Segment III – Ditching the Wig: Completing Treatment & Coping with Late Effects

by Rachel Trachten

 1.     Peach Fuzz

My love-hate relationship with the wig is mostly the latter. I hate being bald, I hate having cancer, and I hate needing a wig to look even remotely like my former self. 

But the wig does serve its purpose. It’s top of the line, handmade with natural hair. It makes me look more-or-less like a regular person, albeit a fragile, skinny one. But the wig is heavy and makes my head itch and sweat. I constantly worry that it will get pulled off or slip sideways, revealing my weird alien-like head. In a recurring nightmare, a gust of wind carries all that hair off my head and into the ocean.

When a friend suggests trimming the wig, I take her up on the offer. She cuts off a good four inches, and I feel a rare bit of freedom. I take a certain pleasure in watching all that hair fall to the floor as she snips.

It’s January 1980 and almost time for my very last treatment. The final insult is one more dose of Cytoxan, the nastiest drug of all. It’s so toxic that I’ll spend the whole day at the hospital getting IV fluids to wash the poisons out. At home, one of my parents will awaken me every hour and convince me to drink eight ounces of water to prevent bladder or kidney damage. 

By this time, Zach and I are living in a basement rental on Bank Street in the West Village. He’s taking some time away from Amherst for an internship in City Council President Carol Bellamy’s office. I’m back at NYU while finishing the chemo. We’ve been living together for several months, and he’s encouraging me to come back to our apartment after getting the Cytoxan. “I want to take care of you,” he says. “I’ll wake you every hour all night long.” But I’m not ready for him to see me throwing up. Over his protests, I go home to Brooklyn with my parents.

After that last dose of Cytoxan I’m officially finished with treatment. I experiment with thinking of myself as someone who no longer has cancer, but I’m still bald. I try head scarves and turbans but can’t come up with a better option than the wig.

Gradually, the cold winter days give way to spring. Grass and flowers pop up on the Manhattan streets, and my head sprouts a thin layer of peach fuzz. Zach says it looks adorable.

In our West Village neighborhood, it’s pretty much the norm to look different. Hair might be dyed pink or blue or gelled into spikes. Black leather and tie-dye are both in fashion, and torn fishnet tights are all the rage, especially with Doc Martens.

It’s a May afternoon, and I’m getting ready to leave our apartment for a class at NYU. The weather is unusually warm, and I can already feel sweat gathering where the wig presses against my neck. Just as I’m about to head out, I yank it off my head and toss it onto the sofa. I quickly lock the door behind me, trying not to think about what I’ve just done. With hair that looks more or less like a crew cut, I hit the streets. I’m awkward and self-conscious but love feeling the gentle breeze on my head. I study the faces of people I pass to see if they’re staring.  No one looks twice as I stroll over to the campus.

In my art history class, an acquaintance greets me, and I sit down next to her. “Nice look,” she says. “Who cuts your hair?”

2.     The Party 

To celebrate the end of treatment, my mom wants to throw a party, but my dad resists. He admits that it scares him, that it feels like hubris: don’t flaunt your good fortune or it will be taken away.

But in the end, he changes his mind. As an unstated compromise, we decide to call the celebration a “Good Health” party as opposed to something that would bring the heavens down on me, like “Goodbye Cancer,” or “Hurray, I’m Cured!” One way or another, the party planning begins. My longtime friend Jeffrey, who goes on to become a successful chef, offers to do the catering.

I was 18 when I started treatment; I’m 20 when it ends. Soon I’ll be headed back to Amherst once again. Normal life will resume, won’t it?

The party is in our Brooklyn backyard on a warm summer evening. Several months have passed since my final treatment, and my hair now approximates the Twiggy look. I’ve also managed to gain a few pounds, so I’m no longer a literal 98-pound weakling. I feel festive in a light-blue Marimekko sundress with tiny pink and green swirls.

That night, we celebrate my good fortune, my survival. People from all corners of my life show up with good wishes, gifts, and champagne. I watch Zach as he chats easily with my relatives and childhood friends. No gods strike me down as I mingle with guests and munch hors d’oeuvres. A chance of rain is in the forecast, but not a drop falls.

Still Breathing: Forty years later …

Sometimes people ask about the “gifts” of cancer or what I might have gained from the experience. I bristle at the question, though I can’t deny that illness has made me a more empathic person. And now that I’m well into middle age and my friends have their own medical problems, I’m often able to commiserate in a deep way. Unlike the experience of being surrounded by immortal teens, having peers in their 50s, 60s, and older means that many of us are grappling with health issues. Being healthy is no longer an absolute goal—it’s more a question of figuring out how to cope with whatever disease or disability comes our way. Although I do bring some wisdom to this struggle, the words “cancer” and “gift” don’t belong together in my world. It’s a gift I would have been thrilled to return.

That said, I’ve enjoyed many gifts over the years. Zach and I graduated from Amherst and were married two years later. We both wanted children, but my doctors advised against trying to conceive. Undaunted, we adopted a daughter and then a son. We moved across the country to California in 1998, when Julia and Alex were 10 and 5. I joined a local tennis team and imagined playing year-round for decades to come. Maybe the kids would even take up tennis and we could play family doubles.

Around the time of my final treatment, Doctor Murphy and other experts warned me that some patients start to experience cardiac problems and other “late effects” about 15 years after chemo and radiation. I vaguely took in this doom and gloom, but it all seemed so far away. At the time I thought, “maybe none of that will happen to me.”

But two years after the move, I started to feel the cardiac symptoms doctors had predicted. I found myself quickly out of breath while taking a jog or running for a forehand. My athletic singles game became a gentle doubles game instead.

By the time Alex was a young teen, I’d put my racket away for good. I recall a day we were walking up a steep San Francisco hill together. I had to stop and rest about every five steps. Alex was way ahead but circled back every now and then. “Aah, you’re so slow,” he teased. Then, “Will your heart ever get better?”

It was the first time he’d asked such a direct question about my health. I wavered, but decided he was old enough for the truth.

 “I don’t think so,” I said, “unless someone discovers a great new drug.”

He looked down and jammed his sneaker into the sidewalk. “That sucks.”

“I know hon, it does.”

At the time I was treated, there was no way to know that the doses of radiation and chemo I was given were likely more than was needed to cure my cancer. That particular protocol was used for a relatively short time before doctors discovered that they could treat Hodgkin’s Disease successfully without causing quite so much long-term damage. My future was determined by a particular moment in medical history: Had I been diagnosed a year or two earlier, the treatment wouldn’t have been available and I would likely have died a teenager; if I’d been diagnosed a few years later, I might still be running around a tennis court today.

Somewhere between those extremes, life goes on. Julia lives in New York now, and on a recent visit home, she suggests going to an Oakland A’s game. Zach (who isn’t much of a baseball fan) offers to have dinner waiting when we get home. Julia and I share a love of sports, and the game will be extra special because her beloved Yankees are in town. 

Unfortunately, a heat wave arrives with the Yankees, and we get to the stadium under a blistering afternoon sun. “I’ll drop you off, Mom,” Julia says, just as I’m about to make that request. “Go through the disabled entrance,” she adds, “so you don’t have to stand outside in this heat.” It’s easily 90 degrees and I’m taking baby steps. The air feels thick and heavy. On a good day I can walk for about 30 minutes, but hills, stairs, and heat have all become powerful obstacles.

I follow Julia’s advice about the disabled entrance, something I rarely take advantage of. I can often hide my disability by avoiding situations where it might show, though that’s becoming harder to do.

Julia parks the car and catches up with me inside the stadium. I’m relieved that our seats are in the shade and require minimal stair climbing. It feels great to sit down, and Julia quickly waves at a ballpark vendor selling iced lemonade. I’m breathing easily now, sipping my drink and starting to relax and cool down. I feel a wave of happiness as I take it all in—the noisy crowd, the players jogging onto the field, the sour-sweet lemonade, my daughter beside me.

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 final segment of her three-part piece for Health Story Collaborative.

See parts 1 and 2 here.

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.