Segment II – Clowns, Boots, & Radiation: The Surreal World of College Plus Cancer

by Rachel Trachten

1.     Egg Salad

 After the surgery, I begin a course of outpatient chemotherapy. At 18, I’m often the oldest kid in the clinic.

There’s always plenty of waiting there, and at lunchtime staff bring a cart with sandwiches and drinks. Sometimes volunteer clowns with giant shoes and fake red noses walk through the waiting area, trying to cheer patients up with jokes and balloon animals. Some kids smile, but others are just too sick to care.

It’s early fall, and I’m waiting with my father. On this particular day, the clowns couldn’t have coaxed a smile from me. I haven’t seen Zach in weeks, and I torment myself by imagining him at Amherst being pursued by beautiful, athletic young women, all with long flowing hair. In reality, he’s been struggling to keep up in an advanced physics class while also traveling with the varsity squash team. I wait impatiently as his letters travel from the Amherst post office to my Brooklyn mailbox. Our correspondence sustains me as a I slog through more chemo, scans, and blood tests.

My dad is gloomy too. The New York Times is on strike, which is close to a catastrophe for him. He’s flipping through some other newspaper, sighing and grumbling about inferior journalism.

After a few months of chemo, I’m down to about 100 pounds. Most of my hair has fallen out, first in strands and then in clumps. At some point I just pull the remainder out to get it over with. George Michael comes to the rescue once again, referring me to an expert wig maker. When I look in the mirror, it’s hard to believe that I’d so recently been a normal teen, wearing my long hair in a ponytail and trying to lose five pounds so I’d look more like a dancer.

The lunch cart comes our way, and my dad folds his newspaper. “Hey, they have egg salad today!” he says, as if this is a gourmet treat. “And how about one of these milkshakes?” He means the cans of Ensure, a calorie-rich drink to help patients keep up their weight. 

“I’m not hungry,” I say. When the chemo is injected into my veins, it feels ice cold and has a nasty metallic flavor. I try to disguise the taste by sucking on a handful of peppermints.

“I could go down to the deli,” my dad offers. “How about some chicken soup?”

I know he won’t quit, so I take a sandwich. It’s cut into quarters, and I stare at the four little squares laid out on a paper plate. It looks like an immense amount of food.

My dad has practically finished his sandwich when he notices me barely nibbling on mine. “You need calories,” he urges. “You could eat that little piece in just one bite.” And I could have, in a different life. But on this day I get through just an eighth of a sandwich and call it lunch.

 2.     Sherry & Sandy

Waiting for the hospital elevator, I might have been a visitor, decked out in my natural-hair wig and hoisting a backpack. I am in fact on my way for outpatient chemo, having come directly from a college class downtown at NYU. (I’ve enrolled there as a part-time student with assurances from Amherst that they’ll accept the course credits.) I like the fact that I don’t look like a patient—that I’ll escape that role someday and get back to being a normal college student.

Just as the elevator doors open, I see Sherry’s mom, Sandy, heading towards me. I hold the doors for her, and she smiles gratefully. “You look good, hon,” she says. “You have an appointment today?”

“Chemo,” I reply, and she nods.

My family met Sherry’s months earlier on the outpatient pediatric floor. They’d come to New York from a small town in the midwest seeking help for Sherry’s advanced bone cancer. She’s just 14.

“Sherry’s back in inpatient,” Sandy announces, as the doors close.

“Oh.” I know this is bad news. It’s just a question of how bad. 

“Do you want to come and say hello?” Sandy asks. “I’m sure she’d love to see you.”

“Ok, sure,” I say, dreading the visit.

Sherry is curled up in bed clutching one of those hateful mint-green vomit basins. Tiny wisps of hair stick to her nearly bald head.

“Hey honey, Rachel came to say hello. Can you sit up?” her mom coaxes.

Sherry hardly moves, but she briefly opens her eyes and whispers, “hi.” Then she falls back to sleep.

“She can barely stay awake, poor thing,” Sandy says, pulling the blanket up around her daughter. “How’s school going for you?”

“Um, it’s going well, I’m taking modern art history and Irish fiction,” I say. As if my choice of classes mattered. 

“Well, you stay in school, sweetie. That’s so important.”

“I hope Sherry will get back to school too,” I say.

“Yes, she will,” Sandy says, and I nod as if I believe her.

I try to think of another topic of conversation, but nothing seems right. “Well, I should probably get upstairs to my appointment,” I say, backing out of the room. A few weeks later I ask one of the nurses about Sherry and learn that she died a few days after my visit.

3.     A Social Worker and a College Prof

My first big setback comes just a few months after starting the chemo. It’s the fall of 1978 and I’m in the student lounge at NYU. In the bathroom, I notice that my urine is an odd beige color. I know this probably means trouble.

I call Dr. Murphy from a pay phone. It’s a struggle to hear her over the chatter of students hanging out and drinking coffee between classes. But I’m pretty sure she’s telling me to come right to the hospital. She suspects that I have hepatitis and, as usual, she’s right; I’m soon an inpatient again.

The days pass in a blur. Sleep, blood tests, nurses coming and going.

One day a woman comes into my room and introduces herself as Lynn, a hospital social worker. Fine with me, no needles involved. After going through the basics, I find myself pouring my heart out, telling Lynn all about Zach and his recent letter saying that he loves me.

Zach and I have been keeping up a steady stream of cards and letters. I send news of blood and platelet counts along with worries over exams, complaints about the subways, and descriptions of foods I’m eating to keep my weight up. In one letter, I tell him that I’d discovered a new node in my neck and felt paralyzed with panic, assuming it meant the Hodgkin’s was getting worse. I’d gone right to the hospital, where Dr. Murphy assured me the node was harmless. Zach sends newsy notes about life at Amherst, describing his struggles with physics problem sets, his wins and losses on the squash court, and a budding romance between two of our friends.

What I’m not aware of at the time is how much Zach is suffering. His letters are mostly upbeat, but years later he tells me that he was constantly worried about my health. He describes going to frat parties almost every night, trying to numb himself by drinking beer, and dancing until he’s exhausted enough to sleep.

He’s also falling behind in his course work and asks his Russian literature professor for an extension on a paper. Stanley Rabinowitz is a renowned scholar whose lectures are enormously popular with students. He takes the time to ask Zach about his life, and Zach tells him about my illness. The professor gives Zach some advice that sounds obvious but has a profound effect. “Try not to worry about things before they happen” is the essence of his wisdom, and Zach takes it to heart and finds healthier ways to cope.

After a few weeks, I recover and leave the hospital, glad to have met Lynn. As an outpatient again, I pop into her office for a long talk or a quick catch-up every chance I get.

4.     Stick It!

I barely say a word as the curly-haired nurse sticks her needles into my tiny veins over and over, trying to get the required tubes of blood.

I always try to be friendly to the nurses, and most of them are friendly right back. Pediatric nurses are accustomed to screaming babies and thrashing toddlers, but I’m someone who can be reasoned with, even talked to as a peer of sorts.

The curly-haired nurse barely acknowledges me. She offers no sympathetic smile, just gets right down to business with her rubber gloves and syringe. She doesn’t even suggest warming my arm up to make the veins bigger. Then, she becomes increasingly annoyed as my delicate veins roll away from her probing needles. Black-and-blue marks pop up wherever those needles pierce my skin.

My response is to burst into tears as soon as she leaves the room.

“Where’s your fight?” I want to ask my teenage self. “Don’t you hate her?” 

What if I’d pulled my arm away and simply refused? What if I’d marched out of that hospital for good?

5.     New Boots

Dr. Murphy is petite and gray-haired, looking more like a midwestern grandma than one of the country’s leading pediatric oncologists. I eventually learn that she was one of only two women in her med school class back in 1944. At Sloan Kettering she collaborates with another female oncologist, Dr. Charlotte Tan, who looks to me like a Chinese grandma. I’m fascinated by the way Dr. Murphy refers to her colleague simply as “Tan,” as in, “I’ll speak to Tan about that.”

When I become Dr. Murphy’s patient, I’m 18 and she’s about 60. Just as I’m starting treatment, I’m having terrible insomnia. Won’t she please, please give me some sleeping pills? She listens carefully but won’t do it. “If you can’t sleep, just rest,” she tells me. I protest, but she won’t budge. 

As the months pass, we get to know one another. I come to every appointment with a written list of questions, and she always tries to answer each one. She’s a pediatrician but treats me like an adult.

One day in clinic I show her an itchy rash on both of my legs, from my ankles up to my knees.

 The rash is getting worse every day, and I’m starting to panic. She studies my legs, and I ask if I should see a dermatologist.

 “How long have you had this?” she asks.

 “Just a few days, but it’s getting worse.”

She looks over at the leather boots I’ve left in the corner of the room. Stylish brown boots, very chic.

“Did you just buy these?” she asks. She picks one up, touches the stiff leather.

“Yes,” I say, surprised at her interest in my footwear.

 “They must be awfully tight around your legs,” she says, and then I get it.

She picks up her prescription pad, scrawls a few words and hands it to me. “Rx,” it says. “New boots!”

6.     Zapped 

As I’m going through it, the radiation doesn’t seem like a big deal. It happens at the halfway mark of the treatment, with three cycles of chemo behind me and three to go. I show up at the hospital Monday through Friday for three weeks running. The visits are quick: I lie on a table under a futuristic-looking machine and the radiation is beamed through me. My chest and back have been permanently tattooed with tiny blue-grey dots to guide the beam.

Some patients might have questioned the long-term safety of radiation treatment, but I accept it as something I need in order to get well. I’m relieved to find that it’s quick and painless, practically a vacation compared to the nausea and needles that come with chemo. Sometimes I even go out for lunch or to the movies afterwards.

Little did I know that what felt like a respite at the time would have such a powerful effect on my future health. Many years later, a renowned cardiologist at Stanford will tell me, “You got zapped.”

7.    How’s it Going? 

Happy day! Now that I’m halfway through the chemo, Dr. Murphy has given me the okay to return to Amherst. I’ve spent months lobbying for this, reassuring her that I’ll really, truly take good care of myself.

“You college kids never know when you’re tired,” she tells me. But my blood counts improve and she works out the medical logistics with a cancer specialist near Amherst. I’m all set to get back to college life. I’ll take a half-load of classes, live on campus, and continue chemo treatments nearby.

But once I arrive, I feel completely out of place. I’m surrounded by healthy young adults, the sort who wake up early to jog or swim laps before breakfast. It’s February, and most students wear nothing warmer than a down vest, while I’m bundled into sweaters and a bulky jacket. At night I’m exhausted but too anxious to sleep. Zach tries his best to help, but between science labs and travel to squash tournaments, his schedule is packed. Afraid to burden him, I conceal how stressed and alienated I feel.

A few close friends know what I’m going through, but what should I reveal to casual acquaintances? When I opt for the truth, some people are effusively sympathetic and tell me I’m “so brave” or look at me with pity. Others just change the topic. I hate all of these responses and decide to say less. Whenever someone asks, “How’s it going?” (a common refrain on campus), I smile and say, “Good!” (the expected response).

Then, the wig. To take a shower, most students simply walk to the dorm bathroom wearing a robe. I can manage this, but what about the wig? Should I walk down the hall wig-less with a towel around my head? Or should I wear the wig, then hang it on a towel hook? What if someone sees it hanging there? I finally decide to leave the wig in my room. Hoping I won’t run into anyone on the way, I scurry to the bathroom clutching a towel around my bald head. I feel nothing like a normal college student.

 8.     Sisterhood

Women take over the men’s bathroom at the Holly Near concert that February night. It’s 1979, and I’m with Amy, my best friend at Amherst. She and I had hit it off as soon as we’d met, and I love her toughness and honesty. Naturally, Amy joins right in when the women waiting in line decide that the men’s room is up for grabs too.

Amy and I are enthralled by the music and the proximity to so many like-minded women. We both identify as feminists at a college that has only recently gone co-ed. After visiting the Women’s Center during one of my first days at school, I’m surprised by the reactions I get from other female students: “Why would you go there?” and “Don’t you know they’re all man-hating lesbians?”

That night Holly Near and Meg Christian sing about sisterhood and love and political power. I’m eager to escape into the music and forget that I have cancer.

Amy and I can usually talk about anything, but she consistently avoids the topic of my illness. Leaving the concert, she says, “Let’s do a radio show about women’s music.”

A friend at the college radio station can help with the technical side. All we have to do, Amy says, is write a script, choose the music, and tape the show. I have no idea how we’ll manage this, but Amy is confident.

Two weeks later, we’re ready to record. It’s evening, and snow falls steadily as we enter the studio. I do my best to stay alert, but I’m exhausted from the chemo. Amy is focused on the radio show, and I feel hurt and abandoned as she acts like I’m just fine. Months later, she confides, “I felt so close to you that I couldn’t accept how sick you really were.”

 9.     A Small Rash

About two months into the semester, I develop a small rash on my left side. It doesn’t look like much at first, but it persists, reddens, forms small crusts. I show it to my local oncologist, who sighs and says I have shingles, a nerve inflammation that’s common when your immune system is weakened by chemo. He prescribes codeine in case the rash becomes painful.

I fill the prescription but assume I won’t need anything more than Tylenol.

Dr. Murphy suggests I return to New York, but I resist. She reluctantly agrees to let me track how quickly the rash is spreading. Luckily, Zach is not at all squeamish. In fact, the experience of my illness has convinced him to go pre-med, a decision that makes perfect sense given his interest in both science and the humanities. With help from another pre-med friend, he outlines the contours of the rash with a marker to track its progression.

By the next day, I’m popping codeine every four hours. And a day after that, the red spots swell and spread into ugly blisters. The rash has more than doubled in size, and codeine isn’t enough to ease the pain. My mid-section looks like some kind of ghoulish topographical map.

Zach calls Dr. Murphy and describes the blisters and my pain level. “Put her on a plane today,” she says, and my semester is over. I fly back to New York dazed and sleepy from painkillers; my parents practically carry me off the plane. We go directly to the hospital, where I’m quickly admitted. Years later, my mother tells me she nearly blacked out when she saw those blisters.

 10.  Girlfriends

I’m finally well enough to leave the hospital. I’ve been an inpatient for nearly two months, battling shingles, meningitis, and other complications from the chemo. I later learn that my survival was uncertain, but at the time I’m too sick to even wonder about it. 

During these months, my contact with the outside world is limited to staff and visitors. Once I start feeling better, I take slow walks round and round the nurse’s station. Two close friends, Allison and Lisa, are on spring break from college and come to see me. If they’re shocked by how frail and bald I am, they never let on. They bring Italian bakery cookies and gently rub my fuzzy head. Many years later, Allison tells me that when she first learned about my diagnosis, her mother told her not to look it up in the encyclopedia, but she did anyway.

Allison and I became nearly inseparable starting in sixth grade, and Lisa made it a threesome when we got to junior high. With so much shared history, the three of us can relax and giggle even in a cancer hospital. When the nurses let them bring me out to the deck in a wheelchair, I can almost convince myself we’re just out on the town.

The day I’m discharged from the hospital, I walk along the Manhattan sidewalk like a country bumpkin gaping at big city life. My dad drives to Brooklyn and stops at a local market, but I stay in the car, watching the scene around me as if it’s a movie. People come and go with bags of groceries, small children in tow. I’m feeling sleepy and almost drift off for a nap, but the world pulls at me. I find myself thinking about Lisa and Allison and wondering when they’ll come home for the summer. I imagine going out to Sunday brunch and catching up on their lives and dating adventures. Months later, Zach and I rent a basement apartment in Greenwich Village. Before we move in, Lisa and Allison show up with buckets and cleaning supplies and help us scrub every inch of that apartment.

Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the second segment of her three-part piece for Health Story Collaborative.

See Part 1 here; see part 3 here.

by Rachel Trachten 

Section I- A Fateful Haircut: Diagnosis & Surgery

 1.    Every Last Hair

 Oddly enough, it’s a guru of long hair who leads me to baldness.

 It’s 1978 and I’m 18. My dad’s girlfriend, Susan, is a regular at George Michael’s Madison Avenue salon, where they specialize in long hair. She and George Michael are old friends, and Susan has brought me here as a special treat. We’ve had a delicious afternoon of pampering and long-hair luxury, complete with fragrant orange and pink potions for washing and conditioning.

 Once my hair is clean and silky, I stand in front of the mirror for a trim. Just a trim, because long hair is the goal.

 But as I stand there, dark spots appear in front of my eyes and the world starts to close in. I go down, and next thing I know I’m on a black leather sofa in George Michael’s office.

Before immigrating to the US and becoming a hair tycoon, George Michael had been a medical doctor in Russia. When Susan tells him how I’m still exhausted from the mono I had months earlier, he urges her to push for more testing. Soon after that hair salon episode, I have a biopsy of a swollen gland in my neck, revealing that I have Hodgkin’s Disease, a cancer of the lymphatic system.

As it turns out, even oncologists like to get their hair done. Cancer specialist Dr. Lois Murphy is also a longtime client of George Michael. He makes the call that gets me on to her patient list, and pretty soon the chemo she gives me will knock out every last hair on my head.

2.    Back on the Court 

Just before I have that fateful biopsy, the surgeon tries to calm my fears: “I hear you’re a tennis player,” he says. “Don’t worry, you’ll be back on the court in no time.”

“Could I play by the weekend?” I ask.

“Doubles should be fine,” he says.

Liar.

I need the biopsy because that big swollen gland in my neck just won’t go away. I’ve been exhausted for weeks, maybe months, but I’m 18 and keep pushing through. I’ve never been seriously ill, and how could I be? I’m an athlete with big plans to join my college tennis team. 

When I get the biopsy results, I’m stunned but strangely calm. I take it all in, including my parents’ assertion that this illness is serious, but can be treated. Decades later, I can’t help but wonder how a less compliant teen would have handled it all, someone more like my sister, Jessica. “Cancer!?” she would roar. “No fucking way! I’m a jock. And how could I play doubles after that lying surgeon slashed my neck open?!” She would slam doors and throw dishes, relishing the crash as they hit the kitchen floor.

 3.    The Bracelet

The plastic hospital bracelet feels like a declaration of ownership: you belong to Sloan Kettering Memorial Cancer Center; get used to it. But once the bracelet is secured on my wrist, I’m set free until evening. I head out with my parents (they’re divorced, but friendly) for a few hours in Manhattan before returning to face the prospect of the next day’s surgery. 

At this point, I’ve finished just one semester at Amherst College. I’d missed what should have been my first semester thanks to the mono. But now I’m supposed to be back on track, feeling fine and choosing courses for the coming term. Instead, doctors are going to remove my spleen, an organ I didn’t even know I had. For good measure, they’ll take out my appendix too and probe my insides for more evidence of cancer.

It’s a warm July day, and we end up on the sprawling steps in front of the Metropolitan Museum of Art. The area is packed with tourists and New Yorkers enjoying the sunshine, eating ice cream, watching street performers. As I stand a few feet from my parents, someone taps my shoulder.

“Rachel, great to see you!” It’s Andrea, a casual friend from Amherst, smiling and looking perky in a yellow sundress embroidered with tiny white daisies. “How’s your summer going?” She looks tanned and healthy; she’s practically glowing. 

I pull on my sleeve to be sure the hospital bracelet doesn’t show. Should I state the grim truth? “Things couldn’t be worse. I have cancer.”

I don’t say this. I stare at a thread hanging from one of those cute daisies on her dress and imagine giving it a tug. How far would it unravel?

“The summer’s been good,” I say with a forced smile. “But I’ve got to go; some people are waiting for me.”

 4.    Broken

That evening my parents are with me in the hospital, and at some point I have a few minutes alone with my dad. He looks as broken as I feel.

We sit in my hospital room as the sun goes down. I don’t recall exactly what I say, but I must have used the word “despair.” And he kind-of snaps to attention and shakes his head like he means it. “No,” he says. “Now is not the time to despair; it’s the time to fight.”

I give him a teenage “oh, come on,” look, but he insists. “If there’s ever a time for despair, I’ll be right there with you,” he says, “but this isn’t the time.”

His words glue me back together, at least in that moment. He offers up a reminder that he’ll be there no matter what and that there’s still hope. At 18 I already have a strong belief in working hard for what I want—it’s how I got into Amherst and how I win tennis matches. My misery lifts slightly as I take in his words and start to focus on what’s ahead.

 5.    Good Books

Night falls, and the Manhattan skyline glitters outside my hospital room window. My parents leave, and I stare miserably at the bright lights and skyscrapers. Then I decide to take the plunge and call Zach, the guy I’ve fallen hard for at Amherst.

When I first saw Zach, he was in our dorm library sprawled on his back on an old sofa. He looked irresistible in a white tracksuit with thin black stripes down the sides. He was reading from The Complete Works of William Shakespeare, a weighty hardcover edition that he held overhead like a paperback. I asked around and learned he was a varsity squash player, a sport I vaguely associated with high-end prep schools. It certainly wasn’t on anyone’s radar at my public high school in Brooklyn.

I also heard that Zach had a bit of a reputation as a playboy, but I wasn’t scared off. A few weeks after we met, he asked me to dance at a Valentine’s eve party and the chemistry between us was undeniable. When we sat in the same lecture hall or I spotted that white tracksuit across the campus quad, I felt his presence like an electric charge. One night we took a midnight walk around campus and kissed by moonlight. I soon learned that Zach had grown up in Northern California, where his dad was a physicist and his mom worked in public television. His West Coast childhood was as exotic to me as my New York roots were to him. 

When the semester ended, Zach and I parted for summer with the quasi-commitment “try not to fall in love with anyone else.” I headed home to Brooklyn, and he left for California, then back to his mom’s current home near Boston.

Now it’s July, and Zach has no clue that I’ve just been diagnosed with cancer and will have surgery first thing in the morning. We’d been writing occasional letters that summer, and I’d mentioned that I was having a biopsy. But neither of us took it too seriously, assuming it was just something I was doing to appease my parents. 

I set off in search of a pay phone, clumsily pushing my IV pole down a hallway decorated with cheerful museum posters. I’m on a pediatric floor and most of the children I see are bald. I try not to think about what that means. Some of these kids also have amputated limbs and are getting around using crutches or wheelchairs. As I slowly make my way toward the phones, doctors and nurses in bright scrubs bustle past, miniature teddy bears clipped to their stethoscopes.

I’m trembling as I dial Zach’s number and try to explain the train wreck my life has become. “Hodgkin’s Disease,” I say. “It’s a cancer of the lymph nodes, but they say it’s curable. The surgery is tomorrow.” Silence hangs between us.

“So, um, what else have you been doing?” he finally says. “Have you read any good books this summer?”

Good books?! We end the call soon after that, and I sob against the cold hospital wall. Why would he want a girlfriend with cancer?

 6.    Love Medicine

I’m stuck in the hospital for two weeks after the surgery, and Nancy is my main nurse on the day shift. She’s good at her job, but mostly it’s her love life that helps me through those depressing days. 

Post-surgery, my abdomen is covered by a large bandage with stitches underneath. I have a tube in my nose, an IV needle in my arm, and pain meds every few hours. The saga of Nancy and her boyfriend offers something to focus on other than my own misery. 

Nancy lives in New York, but she’s in love with a guy in Boston. They’ve been in a long-distance relationship for almost two years, and, at 30, she’s more than ready to get married. But Boston won’t commit. He’s content with the status quo, where they see each other every few weekends. Nancy is starting to doubt his love. Meanwhile, there’s a New York guy who adores her, but she’s only lukewarm on him.

It’s my daily bit of fun to hear Nancy’s latest drama. And she’s eager to hear my boyfriend blues too instead of just taking my temperature and blood pressure. When Zach announces that he’s coming to visit, Nancy and I have a long conversation about which nightgown I should wear. In the moment, it’s an important choice, and she turns out to be good medicine.

 7.    Nurse or Supermodel?

My mother stays with me in the hospital after the surgery. There’s a cot for her next to my bed, though I can’t imagine she got much sleep.

 I’m aware that my mom has terrible fears about hospitals. But I’m a typical self-centered teen and don’t give it much thought.

I do know that my mom had tried to visit a friend in the hospital but had to leave almost immediately because she felt faint. Perhaps she never even made it to her friend’s room. And now Sloan Kettering is her second home.

 Somehow, she copes.

One post-surgery night, I awaken with sharp abdominal pain. Please, let it be time for more painkillers. No, it’s too soon. My mother goes in search of the night nurse, who turns out to be a glamorous blond. I can’t help but admire her chic angled haircut and the tiny diamond studs in her ears. But something about her cool elegance makes me think she’ll tell me to tough it out until I’m due for pain meds.

My mother explains what’s been happening, and the nurse listens closely. In a soft voice, she asks me to show her exactly where I’m hurting. Then she gently rearranges my body to help ease the pain. She gets extra pillows, putting them in just the right places under my legs. The nurse promises more meds soon, but I’m already feeling better. People can surprise you.

 8.    My Own Prince Charming

After telling Zach about my diagnosis in what feels like a disastrous phone call, I try to resign myself to the end of our relationship.

In an attempt to protect him, well-meaning friends and relatives also suggest that he let our romance end. Recovering from Hodgkin’s Disease is far from a given in 1978. In fact, the protocol I’m getting is barely beyond the experimental stage and is being tested only at Sloan Kettering and Stanford Medical Center. Dr. Murphy tells my parents that this combination of drugs and radiation is beginning to show good results, with cure rates as high as 75 percent. I’m unaware of these statistics, but I do know that my disease has progressed to stage IV, having spread to several parts of my body.

Zach ignores the advice to stay away. Instead, he calls my father and arranges a visit. About a week after my surgery, Zach gets on the Eastern Airlines Shuttle and into a cab and appears at the hospital. I’m so excited and anxious about his visit that I exhaust myself before he gets there. I’m sound asleep, probably snoring, when he arrives.

I open my eyes and he’s standing there in khaki pants and a striped button-down shirt, his hair nearly blonde from the summer sun. I forget about my pain and tubes and stitches. Whatever Sleeping Beauty felt when she awoke to find Prince Charming beside her, I’m sure it was nothing compared to my joy in that moment.

For a while, we make small talk about Zach’s flight from Boston. Then we cover his recent visit to California, where his father lives. The issue of my illness feels too dangerous to touch. Finally, we tiptoe up to it. “I won’t be back at school in the fall, with all this going on,” I say tearfully, motioning toward my body, the IV pole, the room. “I know,” he says. He sits by my bed and holds my hand, and, after a little while, I doze off.

 Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the first segment of her three-part piece for Health Story Collaborative.

See Part 2 here: see part 3 here.

This is a story about the value of writing and how it sustained me throughout my treatment for an aggressive cancer.

In 2016, my annual physical exam detected low white blood cell counts. My doctor referred me to a hematologist who recommended a bone marrow biopsy.  The biopsy discovered acute myeloid leukemia and triggered immediate hospitalization. In forty-eight hours, I went from feeling fine to intensive treatment for a lethal disease.

The same day I began chemotherapy my wife was admitted to my hospital with a fractured femur. After preparing for and recovering from surgery, she transferred to a transitional care unit for a month-long rehabilitation.  Meanwhile, I had a five-week hospital stay to treat infections arising from chemotherapy-induced immunosuppression.

I proceeded through induction chemotherapy, consolidation chemotherapy, and a successful cord blood transplant. I’m now over three years out from my initial diagnosis and final treatment, and I remain cancer-free.

While doctors treated my body, several strategies sustained my identity. Although I was retiring from my role as a professional sociologist, my identity as a writer making sense of my social and personal worlds was crucial throughout my odyssey. My identity-sustaining strategies included mindfulness practices, physical activity, a pro-active attitude to my illness, unrelenting humor, and a secular worldview. But my most valuable strategy was writing my story.

It started simply enough during my first week of hospitalization when I realized we needed a way to keep folks informed about our situation. People suggested a Caring Bridge site with updates for all to see.  However, announcing to the world that our home would be unoccupied for a month or more seemed unwise.

Instead, I sent an email to neighbors asking them to collect our mail and keep an eye on our house. I quickly realized that emails were an efficient way to keep everyone informed. I eventually sent over sixty reports to more than fifty recipients. These missives combined medical updates and progress reports with reflections on being a cancer patient and the often mysterious and frightening world of cancer care.

These reports were composed for a known audience. I was highly conscious that I was writing for others and included some humor to lighten the impact of my otherwise dire news. One of the great benefits of writing for others was the supportive feedback I received from my correspondents.

It eventually dawned on me that these cumulative reports had become a kind of cancer memoir. On a more profound level, it also occurred to me that I was writing for and to myself.

Each day in the hospital brought a new, dizzying array of personnel, medications, tests, scans, side-effects, cautions, and complications. While I received excellent care, it was an overwhelming initiation into the world of cancer treatment that left me feeling highly vulnerable and utterly dependent on the care of strangers.

The best way I could make sense of it was to write about it. Writing became my therapy. It allowed me to take the chaotic threads of my daily experience and weave them into a coherent narrative of what was happening to me.

My writing translated swirling emotions and unpredictable circumstances into a narrative that tamed my fears and preserved my identity.  At a time when there wasn’t much I could control, telling my story made me the author of my own life. In short, writing became a psychic survival mechanism.

Late in the process, I decided to share my story more broadly.  With the addition of a preface on lessons learned and an epilogue on identity changes, my memoir appeared from Written Dreams Publishing in December 2018.

As I was preparing my book for publication, I read the Canadian sociologist Arthur Frank’s book on The Wounded Storyteller. His work retrospectively overlaid a whole new level of insight into my narrative and how patients can retain their personhood in the face of life-threatening illness and technically driven treatment.

Frank claims that storytelling by ill persons can play a crucial role in shifting them from a passive to an active role in their illness. While doctors may ensure our survival, telling our story can maintain our identity. Put differently, while people surrender their bodies to medicine, they retain their self by telling their story. Storytelling thereby rescues patients from the medical colonization that would otherwise reduce them to passive patients in an asymmetrical power relationship.

Frank describes three types of stories that emerge out of illness. The first, restitution narratives, say “I was healthy, then I was sick, now I am (becoming) healthy again.” Here, the patient’s body is analogous to a broken-down car, the physician is an able mechanic, and the patient is a passive bystander drinking bad coffee in the shop’s waiting room.

Patients eventually get better in a restitution story, but it remains one in which an active physician restores the sick body of a passive self. Restitution stories are the medically and culturally approved way we think about illness: when something is broken, we get it fixed and move on. They nonetheless leave something important out of the picture as the person is reduced to a body needing repairs and the self is sidelined by the doctor’s expertise.

The coherence of restitution stories is lacking in the second type of narrative: chaos stories. Without narrative order, coherent sequence, or discernible causality, they carry no expectation of recovery or illusion of control. These stories are threatening to the patient, but also to physicians because they are an implicit critique of their limited ability to fix things.

By their nature, chaos stories cannot be told as much as simply experienced by ill persons as overwhelming. They can overtake any sense of a coherent self and an orderly world for a patient. Despite the patient’s sense of helplessness and the physician’s dislike for such stories, they must be acknowledged before the patient can reclaim their personhood.

The final type, quest stories, are the only ones in which the teller assumes center stage. Here, the patient accepts their illness and uses it to try to gain insight from their experience. Such stories involve a recursive journey; the patient takes a trip in order to discover what kind of trip it is, and then finds meaning that can be passed on to others.

There is heroism in quest stories; it isn’t the physician vanquishing disease but rather the patient persevering through suffering. As people become wounded storytellers, they derive meaning from telling their illness. Through quest stories, people become not just survivors but witnesses with a responsibility to share their stories.

As I digested Frank’s ideas, I realized I had become a wounded storyteller and that all three types of storytelling had appeared in my own accounts.

My odyssey began as a chaos story. Upon my hospital admission, I had no clear understanding or sense of control over what was happening to me or my spouse. But wait, there’s more: three weeks into our mutual incapacitation, a nasty storm brought down two sixty-foot trees onto the roof, deck, and gutters of our unoccupied home. It just seemed like anything could (and did) happen. My fractured impressions nicely fit Frank’s description of chaos stories as proceeding through multiple, destabilizing events linked only by the phrase “and then” repeated over and over.

Shortly thereafter, my reports changed as I learned more about my disease, my short-term treatment, and the long-term options for further treatment. In effect, my doctors were telling me a restitution story about how I had been healthy, then became sick, and now will get better. While my doctors and treatment provided the data points for this story, I played an active role by narrating it. But in order to convey my experience to others, I had to comprehend it myself. My readers became the prod for my own self-understanding, as writing-for-others seamlessly became therapy-for-me and a means of maintaining a coherent self

The next turn in my narrative occurred after my day 180 consultation. I was six months out from my transplant and had tapered off my anti-rejection medication and its unwelcome side-effects. That turning point sparked a qualitative shift in my mindset. For the first time, I was able to accept that I had weathered my treatments, that they had been successful, and that I was actually better. I then described my mood as serene euphoria, but it came with a powerful urge to reach out and share my story.

I now see this period as the beginning of a quest story. As I have reached out through my memoir, support groups, peer counseling, speaking engagements, writing workshops, fund-raising events, and survivorship conferences, I have met the responsibility to share my story and forge new connections with other members of the cancer community.

My most meaningful, current activity is being a peer volunteer meeting with current transplant patients. Our common bond of transplant fosters profoundly personal conversations between complete strangers as we share our stories. In so doing, we broaden the circle of people who become authors of their own lives and join the community of wounded storytellers.

Steve Buechler is a retired sociologist. His memoir is titled How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes). More information on his book and activities is at www.stevebuechlerauthor.com. You can also find a brief interview with Steve at https://www.youtube.com/watch?v=IUfYUImyhJU.