This is Happening

A memoir by Heather Barnes

I.
On June 23rd, 2019, I had just finished the swim portion of a triathlon I had not trained for. Dripping wet I prepared to mount my bike for the 30 km cycle; the second portion of the race. Alice, a best friend of 20 years—strong bonds formed while living together in the scuzziest of University of Toronto dorms have kept us close—spotted me from the spectator area and shouted “THIS IS HAPPENING!”

“This is happening” is also what I said to the interventional radiologist as they explained that I needed a CT scan-guided liver biopsy so that I wouldn’t have to have a bone biopsy.

THIS IS HAPPENING

Dealing with the ramifications of a Stage IV cancer diagnosis requires a lot of the same mental fortitude that I tapped into for that triathlon; but cancer is a hell of a lot worse and way less fun. It is no fun.

I am in my late 30’s. I have formed an idea of myself. I know my passions. As my oncology therapist pointed out early on in our conversations I should be in the action phase of my life— and I was. I was in it. I made music and art that was important to me, I have close, supportive friends, I have a family, we had a new home abroad. I was full on in action mode. Then full stop.

Now, even amidst a pandemic, when everyone is more still than usual, I see my peers—my closest friends, my husband—moving forward with their action phases. One option is to consider that the action phase of my life has ended. Fold myself inward, slip away. And while that will happen, possibly very soon—too soon—I do not feel that I am finished with my action phase.

What will my action phase look like now? How do I live my life fully while simultaneously wrapping it up? I have to confront my mortality head-on while living—in part for my six-year-old daughter, to teach her by example how to live— but mostly for me. I finally have the experience, confidence, and the independence to live the way that is right for me and this forced period of reflection is poorly timed. Now doesn’t seem like the proper time to dwell on what the meaning of life is. I thought I would reflect on that decades in the future; when I am elderly, sipping tea, on a porch. Now is the time to make meaning in my life and in unknowable ways make meaning for those around me; meaning that will hopefully remain long after my remains have been scattered. Dust to dust and all that.

In the few months since my diagnosis—amid tests, scans, chemotherapy, radiation, surgery, repeat—I have come to this conclusion: if your midlife becomes the end of your life then you get to break the rules. If my corporeal self has broken the rules and allowed my own mutated cells to infest my breast, spine, and liver then my conscious self can be allowed to break rules too.

At a time when my autonomy is being taken from me, I have to find a lifeline for my mind. A tunnel out. A way to move through this new direction my body is taking me. To find a way forward I am looking back and in the brief period that I can excavate for hindsight I see that the moments in my life that have held the most meaning for me are when I have listened and really been with another person, or myself; when I have relished loud and unthinking moments of release and joy; moments when I have experienced sorrow so deep that it left a relief impression of beauty. I collect these moments to guide me as I forge a path forward.

All of this is well and good but the story of how I got here was a hell of a ride.

So.
How did I get to where I am now?

37 years old. North Carolina. Dying of cancer.

Living with cancer.

II.
In July 2019, just weeks after the triathlon, I moved to China with my husband and 5-year-old daughter. My husband had taken a position at a new university (an exciting career change for him) and I was ready for a new adventure. The months leading up to our move were incredibly busy. We sold our house, gave away most of our stuff, said goodbye to our dear friends and farewell to the small town in Montana where we had lived for 12 years. We chose not to take too many of our belongings with us. Some clothes, toys, a few knick-knacks to remind us of home, and books. Lots of books.

We drove across the continent seeing friends and family. Our last stop was at my family’s intergenerational cottage near Toronto, Canada. There I meticulously fit all the belongings we would use to begin to set up our new life into 6 checked bags, 3 carry-on bags and 3 personal items. I had already measured each of the bags and made sure they were the right dimensions, then packed and repacked at each stop along the way. As I packed them one more time, I checked their weight. Crammed into the back of my mom’s small SUV, it didn’t seem like much. Thirty hours later as we made our way through customs and immigration at Shanghai’s Pudong Airport it seemed like a lot. It was enough. And knowing how this story ends it was probably too much.

We were moving to Kunshan a city of about 2 million people, 70 km from Shanghai. For the first time since finishing university I did not have to work. In fact, my visa status didn’t allow me to work. I am a musician and before this trans-pacific relocation my work had mostly brought me joy: collaborations with other musicians, teaching my young students at a therapeutic school for emotionally disturbed children, and planning and teaching my classes as an adjunct instructor of voice and music appreciation. In my university days I had worked at a record store in downtown Toronto (an iconic institution there: Sam the Record Man). My work was stimulating and creative. It was fun. Our big move sometimes felt a little daunting but I was excited to start new projects and explore.

We spent our first two weeks living in a hotel room surrounded by our stuff. My husband watched—incredulous—as I added to the chaos by receiving deliveries of items for our apartment. In my defense, I had been told frequently by our property manager that our apartment would be ready “any day”. We were in good company; some of my husband’s new colleagues and their families moved in to the same hotel and we formed friendships with them. It was a confusing, warm, and exciting time as we separately, together, and with help from kind strangers figured out our new home and sorted out our new lives.

I worked hard setting up our apartment and then, within a few months, we decided to relocate to another city, Suzhou—closer to our daughter’s school— and I set up an entirely different apartment. In China, apartments typically come furnished. Somehow, I managed to rent two unfurnished apartments. The landlords paid for the furnishings while I chose the furniture and décor; I hope the next tenants share my good taste. Shuttling my daughter to and from her school and making seemingly endless trips to IKEA took up a good amount of time. I was busy, however I still had lots of time to myself. We had a wonderful and warm housekeeper who took care of our home. I took a course on creative writing, and began studies in teaching English as a second language. I went to Pilates classes, Chinese cooking classes, studied Mandarin, and planned family vacations (Korea, Japan, and Yunnan Province, China). I volunteered to teach English to students at a school for children on the Autism Spectrum. When I was homesick, I would go to one of the ubiquitous Starbucks and order a Caramel Macchiato.

During those months in China, I spent a lot of time amid the hustle and bustle created when millions of people cooperatively share space. The traffic patterns alone were a marvel: motorized tricycles with live chickens on the way to an early-morning-impromptu-sidewalk market. Or, those same motorized tricycles but stacked meters high with cardboard and Styrofoam for recycling. After a few months I started trying to figure out where all that recycling was going. Was this a side business for people or was it their main source of income? From what I learned the answer is “yes”.

Back to the traffic; it consisted of many scooters, with sometimes just one person riding and sometimes an entire family, the children nestled in with their parents, all jostling alongside transport trucks, Mercedes-Benz, and Teslas. I was usually in a Nisan sedan, being driven—the Chinese rideshare app we used was indispensable.

Getting my driver’s license was not something I chose to do, primarily because if I ever got lost or in an accident I would not have been able to express myself adequately with my rudimentary Mandarin: “yes” “hello” “goodbye” “no” “good” “thank you” “I would like 2 buns” “I am going to Shanghai” ”I do not understand”. While the words “no” and “good” together could have been helpful in a tricky situation, I would have been totally stuck after that.

I was, however, frequently stuck with whatever food I managed to order. In one of my early food ordering adventures I tried to tell the server that I could not eat eggs. What I actually said was “there are no eggs here?!?!?” And I was promptly served a plate of shrimp with scrambled eggs—and a flan. After that I added the correct wording for “I cannot eat chicken’s eggs” to my vocabulary.

Always being a passenger allowed me to observe and consider my surroundings. I saw hundreds of apartment complexes each with dozens of similar looking apartment buildings and each in some state of construction, use, or demise. I saw all manner of agriculture: large farms on an industrial scale, small community gardens on the banks of the canals, and balcony plantings. I saw the transportation of goods (on the aforementioned trucks, and tricycles). But my favorite was seeing barges on the canals, empty and floating high or loaded heavily with goods, on their way to somewhere. The barges were transporting goods—and in a small way keeping our world going—and they doubled as the homes for the people who worked the barge transport business: families with laundry hanging out to dry, a few deck chairs, and sometimes a decorative flag or tomato plants. There were the enormous factories of multinational companies whose names I recognized and small local companies making some of the hundreds of billions of dollars of goods that are exported every year to Canada and the US. All of this in the 30-minute ride between my home and my daughter’s school.

Yes, the pollution was bad (after all, these factories were making goods for the world). The air was often hazy, I developed a cough. We couldn’t drink the water and I wasn’t even sure I should be using it to wash the dishes. There was constant surveillance. Video cameras everywhere. I don’t think I have ever felt safer—even as I travelled around in stranger’s cars to unknown areas—or more afraid that I would accidentally do something wrong, than I did when I lived in China. In moving to such a vast country my most gripping fear was that our daughter would run away from school and just be utterly lost. My daughter’s school had the ubiquitous video cameras. One of the teachers once told her they were “Santa’s, so he could tell whether she was being good or not” …at that moment it was a resounding not.

Amongst the masses of people I was often alone, lonely sometimes. I often felt insignificant. I felt alone most acutely when I was by myself in my apartment, in my apartment complex with dozens of buildings, in a city of millions, in the most populous country in the world. A country where I could hold a conversation with relatively few people.

Despite the impressive population the streets often seemed empty to me. The days when I was smushed between a multitude of bodies as we shuffled our way through the train station in Shanghai right before Chinese New Year felt more in line with my expectations of how moving through such a populous nation would feel.

I remember emailing one of my best friends when I realized my daughter would be in school for full days: “I am really not sure how I am going to fill my time. So many feelings and I am all alone. I wrote this through my tears.” Minutes later I wrote “Just remembered I am a musician. I can always fill my time with that. Obviously. Whew.”

Aside from a few testy security guards at a luxury apartment compound and one wary looking police officer, people were unfailingly kind. Always trying to understand me. But also, sometimes amused by me. Who knew wearing rubber rain boots on a rainy day would draw so much attention? Or how odd I would appear as I carried my daughter’s booster seat around with me so we could safely ride in cars together? Coming from a more northern climate we found our new environment a little humid and hot. In the early autumn, the bundled-up locals would look at us aghast, touch their coat clad arms and say something which I can only guess amounted to “What could you possibly be thinking? It is freezing! Why is your cute child not wearing a coat?!”

III.
For Chinese New Year I looked for a place to go on vacation. Somewhere close, with clean air. In mid January, on the night before we left for our vacation to Jeju Island, South Korea, I thought to myself, “what if this is the last time I am in this apartment”. In the Western news sources I followed there had been rumblings about a virus coming out of Wuhan in Hubei province. Our housekeeper told me that she was traveling to visit her mother over Chinese New Year vacation. I asked her to show me on a map where she was going. I wanted to make sure she was going somewhere safe. She was going to Hubei province. It was not near Wuhan, so I said nothing. In the end she was locked down in her mother’s home town as the virus made its way around the world. I was so relieved when she was able to return to her own home, healthy.

Our trip to Jeju Island was supposed to be a week long. We couldn’t drive while we were there so I had rented bikes for my husband and I, and a bike trailer for our daughter. We stayed in a studio apartment right on the coast and our balcony faced out to the ocean. We spent the week biking. Hours every day. We tried local restaurants, we shopped at the grocery store, viewed picturesque waterfalls, and we picked tangerines at one of the many citrus groves that checker the island. We took a very long, cold, and rainy-day trip to a beach. We rode city buses to visit a Greek Mythology Museum. We celebrated my 37th birthday at a Thai restaurant while looking out on a starlit ocean then rode our bikes home in the moonlight. We hiked the extensive trail system that traverses and circumnavigates the island, scrambling along the rugged lava rocked coast. It was so wonderful.

As the week went on, we started to see more news stories about the virus. My mom emailed me to suggest that we come back to North America. We decided to extend our stay in Jeju. Stay put, and watch what was happening in China.

I was also feeling some soreness on the underside of my right breast. I had undergone a breast reduction in the winter of 2017 and after the surgery I had a similar soreness as I healed. This felt like scar tissue. The discomfort was easily explained by the surgery, a little weight gain, and a too tight sports bra.

My husband’s employer started talking about reconvening the faculty to North Carolina where his university’s affiliated school was located. We considered all of our options and decided to go back to America. We would check into a residential hotel, wait out the worst of the virus in China and then mid-March (April at the latest) we would return to our home in China.

The course of COVID-19 and the implications for international travel are now infamous.

We left Jeju Island on a multi-day trip for the West. We only had what we had brought on our vacation—my luggage contained bike shorts and athleisure-wear. My mother met us at the Toronto airport with winter boots and coats. We had a visit with my Aunt and Uncle and I was exhausted. I drank bottomless cups of coffee. My daughter and I played in the snow. I drank more coffee. Looking back, I wonder if the cancer was causing my fatigue, or if it was just jetlag.

Should I have known?

Finally, a week later, in early February we checked into a hotel in North Carolina. We saw our friends and my husband’s colleagues who had also made their way to the university town. We couldn’t believe it. Wasn’t it crazy? Like us many of them had been on vacation and were pretty surprised to find themselves stateside.

The borders closed.

IV.
As we settled into residential hotel life, I noticed my breast was hurting more. I started building a little pillow nest in bed to support myself while sleeping. My breast looked bigger, maybe? Then sharp stabbing pains.

Sunday March 1st, 2020 was a beautiful, sunny day. My husband took our daughter for the afternoon and I hopped on my bike and went exploring. It was great, wind in my hair, uncertain about the future but relatively carefree. I spent part of the afternoon in a local coffee shop building a new website—as a musician I was giving some thought to what I might do creatively upon our return to China and I wanted to have up-to-date info about me on the internet. That night after dinner with my family, once our daughter was in bed, I sat with my laptop and perused brochures for children’s activities in our town. I started to plot out how she and I would spend our time. She would not be attending school—we were having a hard time finding a short-term schooling solution so I was going to homeschool her.

I felt the stabbing pain in my breast and I thought “that is just not right”.

The plastic surgeon who had performed my breast reduction years earlier had attended the medical school nearby. I thought, “maybe she has a friend who set up a practice here”.

Along with the pain I thought I could maybe feel something hard but assumed it was just scar tissue, or maybe some other side effect from the surgery. For two decades before the reduction I had lived with pain and discomfort due to large breasts. I was used to pain. I was also used to ignoring it. This new pain seemed like too much. I emailed the surgeon before I went to bed and when I woke up the next morning, I had an email from her: “go to a doctor and go to a doctor now”.

I made an appointment for that afternoon. The doctor listened well and was very kind as I described why I was there. He did a breast exam, stepped back and said I would need to have a mammogram the next day. “We have to prove that that is not cancer” and “there is no way but through it. You will just have to go through it”.

He knew.

I smiled at people as I checked into the cancer center the next day for my mammogram. I was 37. Young. I had had a clean mammogram two years earlier before my surgery and a normal pathology report of the tissue taken from my breast during that same surgery. I felt healthy. I had just biked and hiked for days. Anyway, breast cancer isn’t supposed to hurt.

The mammogram tech positioned my breast on the plates of the machine, and said “you are probably going to have to have an ultrasound”. Sure, I thought. My breasts must be difficult to image due to the scars from my surgery. But actually, as she positioned me her experienced hands probably recognized the pair of 2 cm tumors on the underside of my breast for what they were.

She knew.

Later, as the radiologist began moving the transducer over my breast for an ultrasound, I turned my head to watch the screen.

I knew.

A very large, dark black oval appeared amidst the hazy white, gray, black emulsion. I started to cry. Then two more similarity dark, out of place, smaller circles showed up on the underside of my breast—they looked like twins. I asked the doctor if it was cancer.

She knew.

A biopsy that day proved it. fuck.

I spent those first few days after receiving my diagnosis sitting on the bathroom floor of our hotel room—the only place I could be guaranteed privacy; where I could talk freely without my young child overhearing—calling doctors, friends, family. Telling them. Talking with them.

They knew.

What I would learn later is that there is a kind of breast cancer that does hurt. It is uncommon. It is aggressive. It pops up quickly and progresses rapidly. Over the next few weeks my breast continued to swell, the skin started to turn red, a little purple, it exhibited a tell-tale sign—peau d’orange (French for “skin of an orange”)—and my diagnosis became visible: Inflammatory Breast Cancer.

Future appointments and scans told us that the cancer had spread to my lymph nodes spine, and liver. It was metastatic. Stage IV. A genetic test told us that my cancer was not inherited and that it very likely developed sporadically; a FISH test, a specialized genetic test of my tumor cells, told us that my cancer was triple negative, meaning my treatment options would be limited.

V.
My daughter often does a great deal of research into her areas of interest. She is an expert on the human digestive system, dressing up one year in a digestive system Halloween costume I created to her specifications. She has investigated the valves of the heart, the migration patterns and life cycles of butterflies, and most recently: outer space. She is fascinated by processes. Her obsession with outer space—where the processes that we know are fascinating and the things we don’t know are endless—was an inevitability.

She frequently reminds me that the Andromeda Galaxy is going to collide with the Milky Way in the future. I think that fact is a source of great excitement mixed with a little fear. Such an addictive combinations of feelings.

Recently, as she and my husband shuttled me to one of my radiation appointments at the cancer center, she pretended our car was a space ship, our house was the Andromeda galaxy and our destination, the cancer center, was a super massive black hole.

VI.
When the doctors first found my cancer they knew it was in my breast and lymph node, but they needed to determine if the cancer had set up camp elsewhere. Stage IV metastatic cancer would be incurable. I would have palliative treatments—small surgeries or procedures, chemotherapy, and radiation—for the rest of my life. The many scans and tests that were used to determine if the cancer had migrated, to gauge the stage of my cancer, and to plan my treatment, were physically almost painless. But emotionally, no matter how well I compartmentalized my terror and deep sadness about my diagnosis in other moments of my day, enduring those scans, tests, and sessions brought everything to the surface. For stretches of time I had to “stay still”, “don’t breathe”, “breath now”, “stay still”, and it was in these moments when I would inevitably start to cry.

To keep my mind occupied I listened to the sounds around me. As a musician, I have a special interest in chance music, text pieces, and graphic scores—where instead of a traditional score of staves and notes the music is written as text instructions to the performer or uses drawings. In stressful settings—performances—I have often listened to the sounds around me and tried to make meaning and sometimes beauty in them. I decided to listen closely during the scans and after each one I would write a text to my close friend and musical partner of a decade, Jennifer, a cellist.

The MRI machine is incredibly loud. The team in the MRI clinic would give me ear plugs, ask what musical genre I wanted to listen to, and then pipe that music through noise cancelling headphones. Initially, I asked for Classical because I thought it would relax me, then, Jazz because I thought it would relax me, then, Country because my husband thought it would relax me. I was trying to find the right combo of music that would be relaxing, enjoyable and fit with the sounds of the machines. It turns out Motown and MRI is the winning combination.

I listened carefully during the scans. I took mental notes so I could remember their soundscapes. Soundscapes that were sometimes ridiculous, sometimes hilarious, and sometimes deeply sad. This focused me, occupied me, reminded me of my friend, and helped me keep the silent tears at bay. Now, I do most of my crying in the shower like a normal person.

Below is an excerpt from the texts I sent Jennifer. The whole piece, so far, has six movements. It is titled This goes on for too long. Note: It started out as a dance suite but I dropped the dancer idea pretty quickly, it didn’t feel right as I added more movements.

MVT 1: MRI

-a Viennese waltz plays in the background while loud alarm/busy signal sounds play. One pitch plays for a while and then both pitch and tempo change randomly. This should go on for too long. The ballerina floats about the stage pretending to be calm and peaceful—taking deep breaths. The ballerina may choose to scream at the end. It is up to them.

MVT 2: the echo cardiogram- a test to make sure her heart is strong enough to handle chemo

For cello, bass flute, plastic wood block? Other people too.
-bass flute plays constant low, soft note. Some minor fluctuations in volume ok
-cello plays constantly medium high harmonic
-wood block? Should sound plasticy and have 3 different pitch possibilities. This performer plays between 1-5 sounds at a time at unpredictable intervals and in various rhythmic patterns
-optional other performer silently weeps

This goes on for too long

MVT 4: Pet Scan
Saxophone (or any woodwind who can play as amazing as Kenny G) plays Let’s Stay Together then Tears in Heaven another instrument plays turbine sounds that block out most of the music. More and more you hear the “jazz” and less turbine (Feel like the cello could really make this whooshing with circular movements, I know you have done it before)

This goes on for too long

VII.
A year ago, I truly was in my action phase. Flying to the other side of the world, taking high speed trains around a country where many things were new for me and learning a new language. Now, I am once again learning a new language: “invasive” “aggressive” “carcinoma” “protein bound” “sedation” “radiofrequency” “neutropenia” “tangent” “supercloud”. Now I have to work for my action phase while my body tries to take me away from it. I have to work against the destructive industriousness of cancer.

A year ago, I was insignificant. In China I felt like an ant. A part of a huge system. Working away at small tasks, adding a small part to the human experience and to the world. I am not sure what kind of ant I was. Some kind of worker-care-taking-ant. Now I have an uncommon cancer and I am absolutely countable and counted. I am statistically significant.

VIII.
In March, 2019 I stepped away from constantly cleaning our house in Montana for prospective buyer showings and took a weeklong trip to China. I went to find a school for my daughter, look for an apartment, and begin to visualize a life there. Much of my few days there I felt isolated. As a way to focus on the positives of our impending move I made a top ten list of experiences to send to family.

The top 5 are below:

            5. An orange tree outside a prospective apartment’s window.
            4. A “welcome to the elevator” escalator safety video.
            3. The many people who patiently and kindly helped me.
            2. A preschool class practicing their taiko drumming.
And finally, my very favorite:
            1. An entire kindergarten class learning to roller skate!  

IX.
During a visit to a possible school for my daughter I passed a Physical Education class. Loud music played as kindergarteners careened around the gym on roller skates. They bumped into each other, they reached for surfaces to give them stability. They collided with the padding their thoughtful teacher had put up on the walls of the room. It was chaos. I wonder: were they thinking “This is happening?!?”

I understand those fledgling roller skaters’ nervous confusion; the sense that the ground was slipping out from under them; from me. Like them I am reaching for stability. I think I can stay upright a little longer. I can have fun. I can reach for something solid. I can grab onto my friends and family. I can clutch the time I have left and I can make meaning. I can drown out, shout down, and momentarily ignore the dreadful and quiet reminder from the back of my mind “this is happening”.

November 2020