Perseverance: How Young People Turn Fear into Hope-And How They Can Teach Us to Do the Same / Edition 1

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Overview

Can you imagine being in high school or college and suddenly learning you have cancer?  You thought you had a lifetime ahead of you and the whole world at your feet, but suddenly you're told...maybe not.  How would you cope?

That's the question each of the people in this book had to answer.  Each individual tells his or her amazing story, in an honest, first-person perspective that provides a depth you would never see otherwise.  Inside, you'll meet Zac York, who tells of climbing Mount Whitney—on crutches—after battling brain cancer.  You'll meet Jessica Myers, who had to cope with her boyfriend's callous reaction as she struggled with thyroid cancer.  And you'll meet Rob Dooley, who fought brain cancer and was left with major cognitive deficits—including short-term memory loss—but never let that get in his way of obtaining a college diploma and entering graduate school.

You'll also get to know and come to love seventeen others, who tell their captivating stories in their own words.  It's all here—struggles, triumphs, friendships, love, breakups, relapses. Twenty unique and fascinating stories, with one common theme—childhood cancer.   They'll make you smile, make you cry, and fill you with hope.

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Editorial Reviews

From the Publisher
“Incredibly life affirming and inspirational.  I loved it!”

—Peter Walsh, New York Times bestselling author of It’s All Too Much! and Enough Already, as seen on Oprah

“Will move you to tears, teach you to appreciate, and inspire you to persevere.”

 —Tal Ben-Shahar, New York Times bestselling author of Happier and The Pursuit of Perfect

“Puts a very human face on courage and strength. Carolyn and the young people she has worked with are an inspiration to us all.”

—Gay Hendricks, New York Times bestselling author of The Big Leap and Conscious Living, as seen on Oprah

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Product Details

  • ISBN-13: 9780765317797
  • Publisher: Doherty, Tom Associates, LLC
  • Publication date: 10/12/2010
  • Edition description: First Edition
  • Edition number: 1
  • Pages: 384
  • Sales rank: 1,405,448
  • Product dimensions: 6.10 (w) x 9.10 (h) x 1.20 (d)

Meet the Author

Eight years ago, CAROLYN RUBENSTEIN founded Carolyn’s Compassionate Children (CCC), a 501(c)(3) non-profit organization that provides emotional and financial resources to childhood cancer survivors. Over the past five years, CCC has awarded 80 college scholarships to childhood cancer survivors. 

As an undergraduate at Duke, Carolyn majored in psychology and conducted research examining quality of life for adolescent survivors of childhood cancer. A Phi Beta Kappa and summa cum laude graduate, Carolyn will begin a doctorate program in clinical psychology at Harvard this fall.   She will continue to expand her child advocacy work and make more resources available to childhood cancer survivors. 

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Read an Excerpt

CHAPTER 1

Emily Corwin

Laughter gives us distance. It allows us to step back from an event, deal with it, and then move on.

—BOB NEWHART

On June 11, 2005, I had my first phone interview for this book. Before I dialed,

I had that nervous feeling in the pit of my stomach. I had prepared questions, but felt as if I were invading someone else’s life. I asked myself repeatedly, "What gave me the right to ask these questions?"

Then I picked up the phone and heard Emily Corwin’s voice. Her words ran fast as she spoke with great excitement and energy. She disarmed me with confidence and humor, which encouraged questions. Emily and her mom, Pat, have been my greatest supporters since day one of this incredible book journey.

Throughout high school, Emily was involved in Spirit of Sound, a women’s singing and dancing group. She played percussion in her school’s band and was involved in school plays. But singing is definitely her favorite hobby. She says, "I love to sing. I never stop singing. When I sat for hours in waiting rooms, I would start singing if I became bored. I would be goofy and funny, but sing. My favorite music is anything acoustic. I love hearing live raw music. My least favorite is hard rock."

Emily’s creative energy and passion for life keep her grounded and connected to her individual self. She doesn’t want to fit a mold and defines her own path with every choice she makes. In school, she never belonged to a clique. Her friends are all very different from one another.

Humor and laughter help Emily to overpower negative thinking. She focuses on what she can do and has faith in herself to overcome adversity. Growing up, Emily attended church regularly, as well as Sunday school. She credits her faith for all the good that occurred during her illness—never the bad. She believes religion creates the basis for how she lives her life. For Emily, every experience has a purpose. The purpose of her cancer experience: to help others.

Emily was diagnosed with osteosarcoma her junior year of high school.

Emily Corwin’s Story

Before I was diagnosed, I thought I was in perfect health. In July 2002, my ankle began to hurt. Some days it was swollen and painful, but other days it would feel completely normal. It hurt more frequently at night; I would have excruciating pain and not be able to walk on it. I remember one night crawling to the kitchen for ice, to help the swelling. Sometimes I’d rub my ankle in class and complain to my friends, but they told me I was probably fine. My mom didn’t seem worried either. Sometimes she’d suggest having it X-rayed. It seemed like every time I was ready to go get an X-ray, my ankle would temporarily stop hurting.

I finally went for an X-ray in October 2003 because my ankle was hurting while we were in my hometown in Michigan for my grandmother’s funeral and my family was familiar with that hospital. My sisters were with me, and they encouraged me to go to the doctor. I thought I might as well get it over with, since we were there.

The doctor told me it looked like I had a calcium deposit on my ankle, which is what develops with an unhealed fracture. Strangely enough, there was no evidence I’d had a fracture. The doctor told me there was a very small chance it was a tumor, but the idea that it actually could be one didn’t even run through my mind. They sent me home and said I might want to have an orthopedic surgeon look at the X-ray just to be sure. The stepfather of my sister Cathy’s friend in Michigan is a retired orthopedic surgeon, so Cathy asked him to look at the X-ray the following morning.

Cathy said he told her he’d seen something like this before, and he definitely thought it was a tumor. My family had already made plans for us to travel to Memorial Sloan-Kettering, a cancer treatment center in New York City. It was a rare cancer, and the orthopedic surgeon told my family it was the best hospital in the country for that specific type of cancer treatment. Cathy told me we were going to leave Michigan early and go to New York City to that hospital. I cried for thirty seconds. Then I thought, "I can do this. I’m going to be okay." When my family found out about the tumor, everyone babied me. I worried they would treat me differently.

When Cathy and I returned to my grandparents’ home, I went into the bathroom to be alone. I didn’t want my extended family to find out and get upset until we knew for sure; however, my mom had already told all her sisters. They were sad, but I didn’t want them to be. I remember my mom crying as she hugged me when Cathy and I came into the house. My mom strongly believed I would get better, though, and she tried to remain positive throughout my whole treatment.

Emily making faces – the uh-oh! picture

Photo from Emily’s personal collection

An Adventure

I just tried to tell myself it would be fine—it would be an adventure. My family didn’t have time to sit down and talk about it. We left Michigan and came home to Ticonderoga, New York, then headed to New York City. My mom, dad, and sister Cathy were there with me. We packed enough for about four days. I didn’t say good-bye to my school friends because we were only expecting to be there for three days. When I ended up being there for two months, it was hard not having said good-bye to my friends.

Before surgery, I know it was difficult for my mom. She takes everything so seriously, and I’d never even broken a bone before. She was the one affected the most, and she was in a whirlwind. I wanted to be strong for her; this kept me from crying because I didn’t want to make her feel worse. When we first arrived at Memorial Sloan-Kettering, they did lots of tests: MRIs, X-rays, blood tests, a bone scan, an echocardiogram, an EKG. All these tests were necessary before they could schedule a biopsy. It took four to five days of testing before my biopsy.

Everything was coming at me so fast that I didn’t have time to be scared. It was sad to see all these little kids in the treatment center; I felt like the newbie because I still had all my hair. But Cathy and I joked the whole time, so that helped keep me positive. I didn’t really know what cancer or chemo were even though I’d heard about them. I asked Cathy all kinds of questions that I couldn’t ask the doctor; she was pre-med and a biology major, so she knew things about the treatments.

Before I went into surgery for the biopsy, I was told that if my doctors thought it was cancer they would put a Mediport, a device that allows the medication to be sent directly into my blood system, in my chest. When I woke up from surgery, I felt a pain in my chest, so I knew they had put in the Mediport, which meant I had cancer. I tried to be positive when Cathy told me it really was cancer. I don’t think it really had hit me yet what was happening.

Unconditional Love and Support

During treatment, I tried to communicate with friends as much as possible, but it was difficult to stay in constant communication. Also, I don’t like to talk about my illness, and prefer to focus my attention on others. As a result, my friends never knew the severity of my illness. They knew I lost my hair and threw up, but they didn’t really know why. I could talk on the phone to my best friends and my boyfriend at the time. None of my friends backed away; even people I didn’t know were there for me. They tried to be there as much as they could. My boyfriend came down to visit me right before I lost my hair, and we went to the movies. He was

so supportive. I only saw him a couple of times while I was down there, but the way he treated me didn’t change at all. We dated throughout my entire treatment, although we broke up after I went away for my freshman year of college.

Cathy was able to stay in New York City

Emily and sister Sarah in New York City’s Central Park with me the whole during treatment

Photo from Emily's personal collection

time. My sister Sarah, a schoolteacher in Michigan, came down about once a month. When she came into town, we loved to shop and see new things—like a Broadway show. My dad and my brother, Matt, were also able to visit me frequently. Matt visited me during school breaks and whenever he got the chance. My dad sacrificed a lot and continued to work full time so my mom and sister could stay with me throughout treatment.

My relationship with Cathy became so much stronger because of my cancer. I still call her two or three times a day. We’re constantly in communication. She was the one who was there all the time. When my mom needed a break, my sister would stay with me. She always remained strong for me.

Throughout my fight, my mom repeated the following mantra: "You have to walk forward, one step at a time. Don’t look side to side and never look back. Keep going forward!" We both live by this statement. I always try to recall the positive aspects of my experiences in the hospital.

Absurdities and Uncertainties

When my entire world changed from the typical teenage setting a high school student is familar with to the impersonal and terrifying realm where a cancer patient lives, it was hard to retain my sense of balance and identity. I tried to accept my new reality and appreciate all of its absurdities and uncertainties to the fullest. In fact, I embraced them. My sense of humor remained strong, no matter what was happening in my life. This kept me from developing a negative attitude even though so many things could go wrong from day to day. I created a new world for myself: "normal" had changed. People came into my room at least every three hours during the night to take tests. Interns were doing rounds early in the morning, around 6:00 A.M. I hated when six doctors would come into the room at the crack of dawn without saying hi. They would just turn on all the lights and look at me like a subject.

I wasn’t like everyone else my age: I didn’t have hair, and I was on crutches for a very long time. I endured an intensive round of treatment, which included ten months of chemotherapy. I repeated a three-week cycle: one week of chemotherapy, one week of inpatient chemotherapy, one week of going home—if I felt well enough. I experienced hair loss, kidney failure, high blood pressure, and a blood clot in my heart. I was very weak, and I couldn’t do what others could do physically. To this day, I can’t run, jump, or dance. The isolation was very difficult. I coped by trying to keep myself busy. I went to the movies with my sister. That always made me forget about where I was and about treatment. I loved just going out to dinner and having that period of time away from the medical world I was consumed by.

Why Them?

Becoming friends with other seriously ill patients gave me a chance for real support, but also had its hazards: many of my friends passed away. They were so strong; they made me want to be strong for everyone else. I learned so much from others. I know that my friends who passed away are no longer in pain; that’s been the best way for me to look at it. One lady named Lisa became a particularly close friend to my family. She was older than I was; Lisa had a husband and three children. She lived at the Ronald McDonald House with us so we knew her from the hospital and from there. We went with her to our favorite barbeque restaurant in New York City. She was so funny; she had a thick Southern accent and would say things like "Oh my land!" She and her husband were really cute and always made me laugh. They were new, refreshing people for us to be around.

Joanna was another patient who became a good friend. She was my age, and she began treatment a week or two after I got there. Joanna visited me at my house after we both completed treatment; our moms remained friends as well. Joanna had the same type of cancer I did, but on her spine. We were at the hospital together all the time.

I became friends with a nine-year-old girl, Rachel, who was also staying at the Ronald McDonald House. She’d had cancer when she was younger and it had relapsed. I remember always ordering pizza together for dinner. We hung out with her family; we once went to Chinatown with them.

Rachel and Lisa both passed away. Rachel developed a brain tumor, and Lisa’s cancer kept spreading. We visited Lisa at her house for about five days. She passed away about three days after our visit. I was really sad because she was such a sweet lady, and I had known her for such a long time. But after being there, seeing her so sick, I think she was ready to be done with all the pain, because it was so horrible. I tried to stay positive by thinking how lucky I was to get to know her, and that she had lived a full life. She had a wonderful husband and two beautiful children. My mom still talks to Lisa’s children; they are doing well. It wasn’t too long after Rachel left the Ronald McDonald House that she stopped receiving treatment and passed away. Our families have stayed in contact through e-mail. I had a difficult time coping with Rachel’s death. I couldn’t understand why this little nine-year-old girl who did nothing wrong had to die. Why did she die and not me? It made me want to live my life that much better because I was given a chance to live when others were not.

In My Heart?

One day, Cathy and I had planned on having a relaxing day. We slept in, then went for my checkup. When I had an echocardiogram, the doctors found that I had a clot in my heart. This was hard to understand because my heart wasn’t having any problems. I didn’t know what it meant, but I knew it couldn’t be good. We waited until six o’clock at night for an ambulance to take me across the street, which seems silly, but that’s how it had to happen. It seemed odd to be in the intensive care unit (ICU) as this lively person when there were children in there who couldn’t even breathe.

Because of the blood clot that formed in my heart, I ended up in the ICU twice. My mother remembers the severity of this experience all too well. Everything seemed to happen when my mom went home for a break! I was moved to the ICU and was given medications for twelve hours to thin my blood. A team of doctors evaluated my progress and took frequent images of the clot. I found the doctors overwhelming and frightening, as I didn’t know most of them.

When they gave me the blood-thinning medication, they told me everything that could go wrong. I’m a worrywart, so I was convinced every one of those things would happen. They had to check me every hour by shining a flashlight in my eyes to make sure my brain wasn’t bleeding. I was in the ICU for about five days. When I was finally released, the doctors thought they had eradicated the clot and couldn’t find it at all. I continued to be on the blood thinner after that, which was a shot I had to take every day.

After this stint in the ICU, I had my main surgery to remove the large tumor. I was in the hospital for a week and a half after surgery. Luckily, my operation was a success. They were able to remove the entire tumor, and tested the bone to make sure the cancer hadn’t spread inside of it. This test showed that the cancer hadn’t moved and the chemo was successfully killing the cancer cells.

Soon after, I had a routine echocardiogram that showed another clot. The clot had never affected me; I had no idea it was in my body. But I had to go back into the ICU. I knew what was going to happen this time. The doctors gave me a higher dose of the medication this time, which freaked me out even more. It wasn’t a threateningly high dosage, but I still felt like I was going to die. I didn’t want them to tell me what the bad side effects of the medicine could be, so my sister went in the hall and heard everything. I didn’t want to know what could happen, only what was actually happening.

A migraine is a sign of bleeding in the brain, but I was already getting a headache from stressing out over the medicine. It was driving me crazy. One night I was so stressed, I couldn’t even sleep. I finally told the doctors they had to stop. My mother sat in the ICU watching me teeter on the brink of death. Still, she respected my self-knowledge and told the doctors to halt the blood-thinning treatment. I was scared of dying or having to go into major surgery really quickly, and it became too much for me to handle. I was beyond the point of it helping me because I was too stressed out about it. The doctors were against stopping it, but my sister Cathy told them they needed to. I felt relieved after it stopped. By this point in treatment, I knew to speak my mind and do what was best for me. They did another echocardiogram to look for the clot, but they couldn’t see it. A month or two after I finished chemo, I stopped taking blood thinners. Fortunately, I haven’t had a clot since then.

I also had kidney failure while undergoing my treatment. The medicine I was taking for chemotherapy and the medicine the doctors gave me for my blood infection conflicted. They were given too close together, and this caused my kidney failure. My kidneys weren’t working, so they couldn’t flush out these medicines. That meant they hung around in my body and made me even sicker. The doctors gave me an experimental medicine from Italy to help push it out, and I felt better. I didn’t know this at the time, but if I’d had three more days with no treatment, I would have died. I couldn’t keep any food down. My electrolytes were out of whack. My potassium was too high. I was very pale. I had no idea it was that big of a deal until the nurses talked to me after the fact and told me the whole hospital had been worrying about me.

Laughter Is the Best Medicine

My family was really laid-back about the cancer experience. We weren’t overly stressed. Even during the worst times, we were able to make jokes about the situation. If we were stuck in a hospital room waiting for a doctor for two hours, we played with the equipment, sang, and cracked jokes. We did just about anything to pass the time. We never concentrated on the bad. We laughed about everything, so when I look back now, I have a very positive attitude about the whole experience. Many people have different experiences than I did, because not everyone can make jokes when a person in the bed next to you dies. Of course, it’s not funny for someone to die. However, we needed to protect ourselves. If we took everything seriously, we would have been scared the entire time. Sometimes the best thing you can do during such a traumatic time is to laugh. Our humor was never disrespectful. We used it to remain positive and never got to the point when the idea of me dying dominated our thoughts. My experience in the cancer center definitely made me a more positive person. I saw five-year-olds laughing and smiling who were so sick. If they could do it, I could do it. Also, the child life specialists had such positive attitudes. I joked a lot with other cancer patients. I couldn’t joke with non–cancer patients about the same things, because cancer is such a serious topic.

Even though there were many tough times, I have so many great memories from my treatment. I went to a prom in the hospital after my major surgery. The hospital had someone come to my room to do my makeup. I wore a wig and a

Emily’s prom dress (for hospital’s prom)

Photo from Emily’s personal collection

pretty dress. I was even crowned the Prom Queen. It was fun to see everyone looking pretty and happy.

The "House"

My mom believes that the most important piece of advice for anyone going through a difficult time, and especially parents of a child with cancer, is to stay positive. My mom and I lived at the Ronald McDonald House near the hospital, which offers lodging to children with cancer and their parents. This experience really benefited us by giving us a support group of other families with seriously ill children. For many people, only those who have been through a similar experience can truly counsel and console them.

I stayed at the Ronald McDonald House during my entire treatment. I loved so many things about it. I had my own room and my own kitchen. I loved the staff and all the things the house had to offer: an arts-and-crafts center, a chapel, a playroom with video games, and a dining room where they would host dinners. We could have dinner and hang out with other families. At Christmas, it was presents galore. There were holiday dinners; Santa was there every night of the week. They do so much at that house: There are barbecues outside, lunches for moms, and breakfast prepared every Saturday morning.

The relationships we developed at the Ronald McDonald House have turned into enduring friendships. We became very close to another family. It was nice for my mom to connect with another mom experiencing a similar situation. They would go to a flea market every Saturday that sold fresh vegetables and fruits. They became close enough to share the ups and downs of cancer treatment.

They miss being together because they both went through the hardship of having a child with cancer. They understand one another better than anyone else. They are scared even today, but they can’t live each day paralyzed by fear.

Dad, Emily, and Mom, June 2005 (high school graduation)

Photo from Emilys personal collection

Excerpted from Perseverance by Carolyn Rubenstein.

Copyright 2009 by Carolyn Rubenstein.

Published in September 2009 by Tom Doherty Associates.

All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.

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Table of Contents

Foreword Dr. Henry S. Friedman 11

Introduction: My Story 13

1 Emily Corwin 17

2 Daniel Pack 31

3 Kristen Jones 46

4 Henry Choi 61

5 Katie Zawadzki 78

6 Matt Zinter 91

7 Caroline Bridges 108

8 Amanda Ramsdale 141

9 Zac York 151

10 Dana Smith 164

11 Jamie Saunders 176

12 Caleb Scoville 190

13 Pamela Ledbetter 205

14 Matthew Ortiz 224

15 Christine Novotny 235

16 Monique Valdez 250

17 Alex Oden 261

18 Jessica Myers 273

19 Colleen Clyder 289

20 Rob Dooley 300

21 Survivorship 318

22 Lessons Learned 334

23 The Generosity of Others 345

Appendices

Resources: Organizations Helping Kids with Cancer 361

Medical Glossary 371

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First Chapter

Perseverance

How Young People Turn Fear into Hope-and How They Can Teach Us to Do the Same
By Carolyn Rubenstein

Forge Books

Copyright © 2010 Carolyn Rubenstein
All right reserved.

ISBN: 9780765317797

CHAPTER 1

Emily Corwin

Laughter gives us distance. It allows us to step back from an event, deal with it, and then move on.

—BOB NEWHART

On June 11, 2005, I had my first phone interview for this book. Before I dialed,

I had that nervous feeling in the pit of my stomach. I had prepared questions, but felt as if I were invading someone else’s life. I asked myself repeatedly, "What gave me the right to ask these questions?"

Then I picked up the phone and heard Emily Corwin’s voice. Her words ran fast as she spoke with great excitement and energy. She disarmed me with confidence and humor, which encouraged questions. Emily and her mom, Pat, have been my greatest supporters since day one of this incredible book journey.

Throughout high school, Emily was involved in Spirit of Sound, a women’s singing and dancing group. She played percussion in her school’s band and was involved in school plays. But singing is definitely her favorite hobby. She says, "I love to sing. I never stop singing. When I sat for hours in waiting rooms, I would start singing if I became bored. I would be goofy and funny, but sing. My favorite music is anything acoustic. I love hearing live raw music. My least favorite is hard rock."

Emily’s creative energy and passion for life keep her grounded and connected to her individual self. She doesn’t want to fit a mold and defines her own path with every choice she makes. In school, she never belonged to a clique. Her friends are all very different from one another.

Humor and laughter help Emily to overpower negative thinking. She focuses on what she can do and has faith in herself to overcome adversity. Growing up, Emily attended church regularly, as well as Sunday school. She credits her faith for all the good that occurred during her illness—never the bad. She believes religion creates the basis for how she lives her life. For Emily, every experience has a purpose. The purpose of her cancer experience: to help others.

Emily was diagnosed with osteosarcoma her junior year of high school.

Emily Corwin’s Story

Before I was diagnosed, I thought I was in perfect health. In July 2002, my ankle began to hurt. Some days it was swollen and painful, but other days it would feel completely normal. It hurt more frequently at night; I would have excruciating pain and not be able to walk on it. I remember one night crawling to the kitchen for ice, to help the swelling. Sometimes I’d rub my ankle in class and complain to my friends, but they told me I was probably fine. My mom didn’t seem worried either. Sometimes she’d suggest having it X-rayed. It seemed like every time I was ready to go get an X-ray, my ankle would temporarily stop hurting.

I finally went for an X-ray in October 2003 because my ankle was hurting while we were in my hometown in Michigan for my grandmother’s funeral and my family was familiar with that hospital. My sisters were with me, and they encouraged me to go to the doctor. I thought I might as well get it over with, since we were there.

The doctor told me it looked like I had a calcium deposit on my ankle, which is what develops with an unhealed fracture. Strangely enough, there was no evidence I’d had a fracture. The doctor told me there was a very small chance it was a tumor, but the idea that it actually could be one didn’t even run through my mind. They sent me home and said I might want to have an orthopedic surgeon look at the X-ray just to be sure. The stepfather of my sister Cathy’s friend in Michigan is a retired orthopedic surgeon, so Cathy asked him to look at the X-ray the following morning.

Cathy said he told her he’d seen something like this before, and he definitely thought it was a tumor. My family had already made plans for us to travel to Memorial Sloan-Kettering, a cancer treatment center in New York City. It was a rare cancer, and the orthopedic surgeon told my family it was the best hospital in the country for that specific type of cancer treatment. Cathy told me we were going to leave Michigan early and go to New York City to that hospital. I cried for thirty seconds. Then I thought, "I can do this. I’m going to be okay." When my family found out about the tumor, everyone babied me. I worried they would treat me differently.

When Cathy and I returned to my grandparents’ home, I went into the bathroom to be alone. I didn’t want my extended family to find out and get upset until we knew for sure; however, my mom had already told all her sisters. They were sad, but I didn’t want them to be. I remember my mom crying as she hugged me when Cathy and I came into the house. My mom strongly believed I would get better, though, and she tried to remain positive throughout my whole treatment.

Emily making faces – the uh-oh! picture

Photo from Emily’s personal collection

An Adventure

I just tried to tell myself it would be fine—it would be an adventure. My family didn’t have time to sit down and talk about it. We left Michigan and came home to Ticonderoga, New York, then headed to New York City. My mom, dad, and sister Cathy were there with me. We packed enough for about four days. I didn’t say good-bye to my school friends because we were only expecting to be there for three days. When I ended up being there for two months, it was hard not having said good-bye to my friends.

Before surgery, I know it was difficult for my mom. She takes everything so seriously, and I’d never even broken a bone before. She was the one affected the most, and she was in a whirlwind. I wanted to be strong for her; this kept me from crying because I didn’t want to make her feel worse. When we first arrived at Memorial Sloan-Kettering, they did lots of tests: MRIs, X-rays, blood tests, a bone scan, an echocardiogram, an EKG. All these tests were necessary before they could schedule a biopsy. It took four to five days of testing before my biopsy.

Everything was coming at me so fast that I didn’t have time to be scared. It was sad to see all these little kids in the treatment center; I felt like the newbie because I still had all my hair. But Cathy and I joked the whole time, so that helped keep me positive. I didn’t really know what cancer or chemo were even though I’d heard about them. I asked Cathy all kinds of questions that I couldn’t ask the doctor; she was pre-med and a biology major, so she knew things about the treatments.

Before I went into surgery for the biopsy, I was told that if my doctors thought it was cancer they would put a Mediport, a device that allows the medication to be sent directly into my blood system, in my chest. When I woke up from surgery, I felt a pain in my chest, so I knew they had put in the Mediport, which meant I had cancer. I tried to be positive when Cathy told me it really was cancer. I don’t think it really had hit me yet what was happening.

Unconditional Love and Support

During treatment, I tried to communicate with friends as much as possible, but it was difficult to stay in constant communication. Also, I don’t like to talk about my illness, and prefer to focus my attention on others. As a result, my friends never knew the severity of my illness. They knew I lost my hair and threw up, but they didn’t really know why. I could talk on the phone to my best friends and my boyfriend at the time. None of my friends backed away; even people I didn’t know were there for me. They tried to be there as much as they could. My boyfriend came down to visit me right before I lost my hair, and we went to the movies. He was

so supportive. I only saw him a couple of times while I was down there, but the way he treated me didn’t change at all. We dated throughout my entire treatment, although we broke up after I went away for my freshman year of college.

Cathy was able to stay in New York City

Emily and sister Sarah in New York City’s Central Park with me the whole during treatment

Photo from Emily's personal collection

time. My sister Sarah, a schoolteacher in Michigan, came down about once a month. When she came into town, we loved to shop and see new things—like a Broadway show. My dad and my brother, Matt, were also able to visit me frequently. Matt visited me during school breaks and whenever he got the chance. My dad sacrificed a lot and continued to work full time so my mom and sister could stay with me throughout treatment.

My relationship with Cathy became so much stronger because of my cancer. I still call her two or three times a day. We’re constantly in communication. She was the one who was there all the time. When my mom needed a break, my sister would stay with me. She always remained strong for me.

Throughout my fight, my mom repeated the following mantra: "You have to walk forward, one step at a time. Don’t look side to side and never look back. Keep going forward!" We both live by this statement. I always try to recall the positive aspects of my experiences in the hospital.

Absurdities and Uncertainties

When my entire world changed from the typical teenage setting a high school student is familar with to the impersonal and terrifying realm where a cancer patient lives, it was hard to retain my sense of balance and identity. I tried to accept my new reality and appreciate all of its absurdities and uncertainties to the fullest. In fact, I embraced them. My sense of humor remained strong, no matter what was happening in my life. This kept me from developing a negative attitude even though so many things could go wrong from day to day. I created a new world for myself: "normal" had changed. People came into my room at least every three hours during the night to take tests. Interns were doing rounds early in the morning, around 6:00 A.M. I hated when six doctors would come into the room at the crack of dawn without saying hi. They would just turn on all the lights and look at me like a subject.

I wasn’t like everyone else my age: I didn’t have hair, and I was on crutches for a very long time. I endured an intensive round of treatment, which included ten months of chemotherapy. I repeated a three-week cycle: one week of chemotherapy, one week of inpatient chemotherapy, one week of going home—if I felt well enough. I experienced hair loss, kidney failure, high blood pressure, and a blood clot in my heart. I was very weak, and I couldn’t do what others could do physically. To this day, I can’t run, jump, or dance. The isolation was very difficult. I coped by trying to keep myself busy. I went to the movies with my sister. That always made me forget about where I was and about treatment. I loved just going out to dinner and having that period of time away from the medical world I was consumed by.

Why Them?

Becoming friends with other seriously ill patients gave me a chance for real support, but also had its hazards: many of my friends passed away. They were so strong; they made me want to be strong for everyone else. I learned so much from others. I know that my friends who passed away are no longer in pain; that’s been the best way for me to look at it. One lady named Lisa became a particularly close friend to my family. She was older than I was; Lisa had a husband and three children. She lived at the Ronald McDonald House with us so we knew her from the hospital and from there. We went with her to our favorite barbeque restaurant in New York City. She was so funny; she had a thick Southern accent and would say things like "Oh my land!" She and her husband were really cute and always made me laugh. They were new, refreshing people for us to be around.

Joanna was another patient who became a good friend. She was my age, and she began treatment a week or two after I got there. Joanna visited me at my house after we both completed treatment; our moms remained friends as well. Joanna had the same type of cancer I did, but on her spine. We were at the hospital together all the time.

I became friends with a nine-year-old girl, Rachel, who was also staying at the Ronald McDonald House. She’d had cancer when she was younger and it had relapsed. I remember always ordering pizza together for dinner. We hung out with her family; we once went to Chinatown with them.

Rachel and Lisa both passed away. Rachel developed a brain tumor, and Lisa’s cancer kept spreading. We visited Lisa at her house for about five days. She passed away about three days after our visit. I was really sad because she was such a sweet lady, and I had known her for such a long time. But after being there, seeing her so sick, I think she was ready to be done with all the pain, because it was so horrible. I tried to stay positive by thinking how lucky I was to get to know her, and that she had lived a full life. She had a wonderful husband and two beautiful children. My mom still talks to Lisa’s children; they are doing well. It wasn’t too long after Rachel left the Ronald McDonald House that she stopped receiving treatment and passed away. Our families have stayed in contact through e-mail. I had a difficult time coping with Rachel’s death. I couldn’t understand why this little nine-year-old girl who did nothing wrong had to die. Why did she die and not me? It made me want to live my life that much better because I was given a chance to live when others were not.

In My Heart?

One day, Cathy and I had planned on having a relaxing day. We slept in, then went for my checkup. When I had an echocardiogram, the doctors found that I had a clot in my heart. This was hard to understand because my heart wasn’t having any problems. I didn’t know what it meant, but I knew it couldn’t be good. We waited until six o’clock at night for an ambulance to take me across the street, which seems silly, but that’s how it had to happen. It seemed odd to be in the intensive care unit (ICU) as this lively person when there were children in there who couldn’t even breathe.

Because of the blood clot that formed in my heart, I ended up in the ICU twice. My mother remembers the severity of this experience all too well. Everything seemed to happen when my mom went home for a break! I was moved to the ICU and was given medications for twelve hours to thin my blood. A team of doctors evaluated my progress and took frequent images of the clot. I found the doctors overwhelming and frightening, as I didn’t know most of them.

When they gave me the blood-thinning medication, they told me everything that could go wrong. I’m a worrywart, so I was convinced every one of those things would happen. They had to check me every hour by shining a flashlight in my eyes to make sure my brain wasn’t bleeding. I was in the ICU for about five days. When I was finally released, the doctors thought they had eradicated the clot and couldn’t find it at all. I continued to be on the blood thinner after that, which was a shot I had to take every day.

After this stint in the ICU, I had my main surgery to remove the large tumor. I was in the hospital for a week and a half after surgery. Luckily, my operation was a success. They were able to remove the entire tumor, and tested the bone to make sure the cancer hadn’t spread inside of it. This test showed that the cancer hadn’t moved and the chemo was successfully killing the cancer cells.

Soon after, I had a routine echocardiogram that showed another clot. The clot had never affected me; I had no idea it was in my body. But I had to go back into the ICU. I knew what was going to happen this time. The doctors gave me a higher dose of the medication this time, which freaked me out even more. It wasn’t a threateningly high dosage, but I still felt like I was going to die. I didn’t want them to tell me what the bad side effects of the medicine could be, so my sister went in the hall and heard everything. I didn’t want to know what could happen, only what was actually happening.

A migraine is a sign of bleeding in the brain, but I was already getting a headache from stressing out over the medicine. It was driving me crazy. One night I was so stressed, I couldn’t even sleep. I finally told the doctors they had to stop. My mother sat in the ICU watching me teeter on the brink of death. Still, she respected my self-knowledge and told the doctors to halt the blood-thinning treatment. I was scared of dying or having to go into major surgery really quickly, and it became too much for me to handle. I was beyond the point of it helping me because I was too stressed out about it. The doctors were against stopping it, but my sister Cathy told them they needed to. I felt relieved after it stopped. By this point in treatment, I knew to speak my mind and do what was best for me. They did another echocardiogram to look for the clot, but they couldn’t see it. A month or two after I finished chemo, I stopped taking blood thinners. Fortunately, I haven’t had a clot since then.

I also had kidney failure while undergoing my treatment. The medicine I was taking for chemotherapy and the medicine the doctors gave me for my blood infection conflicted. They were given too close together, and this caused my kidney failure. My kidneys weren’t working, so they couldn’t flush out these medicines. That meant they hung around in my body and made me even sicker. The doctors gave me an experimental medicine from Italy to help push it out, and I felt better. I didn’t know this at the time, but if I’d had three more days with no treatment, I would have died. I couldn’t keep any food down. My electrolytes were out of whack. My potassium was too high. I was very pale. I had no idea it was that big of a deal until the nurses talked to me after the fact and told me the whole hospital had been worrying about me.

Laughter Is the Best Medicine

My family was really laid-back about the cancer experience. We weren’t overly stressed. Even during the worst times, we were able to make jokes about the situation. If we were stuck in a hospital room waiting for a doctor for two hours, we played with the equipment, sang, and cracked jokes. We did just about anything to pass the time. We never concentrated on the bad. We laughed about everything, so when I look back now, I have a very positive attitude about the whole experience. Many people have different experiences than I did, because not everyone can make jokes when a person in the bed next to you dies. Of course, it’s not funny for someone to die. However, we needed to protect ourselves. If we took everything seriously, we would have been scared the entire time. Sometimes the best thing you can do during such a traumatic time is to laugh. Our humor was never disrespectful. We used it to remain positive and never got to the point when the idea of me dying dominated our thoughts. My experience in the cancer center definitely made me a more positive person. I saw five-year-olds laughing and smiling who were so sick. If they could do it, I could do it. Also, the child life specialists had such positive attitudes. I joked a lot with other cancer patients. I couldn’t joke with non–cancer patients about the same things, because cancer is such a serious topic.

Even though there were many tough times, I have so many great memories from my treatment. I went to a prom in the hospital after my major surgery. The hospital had someone come to my room to do my makeup. I wore a wig and a

Emily’s prom dress (for hospital’s prom)

Photo from Emily’s personal collection

pretty dress. I was even crowned the Prom Queen. It was fun to see everyone looking pretty and happy.

The "House"

My mom believes that the most important piece of advice for anyone going through a difficult time, and especially parents of a child with cancer, is to stay positive. My mom and I lived at the Ronald McDonald House near the hospital, which offers lodging to children with cancer and their parents. This experience really benefited us by giving us a support group of other families with seriously ill children. For many people, only those who have been through a similar experience can truly counsel and console them.

I stayed at the Ronald McDonald House during my entire treatment. I loved so many things about it. I had my own room and my own kitchen. I loved the staff and all the things the house had to offer: an arts-and-crafts center, a chapel, a playroom with video games, and a dining room where they would host dinners. We could have dinner and hang out with other families. At Christmas, it was presents galore. There were holiday dinners; Santa was there every night of the week. They do so much at that house: There are barbecues outside, lunches for moms, and breakfast prepared every Saturday morning.

The relationships we developed at the Ronald McDonald House have turned into enduring friendships. We became very close to another family. It was nice for my mom to connect with another mom experiencing a similar situation. They would go to a flea market every Saturday that sold fresh vegetables and fruits. They became close enough to share the ups and downs of cancer treatment.

They miss being together because they both went through the hardship of having a child with cancer. They understand one another better than anyone else. They are scared even today, but they can’t live each day paralyzed by fear.

Dad, Emily, and Mom, June 2005 (high school graduation)

Photo from Emilys personal collection

Excerpted from Perseverance by Carolyn Rubenstein.

Copyright 2009 by Carolyn Rubenstein.

Published in September 2009 by Tom Doherty Associates.

All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.



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