Just a bad day, not a bad life

“Today’s the day! Get hyped!” Liv hollered as she shook her friend Kaylene awake. The theme song from Rocky blared through the speaker of her iPhone. It was 6:15 a.m. on April 16, 2018.

She was right. Today was the day. The day Kaylene Murphy had been waiting for since she received her acceptance to run the 2018 Boston Marathon for Dana-Farber back in September. The day she had powered through five surgeries and 46 days in the hospital to get to. And, just three months earlier, she could hardly walk.

The Massachusetts Maritime Academy senior had her school year and training schedule interrupted by an operation that should have taken only a week of recovery, but instead took months. In the hospital, she was largely on her own. Her mom passed away when she was a teenager and her dad was in the process of moving homes so he had little time to visit his ill daughter. Instead of giving up her goal to run the marathon, she used it as a motivation to get better.

Kaylene had run the marathon a year before. But this time, there was much more at stake. There was the $12,000 she raised in donations and the cancer patients she was running for–some who were still fighting their battle and others who had lost their battle. But above all, these 26 miles were about proving herself.

Five Hours Later

The forecasters had predicted some of the worst running conditions in Boston Marathon history and they were right. It was 40 degrees. High gusts of winds and torrential downpours ravaged the course.

She recalled the sunny, 75-degree day of the marathon the year before. She couldn’t believe she had complained about it being too hot.

Everyone had trained so long and so hard for months and now they were all here together, she marveled. All around her were runners–as far as the eye could see.

She stood shoulder-to-shoulder with the other wave-four runners at the starting line in Hopkinton. About 8,500 had registered to run, each of whom had raised thousands of dollars in support of various charities.

Kaylene waited eagerly with her running buddy, Emily. Kaylene met Emily on a Dana-Farber training run a few weeks before and the two decided they would run the marathon together. Emily, a senior at Boston University, was freaking out.

“I’m so nervous. What if my time isn’t good?” Emily asked.

“Emily, when did we ever discuss a time that we needed to finish by?” Kaylene replied, “I thought this was just about finishing. You’re going to be fine.”

Kaylene, who never considered herself to be a “nervous person,” grew irritated with Emily’s anxiety. It began to trigger anxiety within herself.

A tall, skinny man in his sixties wearing a red Adidas jacket stood in a small pressbox about 15 feet above the first row of runners at the starting line.

His voice boomed from the speaker. “You all collectively raised millions of dollars for charity. So I wanted to let you all know that no matter how long it takes for you to finish today, it doesn’t matter.” The marathon-goers went wild.

The rain pelted down like bullets. Kaylene looked at the other wave-four runners, each probably more prepared than she was.

She had only run a maximum of 16 consecutive miles during her training for the marathon. In fact, she hadn’t run a single mile in the three weeks leading up to the race. She didn’t want to overdo it. She figured if she could run 16 consecutive miles, her own adrenaline would carry her through the rest.

She scoffed at the over-preparation of other runners. They were all decked out in rain gear. Many of them had Shaw’s trash bags tied around their sneakers. Others had wrapped duct-tape on their sneakers to prevent water from getting in.

That’s dramatic, she thought. All Kaylene had on for protective gear was her thin, plastic, Dana-Farber poncho. She figured they were all going to get wet regardless and stressing too much about what to wear seemed frivolous.

Bang, the starter’s pistol fired and Kaylene and Emily charged forward in a claustrophobic herd.

Seven Months Earlier 

After two days in a windowless procedure room in Boston Children’s Hospital, Kaylene could not wait to finally get some test results back that proved she wasn’t just “being dramatic,” as her dad suggested.

Even though people didn’t believe her and every earlier test suggested everything was normal, Kaylene knew something was wrong. Her symptoms were certainly not normal. She had been unable to poop for weeks and was throwing up randomly.

She knew this test would change things–for better or worse. She wanted to figure out what was wrong and get it fixed. She had just confirmed her acceptance to run the Boston Marathon for Dana-Farber. She needed to be healthy to begin her training.

Unlike prior tests, this one was intensive. It required lining the entirety of her large and small intestines with electrical wires and firing electrical impulses in different parts of her intestines to see if her muscles responded. The full procedure lasted three days.

Kaylene’s gastroenterologist, Dr. Samuel Nurko studied the monitor next to Kaylene’s bedside with a look of consternation.

“What are you looking at?” Kaylene asked curiously.

“I’m watching the muscles of your intestines contract,” said the balding man in a Spanish accent as he glanced up from the monitor.

“Does it look normal?” Kaylene asked.

No, she thought. Judging by the expression on his face, there was something off–for sure.

“We have to wait for the technician to review it before we make any conclusions,” Nurko said ominously.

Two Months Later

Kaylene stared at a wall-mounted display case with Jiminy Cricket figurines inside of it. She sat anxiously on a blue, medical exam room chair on the fifth floor of the Fegan Building in Boston Children’s Hospital. She figured the test must have proven something was wrong because she was scheduled to meet with her doctor and a surgeon. You don’t meet with a surgeon unless you need surgery, she thought.

A short nurse named Jensine came in, took her vitals, and asked for her health history.

“Put this on and Dr. Nurko and Dr. Buchmiller will be right in,” Jensine smiled and handed her a checkered hospital gown.

Kaylene refused to put it on. Wearing a hospital gown makes her feel sick, and she’s not sick, she thought. She was just having some problems.

Nurko and a middle-aged surgeon, Dr. Terry Buchmiller, came in and both shook Kaylene’s hand. They made some uncomfortably polite small talk about a half marathon Kaylene just ran in Norwell. Then, they delivered the news.

“The test results show that your intestines are not working properly. 50 percent of your large intestine and 10 percent of your small intestine are paralyzed,” Nurko said.

The two doctors speculated that the intestinal paralysis may have been caused by a stomach virus Kaylene had in high school. Instead of attacking the food in her tract, her body attacked her own intestines.

“We think that given your current health and the fact that you’re already maxed out on medicine you can take, you should get surgery to remove the paralyzed parts of your intestines immediately,” said Buchmiller.

The two specialists drew a diagram of normal large and small instestines in black pen on the piece of white, sanitary paper Kaylene sat on and drew another diagram next to it of what Kaylene’s intestines would look like after the surgery. Smaller, but more effective, they said.

Kaylene studied the two diagrams and nodded.

“How long is this going to take? I’m running the Boston Marathon in April,” she said.

Buchmiller, a runner herself, smiled and said, “You’re healthy and in-shape so we estimate a five to seven day stay in the hospital, six weeks of recovery, and 12 weeks to be back to your active self.”

“How soon can you do it?” Kaylene asked.

One Month Later

Children awaiting surgery cried nervously as their parents attempted to console them. There was a sense of unorganized chaos in the pre-op holding area where about 30 other patients waited to be wheeled down the hallway into their respective operating rooms.

Kaylene noticed one other girl who looked to be about her age, around 21-years-old, in a bed in front of her. A group of doctors surrounded her and a middle-aged man and a woman, presumably her parents, stood beside her.

“Are you ready to go in?” one of the doctors asked.

The girl grinned and nodded, “I’m so ready.”

Confident, Kaylene thought. Just like me.

Five minutes later a team of doctors in blue scrubs approached Kaylene and asked her the same question.

“Let’s roll,” she said.

They pushed her bed down a white hallway and through the doorway of a freezing OR. They moved her bed next to a metal surgical table.

“Alright, Kaylene. I’m going to have you hop up on here,” one of the doctors instructed.

She hoisted herself up onto the cold table and a doctor strapped down her arms and legs.

“You’re not going to remember any of this,” a silver-haired anesthesiologist said as he placed a breathing mask on her.

“You’re wrong,” Kaylene said, “I always remember these things. Give me a question.”

“What’s the capital of Ohio?” he asked.

Eight Hours Later

Kaylene woke up confused and groggy.

Beep, Beep, Beep. Heart-rate monitors of other patients chirped. There were fewer beds in the post-op holding area; only about nine other patients. This time, no one was crying.

“Where’s my dad?” Kaylene asked a nurse.

“Right here!” her dad sprung up next to her.

“Where’s the anesthesiologist?” Kaylene asked, “It’s Columbus. Columbus is the capital of Ohio. I remember.”

12 Days Later

Ow, ow, ow.

Kaylene looked up to see a burly police officer performing chest compressions on her.

Who the hell is punching me in the chest? Where the hell am I? Whose floor am I on?

Kaylene gazed at the hardwood floor and saw the thick grey tubing of a vacuum hose lying around her body. She recognized the wall-mounted vacuum cleaner next to her and realized she was in her friend Rebecca’s kitchen. Kaylene remembered that she had been eating breakfast, she must have collapsed. She had just been discharged from the hospital the night before.

The police officer stared down at her with a nervous look on his face. She tried to get up.

“No! Don’t try to get up,” two police officers yelled.

Two 6-feet-tall EMTs lifted her onto a kitchen chair. They took her vitals.

A young, female EMT stared at Kaylene with a sense of urgency, “Everything is low. Your pulse is so weak. You need to go back to the hospital now.”

Something was definitely wrong, but Kaylene wanted her sickness to be behind her. The last thing she wanted was to head back to Children’s.

“I want to call the emergency surgery line first and see what they say,” Kaylene told her.

Rebecca handed Kaylene her phone and she dialed the number Buchmiller had given her if any complications arose.

“Hi, uh, I just passed out,” Kaylene spoke quietly into the phone.

“Why are you calling this number?” an irritated on-call nurse on the other end of the phone asked.

“I just got discharged after surgery and this is the number they gave me to call if I had any problems,” Kaylene explained.

“Oh,” the nurse said in an embarrassed tone, “What’s going on?”

Kaylene rolled her eyes, “I collapsed. Some EMTs are with me. They say my vitals are low and I need to go to the hospital, but I wanted to check with you first.”

“Yeah, you need to come back in,” she determined.

Mile 14

The streets of Wellesley were lined sparsely with the families of runners. Houses along the course played music to motivate the runners.

Kaylene was brimming with excitement. She made it to a pivotal spot in the course. Her sister Abbey was going to run beside her for the next 3 miles.

As a fundraising technique, Kaylene had posted on Facebook that if five people donated to support Dana-Farber in one day, her twin sister would run part of the marathon with her. Kaylene decided to livestream she and Abbey running on Instagram as proof.

Abbey and several of her cousins waited for Kaylene beside the blue and yellow mile marker and screamed her name. Kaylene and Emily stopped and posed for a picture with Abbey and her younger cousins.

Abbey was wearing an oversized, yellow poncho and was already soaked, but she was ready to join Kaylene.

“Did you win?” her adorable, five-year-old cousin Penny asked.

Kaylene laughed and said, “I don’t think so because all of these people are passing me right now.”

Kaylene gave each of her family members a hug and individually thanked them for coming.

Kaylene looked at her twin and said, “Alright. Let’s go Abbey.”

Kaylene pulled her phone out of her sports bra and began an Instagram livestream. Thirty people tuned in to watch the Murphy duo take on the worst conditions in marathon history. A friend of both Abbey and Kaylene teasingly commented on the livestream, “How’s the weather?”

Four Months Earlier

“What kind of music do you want to listen to?” a young nurse with brown hair asked Kaylene.

“Can you put on the Mariah Carey Christmas album?” Kaylene asked.

The nurse laughed and put on the Mariah Carey Christmas Pandora station.

Before any surgery, doctors warn patients of risks, possible side effects, and complications. There is always a risk of infection, but the risk is typically small. Kaylene, someone who always regarded herself as having “the worst luck in the world,” joined the small percentage of patients who developed an infection. So she needed another surgery.

Kaylene curiously looked around the OR in the Interventional Radiology Department at Children’s. An enormous black, video-screen monitor stood in front of her and two monstrous surgical lights hung above her.

Unlike her last surgery, Kaylene would be awake the whole time for this procedure. She wasn’t nervous though. They had given her enough Ativan to relax her and prevent her from moving around. She also had some of the same doctors for another procedure she had a year before when her feeding tube came out. They recognized her because of a video she showed them of her yelling at a freshman as a squad leader at Mass Maritime.

“Oh my God! You were the one who went to Mass Maritime and showed us the video of you yelling at a freshman!” the leading the surgeon declared.

“That was me!” Kaylene said proudly.

In her role as a squad leader at Mass Maritime, Kaylene taught the incoming freshman class how to live regimentally at the school. During the rigorous orientation process designed to break each young cadet down as a person in order to become better team members, Kaylene and other squad leaders screamed in the faces of young freshmen and forced them to do pushups if they were unable to answer basic questions about the school’s regimental programs.

The young nurse held Kaylene’s hand. The leading surgeon explained that they would be injecting her with an anesthetic to numb her abdomen. He pulled out a nearly foot-long needle and slid it into Kaylene’s stomach.

Kaylene’s team waited a few minutes. Another male doctor who Kaylene hadn’t seen before watched the video of Kaylene yelling at the young freshman and laughed.

“Now that you’re all numbed up, we are going to open you up,” the leading surgeon announced.

The nurse holding Kaylene’s hand said, “Ok, you might want to look over here at me now.”

Kaylene stopped looking at the screen that would now show her internal organs and turned to look at the nurse.

The team of doctors and nurses talked her through the whole surgery, which only took about an hour. They pulled out six syringes of cloudy, burnt-orange, infected fluid from her abdomen.

“We got all of it out. We’re gonna stitch it back up,” the leading surgeon said.

Four Days Later 

“Are you sure you want to take this right now?” Professor George Cadwalader asked Kaylene with a sympathetic look. A father himself, he was concerned for his student. He could tell she looked sick. She was pale, skinny, and visibly fatigued.

Kaylene nodded and wrote her name on the answer sheet of her Legal Issues final. She was sure she wanted to take the final, but she knew she was unwell.

She was in excruciating pain. Her stomach throbbed. She was sweating profusely. Worst of all, she was parched. She hadn’t drunk a sip of water all day because she knew she would be unable to urinate and the buildup of fluid would cause her pain. She just needed to be well enough to take her 5 o’clock final and get back to the hospital at a decent time so her re-admittance would be seamless.

She had just been discharged from Children’s the night before because she wanted to take her final. The surgery went well, but she was still unable to keep food down or go the bathroom and no one knew why.

The pain around her incisions was constant and unrelenting. On top of that, she was severely dehydrated. Her lips were cracked at the corners and all she could think about was water.

Kaylene looked down at her watch. It was 5:30 and she had only finished five questions. She didn’t know if she would be able to finish the exam.

6:00, 6:30, 7:00, 7:30

“Time’s up, pencils down,” Cadwalader said.

Kaylene had just barely finished her exam in time. There were only two other students left in the classroom. She didn’t check it over.

Mile 23

The ostentatious brick homes on Beacon Street checkered the sides of the marathon course in Brookline. Kaylene knew she had made it past the worst part of the course–she already conquered heartbreak hill with ease and she was feeling surprisingly good.

“Kaylene! Kaylene! Kaylene!” The drunken screams of several young, off-duty nurses stopped Kaylene in her tracks. She spotted a sign in a cluster of people that read, “Just a bad day, not a bad life #KayleneStrong.”

She recognized three of her nurses from Children’s, Meghan, Erica, and Kristen. They braved the torrential downpours to see their “favorite patient” finally accomplish her goal.

When Kaylene was still hospitalized, they promised her that if she ended up running the marathon, they would be there to motivate her. For Kaylene, their presence was a validation that they didn’t just care about her because she was their patient, but they cared about her as a person.

They each embraced her. Their clothing was soaking wet. The three of them told Kaylene how fat she looked. This was a compliment as they had not yet seen a healthier-looking Kaylene who did not appear as emaciated as she once did in the hospital.

“Your thigh gap is gone!” Erica exclaimed.

Kaylene grinned, looked down and replied, “Yes, it is.”

“You’re a savage!” Kristen told Kaylene.

“Thanks man.” Kaylene replied.

Kaylene decided it was time to start running again. Although she wasn’t sore, she knew every time she stopped, she risked getting cold. She was so close to finishing. She needed to stay on track.

She thanked her nurses and said goodbye. They cheered for her as long as they could see her.

Three Months Earlier

The halls of 10 Northwest began to look way too familiar to Kaylene. All of the nurses knew her by name, other patients on the floor knew her by name, CNAs knew her by name, even the cleaning people knew her by name. The place was becoming a home she never wanted–a prison sentence she never deserved.

She had even spent a lonely Christmas at the hospital. The floor had 46 beds and she was one of eight patients who was forced to spend the holiday in the hospital. Her family came to visit her in the morning and then she was left to hang out with the nurses. She watched The Grinch over and over again.

She felt defeated and trapped. She just wanted to go home, but she couldn’t. She couldn’t keep anything down. She had an IV and a feeding tube to sustain herself.

A few days later, her dad came to visit her.

“Let’s go for a walk,” he said.

Was he joking? She was so weak she could hardly walk. She had undergone five surgeries due to reoccurring infections and had been readmitted to Children’s three times since her initial surgery.

She reluctantly agreed. She stood up from her hospital bed and rolled the dolly with her IV hanging on it next to her.

The pair walked slowly to the elevator and rode it down to the fourth floor. They crossed an enclosed glass pedestrian bridge into the Jimmy Fund Clinic.

“I used to bring your mom here,” Kaylene’s dad told her.

Kaylene lost her mom to metastatic breast cancer when she was 14 years old. Kaylene ran the marathon a year before with her brother in memory of their mother and hoped to run it for her mother again this year, if she wasn’t still hospitalized.

She missed her mother often, but now Kaylene missed her mother more than ever before. A child needs their mom when they’re sick, she thought. Her mom would know what to do. Besides, her dad was so preoccupied with the move out of Kaylene’s childhood home in Randolph, Massachusetts that he had only been able to visit her a few times.

Kaylene and her dad stood in front of a wall with hundreds of blue, metal fish mounted on it with a screen in the middle. They took turns touching a fish. When pressed, the center of the fish would illuminate with a white light and the screen would display the name of a donor on it.

“We are so lucky, Kaylene,” he said.

Kaylene scoffed. What the hell is this man talking about?

She thought she was the unluckiest person in the world. All these surgeries and all this time spent in a hospital and she still couldn’t perform basic functions like eating, drinking, and going to the bathroom.

She often considered her reoccurring bad luck to be a way her mom continued to parent her from heaven. She regarded the challenges in her life as lessons that her mom never got to teach her while she was on earth.

She looked around at the dozens of sick, young kids being infused with chemotherapy in the clinic. Some were in wheelchairs. Then she realized, her father was right. Sure, it was difficult for her to walk, but she could still do it. Some of these kids might not even have a chance to live, never mind walk or run a marathon. She would do it for them too.

Later that day, Kaylene used her GPS watch to create a two mile loop through the hospital–all around the tenth floor, 10NW, 10S, 10E, down to the lobby, around the cafeteria, through an outdoor garden, up the musical piano stairs, through the lobby, and back to the main elevators. She decided that every day, she would make the loop twice.

The loops strengthened her morale. They gave her a reason to wake up each day. Physically, they exhausted her. But mentally, they strengthened her. It gave her a much-needed purpose.

She filled her free time with any physical exercise she could handle. She did lunges, pushups, and even juggled. On her hospital room window she painted the phrase, “Just a bad day, not a bad life.” She deemed the phrase her new motto and painted it backwards so other patients could read it from their own hospital windows.

Two weeks later, Kaylene was able to eat on her own. Her intestines were still partially paralyzed, but she was able to manage her symptoms with medication.

She was discharged from Boston Children’s Hospital for the last time on January 18, 2018, less than three months before the Boston Marathon.

Mile 25

Throughout the race, the rain had been coming down hard and the wind was blowing. But in front of the overpass near the Cask n’ Flagon where Dana-Farber patients and their families cheered on both sides, the clouds opened up and the rain poured down harder than ever before.

It felt like buckets of water were being dumped on her, but she knew she couldn’t possibly be wetter than she already was so what did she have to lose? Oddly enough, it felt like it was supposed to be that way.

Really Mom? Haven’t you done enough already? She glanced up at the sky and thought.

The encouraging cheers from spectators braving the worst conditions in marathon history choked Kaylene up a little bit. These people don’t even know me and they believe in me, she thought.

“Go Dana-Farber!”

“Thank you for running!”

“You’re almost there. You’re gonna make it.”

Kaylene made the turn onto Boylston Street and passed the final yellow and blue mile marker that read, “Mile 26.”

The end was in sight. It seemed so small, but the yellow painted finish line and giant banner labeled, “122nd Boston Marathon” was only about 300 yards in front of her.

The last 300 yards dragged on like the final scene in an inspirational sports movie. It was surreal. The screams of onlookers were deafening. The crowds on each side of the street were eight people deep.

In the hospital, Kaylene often thought, Wow, if I actually do this, it’s going to make one hell of a story.

She crossed the finish line and glanced up at the giant timeclock above her. It read, “4:23:21.”

It was then that Kaylene realized, she was cold.