Cancer and Boundaries: What the Compass Told Me

Everyone has their orbits, their ranges of motion, their finite, functional horizon between the sun’s rise and fall. Before cancer, these were self-evident; I had no need to articulate them. My body had a momentum that fit the workaday arc of most people my age, and then some: I ran 5 and 10k races, worked out, gardened and wrote, all while maintaining a full-time job and a home. These were facts.

Once cancer entered my life, the ranges and orbits changed. I find myself wanting to find a finite word for those changes here, such as “narrowed,” or “were reduced,” or “became limited,” because in one sense those “reductions” in abilities were physical bricks. Truths. A gash where my breast used to be. My new swollen, compressed arm.

But words implying reduction aren’t entirely accurate either. I say this because reduction implies permanence and certitude. A “reduction in abilities” doesn’t encompass the sudden surfacing of a kind of necessary attentiveness to the body, which is always in flux, always changing. And the cancer body becomes amoebic in its illness: cells die and return, fears resurface, hair grows and falls, skin tenders after sutures and heals, muscles stiffen and restretch, and the mind learns a new vocabulary of being. “Scan” is no longer about the landscape outside; the word beams inward, searching for malignance. “How are you?” is no longer innocuous and quotidien; laden with the weight of mortality, the phrase becomes a question of life itself. How long will you live? What is happening in your body? How frightened should I, the asker, be? There is such freight with the language. A kind of lightness has been lost.

And so, who am I in this new body? Where do I go? Bewildered in some desert, then a city, then a bed, then a corridor – who? Where? What?

One metaphor helps me now: the compass. It is astral in the sense of earth-only, grounded here and then here. It is a traveling re-orienter. To consult it means to know where the one thing is, which is “direction,” which is not a destination per se – for the cancer patient, true north, or “health” is an implied and ongoing possibility. Some of us are further from this than others. And some must close their eyes, rest, and stop.

The particulars:  My body is changing, not for the better. My tumor markers have increased, and despite eating and eating, I can’t gain weight. I get so very tired. Restless legs torture me in the evenings, and scans are coming up. Like the compass, the general sense must reground in the particular and its details. I am here now, and I consult and consult the gravity below. In my hand is a small circle. Not much else is known.

 

person holding compass
Photo by Valentin Antonucci on Pexels.com

 

 

 

Jealousy and Metastatic Cancer with a Disappointing Ending.

I was recently diagnosed with stage iv triple negative breast cancer. This wasn’t my first time with it – three years ago, I received my initial diagnosis of stage 3 of the same disease. Once I finished treatments – mastectomy, chemotherapy, radiation – I was told I was “cured.” I thought I was done.

Not so. In 2018 I had my first recurrence (a tumor near my ribs) and had surgery to remove it.

In the spring of this year, late March 2019, nearly three years to the day, I was diagnosed with a second recurrence. This time, metastatic. Another tumor in the same area as last year’s, plus lesions in my right upper arm bone, and a suspicious, to-be-watched lesion on my liver.

The cancer had spread. It had metastasized.

And what “metastatic” means to me is “inoperable.” It means terminal. It means The Rest of Your Life.

It means: You’ll never be free of it, it’s here to stay.

The hope I once had of returning to normal is gone. Gone. I will now be living with cancer for as long as I am alive.

And so once again I make adjustments. I grieve, my husband and I talk about our options, we regroup.

*                              *

I wanted this post to be about jealousy. I wanted to talk about what this new diagnosis means in terms of loss and change, and the way I feel and talk about time. I wanted to talk about what energy means, what an average day used to feel like, and what it is now. How making coffee was just that, and not an arduous series of breaths, painful movements, knocked-over cups and then utter, exhausted relief in crash-sitting to drink it.

I wanted to talk about the ache I feel when I scroll through social media sites and witness families smiling in the sun, a photo of a mother and child in an inner tube on a river, a lazy and slow river where on a beach dogs and small children upon arrival run to greet them. I wanted to write about the long-held ache in my throat when photo after photo of mountains, some friend’s reunion in a cabin, the Paris couple’s kiss, the neighbor’s good times at the local pub, and all of their clicked “likes” and “looking good” comments show up on my feed as if everything were normal. As if time, like the lazy river, was to be had in these long hours, fistful after fistful, all of us just looking around in total wonder, endlessness its own known gift.

Dear god, I miss the eyes half-closed sheer bliss of not knowing it, all’s well, fat tire tube and being just another body in a lit, slow-moving, unpunctured ring.

*                                    *

I wanted to talk about the italics of energy and normal, the new italics of time. Each of these words is stretching forward past itself in an attempt to grab more, take more, because their own current letter legs are weak. Today’s an unknown, the words seem to tell me, so make sure there’s a bit of them in the future. Bank all three: energy, normal, time. Always lean towards the next hour, the next day.

-Is not how I really want to live, though. Too much leaning forward means a weaker grounding, means the weight on one’s footing is likelier to sway. It means I’m not here fully. It means rush and hurry.

*                          *

I’m so jealous of other people’s lives. Their health, their beautiful families, their cancer- and fear-free lives—

the ability to plan, to think in one- and five-year increments. The gift of time that is handed to them. The safety glass that still protects their days — it’s an illusion of course but they still have it—

Maybe that’s you? Lucky. You’re a lucky one. And you’re innocent of course. How would you know, did I know, that we had that luck when we had it? No one does. It’s the nature of health to be unseen until it’s not. It’s a Plexiglass dome on top of a building.

For me, that safety glass is gone now. A wind is blowing and always will blow. It’s a closer step now to a long way down.

*                                 *

I feel obligated to write something hopeful but I can’t.

It feels more authentic to me to just stay here and say: sudden.

To say: time.

 

 

I am not a comfort.

 

 

 

I Have Stage IV Triple Negative Breast Cancer.

I’m sitting here, staring out the window, and I can’t believe I’m writing that I’m stage iv, that I’ve reached this stage, that it’s here, the “terminal diagnosis,” and that I am now in the momentum of the process of prolonging survival and not searching for a cure.

My world has been a world of bewilderment, grief, a spinning tilt-a-whirl with dead ends, crazy laughter, heart monitor beeps and unending not-ending. My emotions have been a see-saw with no fulcrum, test after uncertain test, and decisions, palliative care, medications that leave me in a vague haze of feeling good and lethargy.

And yet sometimes, like today, I wake up and feel almost normal. Coffee tastes like dark and unsweetened caramel and is such a pleasure. I can clean a closet, I can bake a cake.

pexels-photo-776945.jpeg
For the record, my cakes are much messier. 

This all began with shoulder pain in March. Like many women with pain, I minimized it. I was back at work, had recovered from major surgery, had had clear scans in January, and overall felt good. I was back to “normal.” The motions of my life had been reset, and I relished the sense of routine. My husband and daughter visibly relaxed into the days and the ordinary bickering and goofy jokes settled back at sea level. “The house was quiet and the world was calm.”

But the pain wouldn’t go away. It was insistent. It felt like a large hard marble pushing against my scapula. By late March, I was getting odd fevers in the afternoon that would sometimes rush to 102, and in a matter of an hour settle back to normal. My body ached. The fatigue was crushing. After work, I’d pop ibuprofen, curl up in bed, and crash into oblivion. I knew, as we do, that something wasn’t right.

I emailed my oncologist. As is HMO protocol, she referred me to my general practitioner (GP). I went to see him, explained my shoulder pain and fevers, and he resolutely stated that my symptoms indicated a virus. He told me to rest, take ibuprofen as needed, take liquids, and “keep an eye on it.” This was early April.

I waited two weeks. I didn’t know that during this time, my tumor(s) were growing. Triple Negative Breast Cancer (TNBC) is an aggressive and fast-moving cancer. My doctor’s misdiagnosis gave time for “Charlie” (my tumor’s name) to gain space.

The symptoms got worse. I started calling in sick to work. The pain was near-excruciating, and 800 mg tablets of Motrin were doing little to assuage the pain. On a Sunday, I called my HMO and asked for a same-day appointment. That day, I saw another doctor. She repeated my previous GP, declaring “It sounds like a virus,” and then told me to wait it out. I pointed out that I was a cancer survivor and that my previous recurrence began with shoulder pain. Looking into her computer screen, she said, “I know, I know.” Handing me her card, she said she’d prescribed some shoulder cream and told me to “keep an eye on things.”

The tumor was growing. At this point I could not lift my arm to comb my hair. I could barely drive. Sleep was fitful. Turning to my right side was agony.

Neither doctor asked to palpate my shoulder. Neither doctor asked to even see it.

On that Monday I emailed my physical therapist, who was aware of my pain, and demanded that I see someone specializing in shoulder pain and oncology. I scored an appointment that week with a sports medicine physician’s assistant, who looked me in the eye and heard. She peeled off the gown and touched my shoulder. Already there was an abscess, already she could see. She paused and said, “I hear you.” I wept. This power in listening and believing the patient, in my own, felt experience – it was such a relief. Quickly she sent an email and the wheels began turning, so that soon there was a biopsy, with test results, and then the plan.

  1. A 12 cm tumor in my rib area.
  2. Bone mets to my arm.
  3. A suspicious liver lesion, too small to biopsy. On the radar.
  4. Radiation, then immunotherapy.

And so this is where I am. I’ve finished radiation and am now starting immunotherapy. The tumors are inoperable. I’m receiving palliative care and pain medication. My oncologist tells me that immunotherapy is the best that is currently available, and there is a 25% chance of efficacy. These are difficult odds to remain optimistic about, but we are taking this one day at a time.

On the other hand, I’m up and writing again, and cleaning a closet, and going on short walks. The sun and moon are visible, and the backyard Golden Delicious apple tree will soon bear fruit.

I love my husband and daughter so much. My friends, they have become my family. The support has been a deep well of love, and I am so grateful.

One step at a time.

 

 

 

 

 

 

 

Wallace Stevens, John Cage, and Cancer. “Everything we do is Music.”

Wallace Stevens starts his famous poem with the same line as its title, “The house was quiet and the world was calm.” In this poem, the word “calm” repeats six times, lulling the reader into a sense of languid, expansive openness. “The world was calm.” A person could continue, could go on. This lived moment, in this poem, is given meaning through its rearticulation and recurrence.

white and red house surrounded by trees at night

An ideal. A memory.

“The house was quiet and the world was calm.” My own world is returning, slowly, back to the familiar figureheads of normalcy. I say “figureheads” because my life’s markers are symbolic, not entirely trustworthy, images of what used to be. My hair is a slow-growing helmet, no longer a velvet crust, for example. And yet I don’t entirely rely on its long-term presence.

My health is in stasis, no better, no worse. Chronic shoulder pain has become my companion. Every day is monitoring, listening into the body’s conch shell and hoping for echoes of normal.

blur close up conch focus
Inside is future or a past. 

The figurehead of my family is clearer, but I know the undertow of sorrow still holds sway. Look around, the world seems to say. Touch the shore again.

I try to. The world goes on “as if,” the sun also rises. And yet to re-enter the old life again and again in this new body, with its losses and fears, can feel like a lie. Each day feels not so much an entry as an attempt. Hello how are ya goes the sincere greeting to the mail carrier, the grocer. No ill will towards anyone.  And yet I close my eyes and feel the fractured, unmoored elements of this body pulling me towards falling.

Equilibrium, even the appearance of it, takes much more work.

“The house was quiet and the world was calm.” Stasis. The dash between words, a valley.  The musician John Cage has a famous work called 4’33”, and it is complete silence. Four minutes, thirty-three seconds of silence. Quiet. The audience sits and hears – no, the idea is to listen– to coughing, the rumble of the ventilation system, seat creaks, rustling, and the quiet.   To just sit. The piece is a statement to be here now. To be present, a reminder that ordinary sounds, attended to, can become song.

Or simply:  Stop. Break. Wait. Beauty is everywhere.

“The house was quiet and the world was calm.” For now, for now.

There’s no resolution here. No closure. I’m aware that my hunger for resolution is a hunger for a certainty that cannot come. We who live in Cancerland, stage IV or recurrent or just diagnosed, have stepped into a world of mirrors and aberrations, in which the life we saw before is distorted. Figureheads on ships that used to guide us can’t be believed. Music has more minor key, or no familiar notes at all.

And what can we do? We return to our seats, or to the doorway, again and again, and in either the silence or the new music we make some way.

wood landscape nature forest
Photo by Pixabay on Pexels.com

What is your new way? What are the new experiences, sounds, sights that you are attending to as you recover?

 

 

 

 

Living with Chronic Pain Or Why I Cancel Plans at the Last Minute and Throw Down the Wooden Spoon

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.

forest photography
On bad days, I hang out here.

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?

 

Cancer and Money: My Unprofessional and Probably Somewhat Unsound Choices

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.

opened mouth black haired boy in gray full zip jacket standing on grass field taking selfie
I hear Suze Orman screaming, “Nooooooo!”

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)[1]. 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).

Free housecleaning services for women with cancer (sorry, guys) are available here: Cleaning for a Reason.

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.

man standing on arc doorway

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?

 

Places to Start:

  1. Cancercare.org – They provide a plethora of services, including free rides to treatment and financial assistance.
  2. The American Cancer Society website includes resources for short-term housing and free food.
  3. The Cancer Financial Assistance Coalition (CFAC) is a national network “helping cancer patients manage their financial challenges.” Their resources are extensive.

 

[1] And yet nearly three years later, I am here. I’m running a 5k race next month. Memo: Don’t Google your prognosis.