It’s just one thing to hold a cup. It’s another thing to sip. It’s one thing to close your eyes, another to see. Frame by frame, each of these adds up to living. To life.
Another: my daughter enters the room, sits to check her phone. Her thumb strums the screen. Her neck is a swan staring down at the glass. All around us is the noise of living: the street traffic, dawn on a Sunday, this Sunday, here and now in the paper piles, the dishwasher hum, the ongoing ordinariness of morning.
I have passed many such mornings in a rush. So many days have rolled by in a turning of chores, tasks, to-dos. And the trance of pre-cancer life is one of there is tomorrow. You’ll get another chance. It is of course a myth, but it is one we live by.
But along comes cancer in its red truck and its repeating, manic music of death. Of dying. After nearly three years in and out of treatment, I still wake to its songs. I still wake and do a mental body scan with questions such as: Does my head hurt? How is my breathing? I check for aches, for pains. I imagine the worst. Anything lasting longer than two weeks warrants a call to my oncologist.
Life now is in-between. In-between scans, in-between appointments, in-between one medical event and another. Note the dash between “in” and “between.” It is a space I currently claim and occupy. It is hovering, unnoticed, a connector that links one state to another. A grammatical and embodied corpus callossum.
My body is a radar station and my mind is on alert.
I’m in a holding pattern now. Treatment for the recurrence to my rib is done. Scans are over. I’m NED (no evidence of disease) for now, but the likelihood of a third recurrence is high. Every day I am learning to integrate the Fear of Recurrence into the reality of Get on With the Day, trying not to let the one disable the other.
This anxiety is real, and many cancer survivors need support in coping with the PTSD of treatment and long-term side-effects. There is no shame in this. It’s also worth noting that in terms of human evolution, living with a long-term, life-threatening illness is relatively new. Our brains haven’t been equipped to process or deal with such a scenario, and so survivorship requires practice.
“Practice.” Such a reassuring, powerful word that speaks to honoring the effort, honoring each attempt.
Each day I practice meditation and breathing.
Each day I practice honoring this body and its strengths.
I practice self-compassion, and extend this outward to loved ones, friends, community, the world.
“No mud, no lotus.” Thich Nhat Hanh
Practice isn’t about perfection. It is, in a nutshell, doing. Doing without judgement, doing for the sake of itself. In this sense I find it immensely liberating – there is no call to be good at it at all.
What are you practicing these days? What practices help you cope with the stressors of cancer, of disease, of life in general?
Our small raised bed has weakening wood, the seedlings and sprouts are in disarray, and there’s a scattering of borage that’s about to rule one corner. It’s rainsoaked, a bit disorganized, not terribly well-tended. Its current aesthetic is wait and see. It is a small plot of patience.
I have, on my way in and out of the front door lately, paused by its side to ponder, regard, consider. Why? Two weeks ago I dispersed, with a most unscientific and erratic glee, small handfuls of wildflower seeds from a store-bought packet. I tossed about little pockets of what looked like tiny bent twigs, sand bits, and burrs. Then I covered those seeds loosely with dirt and went on my way. I went to work and back. I carried food. Books, papers, lunches came and went.
But after days of rain some tiny, hairs-breadth little sproutlings are emerging. I crouch down in the mornings to look at them. It’s nothing really, that sitting and staring, but it’s also everything. This comfort. This stopping. This delight. It’s surprise and hope and nurturing and a tiny tip of awe. There’s mystery, elegance, and momentum. Growth. And blooms yet to come.
And I can’t help turning my gaze to my brothers and sisters on this path through cancer, and how horrible it can be, and how illuminating and surprising too. Turning to trust in the world again, to consider the days ahead, is, unlike planting, no easy gesture. This body that has given us life has also attempted to take it away.
I look at the ground and think of floods. Mud. Stones and hail.
The unresolvable, ongoing pendulums of illness, health, life, death. Sunlight, rain.
Yet here, in their tiny upstarts, stand future flowers: hollyhock, scarlet flax, bachelor’s button.
California poppy. Cosmos. Coreopsis.
What can we do but plant? What can we do but wait?
And be here now, fully and with thanks, while they take root.
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.
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.
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.
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:
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.
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.