent more on food. We bought healthier groceries and healthier pre-packaged foods. I didn’t and don’t always have the energy to prepare healthy meals, so it was often the grocery store salad kit, organic eggs, and splurging on the Whole Foods salad bar. Eating fresh produce requires frequent trips to the grocery store, meaning more money spent. We also treated ourselves to the occasional fancy meal. Worth every penny.
5. We bought less stuff. Gone were/are the days of impulse clothing purchases, for example. The trendy catalogue companies know our budget runs low. The library is the sole source for books (sorry, Amazon and independent booksellers) and thrift stores cheaply relieve any sudden need for novelty. We were never big on furniture, but any décor dreaming these days is tempered by bills. Dreaming it shall be. I’m ok with that.
Here’s the thing: I don’t know how long I have left. The scales weigh in favor of recurrence, meaning 1-2 years, but there’s always a possibility of long-term remission. This means Be careful with money. Be careful with your time. This has translated, financially, into permission to spend more on experiences, travel, life. Less stuff. No new car, no new table. Not a problem. But Paris? A five-star meal? Maybe. Possibly.
The way is open.
If you have cancer, what changes have you made? What are some of your considerations on this time- and life-changing path?
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.